This post is a post celebrating a friend of mine I met at Maple Plain Community Church in 2020: Claire Benway! Claire loves Jesus and is a cancer thriver like me–instead of breast cancer, though, Claire is a non-Hodgkin-lymphoma thriver. Claire was diagnosed with non-Hodgkins-lymphoma in March 2024, finished intensive chemotherapy 6 months ago, and just last week had her 1-year-from-diagnosis scan that will tell her what comes next!
Claire Benway is a zealous, Jesus-loving wife, mama, daughter, sister, and friend who is nominated for the 2025 Leukemia & Lymphoma Society Visionary of the Year campaign. She is an inspiration to me and so many others, and I wanted to publish this post to celebrate her amazingness and her campaign to become the 2025 Leukemia & Lymphoma Society Visionary of the Year!
Claire and I got to sing with the worship team at MPCC in April 2025!Claire singing at MPCC in April 2025!
And, here’s Claire’s story–or at least the part of it I’ve been blessed to experience!
Here I am with my son, Zephaniah, and Claire at Maple Plain Community Church a week after her diagnosis. She came to church weekly through her treatments and it is always such a joy to see her!!!
Claire’s Visionary of The Year / Lymphoma Thriver Story
I am a couple of years behind in my own personal breast cancer survivorship updates as I’m now into year 5 of survivorship and my last blog post highlighted my 3-year-survivorship screening. I’m praising the Lord as I’m still in remission / all clear!, but a lot has happened in the past 2 years of my cancer survivorship journey, including Claire’s diagnosis last spring (more detailed about my journey to come–this one’s all about Claire!).
I first met Claire when she was the leader of a Bible study I joined in 2020, in the middle of my family’s journey through breast cancer. She was a bold and beautiful Bible study leader who never shied away from any of the study’s hard questions!
Claire’s cancer journey has inspired me in more ways than one. The first inspirational point came in the miraculous way she was diagnosed. In March 2024, Claire was diagnosed with non-Hodgkins-lymphoma while on spring break with her husband, parents, and two kiddos in Georgia. She’s always living large and moving at breakneck speed for Christ and His Kingdom, but spring break 2024 allowed her to slow down long enough to know she needed to get checked out!
Her lymphoma diagnosis rocked my world in a jarring way with a middle of the night text message in March 2024. She was on spring break when she began to feel super sick and got admitted to the ER in Georgia. She found out there that she had non-Hodgkin-Lymphoma, and immediately activated her prayer warrior network which I was thankful to be part of!
Her chemotherapy started shortly after she returned to Minnesota after spring break. Here is her diagnosis story, originally posted in her “Row the Benway’s Boat” Facebook group:
For the last few months I have been experiencing abdominal bloating and discomfort. Finding slight relief with otc meds but it always came back. I set an appt with my clinic first available was a video visit in August. While on vacation for spring break with my parents and the kids to visit my Uncle Mike in Savannah my symptoms became unbearable. Of course if you know me I have a rule of no one being aloud to be sick. I hold it is still a good rule and I will be reinstating it after I have kicked cancer. My discomfort escalated quickly while on vacation and my mother insisted I call the nurse line and demand to be seen now. Of course I listened to my mother because they are usually right the nurse said to not pass go do not collect $200 and go directly to the ER. I conferred through years of frustration and with my uncle Mike (who solidified his status as my favorite uncle in the last week) and he accompanied Micah and I to the ER Thursday afternoon around 3:30. We waited a few hours in the ER and then were sent for and abdominal CT Scan around 9:30 pm that night and that’s when I got the preliminary news about from the ER doc that it was most likely a lymphoma. I was admitted to the hospital (move to a room not the ER) got a room early morning 3am on Friday. We spent the next day with that preliminary diagnosis and waiting to on oncology. I had a biopsy of a lymph node in my groin as the ones in my abdomen were to “risky” to biopsy. That was sent off and results will be in most likely on Tuesday. The oncologist is very confident it is stage 2 non Hodgkin’s Lymphoma. (Yeah?🤷🏻♀️) apparently it’s the best worst case scenario. Originally we had thought we would stay in Savannah as I start treatment directly after the results came back from the biopsy. As the doctors in Savannah were not happy to let us go without a team up north. The thought was that I would start chemo and then after that first dose that would give us time to find an oncologist in Mn. But that changed when they said if we start the first chemotherapy in Georgia I would be staying all the way through the first cycle. So that means almost 40 days. With that information we were much less inclined to be away for that long. Our very good friend Melissa is a Doctor liaison for MN Oncology we called her up and she got us a doctor in 4 mins (more on that amazing story another time.) God is good. So since Savannah Doctor was hesitant to let us leave without a Doctor lined up and now I have a Doctor Lined up. She said great you have until the scan comes back to get back to MN. She was happy we are able to drive rather than fly, and prescribed pain meds for the road.
Air travel to risky with my “way to large spleen” that may not like the extreme pressure changes. Also if I get the Rona or the flu treatment will be pushed back further So We Ride! In the mini van and will be back in Minnesota hopefully late Sunday the 1st. I will kick off April with be a week of appts. Getting a port for chemo PET scan for insurance purposes. (That’s an interesting thing) and then plotting out the rest of my what will most likely be 6 rounds of chemo. Each one about 3-4 weeks apart. Typical lymphomas are very responsive to chemo as it’s basically targeted medicine. I will find physical pain relief after that first course as that will be when everything starts to shrink. And I stop looking like I am 7 months prego. Which apparently my best friend was going to ask me about after this week if I had not “come clean”
Thank for all your thought and prayers. I can only say that the following things are Gods Devine plan and all the glory goes to him.
1. We had nothing to do this week but focus on each other allowing for me to realize how bad I felt.
2. We were surrounded by family who were quick to support and hold us in their arms.
3. One of those family members had many medical connections and was able to guide us on this dark and murky path.
4. Placement of loved people in our lives who were able to mobilize and find a doctor so fast.
5. A massive network of prayer warriors who reacted instantly to the call.
Claire serving lunch at a MN Adult and Teen Challenge Potluck in May 2024!Claire with her dad, Mark, serving lunch at a MN Adult and Teen Challenge Potluck in May 2024!A “Wild Claire” selfie in front of Maple Plain Community Church in April 2025 with Selah, Mandy, Micah, Pat, and Mark!Claire, Kylie, and me at MPCC in April 2025, a couple of weeks after her diagnosis! I made it a personal goal of mine to take “Wild Claire” photo sightings from around church!
Claire is a Jesus Loving Prayer Warrior
The second inspirational point about Claire’s journey is her trust in the Lord in and through it all. Claire and her husband Micah launched a Facebook group (“Row the Benway’s Boat”) and organized a Prayer Team immediately after her diagnosis in March 2024. The Prayer Team prayed diligently and daily for months, leading up to and through her chemotherapy treatments, via Zoom call.
Many of our Maple Plain Community Church friends were on the call and beyond, and I was able to join several prayer calls. Every time I joined to pray, I cried. I cried because I was sad about Claire’s diagnosis, but I was also grateful she was diagnosed so she could move forward with a clear treatment plan; I trust the Lord Jesus as our healer, redeemer, and friend, but learned in part from Claire’s diagnosis and those prayer calls that even though Jesus is our healer, redeemer, and friend, those truths don’t mean it will be easy to accept the realities of suffering we experience this side of heaven–especially when suffering happens to those we love.
I have a friend who told me that the Holy Spirit is moving when we let the tears flow–not only that, but when we cry, tears have medicinal healing properties for our skin (!). This helped me to be encouraged rather than discouraged by my tears, and I was reminded also how grateful I was to be part of a priesthood of all believers (1 Peter 2:9). I wasn’t the only one crying on those prayer calls, and I was thankful to be able to celebrate God’s faithfulness as he healed Claire in and through chemotherapy and whatever other means He would choose. What a gift to surrender our anxieties to the Lord in prayer, trusting He is working all things together for the good of those who love Him (Romans 8:28)!
Then, last week, after completing 6 months of chemo 6 months ago, Claire had her 1-year-from-diagnosis scan that will tell her what comes next! As Claire posted in her “Row the Benway’s Boat” Facebook group last week:
I will find out the results next week as well as start to make the next plan. Hopefully that plan is “go and get back in shape for more adventures” but if it’s not God I am sure will provide clarity in what is next. For God is the sustainer of life. I will trust in the Lord.
Claire with her mom, Pat, before the 2024 MPCC Christmas Play!Claire focusing on her director duties during the 2024 MPCC Christmas Play!Claire focusing on her director duties during the 2024 MPCC Christmas Play!Claire on stage at the 2024 MPCC Christmas Play she directed!
Claire is a Thespian + Bible Study + Youth Leader Extraordinaire (does she ever stop moving??)
The third inspiring point about Claire’s cancer journey is that, while I know there were difficult moments and will continue to be–cancer survivorship is no walk in the park!–Claire never let her lymphoma diagnosis in March 2024 slow her down.
Like I mentioned earlier in this post, I met Claire in 2020, and she was one of our Bible study leaders as my twin sister and I battled breast cancer.
After Claire’s diagnosis with NHL in 2024, in addition to volunteering at every church event you can think of, Claire endured intensive chemotherapy treatments while leading weekly rehearsals for Maple Plain Community Church’s annual youth play–a dramatic production that involved 100+ actors and volunteers who put in hours and hours of work. Under Claire’s direction, the MPCC theater team pulled together an incredible play with 2 performances for full crowds!!
Claire is also a Youth Leader at Maple Plain Community Church. She went to Belize with the Youth Group during her chemotherapy treatments, too (what?!?!?!!??!!). How many of us would go to Belize as Youth Group leaders in general, let alone shortly following a cancer diagnosis / during treatment?!!? WOW.
Not to mention her hiking trip in the Grand Canyon (which she did an abbreviated version of while on treatment), full-time job at the University of Minnesota, parenting two teenagers, and her frequent appearances on Maple Plain Community Church’s worship team. We got to sing together this weekend and it was SO. MUCH. FUN!!! You can see photos of us in the galleries below and watch the full service at this link and posted below. 🙂
Claire and I got to sing with the worship team at MPCC in April 2025!Claire singing at MPCC in April 2025!
Claire’s Vision for a Lymphoma Cure & Beyond!
Claire is a visionary in more ways than one. She inspires me every day with the way she loves God and loves others, and I can’t wait to see how she continues to change the world!!! Her cancer journey is a chapter in her story God is writing. She is fearfully and wonderfully made and we are all blessed to know her!
To close, here are some photos we took together at a Maple Plain Community Church worship rehearsal last week. God is good and I’m so thankful the joy of the Lord is Claire’s strength!!! <3 Her zeal is contagious!
“Let’s try to jump up and down for a photo!”“Did that one work out?!”“Charlie’s Angels!”“Charlie’s Angels! Again!”Mandy, Claire, and me at MPCC worship rehearsal!
This blog post is the 46th in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram, see us in a 2022 news story on KSTP-5 at this link, and learn more about our dad’s work with the American Cancer Society at this link.
On December 3rd, 2022, I officially became a 3 year breast cancer survivor! On Friday, June 16th, I passed the 3.5 year mark with “no signs of malignancy!” Not only that, but my sisters and me and my husband Chris got to bring all 3 of our babies for our breast cancer doctor to meet her in person at the same time! Cue comments in the lobby and clinic including, “We love babies here!,” and, “Look at their cute matching pink shirts!”
In some ways my breast cancer diagnosis feels like just yesterday. In other ways it feels like forever. In the past few months, as I’m moving toward year 4 of survivorship, I’ve had friends and loved ones experience breast cancer recurrences, new cancer diagnoses, biopsies, and going home to be with Jesus.
Every time I hear news that someone close to me has cancer, my breath catches in my chest and I remember my twin sister’s boss’s reaction to her diagnosis: “This is so unjust!”
Cancer diagnosis, treatment, and survivorship is hard. I admitted this to my husband through tears when we got home from Mayo yesterday. Every time I have an ache, pain, headache, or unsettling feeling, I wonder, “Is my cancer back?” My twin sister feels the same way, as do thousands of other survivors around the world. As a follower of Jesus, I know these fears and anxieties are invitations to surrender and trust that God is good and sovereign over my body, health, and circumstances–but that is much easier said than done!
So, to make navigating survivorship a little less hard, I know God has given me family, friends, and prayer warriors to help encourage me and my sister and my family along the way! I thanked my baby sister for bringing her daughter and driving us down to Rochester, and she told me, “I know it’s hard, but at least we have each other!”
And, as a pastor said at a family friend’s funeral last week: “God works mightily through people around us to bring us rest for our weary souls, hope for future, and strength to carry on.”
“Mayo is an emotional place,” my husband told me.
Here are the praises + prayer requests from my 3 and 3.5 year breast cancer survivorship appointments, and highlights in detail below!:
Here we are at Mayo in November 2022 with Jess!
Praise!: One of my best friends from college got to come into my MRI with me at Mayo Clinic in November 2022 and my twin sister Steph came along to my appointment, too! That was fun! And, there were no concerning findings on MRI. Praise God!
Here we all are at my June 2023 breast clinic checkup with all the babies!
Praise!: I got rear ended in February 2023 with Steph, her 2 week old son Harold Robert, and my 15 month old son Zephaniah in the backseat. All the babies were fine, Praise God, Steph had a few floaters in her eye that went away, and I got whiplash, but chiropractic and massage helped with that! then I was worried the seatbelt possibly ruptured my implant, but got an ultrasound at my visit in June and there were no concerning findings there either! Praise the Lord!
Praise!: Working with one of the top breast clinic doctors at Mayo Clinic Rochester has its perks–somehow, she pulled strings to get me an ultrasound the same day of my visit right after I was finished meeting with her and having my physical exam! I went right to ultrasound after my physical exam and got the all clear from radiology–no rupture and no concerning findings, YAY!
Even though cancer screenings and survivorship are stressful, it’s a joy to be able to travel to Mayo all together!
Prayer Request: For clear scans and protection / deliverance from cancer forever! We met a woman named Janet at Mayo yesterday who told us how cute our babies were. We shared stories and found out her sister died of ovarian cancer a few years ago, and now she has ovarian cancer, too. She’s in chemotherapy and her prognosis is good, but it was a sobering reminder of the importance of all of us sisters getting screened at Mayo every 6 months–to ensure we catch any problematic findings as early on in our journeys as possible and, ideally!, that we’d never find cancer again, ever!
Here are some highlights from the past 6 months–including my 3-year MRI followup scan, the babies going to Mayo for the first time 🙂 and celebrating God’s faithfulness through the life of a family friend and breast cancer warrior, Jackie!
Our Breast Cancer Doctor Gets to Meet All 3 Babies!
My twin sister’s mother in law was diagnosed with breast cancer this spring. I went along to take notes at her intake appointment at Mayo Clinic, where she was blessed to work with the same doctor that has guided my sisters and me through our breast cancer journeys. My sister’s mother in law was so excited to share pictures of her grandson Harold (you can read all about him in this post!), and at the appointment, our doctor looked at me and said, “Let’s see if we can get all 3 babies down here for an appointment at the same time!”
“Okay!” I said.
So, for my 3.5 year survivorship appointment on Friday, June 16th, we all went–with all 3 babies! There was traffic on the way and on the way back, some tears and screams from the babies, but our doctor and the nurses, techs, and patients we ran into during our visit loved it!
It was slightly stressful and difficult to convince all 3 of my sisters, my husband, and all 3 babies that it was a good idea to go all the way there and back, but if I was sold out to make this happen and am so glad that it did! I’m so thankful everyone was healthy and happy and the weather was good–I was praying and praying that God would grant all of my requests (Psalm 20 🙂) and He certainly did!!!! Not only for the joy of my sisters, husband, and babies visiting our breast cancer doctor but also for an “all clear” report on my implants / chest!
If I could live my entire life with these sort of grandiose gestures every day, I would 🙂
A 3-year MRI check on my foobs
My 3 year survivorship appointment in November 2022 was uneventful–in all the best ways!–except for the fact one of my best friends from college, Jess, got to come into the MRI room with me, which was amazing!! I didn’t know that you could bring friends in until my baby sister brought her husband in with her because of her severe anxiety, so I asked if I could bring Jess in with me because of my anxiety, and she came in, too!
As an ICU nurse, Jess is familiar with medical procedures and protocols, but this was the firs time she got to go into an MRI! We chatted through my scans and at my appointment with my doctor after finding out that everything looked good, praise the Lord! They sent me away to see me again in 6 months for another clinical exam and on the way home we got some of my favorite gluten free donuts in all the land from Drift Dough.
Jess also heard us play the piano, we took photos by Mayo’s beautiful chandeliers, and then, that weekend, we got to celebrate Steph, Paul, and Baby Harold Robert at a baby shower all together! Yay!
After my Mayo checkup, we got to celebrate Steph, Paul, and Baby Harry with lots of family and friends–including Jess, Britt, and their mom Sharon! Here are all of the ladies from our families 🙂
3.5 year checkup + ultrasound for rippling implants & chest pain
Like mentioned above, in February, I got rear ended in February 2023 with Steph, her 2 week old son Harold Robert, and my 15 month old son Zephaniah in the backseat. All the babies were fine, Praise God!, Steph had a few floaters in her eye that went away, and I got whiplash, but chiropractic and massage helped with that!
Then, I was worried the seatbelt possibly ruptured my implant because I was experiencing pain on the left side of my right implant by my sternum and noticed some kind of significant rippling I hadn’t seen before. I told my doctor all about it, she did a physical exam and said that, while she felt the ripples, things felt “reassuring,” and she ordered an ultrasound to investigate further.
There were no concerning findings on ultrasound either, Praise the Lord! The ultrasound tech looked all around the implant and said the radiologist gave me the “all clear” with the understanding that, if there were something going on behind the implant, only an MRI would show that, but that things looked good on ultrasound for the moment, yay!
Good results from my ultrasound, yay!All set in the Breast Clinic changing room for my ultrasound!Waiting for good results from radiology!
If there had been a rupture or a leak, they would have seen it on ultrasound, and sent me to plastics to figure out how to fix it. My doctor said implants can last 20 up to 50 years, though (she wouldn’t recommend 50 years, haha), and that rippling can occur with weight loss, too, which I experienced during COVID in December 2022.
And so, even though I experience some pain in my chest during my cycles every month, have some ripples in my implants, and was worried the car accident caused my implant to rupture, I’m all clear! My doctor said my sternum may have been bruised slightly from the seat belt impact and that lifting lighter weight when it seems irritated is a good approach to take.
Next up for me is another 6 month check at the breast clinic in December 2023. Then, I get to see my gynecological oncology team at Mayo in August to make sure my ovaries check out okay! Here are highlights from my most recent and upcoming visit with gynecological oncology at Mayo!
Arriving at Mayo for my gynecological oncology update–alone for the first time ever because my twin sister was in labor about to give birth in the Twin Cities!!
Chemical pregnancy / miscarriage + ovarian screening
My most recent gynecological oncology checkup at Mayo was on February 8th, 2023, the same day that Steph gave birth to Harold Robert (birth story in this blog)! She was in her 3rd day of labor in the Twin Cities when I left for Mayo–as soon as I got back to the hospital, she pushed Harold out! All that to say, it was a very invigorating yet exhausting day I was incredibly grateful for–it was the first day that anyone in our family ever went to Mayo Clinic for an appointment alone! I kept myself busy and the anxiety at bay with constant updates about Steph’s labor and delivery journey via text and phone calls and prayers with and from friends and family.
My Mayo team is watching a “1.4cm simple right paraovarian cyst” that is “benign-appearing.” I’m grateful it’s not concerning for the moment!
Ironically enough, my gynecological oncology team said (again, because they’ve told me before!) that pregnancy is one of the biggest mitigating factors for ovarian cancer risk. The evidence behind this is because the more you ovulate, the higher your ovarian cancer risk is; the less you ovulate, the lower your ovarian cancer risk. When you’re pregnant, you don’t ovulate!, so we will see what God has in store for us down that road.
As with most things in life, pregnancy is ultimately out of our control. We have friends who are going through several rounds of IVF; we’ve walked with friends through miscarriages; and then, in October 2022, we experienced a chemical pregnancy / miscarriage firsthand.
I had a “chemical pregnancy” / miscarriage in October and found out that this occurs in 1 of 4 conception stories: A woman conceives, but the pregnancy never implants in the uterus or stops developing in the first 5-6 weeks and is then passed in a monthly period (also known as “early pregnancy loss”). Most women sometimes never know that this type of pregnancy happens to them, but I did–because we got a positive pregnancy test early on but then lost the pregnancy which was confirmed with an hcG test at my local OB clinic.
I never thought a miscarriage would happen to me, but then again, I didn’t think I would get breast cancer either! It’s been hard for Chris and me to process our loss knowing what a joy it would be to have another kiddo plus be pregnant to mitigate ovarian cancer risk, but it is also encouraging for us as a reminder that God loves us and has everything in His control. His timing is perfect and is never late–it just wasn’t the right time for us to be parents again yet!
I also learned that birth control pills are another option to decrease ovarian cancer risk because they stop you from ovulating, so your ovarian cancer risk decreases on birth control pills. However, birth control pills also increase your estrogen, which increases breast cancer risk. Not to mention they keep you from getting pregnant. With that said, my care team(s)–both gynecological oncology and breast clinic–agree that birth control pills are probably not the best option given my risk factors!
So: Because my polycystic ovarian syndrome (PCOS) doesn’t help with me getting pregnant, my gynecological oncology team said that they’d plan to give me a referral to Mayo Clinic’s Reproductive endocrinology and infertility team as needed down the road.
I asked my breast clinic doctor for her thoughts on hormonal fertility treatments and IVF in light of my breast cancer recurrence risk factors, and she paused before she said:
“That’s a good question. That’s tough. Once you hit year 5 of survivorship, it’s a good sign you’ll never have to deal with breast cancer again. Hormone treatments for pregnancy carry a slight increase in recurrence risk because of the extra hormones…but you should be fine. See if you can ‘get lucky’ without it, then why not get started with something later this year?”
Mitigating ovarian cancer risk while managing breast cancer recurrence risk is all very overwhelming, but we are grateful for God’s faithfulness, guidance, and the wisdom of my doctors! We will see what Jesus has in store for us and our family!
On the way to my ovarian screening checkup taking a selfie with the tiger. Keeping the eye of the tiger through all of this!!!It was a bright clear day at Mayo that day and I walked to lunch at Chester’s to eat by myself while waiting for my afternoon appointment!
A tribute to breast cancer warrior Jackie Eastman
One of my dad’s best friends from high school lost his wife, Jackie, to breast cancer two weeks ago. My dad, mom, and me went to her celebration of life service at Mount Olivet Lutheran Church in Edina, Minnesota, where her entire family went to church and where she grew up going to church. It’s the largest ELCA congregation in the nation, and it was a beautiful service inside of a beautiful sanctuary.
Jackie passed away early the morning of Memorial Day–Monday, May 29, 2023–around 2am CST. I was in Toronto for the International Communication Association (ICA) 2023 Conference, where I received the Journalism Studies Division’s Outstanding Dissertation Award for my work on “The Institutionalization of Solutions Journalism.” I woke up suddenly in my hotel room at 2am Toronto time and laid there. I couldn’t go back to sleep, so I prayed until just after 3am Toronto time, when I finally fell asleep again. That never happens to me!
Then, the next morning, I got a text from my dad, and knew why I’d woken up in the night–Jackie had passed away just before 2am CST, which is the exact same time I’d woken up in Toronto. I believe Jesus woke me up to pray and to celebrate that Jackie was on her way to heaven where she would suffer no more! I thanked God for His faithfulness in waking me up to pray, and thanked God that Jackie got to go to meet Jesus after 2 1/2 weeks of hospice!
While I never met her in person, Jackie was an inspiration to me as she wrote a beautiful blog at this link that her family carried on into a CaringBridge site when her recurrence happened in spring 2023. Her daughter said blogging was a way for her to wrestle with life’s hard questions, celebrate God’s faithfulness, and to process everything she was going through with cancer.
The graceful way Jackie showed Jesus’s love to everyone around her even as she entered hospice was an incredible inspiration to me, and I cried tears of joy and gratitude through most of her funeral. Words used to describe Jackie at her celebration of life included curious, generous, selfless, and abiding in the goodness of God.
While we never chatted in person, I commented on Jackie’s breast cancer blog posts and Jackie commented on mine. Most memorably, when we faced Steph’s potential recurrence in February 2023 that ended up being benign nodular adenosis, Jackie encouraged us as she faced a recurrence of her own:
“I have been praying for you constantly. I am also waiting on tests as doctors are concerned I have more cancer . I have been listening to this song – I hope it encourages you as it did me:
God is in the waiting …
And, this “happened” to be in my inbox today – “Peace & Insight for Today by Susie Larson on January 22nd, 2023. May you pause today to remember that your journey is as sacred as the destination. Whatever next place God has for you, He intends to meet you in this place, where you now stand. He’s hidden treasures in the valleys and grace in the shadows. He offers rest amidst the chaos and peace in the middle of the storm. Instead of wishing your life away, pause today and pray, ‘Lord, open my eyes to see You here. Help me to extract the previous from the difficult. Help me to embrace the everyday graces You’ve so richly provided. May you find joy today simply knowing that you belong to a loving, invested, attentive Savior and He intends to get you safely home. Ephesians 6:23 NLT: Peace be with you, dear brothers and sisters, and may God the Father and the Lord Jesus Christ give you love with faithfulness.”
When we received and shared Steph’s good news, Jackie celebrated and encouraged us with her whole heart:
Soooo happy for YOU !!! Love those FULL BLOWN miracles !!
And, when I told her that one of her blog posts about Joshua trusting God’s promises in Numbers 13 + 14 so encouraged Steph in her waiting for biopsy results, she said:
I am so glad ! That’s a blog from years ago – so that makes me so happy it was helpful to you during your last challenge ! Now you can focus on that beautiful child that God has gifted you with
And so, even though Jackie received news of a recurrence and would meet Jesus face to face only weeks later, her encouragement to focus on our beautiful children brought me to tears. The ability we have to be mothers is a miracle, and seeing Jackie’s legacy carried on in her husband of 43 years, two sons, one daughter, and nine grandchildren is awe-inspiring.
There were many inspiring moments throughout Jackie’s celebration of life, including mentions of her strong faith, how she grew in her relationship with Jesus every day, and had a great marriage of 43 years that resulted in a strong family of 3 kiddos and 9 grandchildren.
The response to any gift is gratitude. Life is a gift we didn’t deserve or earn. Jackie was a gift. The appropriate response to a gift is to be grateful. Even in grief we celebrate her life… we walk in the way of gratitude.
As a benediction, the pastor stated: “God’s steadfast love endures forever; His faithfulness endures to all generations; and in the hope of Jesus Christ we give thanks!”
The pastor also prayed that God would “fill us with your peace that surpasses understanding and fill us with memories of joys shared.”
I though that was a beautiful prayer–for peace and, while acknowledging our grief, to also cling to memories of joys shared. I celebrate Jackie’s memory and legacy and hope and pray my blog can encourage others going through hard times like hers encouraged my heart. I also hope I can leave a similar faith-filled legacy among my children, family, and friends.
Lessons Learned from Jackie’s Life and Legacy
On a lighthearted note, according to Jackie’s sons, the advice she gave all of them when she found out she’d be going to hospice–that I’ve taken to heart since hearing!–was:
“Go on vacations you can’t afford, and buy a dog.”
Two songs that her sons mentioned memorialized her for them include “My Song Will Never Die” by Luke Combs:
And “Mama Raised the Hell Out of Me” by Mitchell Tenpenny:
Jackie also gave each of her kiddos a devotional about trusting God in hard times “even though she was the one battling cancer.”
Verses shared throughout the service included Luke 12:15: “Life doesn’t exist in abundance of possessions … generational faith is more important than generational wealth;” John 14:1-6; 2 Timothy 4:7-8, read by one of her granddaughters; and Proverbs 31: “Her children arise and call her blessed…a woman who fears the Lord is to be praised.”
According to Jackie’s son, her final words the night she passed were “I’m up there!” as she raised her right hand and pointed to the sky.
She came to know Jesus at Cathedral of the Pines camp in Lutsen, Minnesota, and that’s where she met her husband, Eric, the summer after 7th grade before they got married right after college and were married for 43 years. According to her kiddos, they went to Lutsen every summer, and Jackie always wanted to encourage her kiddos in life, love, and relationships. She never lost sight of God’s goodness even and especially in suffering, and for that, I am so grateful to have her as a role model!
As her pastor said during her celebration of life service:
Jesus weeps with us and he grieves with us. As Jackie lived out and believed, the heart of the Gospel is a God who suffers for and with us. A crucified Christ who suffers for and with us. This is how He helps us: through the power of suffering love. So instead of removing it, He shares it. Instead of overcoming our pain, He promises we won’t be alone. He works mightily through people around us to bring us rest for our weary souls, hope for the future, and strength to carry on.”
Another encouraging reminder at Jackie’s celebration of life service was that abiding in Christ (my life verse, John 15!) is the best way to live in gratitude.
The pastor told us that, when Jackie ended up in the hospital with her recurrence, she said: “How could I say this isn’t fair? If someone had told me this is how my life would end at 65, I’d say, ‘Sign me up! I’ve been so blessed!’”
I don’t know how many days I have left earthside, but I take immense comfort and joy knowing and trusting that all of my days are already determined and known by God and God alone (Job 14:5). Taking this truth into consideration, I frequently ask God to teach me to number my days carefully so that I might develop wisdom in my heart (Psalm 90:12). Beyond that, I know that no conversation, relationship, opportunity, or situation is an accident–as Charles Stanley preached one time on the radio, when you come to Christ, every moment thereafter is ordained to glorify Him.
So here I am, in year 3.5 of survivorship, trusting the Lord will bring us all home in his perfect timing, and thanking God for the blessing of Jackie and others who have gone to meet Jesus after courageously battling cancer, trusting that Jesus is walking with us every step of the way! And also, to remember:
“You are special and so deeply loved.
Jackie Eastman
Beautiful sanctuary at Mount Olivet Lutheran Church in EdinaMy mom, dad, and me at Jackie’s celebration of life service–smiling knowing she has fullness of joy with Jesus now 🙂Beautiful exterior of Mount Olivet Lutheran Church in Edina!
Next Steps
Ovarian Cancer Previvor Screenings: On August 18th, 2023, I’ll go back for another 6 month checkup for ovarian cancer screening. They will do a CA-125 blood test, pelvic ultrasound to take a look at everything and make sure it all looks good, and send me on my way. In the meantime, one of the best ways to prevent ovarian cancer is pregnancy–so we’ll see what God has in store!
Breast Cancer Survivorship Screenings: I’ll call Mayo in September to set up my next screening which will be in December 2023. I asked my doctor how often I will come every 6 months, and she told me, “usually it’s for 5 years, but we can arrange to spread that out if that’s more convenient for you,” and my sister said “No, I think AJ wants to come see you every 6 months for the rest of her life!” I agreed and we all laughed.
Breast Cancer Previvor Screenings for Jennifer: Jennifer will head back to Mayo in August 2023 for her 6-month previvor check! I still owe you a post about her previvor updates and new baby girl Madden Jane which is hopefully coming soon 🙂
Thank you so much for your prayers!!! God is good all the time and all the time God is good!
This blog post is the 46th in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram, see us in a 2022 news story on KSTP-5 at this link, and learn more about our dad’s work with the American Cancer Society at this link.
This blog post is the 45th in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram.
My nephew Harold Robert is our most recent miracle story! He was born at Maple Grove Hospital on Wednesday, February 8, 2023, weighing in at 7 pounds 10 ounces and measuring 21.26 inches!
Here are his adorable “First Day Photos!”
And, like stones of remembrance in the Bible–laid by Jacob after he wrestled with God in Bethel in Genesis 28:10-22; Samuel after the victory against the Philistines in 1 Samuel 7:7-12; and Joshua in the Jordan River as he headed to the Promised Land in Joshua 3-4–I wanted to design this blog post in a way that gives thanks for God’s goodness to Steph through her breast cancer journey. Every heartbreak strengthened and enabled her to become a mama to one of the cutest boys in the whole wide world! Reminding us that blessings in life often come through struggles and challenges.
As a pastor shared at a family friend’s funeral last week:
“The heart of the gospel is a God who suffers for and with us…a crucified Christ who suffers for and with us. This is how He helps us: Through the power of suffering love. So, instead of removing it, He shares it. Instead of overcoming our pain, He promises we won’t be alone. He works mightily through people around us to bring us rest for our weary souls, hope for the future, and strength to carry on.”
There have also been incredible miracles along the way–not least of which has been a year-long sponsorship for Bobbie formula, one of the most amazing gifts both me (for my son Zephaniah in 2021!) and my twin sister Steph have ever received! Harold loves his Bobbie and chows down on the daily. At the 54th percentile in weight at his 4 month checkup, he’s thriving! 🙂
So, in a gesture of gratitude to the God who saves, heals, and redeems us!, here are the miracles that led to us meeting Harold Robert in person for the first time!
Harold Robert’s arrival is a miracle for many reasons. The first twofold miracle is that he came to us after my twin sister Steph went through fertility preservation that was successful, retrieving 28 eggs! The second part is that the successful retrieval led to a case of Ovarian Hyperstimulation Syndrome (OHSS), a life-threatening situation that occurs in less than 1% of fertility preservation patients. Of course, after being diagnosed with Stage 2A HER2+ breast cancer, Steph ended up with OHSS–only one week before her chemotherapy began in November 2019.
But God helped her to overcome this adversity with a trip to the ER, two thoracentesis and one paracentesis procedure. It turns out that, sometimes, miracles are incredibly painful!
Here’s Steph with two of our best friends from Wheaton College and prayer warrior sisters Brittany and Jessica the day she went in to be induced!
The Second Miracle: Steph Carried Harold to Term!
Not only was Harold potentially coming early because of her velamentous cord insertion, which occurs in 1% of pregnancies (shocker for Steph who has ended up with rare medical situations all along!!), but Steph made it all the way to 39 weeks, both she and Harold healthy as horses!
Also, Steph carried Harold to term after 18 rounds of chemotherapy, a double mastectomy, and over a year of Tamoxifen. You can see her, with two of our best friends from Wheaton College and prayer warrior sisters Brittany and Jessica!, in the photo above the day she went in to be induced! Brittany and Jessica (and their entire family!) have prayed us through our entire breast cancer journey–here’s a roundup of posts highlighting Steph’s beating breast cancer journey:
And if you’d rather listen 🙂 here’s a brief speech starting at the 38 minute mark that Steph and I gave at an American Cancer Society luncheon in 2021 recapping our journey through diagnosis and treatment!:
The Third Miracle: Steph and Paul’s Successful IVF Transfer!
The third miracle is the fact that Steph and Paul’s IVF transfer was successful! Steph had a few complications with pregnancy early on and was on bed rest for a little while, then she got COVID while she was pregnant, but the Lord helped her champion through all of it–then they got to see Harold Robert in real life! Here is another post highlighting her IVF / pregnancy journey:
The Fourth Miracle: Steph’s Benign ‘Nodular Adenosis’
The fourth miracle is the fact that all of Stephanie’s recurrence scares–most recently, a lump near her breast implant at 37 weeks pregnant which resulted in a biopsy and diagnosis of “nodular adenosis,” a benign breast condition–have been “all clear!” Here’s that praise report post, along with all the other praises of recurrence scares to date:
The fifth miracle is Harold’s actual physical arrival into the world! Given that Steph had a velamentous cord insertion–plus the fact that Harold was an IVF baby–the risk of stillbirth was significant enough for the OB to order an “early eviction” to ensure he arrived before 40 weeks, when the stillbirth risk was highest. In addition, the OB ordered ultrasounds every week starting at 36 weeks to check Harold’s breathing and movements. If there was anything at all “off,” Harold would come out as early as 36 weeks! His heartbeat and movements and breathing were strong all the way through, though, so they made it all the way to 39 weeks when it was time to go in for induction!
On Monday, February 6th, the morning of her induction, Steph was pretty nervous–we all were!–but thankfully we had friends in town (Britt and Jess) to distract her and we took care of her by getting her all of her favorite foods and by hanging out with her as much as possible to keep her calm. 🙂
To be honest, I was relieved when Steph finally went to the hospital because it meant all eyes were on her and Harold and they were covered in prayer, surrounded by medical professionals. The journey was much longer and circuitous than what any of us anticipated but it was what God ordained and prepared Steph for!
While Steph pampered herself with a nice long shower in prep for the induction, she listened to “Like Incense / Sometimes by Step” on repeat as she prepared to leave for the hospital, which was stuck in her head and encouraged her as she persevered through labor and delivery!
The cool thing is, when I got to the hospital on Tuesday evening, after she’d already been in labor for almost 24 hours, I started singing this song between her contractions and she and Paul both looked at me in shock–“What song are you singing???”–and I told them, “Like Incense / Sometimes by Step,” which was one of my favorite worship songs of all time and helped me have peace in the midst of anxiety! Then Steph told me she’d listened to it all day in preparation to come to the hospital.
Holy Spirit echo for the win! 🙂
Another encouraging thing that the Lord gave Steph in prep for her marathon labor was a sermon from Christine Caine called “Remember Lot’s Wife” (below). Key point that Steph took away and into her labor and delivery is that it’s important to not look back and to remember that, sometimes, God brings you the long way around for your safety–because He has your best interests in mind 🙂
When Steph arrived at the hospital, they tried a few different induction methods that weren’t successful until they started a Pitocin drip and an oral ripening medicine mid-morning on Tuesday. Then, the contractions started coming on strong!
It was interesting to watch the doctors, nurses, and care team discern what the best choices would be for Steph along the way. Even though she was actively contracting (without an epidural), Steph’s dilation took a long time, and involved Pitocin, oral ripening medicine, dilation balloons, etc. Finally, late Tuesday, after an entire day of painful contractions and dilation, they decided to break her water and give her an epidural. I was relieved they chose the epidural at that point because I just wanted Steph to not be in pain anymore!
Overnight from Tuesday into Wednesday, the computers broke, and they had old-fashioned paper printouts of the heart monitors. They also thought that Harold might not be tolerating Pitocin very well, so they decided to turn it off. They also decided they would likely need to do a c-section on Wednesday because Harold seemed stressed on the readouts.
But when God provided a new doctor and nurse early Wednesday morning, there was another miracle–they reviewed the overnight charts and believed a vaginal delivery was possible! Steph is convinced the Lord sent her an angel nurse named Kelly, who was exactly who she needed to endure the final 8 hours of labor and to push Harold out into the world!
When Nurse Kelly came on shift, she said: “One of my favorite things is when I come on shift and they say ‘We have a patient who might need a c-section but we’re hoping for vaginal delivery.’ Let’s make it happen!’”
My labor and delivery took 7 hours beginning to end, so watching my twin sister go through 36 hours of labor was no cakewalk–for me or any of our family! It was a roller coaster that involved Paul sleeping on the hospital floor, Steph going through immense pain, vomiting, Steph developing a mild fever, and a lot of blood loss–all resulting in the miracle of a little human life, Harold Robert.
I had to go to Mayo Clinic for my 6-month ovarian checkup on Wednesday, February 8th. Leaving Steph at the hospital Wednesday morning was one of the hardest things I’ve ever done because I knew how exhausted she was and how much pain she’d been in and also because I knew she still had to push a baby out after all of that. I prayed for her before I left for Mayo that morning, prayed and cried with a friend on the phone on the way back from Mayo (“WHY DOES EVERYTHING FOR STEPH HAVE TO BE SO HARD?!?!”) and when I arrived back from Mayo, I arrived just in time for Steph to start pushing!
Here is Steph, Paul, Harold, and (angel) Nurse Kelly!
When it finally came time to push on Wednesday afternoon, Steph pushed Harold out faster than I pushed Zephaniah out–in less than an hour!
When Harold came out, Steph lots 900 mL of blood, only 100 mL short of a hemorrhage. Harold also had some trouble breathing, so after handing him to Steph, they took him back and they had to call NICU, who helped Harold get his lungs going with deep suction and a CPAP machine in only a few minutes–but it was the longest few minutes of our lives as we texted friends and prayer warriors (“PLEASE PRAY HAROLD ISN’T BREATHING!!!!!”)
When his lungs finally cleared and we got to hold him, we were so thankful and happy! We gave him all kinds of snuggles and cried. We couldn’t believe how scary the entire labor and delivery experience was and also what a miracle it is for anyone to have a baby, ever.
The Miracle of (Single) Parenting Through Postpartum
The night after Harold was born, Steph’s husband Paul came down with COVID. He left the hospital as soon as he started to feel sick and went home to isolate for the entire first week that Harold was at home. Thankfully, I took some cute photos of them before he had to go into isolation 🙂
Then, it was up to us–Steph’s siblings and parents and brothers-in-law!–to help Steph get through that first week of parenting a newborn and managing postpartum physical and emotional symptoms! In addition to being with Steph and Harold around the clock, Paul’s mom and sister made meals and held the baby and our Maple Plain Community Church family made a Meal Train that was beyond generous for an entire month. Not only did meals keep coming, but they were rich in iron and gluten free to help with Steph’s low iron levels and to keep any dietary sensitivities at bay!
Like the quote from the pastor I put at the top of this post, it’s a joy to help be the hands and feet of Jesus in serving loved ones in times of need. And, as you can see in the photo above, we made sure Steph and Harold were never alone! My son Zephaniah enjoyed crawling around Harold’s bassinet while he slept!
Steph cried a lot that week because she missed Paul, and also because she was in a lot of pain and had really low iron levels. She had an iron infusion “push” before she was discharged from the hospital, which helped, but she had to continue with iron supplements for a while after she got home until, finally!, her hemoglobin levels returned to normal.
Here’s a selfie with Harold the first night home from the hospital!
I wrote post it notes with inspirational and encouraging Bible verses and affirmations on them and put them up all over their house to encourage them, and frequently reminded Steph that this was just a season–that Paul would be healthy soon and able to hang out with Harold Robert all the time! I’d sleep from 6 or 7pm through 11pm, then did all of the night shifts from 11pm or 12am through 4 or 5am, then I’d sleep from 5am through 7am and do it all again. I had help from my mom Jane and my sister Jennifer with the overnights too! We tag teamed it and rocked it (until I got super sick a week later but helping was more than worth it)!
Sure enough, Paul came out of isolation exactly one week after coming down with COVID and they were off to the races! Here are some photos of that first week of around the clock care and Paul coming out of isolation 🙂
The Miracle of Life with Harold Robert + Faith Across the Generations
It took a few months for me to prepare this post (!), but here we are, just a few days after Harold’s 4 month birthday, celebrating his existence and everyone’s good health!
Harold Robert is named after their paternal grandfathers–Paul’s paternal grandfather Harold, and our paternal grandfather, Robert. I remember when Steph was first diagnosed with breast cancer in 2019, she had a dream that our grandpa, Robert, affectionately known as Grandpa Bob, visited her, gave her a big hug, and in his characteristic way, told her everything was going to be all right.
Sure enough!, here we are, on the other side of breast cancer treatment with Harold Robert! God is good all the time, and all the time, God is good!
Harold had a few health issues during his first month of life including a yeast infection and eye infection, but always had a super healthy appetite and is loving his Bobbie formula given to Steph for free for a year thanks to a Breasties Breast Cancer Survivor Sponsorship, which I received for Zephaniah as well!
We got rear ended with Zephaniah and Harold and Steph in the backseat when Harry was only 2 weeks old. That was not good. But God is good, protected us all!, and carried us through with no major injuries, Praise God!
Steph and Paul dedicated Harold Robert to the Lord Jesus Christ in April 2023, when Harry was only 3 months old! He has a lifetime of adventures ahead of him with Jesus and we are so excited to have the little man as one of our baby human companions on this journey of life!
Here are some recent photos of Harold (visiting work with Mommy, flexing, and at his dedication at our church with most of the family!). Harold is just the best and we love him so much!
Prayer Requests + Next Steps
1) Prayers for Tamoxifen: Steph restarted Tamoxifen in May 2023, only 3 months postpartum (!), and has a couple of years left before finishing her 5 years of Tamoxifen total and being done with breast cancer treatments forever! Prayers are appreciated for peace and for zero side effects while she finishes her Tamoxifen treatment over the next couple of years. And, as we often pray: For deliverance and protection from cancer forever!
2) Prayers forOvarian Cancer Screenings: Steph, me, and our baby sister Jenn go to high risk ovarian screenings at Mayo every 6 months to ensure we are all set with ovarian cancer prevention. Prayers appreciated for continued protection in this department, too!
3) Praises for Parenthood + Harold Robert!: Praise God that Steph and Paul have enjoyed life with Harold for almost 6 months already! He’s their life’s greatest joy and prayers are appreciated for them as they continue to grow together in Christ as a family of 3. 🙂
Thank you so much for your prayers for Steph as we prayed, waited, cried, prayed some more, cried some more, then finally got to meet Harold Robert in person! Stay tuned for more updates as he grows and as we get to experience more of Jesus’s daily miracles as we walk the road of breast cancer survivorship–a recent highlight included Baby Harold Robert’s first visit to Mayo Clinic with Steph, pictured below! 🙂 God is good! 🙂
Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
Ephesians 3:20-21
This blog post is the 45th in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram.
This blog post is the 44th in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram.
Here is our most recent miracle story:
1) Miracle Report!: A lump my twin sister Steph found on her left implant two weeks ago is benign!!!!!! Specifically, pathology defined it as: “Nodular adenosis with secretory type changes. Comment: In an appropriate clinical context, the findings may represent lactating adenoma.” In plain English, this means Steph’s breast / chest tissue is expanding in response to her pregnancy, and it is NOT a malignancy / breast cancer recurrence. We are praising God for His protection and deliverance!
2) Praise Report / Prayer Request!: Steph is 37 weeks pregnant and baby Harold Robert is doing well!! He is coming any day now and you can see his 36 week ultrasound photo above!! 🙂 Prayers appreciated for peace for Paul, Steph, and Harold, and for protection and favor for Steph and Harold’s safe and speedy arrival whenever labor comes on! 🙂
Thank you so much for your prayers for Steph as we prayed, waited, cried, prayed some more, cried some more, then finally received news that her ultrasound-guided needle biopsy result was benign. Here’s the full miracle story starting at the beginning!:
Day 1: A “suspicious lump”
On Sunday, January 15th, at 36 weeks pregnant (!), my twin sister Steph texted me: “Hello so I found a pea sized small bump along my left implant by my left armpit and am thinking it might be fat necrosis? But I don’t remember feeling it before and sent a message to Mayo just in case they want me to come in for physical exam / ultrasound.”
My stomach felt like it fell out of my butt, once again. I was having deja vu to the time I was 8 weeks pregnant and found a lump near my left implant in 2021. I had to have a biopsy at 14 weeks pregnant, and that was no fun–especially while pregnant!–but at least my biopsy result was “all clear” as “fat necrosis” after a week of waiting! You can read my pregnant biopsy story at this link.
After I took a deep breath and buckled up emotionally for what was sure to be another emotional roller coaster ride, I told Steph I was so thankful she did a self exam and messaged Mayo, and that I was sure she’d hear something back soon!
Day 2: Waiting
The next day–Monday–came and went with no news from Mayo. Steph called to check in at the end of the day Monday, and got an oncology secretary on the phone who confirmed that her care team had been reviewing her file and corresponding with each other in response to her message as recently as 2pm. Apparently they were waiting on her oncologist to give a directive on how he would like to proceed.
Steph told the medical secretary that she was 36 weeks pregnant, and could be induced as soon as this week, or in the next two weeks for sure. Steph just wanted the team to be aware of that timeline. She also added a comment onto the existing internal chain so the team was aware of that.
“I expect I’ll hear something tonight or tomorrow!,” Steph said.
Day 3: Baby Harry’s 36 Week OB Appointment!
Then Tuesday rolled around. Tuesday morning, Steph went to her 36 week pregnancy appointment. Because Baby Harry is an IVF baby with a velamentous cord insertion, her OB ordered a weekly ultrasound and biophysical profile every week until 40 weeks. If Harry shows any sign of distress, she’s getting induced and he’s coming out!
At 36 weeks, and then at 37 weeks, Harry was doing well :), so he got to stay in there cooking a little longer! Steph talked with her OB–who is also a cancer survivor!–about her situation with the spot by her implant. Her OB told her: “When you’re pregnant, things are changing all the time. I’m sure it’s just a change in your tissue.”
That was very encouraging to hear! (and ended up, providentially, being correct!)
Then, finally!, on Tuesday, Steph got an appointment set in her portal: a 7:15am ultrasound on Wednesday, followed by appointment with her oncologist Thursday morning at 8am. Steph and her husband Paul had hoped she could get all of her appointments for the same day so they didn’t need to travel down twice, but were glad to be on the schedule for Wednesday morning. And off they went on Wednesday to investigate what was going on!
Day 4: Wednesday 1/18/23 at Mayo Clinic: Ultrasound, biopsy, and scheduling miracles abounding!
I sent out a prayer text to our prayer warriors on Wednesday morning:
“If you could pray for Steph today she has an ultrasound at Mayo this morning at 7:15 AM to check out a bump she recently found on the left side of her chest! She also has an appointment with her oncologist tomorrow morning at 8am! Prayers appreciated for the ultrasound today and for peace and wisdom for the doctors on the case to be thinking clearly, and to know exactly what’s going on without a biopsy!!, and that if a biopsy is needed that the schedule would open up for that as soon as possible perhaps even as early as tomorrow!!! She’s also 36 weeks pregnant so baby Harold could come any day now!!”
Prayer moved mountains!! First of all, Steph had her ultrasound with the chair of Mayo’s breast radiology division. He also so happened to be the doctor that helped drain our baby sister’s breast abscess in 2022 (more to come on that miracle in a future post :)). He came in to see Steph after her ultrasound tech took some photos and he took some more photos.
He thought the 1.7×1.3cm bump might be tissue that responded/expanded to the Alloderm and implant, but he recommended a needle biopsy or MRI “to rule out anything serious.” Steph asked if he thought it might be tissue responding to hormonal pregnancy, and he thought about it and said “Theoretically, that could be the case…”
We were hoping she wouldn’t need a biopsy, but I knew that she’d need one, mostly because I had to have one when I was pregnant, and we’re twins, so obviously, she’d need one too. 🙂
Steph’s radiology asked Steph if she’d like to see if she could be induced early, have the baby, then have an MRI to investigate further, or if she’d prefer to go straight to biopsy.
Steph said that she’d much rather have results now and would like to go straight to biopsy–making sure that she’d be able to have her biopsy with a seasoned professional due to the proximity to her implant, and that she’d be able to have it done sooner rather than later.
Her radiologist smiled and understood, and told her that he’s “never seen a Mayo radiologist rupture an implant!”
The second scheduling miracle of that Wednesday at Mayo Clinic was that Steph’s ultrasound tech and schedulers got to work, and as soon as she got out of her ultrasound at 8:20am, she already had a biopsy scheduled for 8:30am! That was a miracle because, as one of her schedulers told her:
“You’re lucky they got you in today for biopsy–usually we are booking out 2 weeks!,” one of her schedulers told her.
Jesus made it happen!!!! 🙂
Pregnant biopsy time!
Steph requested a seasoned professional do her ultrasound guided needle biopsy, and she had a wonderful radiologist who got right down to business. 🙂 They talked about student loan forgiveness and the Chanhassen dinner theater. And they even gave her an adorable little stress ball that looks like a hedgehog or a small pig to help her hand not fall asleep as she had to keep it above her head for a half hour or longer while they took the samples (pictured below).
Steph’s update after biopsy was:
“All done! They took 5 samples and left a ribbon as the clip! Like a breast cancer awareness ribbon! She said they took tiny samples from all over the area which was 1.3 x 1.7 cm but mostly avoided the core. Probably bc it was closest to the implant. She said pathology dept is “very good” and will have very reliable data / report in a few days!”
Then, even though pathology results weren’t in yet, they got to go see Steph’s oncologist in person. This was the third scheduling miracle of that Wednesday at Mayo Clinic: That Steph got to see the chair of Mayo’s radiology department, she miraculously got a biopsy appointment scheduled right after her ultrasound, AND she got to have an in-person appointment with her oncologist that same day!
“Hang in there!,” Steph’s radiologist told her. Mayo Clinic doctors and techs are the best, especially expressing empathy to a 36-week-pregnant-34-year-old-breast-cancer-survivor who just had a biopsy to check for recurrent cancer. 🙂
Here is “CJ” the hedgehog, the stress ball they gave Steph during her biopsy to hold! She affectionately named him “CJ,” after Caleb and Joshua in Numbers 13 + 14 in the Bible. Caleb and Joshua are the spies who came back with a “good report” and told Israel that they could have victory in the Promised Land if they’d believe God’s provision! She said CJ is there to remind her of the “good report” that was coming with her biopsy result! 🙂 Praise God!
Oncologist appointment #1
Steph’s notes after her oncologist appointment were:
“Good meeting! He is glad and was surprised that we had the biopsy done already. That is what he would have recommended! He is amazed we got in today quite frankly! Usually they would need him to order it and then it would get scheduled and then we’d need to come back but apparently because the radiology chair recommended / authorized it they made it happen today right away. He said it will take at least overnight to get results and expects we will know results by Friday, so he scheduled a conference call for 1pm. If the results aren’t ready by then, he will push out the conference call to next week. I will get the results in my portal at the same time he gets the results (due to a federal law put into place for patient access to records) – he said it’s up to me whether I read them before our meeting or if I wait to read them.”
Her oncologist did a physical exam of areas other than the biopsy site and didn’t feel anything suspicious but wouldn’t be able to share anything definitive until the biopsy results came in, which would be in 1-3 days. He said there was a chance it could be a malignancy, and if it was, they’d do three things. First, the biopsy would confirm hormone receptor status and stage of the cancer recurrence (if it was cancer). Second, Steph would need to have a PET scan after delivery to check for metastases. Third, they’d bring in Steph’s breast surgeon and proceed in conjunction with her breast surgeon with developing a treatment plan.
Steph and Paul asked Steph’s oncologist if he thought it could be tissue responding to pregnancy hormones, and he thought about it, and said he wasn’t sure. It seems the only doctor who thought that could be the case is our OBGYN!
We were all terrified, but trusting God for a good report. The day at Mayo was miraculous but stressful, and featured concerning lines from the radiology report including:
“This mass shows reproducible internal blood flow on Doppler analysis and does not demonstrate features suggestive of AlloDerm. Findings are suspicious for malignancy,”
Steph’s husband Paul began fasting and praying and continued doing so for several days with the hope and confidence that God would deliver a benign biopsy result.
Steph and Paul and the rest of us closed out Wednesday by sending out messages for prayer heading into the rest of the week, and had a large share of praises as well! As Steph said:
“Praises that God moved administrative mountains today to get in all the needed appointments in a short period of time so we didn’t have to go down another day! Multiple docs, techs, nurses etc. kept telling me and Paul how unusual it is to see everything line up like it did today as they’re usually booking weeks out. Now we move on to praying hard for a benign / non cancerous biopsy result!!!”
Then, this past week, my twin sister had to have a biopsy of a “suspicious” spot on the left side of her chest, in the 2’o’clock position. As it always is, waiting for pathology / radiology results was incredibly stressful.
This verse from 2 Timothy 1:7 came to mind frequently in times I was tempted to doubt or despair: “For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.”
Waiting for test results is the hardest part. Our minds tend to wander to the “what if?” scenarios. And then there are actual events that feel like a gut punch.
Sunday, Steph found a lump.
Monday, we had to wait for an update from Mayo, and had none.
Tuesday, my twin sister lost one of her coworkers to metastatic breast cancer.
Wednesday, Steph and Paul went to Mayo where Steph got her ultrasound and biopsy of a suspicious spot on her left breast implant at the 2’o’clock position.
Thursday, a family friend had to go to the hospital with a potential recurrence of her breast cancer.
Friday, our aunt got called back for “suspicious” imaging on her mammogram from earlier this week. Ultimately, our aunt received an all clear as it was scar tissue from a biopsy she received last year, praise the LORD!!! While God is good regardless of test results, we are beyond grateful for every encouraging reminder we receive of healing and deliverance we can experience this side of heaven 🙂
Sometimes we don’t understand all that God is doing. “Why God?” questions are scary to ask, mostly because the answer isn’t always clear to us. Instead of a clear answer, we’re often prompted and encouraged to trust God more in the pain of the unknowns.
For example, Check out Matthew 8. In this chapter of the Bible, Jesus runs around and talks to a lot of people and heals a lot of hurting people. Then, there’s a massive storm on the sea when Jesus and his disciples are in the middle of it. Jesus stays calm, and his disciples do not. Even though his disciples had seen him heal dozens of people from life-threatening illness, they chose to doubt instead of trust. How prone we are to do that, too.
Like my husband preached about once, sometimes when Christ is shining most brightly–when God brings his light into the world–darkness seeks to overcome it. Like right after Jesus was born and his human dad, Joseph, and his mom, Mary, had to flee to Egypt to escape from King Herod who wanted to murder little baby Jesus. Our week was perhaps not quite as dramatic as Jesus’s birth story, but we faced a whole lot of darkness this week. My husband also reminded me this week: “What is the point of life, as a Christian? Is it to be comfortable and ‘safe?’”
“No, not necessarily, I know,” I said, “but I’m so scared and it just hurts so much to think about all the suffering Steph is going through,” I told him as I cried. He understands, and he cried too.
It’s like it says in James 1–which is much easier said than done:
“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”
“I just don’t want this trial to steal my joy!!!” I texted a friend through tears.
“You say that as if you are the source of your own joy,” she responded. “Read Psalm 121. Eyes up!”
Clinging to joy in suffering is MUCH easier said than done.
Day 6: Friday: Even more waiting…through the weekend
On Friday 1/20, we had a conference call with Steph’s oncologist at 1pm. He’d hoped to have some results by then to share with us, but he didn’t. He didn’t have any updates from pathology, and unfortunately didn’t know when results would be in. He asked if it would be okay for him to call Steph “on the fly” as soon as he received any updates, or if she’d like him to formally schedule an appointment to go over things. Steph said she’d be okay hearing on the fly, so I sent out this prayer update to our prayer warriors via text and social media:
“UPDATE Friday 1/20/23: Continued prayers appreciated for Steph, as pathology / radiology results were not final yet today (Friday 1/20)! Her oncologist will call Steph “on the fly” as soon as he hears anything, hopefully early next week. Thank you so much again for your prayers for peace in the waiting, for wisdom for Steph’s doctors, and above all, for a cancer-free, benign biopsy result as Steph prepares to deliver Baby Harry into the world any day now! God is our faithful healer and provider and He’s carrying Steph, Paul, and Baby Harry every step of the way! “
I got home Friday evening after spending the afternoon with Steph waiting for news from her oncologist–which never came. I started writing this blog post, hoping to see God’s promises emerge from the week, and was reminded of a devotional I read on Wednesday called Streams in the Desert. Wednesday’s entry, and really the entire week’s, was full of encouraging promises during a week full of trials. For example, on the Wednesday of Steph’s biopsy:
“If there is a great trial in your life today, do not own it as a defeat, but continue, by faith, to claim the victory through Him who is able to make you more than conquerors, and a glorious victory will soon be apparent. Let us learn that in all the hard places God brings us into, He is making opportunities for us to exercise such faith in Him as will bring about blessed results and greatly glorify His name…defeat may serve as well as victory to shake the soul and let the glory out. When the great oak is straining in the wind, the bows drink in new beauty, and the trunk sends down a deeper root on the windward side. Only the soul that knows the mighty grief can know the mighty rapture. Sorrows come to stretch out spaces in the heart for joy.”
This reminder was a good one, but I couldn’t shake a feeling of heavy darkness and fear of the “what if’s.” Until I remembered that the Lord promises to give us the “treasures of darkness” when we trust Him, as it says in Isaiah 45:2-3:
“I will go before you and will level the mountains; I will break down gates of bronze and cut through bars of iron. I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name.”
So I started looking for those treasures of darkness vigorously.
I got on social media to check our comments from prayer warriors, and it didn’t take me long. Some friends had left songs for us to listen to about God’s promises. One of them is “You Already Know” by JJ Heller, sent from a friend who was in the hospital with a potential recurrence of her cancer. You can listen to the song below, but know that it’s a tear jerker–I cried for 2 hours listening to it on repeat, but sang it to myself as a prayer all weekend long!:
Day 7: Saturday: Reminders of God’s faithfulness
On Saturday, after four days of waiting for test results, I went to Trader Joe’s and bought Steph and my mom flowers (pictured above, with a card that says “what a complete and total dumpster fire,” which encapsulated our week to date well :)).
My mom, having to watch her daughters go through all of this, always appreciates a nice bouquet of flowers. 🙂 Steph liked hers too! I also picked Steph up Portillo’s for lunch because she wanted a hot beef sandwich and a strawberry chocolate shake. 🙂 She gets whatever she wants this weekend (and beyond)!!!!
I shared with Steph an entry from the devo Streams in the Desert again today that I hoped was encouraging:
“God never uses anybody to a large degree until after He breaks that one all to pieces. Joseph had more sorrow than all the other sons of Jacob and it led him out into a ministry of bread for all nations. For this reason, the Holy Spirit said of him, “Joseph is a fruitful bough…by a well, whose branches run over the wall” (Genesis 49:22). It takes sorrow to widen the soul.”
She laughed and said, “I know, that is all true, but I thought I’d suffered a lot already.”
I gave her a hug because she had a very good point.
Here is “CJ” the hedgehog again, in his “permanent” residence at Steph’s work at her law firm in her office! CJ is the stress ball they gave Steph during her biopsy to hold! She affectionately named him “CJ,” after Caleb and Joshua, the spies who came back with a “good report” and told Israel that they could have victory in the Promised Land if they’d believe God’s provision! She said CJ is there to remind her of the “good report” that was coming with her biopsy result! 🙂 Now she can be reminded about the good reports at work, too! Praise God!
Steph told me that as she was reading the blog, there was a post about Numbers 13 and 14, when the spies went out from Israel to look at the Promised Land (you can read her full post at this link). In summary: 10 of the spies God sent out came back with bad reports saying Israel should not proceed, but Caleb and Joshua, two faithful and faith-filled spies, came back with optimistic reports, saying that, even though there were adversities ahead, the Lord would be with them, and that they should take the land.
As our family friend wrote on her blog: “The lesson I see here is to refuse to look at the bad report and instead look to God and His promises. Do I trust the bad report? Or do I trust God’s plan for my life? He has not promised me that I will remain cancer free, but He has promised me that He has a plan for my life and that it is good. It all comes down to this – do I trust God’s plan no matter what that looks like?”
In Numbers 13 + 14, the Israelites did not listen to Caleb and Joshua, but they listened to the 10 negative reports instead. As a result of their lack of faith they had to wander in the wilderness for 40 years when they could’ve been delivered if they would have just listened to Caleb and Joshua‘s story of God’s deliverance and provision for them. Not to mention God struck down the 10 spies who gave a negative report with a plague as a result of their faithlessness.
20 minutes after Steph finished reading this blog on Numbers 13 + 14 and was prayer journaling about it, Charlotte Gamble started talking about Numbers 13 + 14 on Air1 Radio! Steph took that as a sign from the Lord and she named her stress ball squeegee toy that her nurses gave her in her biopsy “CJ” in honor of Caleb and Joshua, the spies who trusted in God’s provision and brought back a good report!
Steph said, in the same way as Caleb and Joshua, Steph was trusting and believing for a good report and no more cancer!!!!!! She also said if it ended up being a report we didn’t want to hear from pathology, that they would trust God is good and know He will deliver her anyway!
I think God led Steph to Numbers 13 and 14 on Saturday to remind us how important it is to trust God’s deliverance and protection like Caleb and Joshua did in facing all seasons and circumstances, no matter how dire. Here’s part of the Numbers text:
“And they told him, “We came to the land to which you sent us; it flows with milk and honey, and this is its fruit. Yet the people who live in the land are strong, and the towns are fortified and very large…” But Caleb quieted the people before Moses, and said, “Let us go up at once and occupy it, for we are well able to overcome it.” Then the men who had gone up with him said, “We are not able to go up against this people, for they are stronger than we.” So they brought to the Israelites an unfavorable report of the land that they had spied out, saying, “The land that we have gone through as spies is a land that devours its inhabitants; and all the people that we saw in it are of great size…we seemed like grasshoppers, and so we seemed to them.”” Numbers 13:27-28, 30-33 NRSV
Thanks to these encouraging reminders, when I got home Saturday night, I felt a peace and confidence for the first time that Steph’s pathology result would be fat necrosis / benign tissue with no more cancer!!!!!!! I fell asleep reading Numbers 13 and 14, so grateful for God’s faithfulness and for our opportunity to trust Him more fully through this trial.
Our mom, Mama Jane, hanging with Steph’s pup Gizmo, watching HGTV with us!
Day 8: Sunday: More Waiting / The Dark Before the Dawn
Sunday morning, Steph and Paul came to church where my husband Chris was leading worship and lots of people were praying / prayed over them. 🙂
We spent a lot of time together over the weekend in an attempt to distract Steph from her forthcoming results and to distract ourselves, too. I listened to lots of songs that reminded me of God’s faithfulness, including “Wonderfully Made” by Ellie Holcomb, “Thank You Lord” by Thomas Rhett and Florida Georgia Line, and “You Already Know” by JJ Heller, and “Back to Life” by Zahriya Zachary. I read and prayed Psalm 139, Psalm 121, and Psalm 23, and wrote out questions we had for the doctor if it was a recurrence of some kind.
Questions we were prepared with and had written down in our notes for the oncologist when he called with test results included: What are the options of what this could be? Is it possible it’s leftover breast tissue? Fat necrosis? Scar tissue? What do YOU think it is? Is this what recurrence looks like? What are next steps for follow up if it’s fat necrosis or scar tissue? Is this type of Inflammation could be any reaction to pregnancy hormones? How can you tell if it’s a local, regional, or metastatic recurrence? Can radiation and surgery take care of local and regional situations? Why would a PET scan be needed when there are risks for false positives? What about an MRI to check for metastases instead? If it is a local recurrence can’t we just treat this spot right now locally instead of looking for other problems and potentially over treating? If it’s nothing, is there any reason to follow it or what is follow up and is there any chance it becomes something malignant or could transform into that? Would surgery to remove it and/or the implants be advantageous?Do implants increase chances of recurrence?
Like my doctor told me when I asked her if risk for breast cancer recurrence increase with every pregnancy, she said: “No, it actually decreases every pregnancy, because as you get farther away from the time you had cancer, chance of recurrence gets less and less. Recurrence would happen sooner after your first diagnosis. Also, if there were any estrogen receptor cells in your system, they would have been woken up by your first pregnancy, so here we are checking things out!”
All that to say, our minds were racing and by day 9, we were ready for results!!! Maybe Monday would be the day!
Here is Steph’s cat, Bart, over the weekend, letting us know we should all just “chill out!” 🙂
Day 9: Angry tears and then…MIRACULOUS RESULTS!!!!
Monday morning rolled around and we didn’t have any answers…yet. I went to see my nutritionist, then got home, still nothing. I made Steph an appointment with our nutritionist to make sure she was ready for childbirth and then I went home and got on my elliptical. I worked out and read Scripture and cried some more, mostly angry tears, because while I was believing and trusting for a good report and I knew God was in control, I couldn’t shake the feeling that I was still so scared of whatever news we were going to receive.
As soon as I got my son up from his morning nap, I got three texts and a call–Steph’s pathology results were in!:
“Breast, left, ultrasound-guided core biopsy: Nodular adenosis with secretory type changes. Comment: In an appropriate clinical context, the findings may represent lactating adenoma.“
Then, a few moments later, a call from Steph:
“We’re still waiting to hear from the oncologist, but the pathology result looks good! There is no sign of malignancy anywhere!!”
I couldn’t believe it!!!!! I felt like I was dreaming!
Sure enough, an hour later, a phone call from Steph’s oncologist:
“Good news! So we have a nodular adenosis, which is completely benign. There is no malignancy with this result. I am not concerned at all with this result.”
We were shocked!
He continued: “I did not expect these results, and I was delighted to see them. It is absolutely the best case scenario, and there is no risk of malignancy.”
We all couldn’t believe our ears!
“We are so excited and thankful!!,” Steph said. “We think this is a total miracle!”
Her oncologist laughed, and said: “You were the ones who came into my office and told me it was just tissue changing due to pregnancy! You knew the answer before I did!,” and he laughed some more.
We all laughed. And I told him how terrified we were and how a lot of prayers were said and tears were shed before we finally heard. Then we had a few questions–because it seemed to be too good to be true, but also that it had some interesting words in the report, like “lactating.” So here are the clarifying questions we asked:
“How does the report say “lactating” if Steph doesn’t have any breast tissue remaining?“
Double mastectomy removes 95 to 98% of breast tissue. There are always some cells remaining, so this is from the 1-2% that’s left.
Is there any reason this could turn into a malignancy and/or should it be surgically removed?
I am not concerned at all about malignancy, and it may even resolve on its own after birth. You are more than welcome to reach out to your breast surgeon’s team if you’d like to hear their thoughts on removing it, but no matter how many times you go in for breast surgery, you will always have some breast tissue remaining.
What does follow up look like?
Clinical exams, and imaging as needed. As I mentioned, I am not concerned. It may occur again in a future pregnancy and is something for us to keep an eye on, but is not concerning.
Then we had no further questions so we told him thank you and that Steph would see him in a few months! Then we sent out a celebratory text to our prayer warriors that said:
“We just got off the phone with Steph’s oncologist, and her test results were totally negative!!!!!! It’s a medical miracle!!!!! Her oncologist said “I did not expect these results, and I was delighted to see them. It is absolutely the best case scenario, and there is no risk of malignancy.” Praise God!!!!!
Here we are with our prayer warrior nutritionist on Monday afternoon after we shared the good news of Steph’s good biopsy report! She prays for us and has an awesome portrait of Jesus in her office. She is the best! 🙂
Next steps
We are still recovering from all of this miraculous news. We understand that God is good and would still be good if the test results had been different, but we are in so much shock and relief that we can hardly believe it still.
All of this was an incredibly sobering week, especially the part that we have 1-2% of our breast tissue remaining, even after a double mastectomy! This is motivating to us to double down on our commitment to health and survivorship: Exercising consistently, keeping stress at a minimum, eating clean and organic whenever possible (with the exception of the occasional Portillo’s shake :)), maintaining a positive mindset, being aware of toxins and chemicals in the environment and consumer products; and living a nonalcoholic lifestyle.
We celebrated with Station Pizza on Monday night as a family, then a few of us came down with colds as a result of our immune systems being pounded by the stress of this last week. But that is small potatoes in light of the glory of the Lord we experienced in delivering Steph a miracle: a benign breast condition typically only seen in lactating women during pregnancy or postpartum! A notable thing about that is that none of the Mayo Clinic doctors thought it could be tissue responding to pregnancy hormones until Steph and Paul brought it up to them. And here we are!
God is our faithful healer and provider, amen!
We will put out a post with Baby Harold Robert’s Arrival SOON!!!
Then, we have a few things coming up in February:
+My next every-6-month preventative ovarian cancer screening
+Jennifer’s first mammogram and ultrasound!
This blog post is the 44th in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram.
Here is Steph with baby sister Jennifer and niece Madden Jane at our family pizza party!! We are all so thankful for Steph’s good report!Here is Steph walking up to see her nephew Zephaniah and fur nephews Bear and Thor on Monday, waiting to greet her and celebrate her good report!!! <3Here is me with baby Zephaniah smiling so big after Steph’s reports came back all clear on Monday! Praising God all day long!!!! 🙂 <3
This blog post is the 43rd in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram.
Here is my twin sister Steph (middle, thumbs up!), her husband Paul, and me after her 18 month remission appointment and “all clear!”
We are beyond excited to announce my twin sister is cancer free as she marches on into remission! Not only that, but Stephanie is pregnant with she and Paul’s baby boy, Harold Robert! She is 28 weeks along, and she and her husband Paul are elated to welcome Baby Harry into the world on Valentine’s Day 2023!
All of the details about her “timed break” from Tamoxifen and conception via in vitro fertilization are in this post. Before jumping into the details, here are the highlights of praises and specific prayer requests!:
Here is Baby Harry smiling for the camera at his 28 week ultrasound!
Praises that Baby Harry’s umbilical cord moved up & away from Steph’s cervix: Steph has a velamentous cord insertion, which occurs in 1% of pregnancies (shocker for Steph who has ended up with rare medical situations all along!!). To take it one step further, her velamentous cord started out as “vasa previa,” which means that unprotected blood vessels from her umbilical cord traveled across the opening of her cervix, posing dangers. If Steph’s water broke during labor with vasa previa, the exposed blood vessels can burst, causing serious problems for mama and baby especially if her water broke early. Given all these high risk complications, we prayed and prayed and prayed that Baby Harry’s umbilical cord would move up ASAP, away from her cervix, so that Steph wouldn’t have to go into the hospital 2 months early to be monitored and that she would have the option to deliver naturally at term instead of having a planned c-section as early as 36 weeks. While Steph still has a velamentous cord, we found out this morning that her vasa previa has resolved and her umbilical cord has moved out of the “danger zone” and is far enough away from Steph’s cervix for her to avoid an early admittance to the hospital! God has perfect timing and plans for Baby Harry and we are so thankful for His protection and provision in Harry’s little life so far! 🙂
Praise!: Steph applied for and received a year of sponsored formula from Bobbie, an incredible organic women-led formula company that sponsors ~60 breast cancer survivor mamas with a year of free formula every year! Bobbie partners with The Breasties to advocate for insurance equality–to get breast cancer survivor mamas insurance coverage for formula in a similar way to how other mamas have insurance coverage for breast pumps. Steph is going to be part of their advocacy movement and has already shared her story with the amazing women who also received the sponsorship and with journalist Katie Couric, who was on the Zoom call telling everyone they’d won a sponsorship! You can see Steph with some of her fellow Bobbie Breasties in the photo above!
Praise!: We got to throw a dinosaur-themed baby shower for Baby Harry, Steph, and Paul last weekend. It was so fun to share time with Steph and Paul and to celebrate their amazing baby! Photos below 🙂
A recap of Steph’s journey to date: Fertility preservation, OHSS, and a hysteroscopy
It has certainly been a long journey to get where we are today! Here is a brief “highlight reel” of what (in addition to lots of prayers and Jesus) got Steph and Baby Harry where she is today:
Fertility preservation: Before my twin sister started chemotherapy, her oncologist recommended they preserve fertility at a fertility clinic in the Twin Cities. They were able to freeze / preserve pre-chemo 28 eggs, which was wonderful! You can read all about this in this blog post.
Ovarian hyperstimulation syndrome (OHSS): Unfortunately, because Steph’s trigger shot and procedure to retrieve 28 eggs was so “successful,” her body went into ovarian hyperstimulation syndrome as a result of all of the hormones given in her trigger shot. This happens in a very small percentage of women who go through fertility preservation, and Steph found herself in the emergency room. She had to have two thoracenteses and a paracentesis to drain fluid from her abdomen and lung cavity. To be honest, we are just thankful she survived all of that–just one week before starting chemotherapy. You can read about Steph’s experience with OHSS in this blog post.
Steph’s hysteroscopy (removal of scar tissue) procedure at Mayo Clinic: Steph’s fertility clinic in the Twin Cities found some scar tissue in her uterus on imaging that they said was likely a result of chemotherapy. They recommend she have it removed before beginning the IVF process to ensure the embryo implant would be successful. Her timeline was very tight, but Mayo Clinic’s gynecological surgery team got her in within a week! Not only that, but Steph got to see a doctor who had been doing these procedures for decades. Her procedure was successful as an outpatient procedure and Paul was even able to stay with her for the entire thing!
After these brief recaps, we are all set to head into Baby Harry’s conception story!
Here are Steph and Paul waiting to see her oncologist for her 18 month remission checkup!
Taking a “timed break” from Tamoxifen
Steph and her husband Paul met with her oncologist toward the end of 2021 to discuss expanding their family. Their oncologist said that, based on the data available to him about cancer survivors like Steph taking timed breaks from Tamoxifen, that he was completely comfortable with Steph taking a 2-year-maximum timed break from Tamoxifen to try to conceive via IVF. He also let Steph know that she’d need to be off of Tamoxifen for 3 months minimum before trying to conceive to ensure it’s out of her system. This is because Tamoxifen is proven to cause birth defects and pregnancy to end early. Tamoxifen also has a long half life–at 3 months it is 99% is out of your system, and two weeks before that it is 85% out of your system. So, it’s important to wait the extra couple weeks to a full 3 months before trying to conceive.
Based on this guidance, Steph began her timed break from Tamoxifen on January 1, 2022, and she and Paul planned to head to the fertility clinic to begin IVF in April 2022, with the approval and input of her oncologist! Here is what that process looked like.
Surrogacy?
Steph’s IVF doctor mentioned that some breast cancer survivors opt immediately for surrogacy rather than carrying their own baby due to fear of higher estrogen levels in pregnancy and risk of recurrence, so Steph asked her oncologist if she and Paul should opt for surrogacy right away.
Steph also personally wanted to know if pregnancy would increase her risk of cancer recurrence, so she asked her oncologist that too.
Her oncologist reassured her that he had reviewed studies and data that pertained to her case and his answer was no on both counts: All of the data her oncologist has shows no increase of recurrence with pregnancy for women like Steph that get pregnant after breast cancer. So, in Steph’s case, pregnancy does not increase breast cancer recurrence risk! With that said, Steph and Paul were free to decide natural conception vs. in vitro fertilization (IVF)!
Chester’s in Rochester is our jam. We love their burgers and salads and it gives us the fuel we need to keep going through all of these appointments!!
Natural conception vs. in vitro fertilization
Steph let her oncologist know first that her AMH level was at 4.4, which is considered “normal!” This is a miracle in and of itself, because it means that Steph has eggs left in her ovarian reserves post-chemo! She asked her oncologist if, based on this knowledge, if he would recommend she and Paul attempt to conceive naturally during her timed break from Tamoxifen.
Steph’s oncologist let her and Paul know that he would be entirely supportive of them attempting pregnancy naturally, or to go the IVF route. If they were going to try to conceive naturally, Steph’s oncologist was entirely supportive, but if they wanted to get pregnant in the quickest way possible within the 2 year Tamoxifen timed break window, an embryo transfer via IVF would make the most sense.
They had 28 eggs saved, which was excellent!, but Steph had some questions about the progesterone and estrogen they’d need to get her cycle going for IVF to be successful. Her oncologist, again, was not concerned with anything they want to use in the IVF process. Her oncologist let us know that he had no concerns because the levels of hormones going through Steph’s body during pregnancy would be much higher than any supplements or hormones the fertility clinic would give her.
Steph and Paul also asked if there would be any number of rounds of IVF that would make her oncologist uncomfortable. He said no, but that the 2-year-timed break is very important: Research shows that, as a general guideline, any timed break from endocrine treatment (Tamoxifen) should be less than 2 years.
So off they went into the IVF process!
Here are Steph and Paul all dressed for the embryo transfer!
IVF Step 1: Baby Harry’s origin story
As mentioned earlier, Steph and Paul were able to freeze / preserve pre-chemo 28 eggs, which was wonderful! You can read all about this in this blog post.
Steph and Paul’s fertility doctor let them know that they unfreeze eggs in batches of 3, and that they’d recommend attempting to thaw 6. Five eggs survived the thaw, and all 5 were fertilized, and they ended up with a 100% fertilization rate!, but only 3 made it to blastocyst phase.
Steph and Paul decided, with their doctor, to attempt to transfer twins (2 of the 3 embryos), and to freeze the third embryo to come back for later. The double embryo transfer was successful, but only one of the embryos implanted in Steph’s uterus. The other embryo was “reabsorbed” and did not become a viable pregnancy.
This is similar to what is called a “chemical pregnancy,” which occurs in 1 of 4 conception stories. A woman conceives, but the pregnancy never implants in the uterus or stops developing in the first 5-6 weeks and is then passed in a monthly period (also known as “early pregnancy loss”). Most women sometimes never know that this type of pregnancy happens to them, but some do–if they get a positive pregnancy test early on but then get a period.
All that to say, Baby Harry was confirmed in an ultrasound a couple of weeks after his conception. While we mourn the second embryo who was transferred and didn’t implant, we celebrate Harry’s life and the fact that Paul and Steph have a third embryo in the freezer at their fertility clinic that they plan to transfer in the next several years after Harry’s arrival!
Here are Steph and Paul at their “confirmation of pregnancy” appointment, waving hello to Baby Harry on the ultrasound screen!Here I am, with my medical support team of sister Jenn, Mama Jane, niece Madden, and Steph–all ready to give one of her daily progesterone butt shots while Paul was away!
IVF Step 2: Daily shots of progesterone
Every day, Steph got targets drawn on her butt where she needed a shot of progesterone to keep her hormones up through the first few weeks of her pregnancy. We affectionately called these “butt shots!” When her husband Paul was out of town, I would help out, with my sister and mom. Our niece Madden tagged along, too!
IVF Step 3: Subchorionic hematoma
Steph experienced some bleeding after her confirmation of pregnancy appointment, which ended up being a “subchorionic hematoma.” These are fairly common in IVF babies for some reason, but is terrifying no matter what. Steph was worried she may be miscarrying, but her fertility doctor reassured her to rest and the bleeding would stop shortly. Sure enough, it did. Thank God!
Here I am with Steph and Paul at their confirmation of pregnancy appointment in my “best aunt ever” tshirt!!!
IVF Step 4: Graduating from the fertility clinic to the OB
Steph graduated from the IVF clinic to her standard practice OB at her confirmation of pregnancy appointment. She is excited to be working with the same OB that delivered my baby, Zephaniah, in 2021, and our niece, Madden, in 2022!
Here is Steph 23 weeks pregnant at her oncology appointment at Mayo this fall!
28 weeks pregnant and counting!
Steph is 28 weeks pregnant and counting! There are a few exciting things happening in her uterus: Steph has a velamentous cord, which means Harry’s umbilical cord is unsheathed, inserts into the side of the placenta, and comprises some exposed blood vessels. In the beginning, Steph had “vasa previa,” which means her umbilical cord was very close to Steph’s cervix, which meant if her water broke early, Steph would bleed a lot and baby’s life would be in danger. if the umbilical cord hadn’t moved up to 5 cm away from the cervix by Steph’s 28 week OB appointment, she would have had to potentially go into bed rest at the hospital and have a planned c-section as early as 36 weeks to be watched closely!
We prayed and prayed and prayed that Baby Harry’s umbilical cord would move up ASAP, away from the cervix, so that Steph wouldn’t have to go into the hospital 2 months early to be monitored and that she would have the option to deliver naturally at term instead of having an early planned c-section as early as 36 weeks!
We found out this morning at Steph’s 28 week appointment that her cord has moved out of the “danger zone” and is far enough away from Steph’s cervix for her to avoid an early admittance to the hospital!! She is smiling in the photo above 🙂 God has perfect timing and plans for Baby Harry and we are so thankful for His protection and provision in Harry’s little life so far! 🙂
Here we are at Steph’s 28 week OB appointment waiting for the doctor!!Here I am as a proud auntie with nephew Baby Harry’s ultrasound pic!
Next steps: Multiple pregnancies & intermittent timed breaks on and off Tamoxifen
We asked Steph’s oncologist about risk of recurrence for multiple pregnancies–i.e., if there is no increased chance of recurrence with one pregnancy, is that the same case for multiple pregnancies? Steph’s oncologist said there is no distinguishing between one or multiple pregnancies in the studies that show pregnancy does not increase chance of recurrence, and that he is “very supportive” of multiple pregnancies.
So, after Baby Harry’s delivery, Steph will go back on Tamoxifen to complete her endocrine therapy regimen, but will potentially take another timed break to try to conceive a second baby via IVF! At her most recent visit with her oncologist, we asked for an update on how long Steph would need to be on Tamoxifen. Her oncologist let us know that the recommended length for survivors to stay on Tamoxifen is between 5-10 years total. He also let Steph know that we could discuss any potential benefits of staying on it longer than 5 years closer to that date because hopefully we’ll have more data at that point!
In addition to that total timeline, her oncologist let her know that it is totally possible for Steph to attempt another timed break and embryo transfer before the 5 to 10 total years on Tamoxifen ends / is up, which means they can attempt another embryo transfer in the year or two after Harry’s arrival! He said that “intermittent Tamoxifen” is totally fine.
Here is Auntie Steph (pregnant with Harry!) with Niece Madden Jane and nephew Zephaniah Jon!
Next steps at Mayo
Steph will see her oncologist again in May 2023, which is approximately 6 months away. She will restart Tamoxifen at that point if she’s recovering well from Harry’s delivery as there is “no clinical benefit to restarting earlier rather than later within that 2 year window.” The oncologist also said if you’re willing to start the Tamoxifen earlier to be done sooner, that that’s totally fine.
Also in 2023, because federal recommendations moved from 5 year to 3 year checkups on silicone implants, Steph will likely have an MRI to check on the integrity of her silicone implants.
In the meantime, she will be enjoying carrying Baby Harry and being auntie to nephew Zephaniah Jon and niece Madden Jane! Oh, and of course, enjoying being a “fur mama” to her Boston Terrier puppies Gizmo and Sonic (on Instagram as @gizmo_n_sonic)!
Thank you for your prayers for Steph, Paul, and Baby Harry! Specific continued prayers include:
Prayers for the velamentous cord insertion: That Baby Harry would continue growing and thriving and that the pregnancy would be safe and complete to term!
Prayers for remission: Continued prayers (as always :)) that Steph (and our whole family for that matter!) would be protected and delivered from cancer forever!
Psalm 139 has been on my heart for Steph, Paul, and Harry this year. There are musical versions of this psalm by Shane & Shane and Red Rocks Worship, too. The verses go like this:
“O LORD, you have searched me and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you know it completely, O LORD.
You hem me in–behind and before; you have laid your hand upon me. Such knowledge is too wonderful for me, too lofty for me to attain.
Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast. If I say, “Surely the darkness will hide me and the light become night around me,” even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
How precious to me are your thoughts, O God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand. When I awake, I am still with you.”
Let’s not forget Steph and Paul’s baby Boston Terriers, Gizmo (right) and Sonic (left)!
This blog post is the 43rd in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram.
Last Thursday, October 27th, 2022, our whole family shared our breast cancer story during an interview with Emmy-award winning journalist Alex Jokich and KSTP-5 chief photographer Joe Caffrey! They put together an amazing news package that’s been airing on Channel 5 this entire weekend.
Alex is also one of three girls/sisters–just like Jennifer, Steph, and me!
We are grateful that we are here to share our story. We hope and pray our stories encourage women (and men!) everywhere to get regular health screenings and to trust their gut when they need something checked out!
This blog post is the 42nd in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram.
UPDATE (10/26/22): My dad has now raised almost $11,000 of his $15,000 goal for the month of October (Pinktober)! Here is a rundown of the events he hosted this past week:
Here’s the whole family all ready to go live for the 2022 Chris Steinke Breast Cancer Awareness Fireside Friday!
Chris Steinke’s 2022 Breast Cancer Awareness Fireside Friday
You can watch Chris Steinke’s 2022 Breast Cancer Awareness Fireside Friday on Facebook or Instagram! In one hour on Friday, October 21st, Dad raised over $1,000 toward his campaign!
Here’s Dad and his whole family at the 2022 Kick$ 4a Cure event!
2022 Kick$ 4a Cure
Dad raised another several thousand dollars toward his campaign on Saturday, October 22nd, at his 3rd annual Kick$ 4a Cure event! This year, there were 8 kickers who kicked 100 field goals each to raise awareness for breast cancer and to help raise funds for American Cancer Society! You can watch Jon kick on Facebook at this link–and I was the first female who ever kicked in the event! You can watch me kick on Facebook, too!
Here’s a cute photo album of highlights from the 2022 Kick$ 4a Cure event!This year, my dad, Jon, is shooting for $15,000 raised for research and support for cancer survivors!
Original post: For 3 years now, my dad, Jon Althoff, has served as an ambassador for the American Cancer Society’s “Real Men Wear Pink” campaign! This year, he’s co-chair of the entire campaign!, and you can donate to his 2022 campaign at this link (he’s already raised over $6,500 of his $15,000 goal)!
Dad was interviewed on KSTP 5 in the Twin Cities last weekend and our whole family will be interviewed on KSTP 5 to share our breast cancer story next Thursday 10/27!
Dad’s goal is almost $5k more than what he raised last year ($10,500)!!! Thank you to those who have already donated to the cause!!
Here’s the whole family for Breast Cancer Awareness Fireside Friday in October 2022!
Fireside Friday: Friday 10/21 @ 6pm CST
Join Jon and family as they take part in the 3rd annual Steinke Music Breast Cancer Awareness themed Fireside Friday at 6pm CST on Facebook Live at this link or on Instagram Live at this link!
Here’s the 2022 Kick$ 4 a Cure logo designed by Jenn’s husband Eric!Here’s Real Men Wear Pink Field all ready for Kick$ 4 A Cure 2022 on Saturday 10/22!Here’s Jon all ready to break his 78/100 kicking record from 2021!
Kick$ 4 A Cure: Saturday 10/22
Join Jon on Facebook Live at this link on Saturday, October 22nd, for the 3rd annual Kick$ 4 A Cure Event! Kickers will be kicking from 10am – 3pm, and Jon will be kicking at 2pm CST.
Here’s the whole family and friends at the 2021 Kick$ 4 A Cure Event!Here is baby MJ, all ready for the 2022 Kick$ 4 A Cure event!
What is Real Men Wear Pink / American Cancer Society anyway?
It’s BREAST CANCER AWARENESS MONTH!!! In honor of this month, here’s a video of a speech that my twin sister and I gave at the American Cancer Society Minnesota’s 2nd Annual ResearcHERS Luncheon in 2021 explaining our journey through breast cancer diagnosis, treatment, and survivorship! We start talking at the 38 minute mark in the video below:
Here is the 2021 American Cancer Society’s ResearcHERS event where we heard from amazing female researchers who have benefited from ACS grants. My twin sister Steph and I share our personal story at the 38:00 mark!
Or, you can watch the speech as my dad filmed it from his iPhone below:
Here is the 2021 American Cancer Society’s ResearcHERS event where we heard from amazing female researchers who have benefited from ACS grants. My twin sister Steph and I share our personal story at the 38:00 mark (from my dad’s iPhone)!
As I’ve mentioned in a previous post, it was awesome to be able to share about our experience with a room full of award-winning researchers and donors and to meet some incredible researchers dedicating their lives to discovering new cancer diagnosis and treatment protocols and doctors treating cancer patients on a daily basis. God is good!!!
Thank you for your support of the American Cancer Society and Jon’s Real Men Wear Pink campaign. You can donate at this link! Without donors’ generous support, advances in cancer research that directly impacted our treatment and the treatment of thousands of others would not be possible!
This blog post is the 41st in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram.
I became a mother for the first time on November 1st, 2021, exactly two years to the day after I met with the surgeon who would perform my double mastectomy that would cure my Stage 0 DCIS breast cancer. (You can read about my November 1st, 2019 surgery appointment / double mastectomy plan at this link, and about the surgery that actually happened on December 3rd, 2019, at this link. I’ve been cancer free for two years now, woohoo!)
Here is Zephaniah with my dad and me a week postpartum! Zephaniah is the youngest member of “Team Mayo Clinic” and the American Cancer Society’s “Real Men Wear Pink!”
We named him Zephaniah inspired by one of our favorite Bible verses, Zephaniah 3:17:
“The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.”
That verse carried me through much of my breast cancer journey and has been a comforting promise during survivorship, as well. It’s a blessing to know it’s also the promise my husband and I will pray over our son for the rest of our lives! And, actually, my husband, who is a worship pastor and musician, sings to him regularly already 🙂
Here is my husband singing to Zephaniah!
We are so grateful beyond measure that we had a healthy birth and that our baby is healthy and happy! Almost three months into parenthood, we have three major praise reports, followed by a list of blessings we’ve experienced in our 3 months of parenthood so far:
This is me, Zephaniah, my husband, and two dogs after a 200 yard walk 5 days after delivery! It was amazing to get outside but I almost passed out after 100 yards and forced myself to turn around. Postpartum is a trip!
1) Postpartum recovery is going well!: Three months after delivery, I am FINALLY feeling ALMOST normal, mentally and physically. There’s a roller coaster of emotional and physical side effects that come with pregnancy and postpartum recovery, and extra excitement from being induced with Pitocin and experiencing a second-degree tear exacerbated everything! While I can’t wait to be back to 100%, I understand that healing from childbirth–a lot like healing from my double mastectomy!–takes time and rest. I’m still learning that following doctor’s orders to lie low for longer than I’d like is always a good idea so I can be back to full health in due time 🙂
2) A Free Year of Bobbie Baby Formula: Because my double mastectomy makes it impossible for me to breastfeed, my twin sister nominated me for a year of free baby formula from Bobbie, an organic formula company founded by women that provides a breast cancer sponsorship to survivors of breast cancer who can’t breastfeed (which is AMAZING!). This year, Bobbie sponsored ~60 breast cancer survivors with free formula for a year you can read about their breast cancer sponsorship program at this link, and see their founder in an interview on CBS at this link and posted above!). After being interviewed by their founder and executive board members (you can view highlights from our group interview at this link), I was blessed with a sponsorship this year along with ~60 other amazing breast cancer survivor mamas! I do not take this for granted because my husband and I prayed and prayed that we’d find a perfect formula that our baby would like and that was healthy. You can watch a video about the sponsorship here, and read more on this praise report below!
Here are Zephaniah and I all ready for our bobbie Zoom interview with the founder 1 week postpartum! We received a year of free formula as part of their breast cancer survivorship sponsorship!Zephaniah wakes up happy in the mornings because he’s such a good sleeper!
3) Sleeping through the night!!: At one month old (!), Zephaniah began to sleep through the night with 1-2 feedings / diaper changes max between 11pm and 5am. Now, at almost 3 months old, he is sleeping from 10pm to 6-8am every morning!!! We do not take this blessing for granted because we have prayed every day that he’d be a good sleeper and here we are, 3 months after delivery, snagging 8+ hours of sleep per night. 🙂 Praise God!
As one of my friends recently told me, I shouldn’t try to process all that it means to become a mother all at one time, but I am going to try my best to share some of the highlights and blessings that come with being a breast cancer survivor mama here!
Here’s Zephaniah drinking up his organic bobbie formula which he LOVES!
Blessing #1: A Year of Free Bobbie Formula: Breast Cancer Survivorship Program!
First of all: Keeping an infant alive is hard work. Second: Not being able to feed them in the way God designed (breastfeeding) is incredibly challenging emotionally and mentally. These things make finding a formula your baby incredibly stressful until you find the right one–and then it’s an immense relief when you finally find a formula that works!! My husband and I knew we wanted the best formula for our baby which meant tons of nutrients and preferably organic ingredients.
Not only did we find a formula that worked (bobbie!) but it has tons of nutrients, organic ingredients, AND a sponsorship program for breast cancer survivors. Bobbie is the only female-founded and mom-led infant formula company in the U.S., and it also “joined forces with The Breasties Organization to launch an awareness campaign and public petition for moms who physically can’t breastfeed after a mastectomy to receive insurance coverage for a viable way to feed their babies” (read more about this partnership and program in this Business Insider article).
All that to say, I am so grateful to be part of this program and I recommend bobbie to any woman looking for a formula but especially breast cancer survivors looking for a formula. Bobbie is amazing, and they have resources for women who struggle with breastfeeding, too–not just breast cancer survivor mamas. So, check out their website and look around! 🙂 You can also gift it to parents you know looking for a good formula!
Here is my husband Chris feeding our son Zephaniah his first bottle of bobbie formula in the hospital!!!!
This formula has been a blessing in more ways than one. One of my fondest memories from the hospital was watching my husband feed our baby his first bottle. I still tear up with gratitude thinking about all the prayers that went into bringing us to be parents and finding the right formula. We are so thankful!
Here is my husband feeding our son Zephaniah a bottle in the middle of the night at 3:25am at the hospital!!!My husband and mom got to be with me for labor and delivery which was AMAZING!!!Here I am, eating a “Labor Induction” burger from The Suburban in Excelsior, Minnesota, at 40 weeks pregnant. It didn’t put me into labor like it has for 600 other women, haha!
Blessing #2: Childbirth!
I had to be induced a week after Zephaniah’s due date because he didn’t want to come out on time even though I’d been dilated 3cm for 3 weeks. Ha! When we finally got to the hospital at 41 weeks, it was Halloween night at 11pm. I was already contracting, and had been for at least a week, probably because of all the raspberry tea and curb walking I’d been doing!
Here’s my support team during contractions (my husband and mom)! The contractions were much more manageable while I bounced on a yoga ball!
They started my Pitocin at 4am, then my doctor broke my water at 7am. My contractions started with vigor right after my water broke, and I got an epidural at 8:45am. My nurse told me that “I got the epidural at just the right time.” Phew! One thing they don’t tell you about the epidural is that your body will shake uncontrollably after you get it as labor intensifies. That’s all the adrenaline. It was a crazy amount of shaking!
Here I am after getting the epidural. I was a happy camper!
I rolled around with a peanut ball between my legs, shuddering under tons of warm blankets, until 12:30pm, when my nurse decided I’d dilated to 10cm and it was time to push! That’s when the charge nurse came in and told me that, if I pushed Zephaniah out before the next scheduled C section at 2pm, he’d be the 50,000th baby.
“LET’S DO THIS!!!” I said.
And we did! Childbirth itself was a ton of fun. I really truly enjoyed pushing Zephaniah out into the world in 68 minutes (!), and the fact he was the 50,000th baby born at the hospital was an incredible blessing!! My labor and delivery team was incredible and I loved my doctor and nurses. My husband and mom got to be in the delivery room with me which was an amazing, and my nurse and doctors were such helpful coaches teaching me know how to breathe and push!
Here is my doctor and me and Zephaniah right after birth!!!
After 9 hours of active labor following Pitocin and my doctor breaking my water, I only had to push for an hour to get him to come out into the world to meet everyone!! We received a gift basket and a round of applause when he arrived, which was awesome.
Here is me and Zephaniah and the labor and delivery nurse with our basket of goodies for Zephaniah being the 50,000th baby born at Maple Grove Hospital!Here is my labor and delivery nurse and me with Zephaniah! She was amazing!!!
Blessing #3: Surviving Postpartum Recovery!
And so we went from celebrating Zephaniah being the 50,000th baby at the hospital and being numbed by my epidural to the brutal reality of postpartum recovery. The postpartum recovery process was A LOT more difficult than I’d anticipated. I had a few friends let me know it would be challenging emotionally and physically, but nobody told me with brutal honesty how hard it would be.
Postpartum recovery in the hospital entailed lots and lots of ice, heat packs, trying to sleep, bleeding, figuring out how to use the bathroom, and figuring out how to feed a baby and change diapers!
For example, if you’re subject to any kind of tear following vaginal delivery, you bleed constantly at an alarming rate for an extended period of time. Like, for over a week. Or two. Or three. And that, immediately following delivery, it’s A LOT of constant blood. Which makes sense because you just pushed a child out of you. But it was jarring to me because the bleeding lasted for quite a bit of time–like the entire time I was in the hospital and for a while when I got home, too. I had a second degree tear which wasn’t nearly as bad as fourth degree tears some women endure but was no fun nonetheless!
Here is the donut pillow I sat on for several weeks after delivery! It was a gift from my aunt and a godsend!
And then, once I got home, where family, groceries, and meal train meals from our generous church family were!, I needed to sit on heat packs, ice packs, donut pillows, and cushions daily for at least three weeks to make the pain subside. And I also needed to take Advil and Tylenol on an alternating basis for at least three weeks to keep the pain at bay–and even then, on constant Advil / Tylenol, I still had uterine and back cramping that didn’t subside even with pain pills. I wasn’t about to ask for a narcotic, but the pain was intense enough at times that I thought I could have because even with constant alternating Advil / Tylenol the pain didn’t totally go away. So, as I bled through several pads a day and battled fatigue and postpartum headaches, my uterus continued to contract for approximately a week after delivery as well which felt like the worst menstrual cramps of my life.
Even though I had horrible back and stomach cramping during postpartum, I forced myself to walk several times a week just to be out and getting my blood flowing! Here is me and my dad out for a walk with Zephaniah strapped to me in his carrier!
And, because I had an epidural, my back hurt terribly at the site of the epidural if I walked more than 20 feet. This pain shot nerve pains all over my abdomen and triggered uterine cramps which exacerbated the nausea I was already feeling. The nausea was pretty strange because it was worse than the worst morning sickness I experienced during pregnancy, but after a bit of looking around on various pregnancy health sites (like Mayo Clinic’s), I discovered nausea can be a side effect of Pitocin, which I had plenty of due to being induced! I’m still nauseous sometimes which is kind of crazy almost 3 months out from delivery but hormonal regulation doesn’t totally get back to normal until 6 months postpartum sometimes. So I pray and wait! (At almost 3 months out, I’ve started elliptical again and am lifting dumbbells. I start pelvic floor therapy next week to regain some core strength, too!)
In addition to all of this physical strife, postpartum recovery involves plenty of emotional mood swings. Like, crying all the time. For me, that was about 4 times per day, and it can come on suddenly. When I cried, it felt largely due to an overwhelming sense of gratitude. I was grateful to have survived childbirth, to have given birth to a healthy baby boy, and to have an incredibly supportive husband, family, and support system.
Here we are about 2 weeks postpartum!
I am also grateful to have a formula to feed him and that I survived breast cancer so I could be here to help raise him alongside my husband. I am still incredibly grateful, and now, I’m 3 months out from delivery and don’t cry every day anymore. Now, it’s more like once a week. Which means my hormones are regulating. Which I also don’t take for granted!
Like my twin sister learned in her Breast Cancer Boot Camp with a Mayo Clinic psychologist: “Tears honor things that are meaningful to us.” This truth plus encouragement from my husband, family, and friends that reminded me crying constantly would only last a season, gets me through!!
Here is Zephaniah at 2.5 months, basically holding his own bottle!
Next steps!
Just over a month into parenthood, we’re grateful for God’s faithfulness and the great cloud of witnesses encouraging us along the way. 🙂 I have learned a LOT from the ~60 other breast cancer survivors who also received a Bobbie sponsorship for the formula, and LOVE having friends and family feed him bottles when we have visitors! Our Baby Brezza is a godsend as well–it makes bottles for us in 5 seconds or less!!!
Looking back briefly and looking ahead, here are some brief historical highlights and our next steps!:
October 2021: My twin sister completed “Breast Cancer Boot Camp” with a Mayo Clinic psychologist for her cancer survivorship journey and made some great fellow cancer survivor warrior friends through that program. She has gained a lot of mechanisms that will help her (and the rest of us!) with her survivorship heading into the future!
November 2021: Zephaniah Jon was born! And I became a breast cancer survivor mama!
Here’s my baby sister outside Mayo where she got an “all clear” at her most recent preventative screening!
January 2022: Our youngest sister had her clinical exam and ultrasound with our Breast Clinic doctor on January 4th, 2022; she got the “all clear!” and will be back in July for more screening!
January 2022: My twin sister started her “timed break” from Tamoxifen and will check in with her oncologist and gynecological oncology team before she starts IVF in April 2022!
February 9th, 2022: Our youngest sister is due with her first baby (it’s a girl!)
April 2022: My twin sister and I both have ovarian cancer screening checkups at Mayo. Then, my twin sister starts the IVF process with a fertility clinic in the city; I have my next follow-up appointment with our doctor at Mayo Clinic’s Breast Clinic!
We are so thankful to be where we are and for the great cloud of witnesses supporting and encouraging us physically, emotionally, and spiritually. It truly does take a village to become parents, and we don’t take one blessing for granted! God has given us Zephaniah as a little ray of sunshine to be part of my breast cancer survivorship journey from here. And for that, we are grateful 🙂
This blog post is the 40th in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram.
Before getting into the thick of this post, I wanted to celebrate the fact it’s BREAST CANCER AWARENESS MONTH!!! First: In honor of this month, here’s a video of a speech that my twin sister and I gave at the American Cancer Society Minnesota’s 2nd Annual ResearcHERS Luncheon last week explaining our journey through breast cancer diagnosis, treatment, and survivorship! We start talking at the 36 minute mark in the video below:
My twin sister and I start sharing our story at the 36 minute mark in this video!
Or, you can watch the speech as my dad filmed it from his iPhone below:
It was awesome to be able to share about our experience with a room full of award-winning researchers and donors and to meet some incredible researchers dedicating their lives to discovering new cancer diagnosis and treatment protocols and doctors treating cancer patients on a daily basis. God is good!!!
Second!: Our dad (pictured above) is the co-chair of the American Cancer Society Minnesota’s “Real Men Wear Pink” 2021 campaign, and you can donate to his campaign at this link (he’s already raised over $3,000 of his $10,500 goal)! Thank you to those who have already donated to the cause!!
Here’s the whole family after the Chris Steinke Breast Cancer Awareness Facebook and Instagram Live Fireside Friday Concert on October 8th! ICYMI, watch us play and sing at this link! 🙂
Third!: My husband and I co-hosted a live music evening celebrating Breast Cancer Awareness and my dad’s “Real Men Wear Pink” campaign over on the Chris Steinke Facebook page last night (pictured above!). In case you missed it, here’s a link to the “show!”
Now, onto our latest updates from our latest trip to Mayo Clinic in Rochester!:
Praise!: I’m 9 months pregnant (due with a baby boy due October 25th!), and, 2 years after my DCIS diagnosis and 5 months after a cancer recurrence scare and biopsy, have no signs of cancer recurrence! Also, my youngest sister is 21 weeks pregnant with a girl and, as a 27-year-old breast cancer previvor, has no signs of cancer, either!! God is good!!
Praise!: Two years after our double mastectomies with direct-to-implant reconstruction, my twin sister and I have “graduated” from regular plastic surgery checkups at Mayo Clinic! We’ll go back if we have any trouble with our implants at all and, if we don’t have any problems, we’ll go back in 2024, 5 years after our original surgeries, for MRIs to make sure our implants are still healthy. If they’ve ruptured or are leaking, it will be time to exchange them (which, statistically, happens to women approximately every 7-10 years).
Praise / Prayer Request!: My twin sister is in her 6th month of remission from breast cancer treatment(s) with no recurrence!! Last month, she was experiencing some dizziness, vertigo, blurred/double vision, and occasional panic attacks, but after a Brain MRI and remission checkup with her oncologist, she has discovered those symptoms are NOT CANCER!!! Instead of being a cancer recurrence, the dizziness, vertigo, blurred/double vision, and occasional panic attacks my twin sister was experiencing turned out to be a result of generalized anxiety/panic largely due to a combination of life circumstances. While we are praising the Lord for no more cancer, we are praying for my twin sister’s fears and anxieties to be calmed and for her continued health and healing as she kicks off “Breast Cancer Survivor Boot Camp” at the Mayo Clinic via Zoom next week!!!
Praise!: In addition to her 4-month remission checkup, my twin sister also had an ovarian ultrasound and saw her gynecological oncology team for an exam. All was clear there, too, praise the Lord!
Praise / Prayer Request!: My twin sister and her husband got the green light from her oncologist to take a timed break from her daily dose of Tamoxifen in 2022 to conceive using IVF. Prayers are appreciated for their health and discernment as they move forward with family planning later this year!!
Ultimately, we have several praise reports to share from our most recent exams at Mayo’s Plastic Surgery Department and Breast Clinic and from and my twin sister’s 4-month remission checkup, brain MRI, and checkup with her gynecological oncology team! But, all of these praises don’t come without recognition that cancer survivorship comes with plenty of mountains and valleys. Our “all clear” appointments plus my twin sister’s recent experiences through panic, anxiety, and fear of recurrence–in addition to glimpses of hope provided by God-given medical practitioners and the faithful love of the Lord!–are described in detail throughout this post.
Here we are ready to hit the road for a day full of appointments at Mayo Clinic Rochester: With Plastic Surgery and the Breast Clinic!
Celebrating Plastic Surgery Graduation!
Two years after our double mastectomies with direct-to-implant reconstruction, my twin sister and I have “graduated” from regular plastic surgery checkups at Mayo Clinic! We are convinced our plastic surgeon is the best plastic surgeon at Mayo Clinic for a number of reasons including the fact she wore a bright pink suit for our appointments this week and agreed to take a photo with us in our Mayo superfan tshirts as a “graduation photo” (pictured above at the top of this post and also below–we got posted on the Mayo Clinic Plastic and Reconstructive Surgery Instagram page! :)).
Here is a photo our plastic surgeon shared on the Mayo Clinic Plastic and Reconstructive Surgery social media pages!!
We discussed the biopsy I had in April 2021 that ended up being benign fat necrosis. When I let my plastic surgeon and her resident know the biopsy site still hurts quite a bit and that I still experience some shooting/stinging aches and pains across my chest about once a week, she let me know that’s totally normal with fat necrosis / scar tissue and I just need to make sure to keep doing self-exams and clinical checkups with our breast clinic doctor to make sure there are no areas of tissue growing because “cancer grows. Scar tissue doesn’t.”
Our doctor also recommended that I potentially do physical therapy to help with those pains I’ve been experiencing due to scar tissue buildup. That’s something I’ll probably look into!
One final thing my plastic surgeon was pleased to find on physical exam was that my implants have maintained their integrity throughout pregnancy. Apparently, sometimes pregnancy can cause capsular contracture due to all the changing and shifting in body tissues, so she was thrilled everything is still looking good!
When it was time for my twin sister’s exam, they discussed how she’s been doing since her operation in 2020 and our doctor said that both of us are “looking great!”
She was pleased to hear we are being tracked closely by our Mayo Breast Clinic doctors! We’ll go back to see her if we have any trouble with our implants at all. If we don’t have any problems, we’ll go back in 2024, 5 years after our original surgeries, for MRIs to make sure our implants are still healthy. When we go back to see her in 2024, if our implants have ruptured or are leaking, it will be time to exchange them (which, statistically, happens to women approximately every 7-10 years). While some people need new implants every few years, according to our doctor, some patients’ implants are totally fine after decades! We will see what the status is in 2024 and are hoping everything is great until then!
Here we are on the way to our plastic surgery and Breast Clinic appointments!
Pregnancy and Breast Cancer Previvorship
Our youngest sister is a 27-year-old breast cancer previvor (center in the above photo). She is currently 21 weeks pregnant with her first child (a girl due in February 2022!), and is going through preventative breast cancer screenings at Mayo Clinic’s Breast Clinic in Rochester, Minnesota. She started her journey of preventative MRIs, ultrasounds, and breast biopsies in 2019, and is still breast cancer free after her latest checkin with her Breast Clinic doctor in October 2021! Everything looked “normal and healthy” on physical exam and her breast biopsy site from December 2019 has even almost disappeared. 🙂
She’s been seeing our Breast Clinic doctor for 3-month clinical exams during her pregnancy to keep a close eye on things and is having targeted ultrasound checks every 6 months as well. Her next ultrasound and clinical exam will be in January 2022, right before her delivery in February 2022!, to make sure everything is looking good before she returns in summer 2022 to do another breast MRI (which, according to our doctors, is the “gold standard” for breast cancer detection).
Pregnancy and Survivorship
In April 2021 I had to have a biopsy on the left side of my chest for what appeared on physical exam and ultrasound imaging to be a potential cancer recurrence. It ended up being fat necrosis, or scar tissue, which we were so thankful for! On physical exam this time, there were no areas of concern, and no need for further imaging or biopsies right now! I was thrilled! I’ll go back for another clinical exam in March 2022.
One of the best parts of our checkups with our Breast Clinic doctor this week was that our Breast Clinic doctor changed into the tshirt we bought for her (and all of our Mayo doctors!!) for our appointment(s) We were SO excited to see her in her “superfan” shirt!!! 🙂
To celebrate our great appointments my twin sister and I played our favorite piano duet in the Gonda Building lobby per our tradition to the amusement of several spectators 🙂
Here are my twin sister and her husband at Mayo in Rochester in September 2021, all ready for her brain MRI @ 6am!
Panic, Anxiety, Remission, and Brain MRIs
In early September, my twin sister went to Mayo Clinic for a remission checkup with her oncologist. To start off her day, she had a brain MRI to investigate some symptoms she’d been experiencing for a month including dizziness, vertigo, blurred/double vision, and occasional panic attacks. (Her husband brought her down for her scan, pictured above!)
It all started about two months ago, when my twin sister said she wasn’t “feeling right.” She said that, one day while she was driving home from work, she got to a stoplight and started to get hot. Goosebumps rose up on her neck and she felt like everything around her was moving or shifting but she wasn’t moving. She felt like there was a disconnect between her position and everything around her. As she continued driving, she was pretty light headed and dizzy.
She told me she felt like something inside of her “broke,” and that, ever since then, she felt cognitively off balance like she could pass out at any time. Since then, on an ongoing basis, she was experiencing those symptoms.
She also had some double vision while looking at computer at work that same week, and woke up a couple nights that week with panic attacks. “This is very unlike me,” she said. “I feel like I’m not firing on all cylinders and that’s frustrating because I feel slower at my job and with my family. I feel like something’s wrong. Like I had a stroke.”
So our entire family encouraged her to send her oncologist a message to explain all of this, which she did. My twin sister explained how she was worried these symptoms may signify a cancer recurrence in her brain or central nervous system, and asked him for guidance. He ordered her a brain MRI for the same day as her appointment with him so he could interpret the images before their in-person meeting.
Unfortunately, brain cancer and anxiety/panic disorders have a lot of the same symptoms, so we weren’t quite sure what to make of the situation besides trusting that God had a perfect plan. Our entire family was pretty nervous waiting the week until the brain MRI and her oncology appointment. One night that week I woke up crying, and realized there was a song playing in my head: “Battle Belongs” by Phil Wickham. The chorus goes like this:
When I fight I will fight on my knees with my hands lifted high
Oh God, the battle belongs to you
Every fear I lay at your feet
I’ll sing through the night
Oh God, the battle belongs to you
As I woke up, my cheeks were wet with tears, and I realized that, by playing that song in my head, God was telling me straight up that my sister’s battle was HIS, not mine. Just like the song says, “nothing can stand against the power of our God.” It wasn’t my job to worry about my sister–but instead to trust that God was fighting this battle for her and had this all under control.
Emboldened by this promise that God had things under control :), I started texting our prayer warriors: “I wanted to ask if you guys could pray today / tomorrow for Steph’s 4-month breast cancer check-up with her oncologist tomorrow morning at Mayo and because of some dizziness, vertigo and double vision she’s been experiencing for a few weeks now her oncologist ordered a brain MRI to make sure there’s nothing serious going on! She’s pretty freaked (we all are) and has been asking specifically for prayers for a “super boring MRI and checkup” and that just like her hip a few months ago that there would be “a clear and non-serious-and-non-cancer-related explanation for all this!!” Her appointments will be over by tomorrow afternoon so I will send an update tomorrow when we know what’s going on!! Thanks so much for your prayers and encouragement… they mean the world!!”
The night before her test, my sister said she was nervous but had peace knowing that she would have the test over with soon and she’d know exactly what was going on. I reminded her that the army of gnomes in the MRI tube that I met the first time I had an MRI was waiting to say hi!! 🙂 So off she and her husband went to a 6am MRI followed by a day full of Mayo appointments like they’d done so many times before!!
Here goes my twin sister into her brain MRI bright and early at 6am!
What a Brain MRI is Like
For those who are curious, this is what my twin sister’s brain MRI was like. First of all, my twin sister has been through a breast MRI and a hip MRI in the past two years, and has now experienced a brain MRI, too. She didn’t know quite what to expect except that, after her scan, she’d know if she had brain cancer or had had a stroke at some point in the recent past that would have caused the anxiety and panic symptoms she was experiencing.
When she got back to the MRI tube, she had three nurses with her that got her prepped on her back on the table in a gown. She laid down on the MRI table as a plastic bracket covered by a sheet came up by her head and around her ears (for a look at what this looks like, check out this photo on Mayo’s website. #claustrophobia!!)
She put earplugs in, had a mask on because of #covid, had to put earmuffs over her earplugs and laid back on the table as a heavy, metal-looking “storm trooper” mask came down and locked into the plastic constraint.
Essentially, her head was locked into a box, she couldn’t hear, and could hardly breathe. Thankfully, her nurses were friendly!, and they gave her a comforting pat on her leg as she got shot back into the MRI tube–which she said felt kind of like the Mission:Space ride at Disney World (haha).
My sister told me she made the mistake of opening her eyes and looking up at one point. She saw the mask and the plastic cage and the lid of the MRI only a few inches above her face, and she was acutely aware she was in a small enclosed space and her head was locked in a box. It was then she said she realized why they sedate people or put blindfolds on people for tests like these. Ha!
When the first set of images was complete, they shot her out of the tube and got the Gadalinium IV contrast started. Then they shot her back in for a last round of imaging. She said she tasted a little metal when the contrast started but other than that everything was fine! Then it was over!
At one point she said she was considering pushing the panic button but realized all that would do was postpone the inevitable. She was going to have to finish this test and by golly if she hit that panic button she would just have to go right back in! So she mustered up all the courage she could and kept herself in that tube!
Thumbs up all around as we were SO EXCITED for her wonderful oncology appointment with no signs of cancer at 6 months post-chemo!!!
Receiving the “ALL CLEAR!”
Waiting for the oncology appointment to interpret my sister’s brain MRI felt like forever.
Even though we were all freaked out–and reminded of the times my sister had an ovarian cancer scare in fall 2020 and a hip metastases scare this past spring–her brain MRI ultimately ended up being the best thing that could have happened because it gave us a clear baseline image of everything going on in her brain–which turned out to be totally nothing out of the ordinary, praise God!!!
When we finally got called back into my sister’s oncology appointment, a doctor–but not her oncologist–walked into the room. That made me nervous because I didn’t know who he was.
He came in and sat down and said he was working with my sister’s oncologist–it turns out he was a resident who got to meet with my sister before her oncologist did.
He sat down and introduced himself and asked my sister to explain what was going on. I wanted to scream: “CAN YOU JUST TELL US WHAT THE MRI SAID??!!!!!”
She summarized her symptoms from the past month or so for a few minutes and then, mercifully!, the doctor said:
“I’ll give you the good news: The MRI showed no evidence of brain disease. It was negative for stroke and TIA. Now that we found out what it’s not, we’re going to try to figure out what it IS!”
“PRAISE GOD!!!!” I exclaimed. My dad started clapping in the corner of the exam room. My sister’s husband fist pumped the air. We were SO relieved it wasn’t a brain trauma or cancer related!!!!!
“I’m going to go discuss all of this with your oncologist and we’ll be right back!” the doctor said.
When they both came back in the room, the resident and her oncologist took another 20 minutes to ask her questions and conduct a physical exam.
At the end of everything, her oncologist and the resident agreed that, because of the recent stress she’d been under at work, in selling her house and buying a new one, and heading into her 4-month remission visit with her oncologist at Mayo Clinic in Rochester, Minnesota, her symptoms were likely the result of anxiety or panic.
“I hear this all the time–my patients go through such an intense period of chemotherapy treatments with no time to process things that only later does a lot of stuff come up, especially after infusions stop and there’s all that stuff left over to work through,” my sister’s oncologist told her.
To address her (noncancerous!!!) symptoms, over the past few weeks, my twin sister has had appointments with doctors including: a) her oncologist, b) an integrative medical specialist, c) nutritionist, d) physical therapist, e) chiropractor, and f) counselor. She is seeing a local counselor on a regular basis and starts “Breast Cancer Boot Camp” with a psychologist at Mayo Clinic in Rochester, Minnesota, in October 2021, so prayers are appreciated for those appointments as she goes through them.
Thanks to awesome appointments with all of these God-given medical practitioners, she’s discovered she’s been struggling with anxiety/panic rather than anything purely physical, and is on the road to healing!
My sisters and I are SO thankful for our care team at Mayo Clinic and we will go back and see Mayo in 2022!!!
Next steps!
Thank you all so much for your prayers and encouragement!! Breast cancer previvorship and survivorship definitely isn’t for sissies. We’re grateful for God’s faithfulness and the great cloud of witnesses encouraging us along the way. 🙂
Here are our next steps:
October 2021: My twin sister starts “Breast Cancer Boot Camp” with a Mayo Clinic psychologist for her cancer survivorship journey! Also, my baby is due October 25th!
January 2022: Our youngest sister has her next clinical exam and ultrasound with our Breast Clinic doctor; my twin sister will start her “timed break” from Tamoxifen; my twin sister will check in with her oncologist and gynecological oncology team before she starts IVF.
February 2022: Our youngest sister is due with her first baby (it’s a girl!)
March 2022: My twin sister starts the IVF process with a fertility clinic and I have my next follow-up appointment with our doctor at Mayo Clinic’s Breast Clinic!
Breast cancer screenings may not be fun but we are grateful we get to do them together 🙂
This blog post is the 39th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram.
Being pregnant is stressful enough in and of itself. Bringing a little life into the world is no small thing! Doing it as a breast cancer survivor is anxiety inducing because estrogen and progesterone–two hormones that surge during pregnancy–are two hormones that my breast cancer thrived on. Taking this into consideration, I’m being watched carefully by my OBGYN and by my Mayo Clinic Breast Clinic care team(s).
I’m grateful I’m being watched carefully, but that also comes with a roller coaster of emotions. During my 8-week pregnancy physical exam at my OBGYN, she found an “area of concern” on the left side of my chest that she wanted my Mayo Clinic care team to take a look at.
Mayo Clinic took a look, agreed the area of concern on the left side of my chest was “suspicious,” and ordered me an ultrasound to investigate further followed by an ultrasound-guided biopsy. That biopsy ultimately came back negative for breast cancer (WOOHOO!), but the trusting God in the waiting for all of that was incredibly challenging and painful. We are so grateful for my negative test result and do not take that mercy for granted!
So here we are: I’m 32 years old and 18 weeks pregnant as an 18-month DCIS breast cancer survivor. In this post, I want to share how my breast cancer surveillance during pregnancy has unfolded so far in hopes it’s encouraging to breast cancer survivors and their families, friends, and communities everywhere! So, this is the story of my breast cancer screening during pregnancy so far.
Here is the first ultrasound photo we received of our baby at 8 weeks!
Praise!: I am 18 weeks pregnant and baby is strong and looking healthy!
Praise!: I have now had all of the kinds of breast biopsies Mayo Clinic has to offer, and my most recent biopsy was negative for recurrent breast cancer! My ultrasound-guided needle biopsy of a 13mm x 7mm “area of concern” on the left side of my chest in May ended up being “benign fat necrosis,” praise the Lord! This is my third breast biopsy after my stereotactic core biopsy in August 2019 and my MRI biopsy in October 2019, which both ended up leading to DCIS diagnoses. I don’t take this “all clear” for granted!
All of the details about my pregnancy, ultrasound-guided biopsy, and what pregnancy surveillance as a breast cancer survivor look like are included in the ~5,000-word blog post below. Thanks so much for your continued prayers and encouragement as my husband and I navigate these uncharted waters!!
Here are the (three!) pregnancy tests I took that showed I was pregnant for sure!
Our Pregnancy Test(s) and Announcements
I took a pregnancy test on February 18, 2021, and it looked positive based on what the stick diagram was telling me. I screamed at my husband who was in the shower to look. He stuck his head out of the shower full of soap and water. He squinted and looked at the test and said, “Take another one!!!”
So I took another one.
That one was positive too.
Then my husband said “Wow! I think we’re going to have a baby!”
We prayed together and then he went to work.
I took one more pregnancy test to make it an even three, then I FaceTimed my family panicking and wondering what I should do next. They recommended I call my OBGYN and make an appointment, so I did!
Then I decided to call my extended family and let them know via FaceTime. I know lots of people take time to make fun and exciting baby announcements, but to be honest, I was feeling more stressed than creative and just wanted everyone at that point to know what was going on so they could pray for us!! As I mentioned earlier, being a breast cancer survivor and becoming pregnant is pretty anxiety-inducing, so we appreciate all the prayers we can get! 🙂
Our baby’s first photo at our 8 week ultrasound: “BABY!”
My First OBGYN Checkup
I had my first ultrasound and appointment at my OBGYN on March 17th, 2021, right around 8 weeks. I couldn’t believe I had to wait 8 weeks to go see my baby doctor but I guess that’s how they do it nowadays!
My first OBGYN checkup was pretty cool. My husband got to come, and we got to see our baby for the first time! It was approximately 2cm big, and it was just chillin’ on the ultrasound screen (pictured above). Then I went to my physical exam, which included a urine sample, them taking a bunch of blood, and asking questions about my medical history. It took me about a half hour to explain all of my surgical and cancer history, they asked some questions, then conducted a physical exam.
Everything was looking good, except for a small spot on the left side of my chest that my doctor said felt a bit “different” than the other tissue she was feeling.
“When is the next time you’re going to see your breast doctor at Mayo?”
“I’m scheduled to see her in June!”
“Could you get an appointment with her sooner? It would be great if you could see her at some point during the first trimester!”
“Sure! I’ll send her a note and get all set to see her soon.”
I wasn’t too concerned, but was excited to go see my breast clinic doctor at Mayo. It’s always good to see her!
Here are my twin sister and me in our matching “Team Mayo” tshirts ready to check in for my Breast Clinic appointment at Mayo Clinic Rochester Gonda 2!
Preparing For My First Pregnancy Checkup @ Mayo Clinic’s Breast Clinic
I scheduled my first pregnancy checkup with my doctor at Mayo Clinic’s Breast Clinic for April 26th because my OBGYN was very interested in me seeing her ASAP to check things out. I would have gone earlier but my April schedule was a little nuts and when I explained everything to my Mayo doctor through the patient portal, she said “Congrats!!!!!” and that an April 26th visit at 14 weeks pregnant would be just fine.
Plus, my breast clinic appointment ended up being the same day as my twin sister’s first remission visit with her oncologist, so I got to go with her to that appointment and she was able to come to my appointment with my husband and me! (You can read all about my twin sister’s hip pain, oncology appointment and MRI that showed NO CANCER at this link!! :))
The night before my Mayo Clinic appointment, I had a sinking feeling in my stomach. I was excited to go back to Mayo, but I was nervous that my OBGYN had found an “area of concern” they wanted my breast clinic doctor to investigate. I also had a sneaking suspicion that I would need to have advanced imaging of that area of concern. In a majority of my breast cancer screening experiences, advanced imaging often leads to biopsies, which then tend to lead to breast cancer diagnoses.
What was the worst case scenario? That I had recurrent breast cancer at 14 weeks pregnant. I tried not to think about that too much as I focused on God’s goodness in delivering my twin sister from her corneal cysts and recurrent breast cancer and how grateful I was to be under some of the best medical care in the world. My family tried to keep my mind off things too by buying me a banana split from Culver’s (it’s healthy, cuz it’s fruit :)).
Here is my husband, my twin sister and her husband, and me, ready to head into my Mayo Clinic checkin!
My First Pregnancy Checkup @ Mayo Clinic’s Breast Clinic
When we arrived at Mayo’s Breast Clinic Monday afternoon, to welcome my Mayo doctor into the exam room, we did the wave! We started with my sister at the end of the couch, then my husband, then me. She saw us and laughed.
Then she got to her desk and exclaimed, “Congratulations!!!,” and gave me a big bear hug.
My husband and I said, “Thank you!!”
She asked how I was feeling. I said tired and kinda nauseous but that I was glad to be at 14 weeks now, which means I was excited to be hitting second trimester, because I had heard that things start getting better at second trimester! She said, “Well, you should be feeling better, but I was exhausted for my entire third pregnancy! The exhaustion never went away!”
And I said, “Well, you were also raising two other young kids, plus working full time! So that probably had something to do with it!”
She smiled.
“Do you know the gender?” she asked.
“Not yet!,” I said. “We’ll find out June 11th then we’ll hit exploding golf balls at a gender reveal to show what gender it is.”
She laughed and said, “Don’t cause a lawsuit!”
We said we would do our best to avoid that. 🙂
Here I am with my husband and twin sister waiting for our breast clinic doctor to come in and see us!
My First Pregnancy Clinical Breast Exam
“So your OB found something on physical exam? What exactly was it?” my doctor asked.
“Yeah, so on my left side she found some tissue that felt different than the other tissue around it. And she couldn’t find it on the right side. I can’t feel it myself, but you guys are the experts, so I’ll let you see what you think,” I said.
“Let’s take a look!”
While I was getting changed, she commented on our bright pink “Team Mayo!” shirts that we were wearing and that we’d made for all of our Mayo doctors in 2019:
“I am so mad!! I set out my pink tshirt on top of my dresser last night and I was going to bring it to change into for your appointment today and I forgot it!! I really wanted to do that!”
We laughed and said, “Wow! We’re flattered you still have the shirt and it’s not in a trash can!”
And she said, “Of course not!”
And we said, “Well there’s always next time! Maybe we will just buy you another one to keep in your office for opportunities like this, haha!”
Then I was ready for my exam. For the exam she wasn’t feeling anything on the right side. Then, on the left side, she said the left lymph nodes felt “normal.” Then she asked if anything felt tender and it didn’t.
Then she examined the left side of my chest where the OBGYN had pointed something out and said: “I do feel a small something here. The good news is this area is soft and not hard. But I’m not feeling it on the other side. The one thing we can do is put an ultrasound on it to make sure nothing is going on here.”
My heart sank. I wasn’t very excited to hear I’d need to get an ultrasound. In my breast cancer history, my ultrasounds tend to lead to biopsies, which tend to lead to cancer diagnoses. But I trusted my Mayo doctors 100% and knew I’d be heading into advanced screening later that week, hoping for the best!
So I looked at her and said, “I’m down for whatever you think is best!”
“One thing it could be is leftover tissue from the surgery on that side, or it could be something nodular,” she said. “We will do an ultrasound to figure that out! I’m not going to take any risks with you.”
I was a little bit encouraged by that–maybe it was some tissue that got left behind during my double mastectomy! But I think my surgeon would be insulted if she’d left any tissue behind so I was kind of confused as to whether or not it might be that. I tried not to think about the worst option: That I had recurrent breast cancer at 14 weeks pregnant.
Then, at the end of my exam, I asked her three more questions about breast cancer recurrence and pregnancy:
Q: Does risk for breast cancer recurrence increase with every pregnancy?
A: No, it actually decreases every pregnancy, because as you get farther away from the time you had DCIS, chance of recurrence gets less and less. Recurrence would happen sooner after your first diagnosis. Also, if there were any estrogen receptor cells in your system, they would have been woken up by your first pregnancy, so here we are checking things out!
Q: Alcohol and breast cancer recurrence: What are your thoughts?
A: American Cancer Society (ACS) says no alcohol, and other standard medical societies say 3 drinks per week. So let’s keep it somewhere between there.
Q: Would full genome sequencing at this time be beneficial?
A: Yes, but we don’t want any false leads, like, “This could mean this,” so I might want you to meet with a genomic MD instead of a specialist to make sure you’re doing the best thing with a 350-gene genetic panel. I don’t want it to be a waste of time! I’ll send a note to them to see what their thoughts are.
So we’re waiting to hear from our doctor whether a full genome sequence would be a good use of our time and blood.
Then, as we checked out and got my ultrasound scheduled, my doctor said, “Okay! Let’s plan to see you back in 5 to 6 months, depending on what the ultrasound shows. Then, I’ll want to see you 3 months after that. Because I DEFINITELY want to meet the baby!!!”
Here I am (with baby on board!), ready to head into my ultrasound scan that my Breast Clinic doctor ordered for me to investigate an “abnormal” and “suspicious” 13mm x 7mm lump on the left side of my chest!
Three days later, the same day I had my ultrasound scan at Mayo, my twin sister had a hip MRI scheduled. We, along with our family and friends, were pretty much freaking out about these two tests because both of them could show that both of us had recurrent breast cancer–or that something else was going on. We’d alerted all of our prayer warriors to pray for us because we were really hoping for negative test results!
Two of our good friends from church stopped by my sister’s house before our departure to Mayo with Starbucks coffee for us and to pray for us and for our family. I cried like a baby as they prayed, which was therapeutic and exhausting. Then we hugged everybody and told them we loved them. (I wasn’t able to get a selfie because I was a blubbering mess.) Then we took off!
My twin sister’s oncologist had ordered an MRI to investigate some intense pain she’d been experiencing for the past month in case it might be a cancer recurrence in her hip. HALLELUJAH praise the Lord, it just turned out to be a “labral tear,” not more cancer! So we were thrilled! (Her hip MRI story is at this blog post link.) One prayer answered!!!
Then it was my turn–to go to an ultrasound. My ultrasound tech was also a twin! She told me all about her sister and congratulated me on my pregnancy and asked if we knew the gender. I said not until 20 weeks, on June 11th we would find out, then we’d hit exploding golf balls at a gender reveal party. She thought that was funny.
She took about 30 minutes to take some photos and then said she was going to confer with the radiology team and she’d be right back. 10 minutes passed, then 15, then 20. Then 25.
“Uh oh,” I thought to myself. I tried to distract myself by taking some selfies with a photo in the room I thought was pretty, of the sun shining through trees in a shaded path through the woods.
Here I am in my toga robe waiting for the radiologists with a pretty picture behind me of the sun shining through a path in the woods!
Ultrasound Results: Time For (another!) Breast Biopsy
After 25 minutes, two radiologists came in with my ultrasound technician.
“Oh no!!!” I thought to myself when I saw not one, but two!, radiologists. Last time they sent two radiologists in to see me, it was back in 2019 after my first “suspicious” mammogram when it took two radiologists to recommend I go to biopsy. That biopsy ultimately ended in my breast cancer diagnosis (you can read all about that experience in the post at this link). Oh well, I thought, let’s see what God’s up to here!
“Hello!” radiologist #1 said.
“How are you today?” radiologist #2 said.
“Just fine, thank you!” I said.
“We’re just going to take turns taking a closer look at this spot here if that’s okay,” radiologist #2 said. “Also, congratulations on your pregnancy! How far along are you?”
And we exchanged pleasantries and baby basics while radiologist #1 took some photos. Then they switched while they talked about the dimensions and what they were looking at. After about 10 minutes of more photos, radiologist #2 said:
“So we are looking at about a 1cm spot here on your left side that might be a fat necrosis,” she said. “Given your history and the fact that you’re pregnant, though, we’re going to recommend a biopsy just to be sure. I don’t know if we can get that done today, but we’ll get you dressed then in touch with our scheduler to get you a spot on the calendar soon.”
“Okay, that sounds great!” I said.
I was more or less in shock at this point, and just wanted results ASAP. What did they mean, BIOPSY?! I didn’t even have breast tissue anymore, so what exactly were they looking at?! The thought that I actually might have recurrent breast cancer while pregnant was terrifying. I also knew then why I’d had that sinking feeling in my stomach the Sunday before my appointment on Monday: Jesus was preparing me to trust Him and buckle up for another wild ride!
I scheduled a biopsy for the soonest available which was the next morning. I’d been hoping it would be that afternoon but they assured me they were all booked up. I called my husband to make sure he could bring me back to Mayo again the next morning–this would be the third day of the week that he’d have to miss or be late to work!! :-/ He assured me it was fine so I scheduled the appointment.
Then I went out to my twin sister and our husbands in the Breast Clinic lobby and said, “Welp, I need a biopsy!” Their faces fell. They were shooketh. And they wanted me to get one that afternoon so I didn’t have to travel back or wait for another day. But I assured them I begged for an appointment that afternoon and there were none. Oh well, God had a reason for making me wait!! I thought. My sister told me that too.
Then the ultrasound report came in and read:
IMPRESSION: Suspicious heterogeneous mass/region measuring 1.3 cm in the left reconstructed breast
RECOMMENDATION: Biopsy Recommend ultrasound guided biopsy of the small suspicious heterogeneous mass/region in the left reconstructed breast Findings were discussed with the patient upon examinations completion and she is agreeable to return for ultrasound-guided biopsy.
ASSESSMENT: BI-RADS: 4: Suspicious.
The last time I had a Bi-Rads 4: Suspicious note on a radiology report, it turned out to be cancer. But I tried not to think about that heading into my Friday biopsy. What a wild ride!
Here is my baby sister who prayed with us and brought us Starbucks before we took off for my biopsy!
Preparing forMy Ultrasound-Guided Needle Breast Biopsy* at Mayo Clinic Rochester(*even though I don’t have breasts anymore. The irony!!)
I scheduled a biopsy for the next morning, Friday, April 30th, which was the soonest available appointment after Thursday afternoon. My entire family–and all of our prayer warriors–were very confused.
“A breast biopsy? But you don’t even have breasts?”
“What are they looking for?”
“I thought all your cancer was gone?”
Letting them know that the doctors really thought it might be just scar tissue but were being extra cautious because of my history and pregnancy was reassuring, but there were still lurking concerns in the back of everyone’s minds. Except my husband’s. Following the lead of my breast clinic doctor, he kept telling me and asserting that he was “not concerned at all” and “knows it’s nothing.” 🙂
That morning, my baby sister offered to bring my husband and I coffee for the road! So she dropped off our coffee and prayed with us before we headed out and enjoyed our Americanos on the way down while discussing what the heck was going on. Of course we knew this procedure was necessary, but it was so crazy to wrap our heads around what we and baby were going through!!!
Before we left, my baby sister said, “Mom and I talked and decided this is all happening because God wants us to trust Him more.”
That “trust” word is a tricky one! Trusting God in the good times and the not-so-good times–like times when you have to go in for a breast biopsy when you’re 14 weeks pregnant and don’t even have breasts anymore, just implants–makes it harder to say but it’s no less true!: God is (still) good all the time!
Here are my husband and me in the Gonda Building at Mayo Clinic in Rochester, arrived and heading upstairs for my breast biopsy on Gonda 2!
My Ultrasound-Guided Fine-Needle Breast Biopsy* at Mayo Clinic Rochester(*even though I don’t have breasts anymore. The irony!!)
I checked in for my breast biopsy at 9:30am, right on time. They called me back within 30 seconds, and I was off to the races! I was changed and checked in for my consent video in a matter of minutes–they must have been ahead of schedule!
As the checkin nurse dropped me off in my room and told me to watch the 2-3 minute video, I asked, “Do you have any popcorn available for these videos?”
She laughed and said, “Sure thing! I’ll go pop some right now!”
“This procedure comes with risk of rupture. Be sure to discuss this with your doctor.”
YIKES! I thought. This was my first breast biopsy with implants, so I wasn’t quite sure how this is going to go! I texted my husband and family quickly and they told me to bring up my implants with the doctors every five minutes.
When one of the radiologists came in, he explained the procedure to me and asked if I had any questions. I told him I’m pregnant and that I have implants, so if the procedure can get around both of those things, that would be fantastic. 🙂 He said that would be no problem. Then he asked if I needed to use the restroom (I did, because I’m pregnant, and I go to the bathroom at least twice an hour!). Then we headed into the procedure room!
When I arrived, there were two nurses. One of them was named Jennifer!
“That’s my sister’s name!” I said.
“Awesome!” she said.
We discussed the procedure, how long they’d each been at Mayo (3.5 and 43 years each!!), Minnesota sports teams, and my pregnancy until the doctor arrived. It turns out I was the only ultrasound breast biopsy of the morning! Maybe that meant my results would come back sooner!, I thought to myself.
“So, you’ve had nearly every biopsy we have to offer here,” one of the nurses said.
“I sure have!” I said. “I’m a seasoned veteran!”
The doctor chuckled in the corner, and asked if I had any questions for him before he started the procedure. I realized as he stood there and talked to me that he was the same doctor that did my lymph node biopsies in October 2019, and I was so excited! He’d done a great job with my lymph node biopsies, had been at Mayo over 30 years, and I was glad to see him again because the lymph node biopsy he did was the only negative biopsy I’ve had! 🙂
“Well, I have implanets, so I’d prefer you not pop them during the biopsy today,” I said. “I guess that’s not really a question.”
He smiled and said, “We’ll take special care to avoid those!”
I also said, “And I’m pregnant, so I brought a baby along with me today!”
He smiled again and said, “Excellent! I’m glad to have another spectator in the room!”
He was funny. I was grateful for that.
He came over and discussed the procedure with the other radiologist and nurses.
“You don’t mind if we talk about you while we work, do you?” he asked.
“I’d be insulted if you didn’t!,” I said.
“Okay! So we all agree this is the spot we’ll be working on today?” he asked.
“Yes,” all the doctors and nurses said in unison.
“You’ll see we are inserting the needle laterally here to take special care to avoid the implant,” he said. “We have about 2cm to work with.”
2 cm?!?! I thought. That’s not a whole lot of space!
Then he clicked the biopsy instrument for me so I’d know what it sounded like.
“I’ll count down for you,” he said. “3, 2, 1, then you’ll hear this <click>. I wanted you to hear it so you don’t get startled and jump!”
“Duly noted!,” I said. “I’ll stay totally still!”
I wasn’t about to move at all–even if I had a crick in my neck and my arm was falling asleep!–because I wanted to be sure to do my part to keep that needle far away from my implant! 2cm is not a whole lot of space to work with!!!!
He inserted the local anesthetic, which he said would burn. It hardly hurt at all. Then I felt nothing for the entire procedure.
He took 4 passes at my biopsy site, then they closed me up by applying pressure to the biopsy site and putting steri-strips over the top of the incision.
“You should have results in 2-3 business days,” my nurse said. “If you haven’t heard anything by Wednesday lunch, call us.”
“You bet!” I said.
I asked what I should do for pain, because I’m pregnant, and am trying to avoid painkillers.
“Definitely ice packs,” the nurse said. “You’d be surprised, you may not even need painkillers. Some patients are totally fine without them!”
So I hoped I’d be one of those patients who didn’t need them! And sure enough, I made it through the weekend without them. 🙂 Even while uninstalling and painting our front door (don’t tell my doctors!! ;))
God is good!!!
Here I am after conquering my third breast biopsy at Mayo Clinic, yay!!! Baby was along for the ride this time and did great!!
Trusting God While Waiting For Test Results
Last time I got a biopsy on a Friday at Mayo Clinic, I didn’t get results until the next Friday (you can read all about that experience at this link). Waiting that entire week for results was killer. Because this most recent biopsy happened on a Friday, I buckled up for a week-long wait this time, too.
But my hopes had been high that I might hear something the same day of my test–after all, if it was fat necrosis like they thought, shouldn’t those results come back super fast? 🙂 Also, the one and only time I’ve had a negative biopsy result, my doctor called the same day with those results. That was the only time I had a negative biopsy result and results came back super fast! So my heart jumped when I saw I had a new message in my patient portal from my doctor a few hours after my biopsy. It said:
Sorry to see that the area of concern looked abnormal enough to warrant a biopsy but glad we were able to get you in today. I anticipate results should be back Monday or Tuesday and will give you a call as soon as I receive them.
My heart sank. No results yet. But I only had to wait 2-3 business days, and I still had hope things would be okay! So I crafted a response:
Yay!! Thanks so much!! I look forward to seeing what’s going on!! This pregnancy thing is turning out to be much more exciting than I’d anticipated! Also this ultrasound guided biopsy was by far the favorite biopsy I’ve had. Quick and painless! Now I think I’ve had every single type of breast biopsy that exists! Hooray! Have a great weekend.
Then close of business Friday rolled around, and I got a little worried. No news today meant buckling up for an entire weekend. My husband helped keep me busy with some house projects like painting our front door a beautiful “Salty Dog” blue and playing on the worship team at church.
On Monday, my mind and time were occupied by a bunch of interviews I had lined up, which was a huge blessing. Then I watched baseball with my husband (MLBTV is the best :)) and played some video games (Mario Party on Nintendo Switch :)).
Tuesday rolled around, and I still hadn’t received any messages in my patient portal or calls from my doctor. Plus, I didn’t have any meetings on my work calendar. Yikes!
Because it had been 3 business days at this point, the text messages from my prayer warriors started to roll in.
“Any updates??”
“Any word on the results of your biopsy? Continuing to pray!”
The Elisabeth Elliot quote above came in from a friend via text too. I especially related to the line: “…for He has things to do in our souls that we are not interested in,” because that’s always been the case with me. I’ve always been told to “WAIT,” or to “Be Still.” These are biblical principles, yes!, but so hard for me, ever since my initial breast cancer diagnosis! Which is probably why God keeps asking me to do them. I laugh because if I didn’t, I’d cry. :’)
I initially resisted asking the “Why God?!” questions that come with the territory of waiting for test results. Eventually, around day 2 or 3, I started asking them, and I’m so glad I did.
As I laid down for a nap on day 3 of waiting (pregnancy has caused me to appreciate catnaps more than ever before in my life, haha), God told me (not audibly but you know what I’m saying!) that He just wants me to slow down and rest and appreciate life’s little things, trusting Him with a slower pace and blessings like my husband and baby on the way. This was a comforting revelation to have as it kept me from jumping to extremes and quieted my mind for a short time at least!
That revelation didn’t change my reality, though.
One of my good friends said she’d been waking up with a deep sick feeling in the pit of her stomach the entire week thinking I may have cancer again. My dad asked me what the worst case scenario we were looking at was. I told him, “Having cancer while pregnant. If I do have cancer, they can take it out surgically now, then I’ll do chemo after I deliver, and radiation if I need it. If that happens, I’ll just need extra help with the baby!” My dad said, “Okay! We will be prepared for that!”
Still Waiting…and Trusting God in Life’s Storms
Mid-day Tuesday, another friend and prayer warrior sent me a sermon from her church in Michigan about encountering Jesus in the middle of life’s storms (you can watch it embedded above and at this link).
At one point during his sermon, the pastor said: “When you encounter Jesus, you 1) learn more about Jesus and 2) learn more about who you can be with Jesus.”
As I continued watching the sermon, the pastor said:
“In life, you have storms. Some of them are very unexpected. It’s one call, when a doctor leaves a message on your voicemail that sounds urgent…”
And my phone started to ring. And I knew, based on the “507” area code, that it was my doctor. Based on what the preacher on the YouTube was saying, I was NOT going to let this call go to voicemail!!
Freaking out, I picked up the phone.
My Doctor Call and “All Clear!”
“Hello??” I said.
“Hi!” she said.
“How are you??” I asked.
“I’m good. So. It’s not cancer. It’s fat necrosis.” she said.
“HOLY CRAP!!!” I exclaimed in spite of myself. “I’m so relieved!! AAAAHHHH!!!”
She laughed and said, “You have NO idea how worried I’ve been this past week…”
As I (rudely) interrupted, “I have no idea?!?!”
She laughed.
“Well I guess you have an idea, it was your test after all…”
We both laughed.
“I just couldn’t figure out what was taking so long for results!,” she said, “So I finally called over there this afternoon and said, ‘Just tell me something!!!’ It turns out that the pathologists wanted to do some additional staining and testing just to be sure it was fat necrosis. It’s a 24 hour stain, so after those results come in, pathology will confer with radiology. Those final pathology and radiology results should be in by Thursday morning.”
“That makes sense,” I said. “So what are the chances things could change here?”
“None,” she said. “I’m certain it’s fat necrosis. They are just doing this extra staining out of an abundance of caution for you.”
“Well I appreciate they’re being thorough and all of that–but wow!” I said.
“And the—”
“What are the—”
“Sorry!”
“Sorry!”
As we talked over each other, I asked, “I was just going to say, what are the chances this could turn into cancer?”
“None,” she said. “It’s indolent.”
“Indolent?” I asked.
“Oh! Benign. Totally normal.” she said.
“I learned a new word today!” I said. “You’re expanding my vocabulary.”
She laughed.
“So, fat necrosis is when you have a mastectomy and scar tissue forms,” she explained. “The tissue can harden or shift and change, and this usually happens 1-2 years after the surgery. That’s where we’re at now. Believe it or not, we actually biopsy quite a bit of fat necrosis because it looks so suspicious on imaging. Biopsy is the only way to really figure out what’s going on, especially in a high risk case like yours.”
“So the tissue is just there and showed up now and could have been there since surgery?”
“Basically, yes.”
“Could it show up somewhere else too?”
“Potentially. With regard to follow up, there’s a chance they’ll want to see you back in 2-3 months for another ultrasound. Pathology is going to confer with radiology and come up with a recommendation. Depending on what they say, I’ll plan to see you back in 5-6 months, right at the beginning of third trimester!”
“Wow. That sounds great!! So I’ll wait for the final pathology and radiology reports but those shouldn’t show any surprises?”
“Right.”
“Then we’ll go from there!”
“Yes.”
“This is so excellent. Thank you so much!! This is the best message I could have received!!” I said.
“You’re welcome! Have a great night.”
“You too!”
Here is my husband, me, and our two puppies, Bear and Thor, excited for the new addition to the family!
Next Steps
The radiology and pathology results came back that Thursday as benign fat necrosis just like my doctor said they would. Radiology and pathology recommended “clinical management,” so I’m headed back to Mayo in September 2021 for another physical exam to keep an eye on things! Here is the official report:
PATHOLOGY: Fat necrosis
CATEGORY: Benign
RAD-PATH CONCORDANCE: Yes.
RECOMMENDATION: Clinical Management Further management to be based on clinical grounds with additional imaging as clinically appropriate.
ASSESSMENT: 8: Pathology Benign.
ASSESSMENT/PLAN
#1 Personal history of bilateral DCIS s/p bilateral mastectomies with reconstruction
#2 Negative germline genetic testing
#3 Lump left upper outer quadrant- corresponds to biopsy proven fat necrosis, concordant
#4 Second trimester of pregnancy
FINAL RECOMMENDATIONS: Clinical breast exam next due in September 2021. Breast self-awareness encouraged and the patient is advised to seek medical attention for any breast related concerns.
My doctor sent me a message in my portal to confirm:
“Hello!! The keratin stain was done and confirms benign fat necrosis. Pathology agrees this is concordant with what they see on imaging and recommends clinical follow-up. Therefore, I would like to see you back toward the end of September if you are able to make it then 🙂 Continue to monitor the area over the next several months. If you do notice significant changes, let me know and we may get you back sooner. Thanks!”
While we are VERY relieved to have these test results, the waiting game is one of the worst things in the world. Stress, sick feelings, and worst-case-scenarios are so real. I’m convinced the waiting is almost harder for empathetic prayer warriors (especially my mama!) than it even is for me!! I do understand, though, that the trial of trusting in the waiting brings a joy and peace at the end of the waiting that is vivid, tangible, and real.
God is good, and yes, He is good even with “bad” diagnoses.
God would have carried me and baby through this either way, but this “all clear” is a severe mercy that I don’t take for granted! Through this, God has reminded me of what’s truly important: Slowing down, trusting him, and appreciating the gifts I have in my husband and baby coming up.
To be honest, this whole crucible has made pregnancy seem like a cakewalk. BRING ON A NEWBORN!!!!
I am now 18 weeks pregnant, with OBGYN visits every 4 weeks for now and moving to 2 week visits after my 20 week checkup on June 11th. We will find out the baby’s sex on June 11th, too! Here are some praises and prayer requests heading into the summer:
Praise!: I’m 18 weeks pregnant and baby is looking strong and healthy! My delivery date is October 25th, 2021.
Prayer Request: That my twin sister and my’s breast cancers would stay far away and that we’d be protected and delivered from breast cancer forever!
Prayer Request: For my baby sister’s 6-month preventative breast cancer screening appointment and MRI coming up in July 2021 to be totally clear!
Prayer Request: For baby to continue growing strong and healthy, and for the sciatic nerve pain and flare-ups I’ve been experiencing to subside!
Praise & Prayer Request!: My twin sister and her husband got the green light from her oncologist to take a timed break from her daily dose of Tamoxifen in 2022 to conceive using IVF. Prayers are appreciated for their health and discernment as they move forward with family planning later this year!!
Bear and Thor wanted a close-up photo with the baby announcement so here they are!
This blog post is the 39th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram.
This blog post is the 38th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram.
On April 26th, 2021, my twin sister had her first remission visit with her oncologist at Mayo Clinic! She also saw the eye doctor she’s been seeing for the corneal cysts that developed last year during her infusions of T-DM1 / Kadcyla.
Praise the Lord we have several praise reports to share from those appointments below!! All of them are described in detail throughout this post–thank you so much again for your prayers for us as we travel this journey together!:
Praise!: My twin sister is 100% (14/14) of the way done with her post-operative chemotherapy regimen of T-DM1/Kadcyla and is officially in “remission!” She will take Tamoxifen daily for 5 total years and she will follow up with her Mayo oncology team every 4 months until 2024 to keep a close eye on her healing journey.
Praise!: At her most recent eye doctor appointment at Mayo Clinic, her eye doctor let my twin sister know that the corneal cysts that developed last year during her infusions of T-DM1 / Kadcyla are “completely healed!!” It’s the MIRACLE we’ve been praying for! This means she can go back to wearing contacts some of the time and she can see 20/20 again!
Praise!: The pain my twin sister has been experiencing for a month in her right hip IS NOT CANCER!!! Instead, it turned out to be a cartilage tear! Praise the Lord for those fears to be calmed and for her continued health and healing!!!
Praise!: My twin sister and her husband got the green light (again :)) from her oncologist to take a timed break from her daily dose of Tamoxifen in 2022 to conceive using IVF. Prayers are appreciated for their health and discernment as they move forward with family planning later this year!!
Prayer request!: Now that my twin sister is in remission, would you join us in praying for her healing and protection from cancer recurrence forever, for her strength, health, and for joy as she continues to heal? We appreciate any and all prayers for her as she continues on into survivorship, which is a mental and physical battle!
My Twin Sister’s First Remission Oncologist Visit and Ordering a Hip MRI
On March 21st, 2021, my twin sister started experiencing some “severe” pain (like a 9 out of 10) pain in her hip. The pain was the worst when she was getting in and out of her SUV. She didn’t mention it to anyone until it had been happening for about two weeks, then she broke down and started crying one day with my mom and baby sister and told them everything that was going on. She was terrified it was a cancer recurrence in her hip, she said, and she didn’t know what to do.
We all encouraged her to send a note to her oncologist to let him know what was going on, and he decided to keep her appointment on April 26th which was less than a month away and would see her then to gauge how she was doing and whether imaging was needed. We activated our prayer warriors at that time and everyone prayed her symptoms would disappear before her appointment with her oncologist!
In the meantime, she made an appointment to go see our chiropractor for the first time in over a year and a half. He had a hunch it may be a bursitis or a tight ligament/band, so he gave her a couple of spinal adjustments and recommended she roll out her IT band–which was extremely tight–with a rolling pin twice per day for a week.
Here is my twin sister at the chiropractor, getting her IT band rolled out which has helped her symptoms a bit!
Her symptoms got a little better with the chiropractic exercises, but she still had a bit of pain in her hip on April 26th. So off to the appointment we went! My husband and I went with my twin sister and her husband because I had some breast clinic visits for myself, as well! (More on that in a future blog post :)). Because of Mayo’s two-visitor-per-appointment policy, I was able to go with my twin sister and her husband to visit with her oncologist!
She was able to talk with her oncologist about her fears, concerns, and all the pain she was experiencing in her hip. She explained how it was a sharp pain that shot down her leg and also a dull ache at times. He listened carefully and conducted a physical exam. After, he said that his “Concern for cancer is low, but not zero, so let’s figure out what kind of imaging would be most beneficial.” He thought a bit and then recommended a hip MRI as opposed to an X-ray, because a hip MRI would show “all the muscles, ligaments, tendons, bones, and tissues we need to take a look at.” The MRI would also be able to tell the difference between bursitis and a cancer metastasis!
Her oncologist wanted her to get the scan ASAP, and was able to book her an MRI for three days later, on Thursday, April 29th! Not only that, but he made sure she got an appointment with him on the same day, a mere 3 hours after her scan, so he could deliver her results to her promptly in person!
After the appointment, my twin sister told us she felt “relieved” that she was going to have imaging done. Even though it’s terrifying to have to send her in for a scan for something that might be a cancer recurrence, we agreed–it was the right thing to do, especially, like her oncologist said, if she’d been having hip pain for a month!
Our dad and Gizmo the Boston Terrier seeing us off to Mayo Clinic for my twin sister’s hip MRI on Thursday, April 29th!
The HIP MRI: It’s Just Torn Cartilage (a labral tear)!!!(And Our Trip to Drift Donuts)
On our way down for my twin sister’s MRI, we stopped at Drift Dough in Rochester, Minnesota. Because why not pick up some delicious gluten free donuts for a day like this?!
Then we got checked in for my twin sister’s scan. I came along with my husband again because I had some tests as well (more on that in a future post!). Plus, with the two-visitor-rule, I was able to come along to my twin sister’s MRI interpretation with her oncologist.
Her hip MRI was quick, painless, and they didn’t have to use any contrast! The radiologist said, “We got what we needed without it!” She was in the tube for less than an hour, and she said that the MRI tube gnomes (the ones I identified during my first MRI in 2019 🙂) were “hard at work!”
We went up to meet with my twin sister’s oncologist in no time and as soon as he walked in he said: “I have some good news for you! The pain in your hip is not cancer. It’s a labral tear!”
“PRAISE GOD!” I said.
“YAY!” my twin sister said.
My brother-in-law fist pumped.
Obviously, a labral tear is still not an ideal condition or situation and is very painful. My sister can’t lift weights with her lower body or run or jog right now, but at least it’s not cancer!, and my sister and all of us are celebrating that right now! Beyond our celebrating, my twin sister will likely be in touch with an orthopedist and/or physical therapist to figure out what sort of PT or treatment would be most helpful for her labral tear. Some of these tears need surgery to fix which wouldn’t be ideal either but again at least it’s not cancer so we’re still celebrating!
Blood tests?
We asked if the hip MRI was all my sister needed or if she should have a blood test like he’d mentioned previously to check for tumor markers floating around in her system. He said he’d done some research and: “Those blood tests are still in development. It will take a lot more research for those blood tests for tumor markers to be accurate for your type of cancer!”
Nutritional supplements in survivorship?
We also asked about nutritional supplements. He approved her to start taking a prenatal with folic acid; Vitamin D up to 1000 IU’s daily; and encouraged her to consider the Mediterranean Diet, which has been proven to decrease risk of breast cancer recurrence. 🙂 He told her to be careful of taking any supplements that would interact with Tamoxifen’s breakdown in the liver. Those supplements would be a no no. It turns out Tamoxifen is broken down in the liver through a path called “CYP2D6,” which can be influenced by other medications. So his advice was to not take any supplements that would interact with CYP2D6 or Tamoxifen breakdown in the liver!
Family planning
My twin sister’s oncologist also discussed their family planning: He restated they would be good to take a break from Tamoxifen to try to conceive anytime 18 to 24 months after completing breast cancer chemotherapy treatment and beginning daily doses of Tamoxifen. That means in January 2022, she will have been on Tamoxifen for 19 months. So she and her husband said they’d like to get started at the beginning of 2022! At that time they plan to take a 2-3 month break from Tamoxifen, then try to conceive (TTC) using in vitro fertilization (IVF) with the eggs they froze at the fertility clinic before she began chemotherapy in fall 2019! We are still praising the Lord she made it through her bout with ovarian hyperstimulation syndrome (OHSS). They will have some stories to tell their super special babies!
At the end of their appointment, my twin sister let her oncologist know we’d gotten him a bright pink “TEAM MAYO!” tshirt. Our previous ones were dark pink, and we ordered a new batch for when my twin sister started her second batch of chemo!
He giggled and said, “I think I’ve earned this!”
We all smiled.
My twin sister’s oncologist sent her on her merry way after letting her know her heart ultrasound from Monday looked great, which means the T-DM1 / Kadcyla chemotherapy had no effect on her heart health!! And, she won’t need a heart ultrasound ever again! Yay!
Here we are with our gluten free donuts from Drift Dough in Rochester, Minnesota! Celebrating my twin sister’s amazing appointments!!
My Twin Sister’s Corneal Cysts are MIRACULOUSLY HEALED!!!
My twin sister’s vision has become marginally better since the end of her T-DM1 chemotherapy treatments in February 2021, so she was very excited to go back and see her eye doctor at Mayo Clinic on Monday, April 26th, as well.
Her eye doctor wheeled up his chair and said: “It’s as if nothing ever happened to your eyes!!”
Her eyes are miraculously healed!!! It turns out that, rather than the Tamoxifen causing her corneal cysts, or eye contact solution that the first doctor she saw in the city initially thought, it was the T-DM1, or Kadcyla, causing her corneal cysts.
Now that her chemotherapy is over, her cysts disappeared and her corneas are completely healed! According to her eye doctor at Mayo, the corneal cysts that developed in her eyes were on the regenerative layer of the cornea, so her eyes had already regenerated and healed within 6 weeks of completing T-DM1 / Kadcyla!!! She doesn’t need to go back to see him unless she wants to go to an annual appointment with him, so she has officially “graduated” from one department at Mayo Clinic, yay!
Next steps
Here we are with our hubbies at the end of the day of MRI and oncologist visits!!
June 2021: My baby sister’s 6-month clinical exam follow-up at Mayo Clinic Rochester!
August 2021: My twin sister’s second remission oncology update and ovarian follow-up appointments at Mayo Clinic Rochester
Thank you so much for your continued prayers for my twin sister’s health and healing, and for our protection from (and our baby sister’s deliverance from!) breast cancer forever!!! It’s our hope and prayer that this blog and our stories have been and will continue to be a resource and help for anyone going through breast cancer diagnosis, treatment, or healing. 🙂
God is good!!!
This blog post is the 38th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow A Daily Miracle on Facebook, Twitter, and Instagram.
This blog post is the 37th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow onFacebook,Twitter, andInstagram.
My twin sister traveled down to Mayo Clinic in Rochester with her husband a week ago Friday for her 14th and FINAL infusion of T-DM1/Kadcyla!! Her infusion went excellently, and, according to her oncologist, after 20 chemotherapy infusions totaling 43 hours and a double mastectomy with reconstruction, my twin sister is now officially in REMISSION from breast cancer!!!
As our dad wrote in a Facebook post last Friday as my twin sister and her husband headed off to her final day of chemotherapy at Mayo Clinic in Rochester:
Today is a great day long in coming. This is Steph’s last chemo treatment day at Mayo for her breast cancer journey. Over a year of tears, worry and lots of prayers. The strength and faithfulness and determination Stephanie and her husband Paul have provided to all of us along the journey has been nothing short of incredible. For all suffering, be reminded today that joy will return, Faith is essential, and love of Family, and the support of kind friends will get you through. Thanks be to God for His Faithfulness. And thank you friends and Family for, well, everything. #ACS #breastcancer #remission #faithful #ThankYouLord
Here are a few highlights from my twin sister’s most recent visit to Mayo, starting with her departure pictured above as she and her husband prepared to head out to Rochester but first posed for a photo with their two boys, “Bart the Cat” and “Gizmo the Boston Terrier” (who you can follow on Instagram @gimme_mo_gizmo :)). We are celebrating her new status as a patient in “remission!” We’ve also included praises and new prayer requests for us at this moment in time (full details follow in the blog post below).
Thank you so much again for your prayers for us as we travel this journey together! It is indeed the end of an era and the beginning of a new survivorship chapter presenting us with plenty of opportunities to trust in the Lord!:
Praise!: My twin sister is 100% (14/14) of the way done with her post-operative chemotherapy regimen ofT-DM1/Kadcyla and is officially in “remission!” Her side effects have been minimal, especially compared to what she experienced after herneoadjuvant chemotherapy regimen on TCHP in 2019 and early 2020. She has headaches and a bit of nausea for about a week after each of her infusions of T-DM1, but this week is the last week that she will ever have to experience that again because we hope and pray and trust this is the last time she ever has to do chemotherapy EVER!!! 😀 She will follow up with her Mayo oncology team every 4 months until 2024 to keep a close eye on her healing journey.
Praise / Prayer request!: At her most recent eye doctor appointment at Mayo Clinic, her eye doctor let my twin sister know he is “confident” that the corneal cysts that developed last year will disappear likely after the conclusion of T-DM1! The corneal cysts get a bit worse for the week after each of her T-DM1 infusions, but it is our hope and prayer they will disappear completely in a matter of weeks!!! We will post an update after she goes to see him again in April 2021! This would be a literal MIRACLE!
Praise! / Prayer request!: My twin sister had a follow-up appointment with the gynecological oncology team at Mayo Clinic last week to follow up on her ovarian cancer screening scare last fall and her ovaries are totally normal! That means that she and her husband will be able to take a timed break from her daily dose of Tamoxifen in 2022 to conceive using IVF. Prayers are appreciated for their health and discernment as they move forward with family planning later this year!!
Prayer request!: Now that my twin sister is in remission, would you join us in praying for her healing and protection from cancer recurrence forever, for her strength, health, and for joy as she continues to heal? She will take Tamoxifen every day for 5 years–with a timed break in 2022 to conceive using IVF–and we appreciate any and all prayers for her as she marches into survivorship, which is a mental and physical battle!
Here is my twin sister with her husband outside of the Gonda Building at Mayo Clinic in Rochester, ready to head into her final chemotherapy infusion!
My twin sister’s 14th (and final!) infusion of T-DM1 / Kadcyla at Mayo Clinic Rochester
My twin sister’s final infusion of T-DM1 was amazing for a few reasons. First, her favorite chemotherapy nurses of all time were working, which means she got to talk with them and give them thank you cards for all of the time they spent helping her–especially in 2019 when she first started TCHP with a 6 hour chair time per infusion. 🙂
Also, because she got to celebrate being finished with chemotherapy forever with a set of clappers from a very good friend (thanks, Caroline!!! :))
My twin sister didn’t request a window room for her final infusion because she wanted others with longer chair times to have the “window seats.” 🙂 When she got up to go home, she promised her nurses she would send photos of her and her husband’s babies through the patient portal next year. 🙂
Here are some videos of my twin sister using her clappers!:
Celebrating Remission!!!
When my twin sister and her husband returned home from their trip to Mayo Clinic in Rochester, our immediate family had prepared a party for her!! We set out generous flowers, balloons, and gifts from family and friends (thanks Aunt Jeanne, Aunt Shawn, Jess, Jayme, and Tracie!!!), and enjoyed some quality time reflecting on the Lord’s faithfulness on this long and arduous journey. Here is a brief video and some photos I captured when she and her husband got home:
Here’s the whole family celebrating my twin sister’s remission! Yay!!!
My twin sister’s good friends Jess and Jayme got her a bunch of Minnesota-themed celebration gifts including a puzzle, mug, candy and chocolates and flowers!!!
My twin sister’s good friend Tracie got her some amazing Crumbl cookies and her aunts got her a box that exploded with candy and butterflies!!!
Here we are playing our duet, “Let the Good Times Roll!,” in the Gonda Building lobby between eye and ovarian doctor appointments a few weeks ago!
Ovarian cancer free / “looking good!”
In mid-February, I took my twin sister down to Mayo Clinic in Rochester for a follow-up appointment with her ovarian doctor team and eye doctor to check on her microcystic edema. First: Ovarian doctor. This appointment was made to follow up on my twin sister’s ovarian cancer screening scare last fall.
Thankfully!, my twin sister’s ovaries on this most recent ultrasound are totally normal! That means that she and her husband will be able to take a timed break from her daily dose of Tamoxifen in 2022 to conceive using IVF. Prayers are appreciated for their health and discernment as they move forward with family planning later this year!! She is all set to go back and see them in 6 months for a routine checkup–in August 2021.
Here we are about to go check in for my twin sister’s day of eye and ovarian appointments!
Microcystic edema update
At my twin sister’s eye doctor appointment, we found out that her retinas look good which is a huge praise because apparently retinas are more important than corneas. This is because corneas are more surface level and don’t have as much to do directly with vision. That being said, my twin sister’s eye doctor said that, he still sees some cysts around the outside of my twin sister’s corneas, but that everything is clearing up–and that he is not sure entirely why they are clearing up because she’s still on chemotherapy, but they are! He said a reason they may be healing is because she has “healthy corneal stem cells to replace the cells that have deposits in them,” and that “age could play a factor, too, being young, your stem cells may be healing faster.”
Her doctor also said that he did a brief literature review and found, in some German literature, that similar chemotherapy drugs to T-DM1 / Kadcyla cause cysts on the corneas. But, that he has never seen evidence of someone on T-DM1 / Kadcyla having corneal cysts, let alone healing from them!
“So she is defying science, right??” I asked him.
“I would say she’s creating science!” he responded and smiled.
That was pretty funny. My twin sister is creating science. Yay! And, of course–we attribute her healing to the Lord as a miracle :))
He said that he wants to see her back in 3 months, when he is “confident” she may be totally healed, following the end of T-DM1! That is our hope any prayer–that her corneal cysts will have cleared up completely by then! 🙂
Here is a cartoon in her eye doctor’s office, which is pretty funny!
This verse was face-up on the morning I picked my sister up to go to Mayo for some eye doctor and ovarian appointments! Bible Verse notecards are a wonderful gift and these came from a dear friend from her church’s marriage ministry as an encouragement for her breast cancer journey. 🙂
Next steps
I was listening to a Christine Caine podcast recently about what to do when you’re feeling overwhelmed. Her encouragement was to turn to the Psalms, where David–a man after God’s heart–wrote out pages and pages of psalms of lament, mourning, and celebration. This was a huge inspiration to me because I’ve found myself in the Psalms a lot this year and now I know why–because living through and reflecting on all of this–breast cancer testing, treatment, and healing–is incredibly overwhelming.
“Tears may flow in the night, but joy comes in the morning.” Psalm 30:5 has been a standby for us this past year and a half. Looking back on these past 15 months isn’t easy.
There have been days full of tears, sleepless nights, gut-wrenching questions asking God “Why?,” and pain that doesn’t make sense. The Psalms say a lot about this, like on the notecard above–that even when things don’t make sense, God promises to be with us. For anyone just embarking on a cancer journey or for our friends walking with someone you love through cancer diagnosis and treatment, know that God is near to you in the mountains and in the valleys. He loves you and is mighty to save you if you’ll let Him!!
“The LORD is my strength and my song; he has become my salvation.” Psalm 118:14
Even in the midst of incredible physical and emotional pain, we look ahead to a future trusting the Lord who has protected and delivered us this far will continue to do so. This might seem crazy, but especially after going through breast cancer, we know that we can trust the Lord’s plans are perfect and no pain is wasted: As Psalm 126:5 says, “Those who sow with tears will reap with songs of joy.”
The five stages of grief may endure for our entire lifetime(s), too. But, God is good, still!
Here are some upcoming appointments as we all march on toward survivorship!:
Monday, March 8th: Dermatology appointment to remove and test a “mildly atypical” spot on my twin sister’s back (the dermatologist doesn’t think it’s skin cancer but just wants to make sure!)
Friday, March 12th: My follow-up with my plastic surgeon to ensure that I’m continuing to heal properly and there are no signs of capsular contracture; my twin sister’s one-year follow-up with her plastic surgeon!
April 2021: My twin sister’s eye doctor follow-up @ Mayo Rochester checking on her microcystic edema; my twin sister’s 3-month post-chemo remission check-in with her oncology team!
June 2021: My 18 month Breast Clinic follow-up at Mayo Clinic Rochester and my baby sister’s 6-month clinical exam follow-up at Mayo Clinic Rochester!
Thank you so much for your continued prayers for my twin sister’s health and healing, and for my twin sister’s, my, and my baby sister’s deliverance from breast cancer (forever)!!! It’s our hope and prayer that this blog and our stories have been and will continue to be a resource and help for anyone going through breast cancer diagnosis, treatment, or healing. 🙂
God is good!!!
This blog post is the 37th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow A Daily Miracle onFacebook,Twitter, andInstagram.
This blog post is the 36th in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on Facebook, Twitter, and Instagram.
My baby sister traveled down to Mayo Clinic in Rochester with her husband earlier this month for her follow-up MRI to complete her baseline preventative screening and found out she is CANCER FREE at age 26!!! We are so grateful and our prayer is that she will NEVER have to deal with breast cancer ever in her entire life!
Also: I got to travel down to Mayo Clinic in Rochester with my twin sister for her 13th infusion of T-DM1/Kadcyla last Friday. Now she only has one more infusion before she is ALL DONE with her post-surgical chemotherapy regimen!!!!
Here are a few highlights from their visit including praises and new prayer requests for us at this moment in time (full details follow in the blog post below)–thank you so much again for your prayers for us as we travel this journey together!:
Praise!: My baby sister is CANCER FREE at age 26 following two preventative baseline MRIs at Mayo Clinic in Rochester and interpretation by their amazing radiologists and breast clinic doctors! You can read all about her journey that started last summer in the blog post at this link. We are praying she will never have breast cancer EVER!!!
Praise!: My twin sister is 92.9% (13/14) of the way done with her post-operative chemotherapy regimen of T-DM1/Kadcyla! Her side effects have been minimal, especially compared to what she experienced after her neoadjuvant chemotherapy in 2019 and early 2020. She has headaches and a bit of nausea for about a week after each of her infusions of T-DM1, but that is small potatoes compared to what she’s been through and we hope and pray and trust this is the last time she ever has to do chemotherapy EVER!!! 😀 Prayer requests for my twin sister are that her side effects continually improve and are manageable after her last chemo infusions and that her corneal cysts would miraculously disappear even now!
Prayer request!: My twin sister’s corneal cysts that developed last year get a bit worse for the week after each of her T-DM1 infusions. But we’re asking for prayers that her microcystic edema will go away now or after her T-DM1 treatment is complete in a month or so! She can still see, which is a huge praise, and she only has 2 infusions of chemotherapy left!
Here is my baby sister with her husband on the way into the Gonda Building at Mayo Clinic Rochester on January 13th for a follow-up baseline MRI to make sure she is breast cancer free! (She is!!)
My baby sister’s second MRI!
My baby sister began her preventative breast cancer screening last summer (you can read all about the beginning of her journey at this link). In short, she overcame an immense amount of anxiety that caused her to be unable to complete her first MRI exam until she discovered the miraculous help of Ativan (anti-anxiety meds) and an amazing MRI technician who stayed in the MRI exam room with her during the scan and held her hand the whole time. (If you have anxiety and have to get an MRI, feel free to request Ativan and/or an individual to come into the scan with you!!! According to my baby sister it works wonders!! :))
Because of my baby sister’s anxiety, Mayo let her know that she could bring whoever she wants with her into her MRIs going into the future–so, of course, she selected her husband to go in with her for the exam (pictured above).
Here is my baby sister all set up in the MRI checkin area getting her arms warmed up so they could start an IV with ease!
Sure enough, after she got all checked in and got her IV started which took five pokes and was fairly painful because her veins are super small, she was able to take some Ativan and her husband came back to scrub in with her. They went through metal detectors and marched right into the MRI exam room–which they were a bit worried at first about because her husband has a metal dental implant they thought might rip out of his mouth because of the magnets in the MRI exam–but the nurses and technicians assured them everything would be fine!
When the exam got started, my baby sister’s husband was able to hold her hand and they talked. Which was awesome. She said they talked about all kinds of things like what their dog was doing at home while they were away. 🙂 Then, as the test got going, the noise in the testing room got a bit more intense. Just like I described in an earlier blog post about my MRI experience(s), an MRI exam sounds a lot like an army of gnomes building a village and hammering metal on metal all around you (you can read about my first MRI at this link and my MRI biopsy at this link). So, as the test grew louder, my baby sister and her husband got to discuss my theory on gnomes, too. And so, after this experience, my baby sister and her husband agree: An MRI exam sounds like an army of gnomes building a village inside of a tube.
They couldn’t talk for the entirety of the test, but they were able to chit chat quite a bit, and he held her hand the entire time! She made it through the test without shaking and her doctor sent her a message with clear and encouraging results the next morning!
My baby sister and her husband went back to Mayo the next week to meet with our Breast Clinic doctor for a clinical exam and interpretation of her MRI results!
My baby sister’s “all clear!” appointment with our Breast Clinic doctor
My baby sister’s follow-up appointment with our breast clinic doctor was excellent. She and her husband got all of her questions answered about next steps–which will be clinical exams every 6 months and perhaps more frequently during pregnancy when and if that happens.
My baby sister will go back for a clinical exam and imaging in June/July 2021 just to make sure things are still a-okay, and then she will plan to have imaging done every year most likely for the rest of her life. We are praising God she is cancer free and covet your prayers that she will remain cancer free for the rest of her life!!! 🙂
Here is my twin sister with a beautiful window room at Mayo Clinic overlooking Rochester Methodist Hospital where we had our double mastectomy with reconstruction surgeries!
My twin sister’s 13th infusion of T-DM1
“I’m so glad I get to work with you today!,” the nurse said as she came in to set up my twin sister’s chemotherapy drugs. “I saw your chart, and saw you two come in together, and realized you’ve been coming here for a long time,” she said.
“I sure have!,” my twin sister responded. “We both had breast cancer, and we got diagnosed in September 2019. My twin sister had Stage 0 and was cured with surgery but I had Stage 2A and went through TCHP last year then T-DM1 this year because there was a little bit of cancer left at time of surgery.”
“Oh, wow, that is a long time!,” she said. “Congratulations on your 13th infusion of T-DM1 today–you’re almost there!”
“It’s pretty exciting!,” I said.
We asked her what inspired her to become a chemotherapy nurse and her answer was inspiring.
“Every nurse finds their niche,” the chemo nurse told us. “For example, I couldn’t work in geriatrics because I was so close to my grandparents and that would have been too hard for me. I found my home in oncology.”
We also learned a lot about pediatric chemotherapy which happens in the Mayo Building or at St. Mary’s Hospital campus due to the inpatient nature of it.
We told her she was an inspiration and thanked her for her help. Then we dropped off a dozen Gluten Free donuts we’d purchased at Drift Dough in Rochester for the chemotherapy nursing staff. They were elated.
Here is my twin sister watching the most epic scene in Wonder Woman getting ready for chemo!
As we were waiting for my twin sister’s chemotherapy drugs to be delivered, we put on Wonder Woman because it’s an awesome movie and it’s important to me to remind my sister she really is Wonder Woman for knocking out all this chemotherapy! As we were watching, we saw a lady get wheeled into the room next to us in a wheelchair wearing a sparkly pink mask.
“I like your mask!” my twin sister called out to her.
“Thank you! I’m a breast cancer survivor!” she said.
“We are too!” we said.
“Oh! Wonderful!” she said. “I beat breast cancer, and now I’ve been blessed with another cancer.”
“Just another opportunity to win the battle!” my sister told her.
She smiled.
“Nice to meet you both!” she said as her husband wheeled her away.
“Nice to meet you, too!” we said.
Here is my twin sister and me after she knocked out her 13th infusion of T-DM1/Kadcyla, standing in the chemo room which had a nice huge window overlooking the hospital where we both had our double mastectomies with reconstruction in 2019 and 2020!! 🙂
Heading into breast cancer survivorship together!
I got to accompany my twin sister down to her 13th infusion of T-DM1 at Mayo Clinic in Rochester last Friday and it was a pretty exciting and emotional day. A lot has changed since we first started this journey in August 2019–not only the outbreak of a global pandemic, but seeing God move, work, and make a way for us to be healed and delivered from breast cancer at the age of 30.
The ways we’ve seen God move, deliver, and heal us through the skillful hands, care, and compassion of our doctors has been nothing short of amazing. I broke down and started ugly crying when I got home after the day at Mayo with my sister because I am not entirely sure if I ever worked through all five stages of grief properly (oops).
As I’ve mentioned in previous posts, instead of working through denial, anger, bargaining, depression, and acceptance in sequence, I think I hopped right into the “acceptance” stage and pushed through this past 18 months without really “feeling” any denial, anger, bargaining, or depression. As we reach the end of my twin sister’s chemotherapy journey–even though it’s not my journey, but hers–and as I’ve mentioned in previous blog posts, I think I’m finally starting to realize the importance of knowing it’s okay to not be okay all of the time.
While I wasn’t entirely sure how to describe what I was feeling to my husband who was waiting for me, I started blubbering through tears and hoped something coherent would come out. I told him I was grateful for God’s healing and care for us, and how, while I was thankful that my twin sister only has one chemotherapy infusion left, that I was scared, too.
It’s the end of a journey that’s not even mine, but it’s been something that’s become so familiar to us that I don’t even know what it’s going to be like when we don’t have to ask for prayers for her to go into chemotherapy anymore. It’s one thing to look forward to treatments that are proven to kill cancer every three weeks–and a totally other thing to trust and know that God continues to heal, deliver, and protect her (and all of us) every day, whether or not we are going through chemotherapy or not.
My mom experienced similar fears and anxieties after being cured of DCIS in the early 2000’s. When she brought them up to her breast cancer doctor, he told her: “You can choose to live in fear of recurrence, but remember, you could also step outside of this office and be hit by a bus.” Moral of his story: Breast cancer and risk of recurrence is a reality, but as our doctors have told all of us, this risk is very small for all of us after our double mastectomies. Not to mention, stress is a carcinogen, so worrying about it literally won’t add any minutes, hours, or years to our lives. Haha.
Exercise is very important to my sister (as it should be!!) and she insisted we take the stairs in the Gonda Building as much as is possible. Before AND after her infusion!!! 😀
An attitude of gratitude
My twin sister read in a devotional she received from a coworker at her law firm recently that it’s very important to remind yourself of this every day: “I am waking up cancer free today and I get to wake up cancer free every day for the rest of my life.”
This affirmation is a good one, grounded in gratitude. Another thing my twin sister mentioned / recommended to me early on this year is that I start listening to Christine Caine’s “Equip and Empower” podcast. It’s available for free anywhere podcasts are available, so I downloaded it and started putting on her ~20 minute episodes whenever I get in the shower or am getting ready for my day.
It’s been amazing to listen to Christine Caine’s teaching because she’s an encouraging and motivational preacher who also happens to be a cancer survivor, a mother, a wife, and leads a global anti-human trafficking organization (The A21 Campaign). And she loves Jesus.
Her big reminders in the episodes I’ve listened to so far in 2021 include reminders that:
We are called to be more faith-filled than we are fearful.
Being afraid isn’t an excuse to not do something, but that it’s an excuse to trust God more and to believe He is bigger than any fear we might feel because often times God’s promises exist within “the land of giants” or fears we have that we need to run toward not away from because oftentimes God’s promises exist in the places we are most afraid to go.
That life is more about living out God’s purpose for you than it is to have status of any kind.
That taking “the next step” with courage and faith is more important than any fear we might feel; and that
We “become what we behold” so it’s important to remember we are made in God’s image and to be motivated by His love and promises for us over any other voices that might threaten our well-being.
Her messages and my time in Scripture this year have reminded me that, even if cancer comes for us again, that God is still good. And, the importance of gratitude and faith over fear–cultivating an attitude of gratitude has led me to explore what I’ve gained in this season of loss.
(To interrupt this somewhat heavy portion of this blog post, I’ve inserted a YouTube video of my twin sister kicking butt and insisting we take the stairs up to her blood test and chemotherapy infusion in the Mayo Clinic Gonda Building last Friday below. Even after her infusion she insisted we take the 10 flights of stairs down to the lobby. I was huffing and puffing and she was just fine!! Goes to show how important exercise, a positive attitude, healthy diet, and lifestyle choices are in the survivorship journey and I wanted to show this video as an encouragement to anyone going through a rough time–take the stairs!! :))
First of all: Breast cancer has taught me a lot about compassion, empathy, and what it means to trust God and know the Lord through and in the midst of physical and emotional suffering. And I’m not even the one who had to endure chemotherapy. Second: I do know that chemotherapy is what has saved my twin sister’s life. Third: If it hadn’t been for me going in for early screening in July 2019 and ultimately getting diagnosed with DCIS–or, Stage 0–breast cancer in September 2019, it’s possible that neither of us would still be here today.
How to suffer alongside someone is not something I cared much about before this breast cancer journey started–and I have learned so much about how to trust that God is in charge and has everything under control in seasons that feel full of darkness, doubt, and despair. Learning how to trust that God is good, even though we got diagnosed with cancer at age 30 and have to live with that reality for the rest of our lives, will be a lifelong challenge. But we can trust Him and that He is still good if we are healed and delivered of cancer and live to be 103 years old and die of something else like a malfunctioning parachute while skydiving or a rock face while hang gliding.
Trust in God really is the most important thing. That He loves us and wants what is best for us, and that He works everything out for our good and His glory. Even if that something happens to be a cancer diagnosis and chemotherapy, we are called to praise Him and cling to joy and trust in His promises anyway. Because His love never changes and is not dependent on our circumstances.
And also: Something that was driven home during our recent Bible study of the Book of James is that joy is a commandment, not a choice. We are commanded to have joy in all circumstances–something Jesus modeled for us in going to suffer on the cross for the joy set before him (Hebrews 12:2).
And so, we celebrate life and God’s goodness with things like piano duets in the lobby of the Gonda Building at Mayo Clinic (below)!!!!! 😀
What’s next???
We’ve started talking about what’s next for us when breast cancer treatments are over and done with–for example, what if we were to turn this blog into a book that could support women (and men!) going through cancer diagnosis and treatments? We’ve been blessed by cancer nonprofits including Phil’s Friends and Pink Ribbon Mentors, and we’ve been inspired by so many women who have gone on this journey before us, so we are wondering if we shouldn’t publish a book to encourage and support those going through breast cancer diagnosis and treatment(s) beyond just this blog.
It has been amazing to see the outpouring of prayers and support that have come from publication of this blog–for example, here is a note I just received from a breast cancer survivor this year!:
Praising God for your news! Our precious Healer! I found your blog when I was diagnosed with dcis with microinvasion in January. God lead me to it and you went ahead of me through each step from biopsy, to MRI, to sentinel lymph node injection to surgery and reconstruction. What a comfort and encouragement to me. ♥️♥️♥️ May your whole family feel peace and joy with this news! I’m so happy for you!
So we are wondering what it all is going to look like from here — we don’t want to miss an opportunity to glorify God in the process of healing! We are all praying about that! 🙂
God is so good!!!
Here is my twin sister back home with her husband and their baby Boston Terrier puppy Gizmo after a day full of appointments at Mayo Clinic Rochester!!!
Next steps
My twin sister has heard that you can ring a bell when you finish chemotherapy and she also heard she should get a pin to celebrate finishing! So she’s going to ask about that at her last chemo infusion coming up in just over a month. 🙂 She also wants to make sure to get a photo or two with some of her chemotherapy nurses–that is, assuming they are working on her last day on the chemo floor!
We also want to make sure we throw some “kicking cancer’s butt” parties for my sister, but aren’t sure what that looks like in the pandemic world we are living in right now (thanks, COVID).
As for my baby sister, she is “all clear” heading into 2021 and will have a six-month follow-up clinical exam in June 2021 with our breast clinic doctor!
Also: Here are some things coming up on the docket that we’d love prayer for and are looking forward to in 2021!:
Thursday, February 11th: My twin sister’s eye appointment follow-up to check on her microcystic edema at Mayo Clinic Rochester; and my twin sister’s follow-up pelvic exam at Mayo Clinic Rochester to make sure everything is stable after her baseline ovarian cancer screening in 2020
Friday, February 19th: MY TWIN SISTER’S LAST INFUSION OF T-DM1 at Mayo Clinic Rochester!!!!!!! YAY!!!!!!!!!!
Monday, March 8th: Dermatology appointment to remove and test a “mildly atypical” spot on my twin sister’s back (the dermatologist doesn’t think it’s skin cancer but just wants to make sure!)
Friday, March 12th: My follow-up with my plastic surgeon to ensure that I’m continuing to heal properly and there are no signs of capsular contracture; my twin sister’s one-year follow-up with her plastic surgeon!
June 2021: My 18 month Breast Clinic follow-up at Mayo Clinic Rochester and my baby sister’s 6-month clinical exam follow-up at Mayo Clinic Rochester
Thank you so much for your continued prayers for our health and healing, and for my baby sister’s deliverance from breast cancer (forever)!!!
God is good!!!
Here is my twin sister in the Gonda Building Lobby!
This blog post is the 36th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow A Daily Miracle on Facebook, Twitter, and Instagram.
This blog post is the 35th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
My twin sister traveled down to Mayo Clinic in Rochester with her husband yesterday for her 12th infusion of T-DM1/Kadcyla and now she’s 85.7% of the way done with her post-operative chemotherapy regimen!
Here are a few highlights from their visit including praises and new prayer requests for us at this moment in time (full details follow in the blog post below)–thank you so much again for your prayers for us as we travel this journey together!:
Praise!: My twin sister is 85.7% of the way done with her post-operative chemotherapy regimen ofT-DM1/Kadcyla! Her side effects have been minimal, especially compared to what she experienced after herneoadjuvant chemotherapy in 2019 and early 2020. She has headaches and a bit of nausea for about a week after each of her infusions of T-DM1, but that is small potatoes compared to what she’s been through and we hope and pray and trust this is the last time she ever has to do chemotherapy EVER!!! 😀 Prayer requests for her would be that her side effects continually improve and are manageable after each of her 2 remaining chemo infusions and that her corneal cysts would miraculously disappear even now!
Prayer request!: My twin sister’s corneal cysts that developed last year get a bit worse for the week after each of her T-DM1 infusions. But we’re asking for prayers that her microcystic edema will go away now or after her T-DM1 treatment is complete in a month or so! She can still see, which is a huge praise, and she only has 2 infusions of chemotherapy left!
Praise!: My twin sister had an echocardiogram to check on her heart health and everything is looking good! T-DM1 has impacts on the left ventricle in particular and her left ventricle looks a-okay so we are very grateful for that!
Prayer request!: My baby sister is heading into the next steps of her preventative breast cancer screening journey at age 26: Her 6-month follow-up MRI is taking place at Mayo Rochester next Wednesday, January 13th, to follow up on her baseline preventative breast cancer screening that began last summer! We are asking for prayers that they find absolutely nothing suspicious on this second baseline preventative scan and that she’s cleared with a green light! You can read all about her journey that started last summer in the blog post at this link.
Here is my twin sister knocking out her 12th infusion of T-DM1 at Mayo Rochester!!!
My twin sister’s 12th infusion of T-DM1/Kadcyla: Only 2 left!!!
My twin sister knocked out her 12th infusion of T-DM1 / Kadcyla without a reaction of any kind, had a nurse that was excellent at inserting her IV, and was in and out in just over 30 minutes of infusion time!
We do not take these victories for granted and are so thankful for the excellent care she’s received on her chemo journey at Mayo Rochester!
“I’m totally over getting chemotherapy infusions, but it’s going to be weird when this is all done,” she told me yesterday. “It’s been really nice to know that I’m able to go there and get the chemo done and everyone is taking good care of me.”
“You’re right!, it’s been a huge blessing to know you’ve been taken such good care of on the chemo floor!,” I said. “But the next step of survivorship will be great! They’ll continue taking great care of you at your follow-up appointments every few months!!”
“You’re right,” she said.
But survivorship is a much different journey than breast cancer treatment is, as I’ve written about in my posts about my 6-month and 12-month survivorship consult appointments. It’s a mental game!
Here is the view from my twin sister’s chemotherapy infusion room, she was so excited to have a window room overlooking Mayo’s campus in Rochester!
My twin sister’s update with her oncologist and remaining care plan!
My twin sister had an excellent appointment with her oncologist yesterday and was able to learn more about what the journey looks like from here.
First of all, she had an update with him about her blood levels and heart health so far. She gets a blood test before each infusion to make sure her platelets and neutrophils are where they need to be, and he was pleased with her results yesterday. Apparently, oncologists don’t get concerned unless platelet levels go down to 50, and my twin sister’s are holding steady around 165-70.
By the end of 2021, all of the chemotherapy should be out of her system and everything should be back to normal! My twin sister’s platelets were in the 368 range before chemotherapy started, but according to her oncologist, invasive cancer causes inflammation and increased platelet range, so my twin sister’s “normal” platelet level is more likely around 250. Now they are at 165-170, which he said is just fine.
My twin sister’s echocardiogram came back great as well! T-DM1/Kadcyla can cause problems with the left ventricle, but my twin sister’s heart is functioning at a great level which is a huge praise!!!
This, and the positive levels of everything else, are largely due to my twin sister’s healthy diet and exercise! She’s currently enrolled in a research study at Mayo Clinic about exercise: She’s been working out at least 30 minutes every day and that’s contributing to her well-being and physical health as a breast cancer survivor!
I’m not formally enrolled in the study but I’m doing my best to get 30 minutes of exercise in per day, too. 🙂
Here is my twin sister’s blood test results from yesterday–everything is looking good thanks to healthy diet and exercise!
Second, follow-up appointments after my twin sister’s chemotherapy infusions include appointments with her oncology team every 3 to 6 months. She will either see her chemo nurse practitioner or her oncologist for a physical exam to check for recurrence. Also, at one of these appointments shortly after her chemotherapy treatments are over, they are going to do a one-off blood test to test for any changes in her DNA that could indicate recurrent cancer of any kind. The good news is that, often times with aggressive metastatic breast cancer, a recurrence happens within the first 18 months, and my twin sister’s oncologist isn’t worried about recurrence at all–she is all clear at month 9 since surgery and month 16 since diagnosis!!!
Fourth, my twin sister’s oncologist is befuddled by her microcystic edema and thinks it could be a result of T-DM1, could be a result of Tamoxifen, or could be the result of a combination of both. He said that, because T-DM1 is so new, he is not sure if it’s one or the other or drugs interplaying together because sometimes endocrine therapy and chemotherapy drugs together have interaction effects. However, he is optimistic the microcystic edema will go away at end of T-DM1 as it appears to be directly correlated with her infusions, and he’s glad she’s going to see eye doctor at Mayo again soon!
Fifth, my twin sister doesn’t need to worry about any sort of long-term side effects of T-DM1/Kadcyla! The only potential side effect her oncologist mentioned was “chemo brain,” but he also said there’s no cognitive test for “chemo brain” that can say “this person lost a few IQ points,” etc.–and, as I’ve written about my cancer survivorship before, I feel dumber now than I did last year, too, and it might just be middle age because I didn’t even go through chemotherapy. Ha, ha! But my twin sister’s oncologist said if she has trouble remembering certain things, she can blame “chemo brain” if she wants. 🙂
Sixth, my twin sister’s oncologist presented my twin sister with counseling resources that Mayo Clinic has: Cancer-focused, cancer survivorship counseling resources that he’s going to connect her with in hopes that would be helpful as she moves forward into survivorship!
We couldn’t publish a post without a photo of Gizmo, my twin sister’s baby Boston Terrier! Our mom, dad, and baby sister babysat him during my twin sister’s infusion yesterday!
Next steps
My twin sister has heard that you can ring a bell when you finish chemotherapy and she also heard she should get a pin to celebrate finishing! So she’s going to ask about that at her last chemo infusion coming up in just over a month. 🙂
Also: Here are some things coming up on the docket that we’d love prayer for and are looking forward to in 2021!:
Wednesday, January 13th:My baby sister’s second MRI as part of her baseline preventative breast cancer screening. Her journey started last summer (you can read all about it on this blog post!) and we are so proud of her for going through preventative screening at age 26!
Friday, January 29th: My twin sister’s 13th infusion of T-DM1 at Mayo Clinic Rochester
Friday, February 19th: MY TWIN SISTER’S LAST INFUSION OF T-DM1 at Mayo Clinic Rochester!!!!!!! YAY!!!!!!!!!!
Monday, March 8th: Dermatology appointment to remove and test a “mildly atypical” spot on my twin sister’s back (the dermatologist doesn’t think it’s skin cancer but just wants to make sure!)
Friday, March 12th: My follow-up with my plastic surgeon to ensure that I’m continuing to heal properly and there are no signs of capsular contracture; my twin sister’s one-year follow-up with her plastic surgeon!
Thank you so much for your continued prayers for our health and healing, and for my baby sister’s preventative breast cancer screening journey that continues next week!!
God is good!!!
This blog post is the 35th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
This blog post is the 34th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
Here are a few highlights (including buying some of the best gluten free donuts in the world from Drift Dough in Rochester, MN), praises, and new prayer requests for us at this moment in time (full details follow in the blog post below)–thank you so much again for your prayers for us as we travel this journey together!:
Praise and prayer request!: My twin sister is 78.6% of the way done with her post-operative chemotherapy regimen ofT-DM1/Kadcyla! Her side effects have been minimal, especially compared to what she experienced after her neoadjuvant chemotherapy in 2019 and early 2020. She has headaches and a bit of nausea for about a week after each of her infusions of TDM1, along with corneal cysts that have mysteriously developed and get a bit worse for the week after each infusion. But we’re hoping her microcystic edema will go away after her TDM1 treatment is complete. She can still see, which is a huge praise, and she only has 3 infusions of chemotherapy left! We hope and pray this is the last time she ever has to do chemotherapy EVER!!! 😀 Prayer requests for her would be that her side effects continually improve and are manageable after each of her 3 remaining chemo infusions and that her corneal cysts would miraculously disappear even now!
Praise and prayer request!: My twin sister and I are both “looking good” following appointments with our plastic surgeon, but I have to go back in 3 months instead of 6 months to make sure I’m not developing a “capsular contracture!” Since October 10th, I’ve been experiencing some pain on both sides of my chest, and discovered that could be the result of two things: 1) Nerve regeneration, which is normal for double mastectomy / breast reconstruction patients or 2) The beginning of a “capsular contracture,” which is defined by Mayo as “Scar tissue that distorts the shape of the breast implant.” So, praises are that both my sister and I “look good” and the pain I’ve been experiencing is not a cancer recurrence; and the prayer request is that I’m not developing a capsular contracture!! I’ll have another update on that after my next follow-up appointment on Friday, March 12th.
Every time we visit Rochester, MN, we try to pick up a batch or two of the best gluten free donuts I’ve ever had. This time we pre-ordered two dozen and delivered a bunch to our care teams and chemotherapy nurses!
Spreading Christmas cheer with Drift Dough and homemade toffee
Before we left for our day full of appointments at Mayo Clinic together, we made sure that we brought some holiday cheer with us. We put together “care packages” for our doctors and care teams including homemade toffee (made by our mom and baby sister, who plan to go into business with it soon–stay tuned!!) for all of our doctors. We also gave each of our doctors Christmas cards from our entire family and stopped into Drift Dough, the donut shop with the best gluten free donuts in the world!, to make sure we had donuts for the Mayo Clinic Breast Clinic team and the chemotherapy floor nurses on Gonda 10.
You can preorder donuts from Drift Dough. We highly recommend. 🙂
Here I am all checked in and ready for my plastic surgery follow-up appointment with my husband in the Mayo 12 lobby, donuts in hand!
Plastic surgeon updates!
I was excited to see my plastic surgeon because I have been experiencing some mild pain across my chest since October 10th and wanted to know what that was all about. The way I explained it to my plastic surgeon is that I don’t have any lumps or bumps anywhere, but I do have dull aches and shooting, stinging pains that started on October 10th. These pains alternate between occurring at the surface / skin level to middle-level depth on both right and left sides of my chest from my armpits across to the center of my chest / sternum. The pain is on and off every few days.
So I asked her: Is this something to be concerned about, or just my nerves waking back up?
She said it’s more than likely nerve regeneration–the operation was traumatic to my chest after all as a bunch of my nerves got wrecked and my incisions made me look like Leonardo DiCaprio after he got mauled like the grizzly bear in The Revenant–but that it could be the beginning of a “capsular contracture” and she wanted to see me in three months to check up on that.
Also, she and her resident both said that, to help with the pain if it’s a result of nerve regeneration, you can massage your chest wall by your armpits which is something that helps catalyze nerve regeneration.
Here are me and my husband waiting to see my plastic surgery doctor at Mayo Clinic right next door to where my sister was meeting with her first!
I also told her that I’ve been experiencing some fatigue that comes and goes along with some brain fog, but that it’s better than it was earlier this year. I asked her if she knew what exactly is going on and she said that she’s not entirely sure but there is some academic literature that says general anesthesia can change your EEG brain waves but that is mostly a short term effect that should be better after a year.
“I’m looking for an excuse for why I’m tired and feel like my brain is moving slowly all the time and you’re not giving me anything!” I joked.
“You don’t seem like a complainer to me!” she said. “Besides those studies, I’m not really sure what to tell you about the fatigue. Usually with patients who just have surgery a year out, they’re fine. Also, there’s a lot that’s gone on this year with you: First, your surgery; then your sister’s surgery, and you’re worried about her treatments…”
“Who says I’m worried?!!” I interrupted.
“Ha, ha. I’m sure you’re worried.” she smiled.
“Yes, I’ve been worried.” I said.
“So there’s that, then there’s COVID,” she said. “This year has been terrible. There’s a lot going on.”
That was all very true and so I took her advice to heart. My fatigue is very likely due to environmental and emotional factors. So I decided I’m going to be more kind to myself and take plenty of time to rest in the healing process. That’s a reminder and a reality that’s been very hard for me to handle.
Our plastic surgeon also loved her toffee!!:
“You’re so sweet! I will be sure to share with everyone!,” she said.
“You don’t have to share if you don’t want to!,” I said.
She turned to her resident and nurse and said:
“Did you hear that, guys? I’m not sharing!”
She closed the appointment by saying: “I was going to graduate you today, but due to the pain you’re describing and have been experiencing, I want you to come back in 3 months to make sure you aren’t developing the beginning of a capsular contracture. If you are, it will feel tight, and there will be pain, so keep an eye out for any tightness or hardening of the implant and I’ll see you in 3 months!”
Here is my twin sister and her husband at her 6-month plastic surgery follow-up!
My twin sister’s plastic surgeon updates
My twin sister had her plastic surgery update next door to me and she had a great appointment, too! There was a small bump protruding from her implant on her left side and she found out that was because sometimes the implant protrudes out following the surgery from underneath the alloderm, also known as the repurposed cadaver skin that holds our implants in place.
It’s not painful for her, so that’s good, and the only times you can see it is when she raises her arms above her head, which isn’t a huge deal! She’ll just plan to go back with me again on Friday March 12th for her one-year post-operative appointment! She will also go back (like me :)) in 5 years for a checkin to see if it’s time to get new implants!
Here is my twin sister and her husband all checked in for her 6-month plastic surgery follow up appointment on Mayo 12 in Rochester!
My one-year survivorship appointment at Mayo Clinic’s Breast Clinic in Rochester, Minnesota
I was beyond excited to see my primary care doctor at the Breast Clinic, mostly because she was the one I was matched up with when this journey all started in August 2019 and she’s been AMAZING in “quarterbacking” my care team in addition to providing us with excellent care and answers to all of our questions along the way. She took on both of my sisters as patients in the months following my initial visit, too, so it’s become a family affair!
It had been a year since I’d last seen her, so we caught up about what all has unfolded in 2020 so far and she made sure to do a thorough physical examination. We talked about the pains I’ve been experiencing across my chest, and she agreed that it’s probably nerve regeneration. She also agreed it was a good idea to come back and see my plastic surgeon again in three months to address / evaluate any risk of “capsular contracture” that I’d also discussed with my plastic surgeon.
In the meantime, she said she was not able to find any signs of capsular contracture on my physical exam, which is great!
The best line of my entire post-visit note file was definitely this: “Certainly no indication of local or distant recurrence of her disease.”
Woo!!! I’ve made it to one year cancer free!! This is SUCH a relief especially considering recurrence of breast cancer especially in young women tends to happen within the first five years. Take that, breast cancer!!!
Because it had been a year since I’d seen her, I had a list of questions. Here they are:
Here my twin sister and I are all checked in for my one-year survivorship meeting with my primary breast clinic doctor and my twin sister for her chemotherapy appointments upstairs!
Q: My first question is about recurrence: Given I was only 30 when I was diagnosed with DCIS, what are the chances it will come back eventually? What are my risk factors and how can I minimize my chances of it never coming back in my entire life?
A: We have your recurrence rate the lowest we can get it with a bilateral mastectomy. Also, stay active. And sleep is important.
A: I do not have concerns over prenatal vitamins or supplements for you. Pregnancy itself does cause a higher estrogen state, so your risk of recurrence is slightly higher that time. But we’ll keep a close eye on you.
A: So, there are three different stages of early onset menopause: Before age 40, ages 40-44, and 45+. If you can make it to age 40, and then keep a close eye on things through ultrasounds and CA-125 levels until your mid-40s, that’s best case scenario. Otherwise you start to see, with your ovaries removed before age 40, an increased risk of early onset dementia, osteoporosis, and cardiovascular problems. BRCA1 patients are often recommended to get their ovaries removed between the ages of 30 and 35, which is super early, but is doable because usually we can give you hormones / estrogen to offset the effects of that early ovary removal. But because of your early breast cancer being estrogen positive, I would hesitate to give you estrogen of any kind. So those are things to consider.
More genetic testing???
One other thing my doctor suggested is that, genetically, me, my mom, and twin sister could get our entire genome sequenced to see where there are tweaks anywhere to signify why we got breast cancer so early.
“Who knows, maybe they’ll even find a new high risk breast cancer gene!,” my doctor said.
“Then we can name it after ourselves! Or, after you! Because you’ve been quarterbacking this whole thing!” I said.
“I’m not sure about that,” she laughed.
It was so awesome to see her, because I’m still convinced she’s the best doctor in the universe. 🙂 I’ll go back to see her in June 2021 for my 18 month Survivorship Consult!
While I was at my one-year survivorship appointment / clinical exam with my primary breast clinic doctor, my twin sister was up on Gonda 10 getting her 11th infusion of T-DM1 / Kadcyla!
My twin sister’s 11th infusion of T-DM1 / Kadcyla!
My twin sister knocked out her 11th infusion of T-DM1/Kadcyla like the champion that she is!!! She brought Drift Dough for all of her chemotherapy nurses and they were SO excited because it turns out most of the chemo nurses and techs are gluten free!!
Her favorite chemo nurse was working and said to my sister and her husband, “Hey, it’s two of my favorite people!!!” They had a great conversation about how everyone is attempting to keep their heads above water during COVID-19 and how everyone is looking for silver linings.
It makes me smile to know everyone there makes her smile. I’m SO thankful she and her husband have been able to continue her chemotherapy regimens at Mayo Clinic in Rochester, Minnesota!!!
I’m also thankful her side effects after T-DM1 / Kadcyla have been minimal compared to her infusions of TCHP last year and into early 2020. She has some nausea and fatigue and headaches the week following the infusions of T-DM1 but all in all is doing excellently. We continue to praise God as our great Physician and Healer!
Trusting God in the midst of trials
Last weekend at church our pastor preached a sermon about God’s love for us. Given it’s Christmas this week, it’s fitting that he would do that, but the main point of the sermon was that, while we were helpless, God sent His Son to save us (1 John 4). Our pastor’s emphasis on the word helpless hadn’t stuck with me before, but last weekend, it did. It came on the heels of a devotional from YouVersion I heard this week that focused on Philippians 4. That devotional reminded me that God is with us within trials, not just in spite of them:
“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”
Paul wrote the letter of Philippians in chains in jail, and he was able to tell us to rejoice anyway. As I’ve written before, going through breast cancer has rendered me more helpless than I’ve ever been in my life. I’ve never experienced anything like being told I had breast cancer and that surgery would be necessary to save my life. Or hearing that my twin sister had breast cancer, too, and that she’d need chemotherapy AND surgery to save her life. Not to mention how terrifying it is to go into a surgery trusting a room full of doctors, surgeons, and technicians with my life and trusting and believing I’d wake up cancer free.
I’d be lying if I said it wasn’t difficult to trust that I’ll remain cancer free for the rest of my life–and that, if the cancer does come back, that I’ll trust God anyway. That’s a challenge I’m seeking the Lord’s strength to overcome: That the Lord would provide me with His joy and strength that would cast out any doubt and unbelief no matter what circumstances I might face in years to come!!!
Just like the verse from Isaiah 12:2 I put in above–which was the daily YouVersion devotional the day we went to Mayo Clinic last week–we don’t need to be afraid! Anytime I start to doubt God’s faithfulness I simply remember all that He’s delivered me and my twin sister and my baby sister from over the past 18 months :)) That’s been a good place to start :))
We went to Mayo one week before Christmas Day so it only makes sense we’d put a Santa hat on the Mayo Brothers for our photograph with them outside the Gonda Building!! We are so grateful for our loving and supporting husbands who drive us to our appointments and stay with us through our appointments with all of our doctors!!!
Next steps
I’m SO grateful for the “great cloud of witnesses” that has surrounded us on our breast cancer journey so far. So many people have come alongside us to encourage us, support us, and are praying for us daily! I’m also grateful for God’s faithfulness throughout this entire journey. His strength has truly become our song, and his joy is our strength within that.
Silver linings of our journey so far include that my twin sister and I both have been able to identify more with Christ’s sufferings more than we’ve ever been able to in our lives. The Bible study we just went through with a group of women at our church in the Book of James was especially encouraging as we were reminded that we are commanded to consider it “pure joy” whenever we face trials of many kinds, including breast cancer–because we know that “the testing of our faith produces perseverance” (James 1:2-4).
Here are some things coming up on the docket that we’d love prayer for and are looking forward to in 2021!:
Friday, January 8th: My twin sister’s 12th infusion of T-DM1 at Mayo Clinic Rochester
Wednesday, January 13th: My baby sister’s second MRI as part of her baseline preventative breast cancer screening
Friday, January 29th: My twin sister’s 13th infusion of T-DM1 at Mayo Clinic Rochester
Friday, February 19th: MY TWIN SISTER’S LAST INFUSION OF T-DM1 at Mayo Clinic Rochester!!!!!!! YAY!!!!!!!!!!
Monday, March 8th: Dermatology appointment to remove and test a “mildly atypical” spot on her back (the dermatologist doesn’t think it’s cancer but just wants to make sure!)
Friday, March 12th: My follow-up with my plastic surgeon to ensure that I’m continuing to heal properly and there are no signs of capsular contracture; my twin sister’s one-year follow-up with her plastic surgeon!
Thank you so much for your continued prayers for our health and healing, and for my baby sister’s preventative breast cancer screening journey!!
God is good!!!
This blog post is the 34th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
This blog post is the 33rd in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
My twin sister just knocked out her 10th infusion of T-DM1/Kadcyla atMayo Clinic in Rochester, and her baseline ovarian cancer screening results are in at Mayo Clinic in Rochester: THE OVARIAN CYST IS SHRINKING AND SHE DOESN’T HAVE OVARIAN CANCER, WOOHOO!!! Thank you all for your continued prayers for her deliverance and healing!!!
Here are a few highlights, praises, and new prayer requests for us at this moment in time (details follow in the blog post below)–we are literally praising God so much in recent days that we can hardly believe it!:
Praise!: My twin sister’s “suspicious” ovarian cyst is “resolving on its own / shrinking” and is no longer suspicious! We are SO grateful that God delivered her from what could have been/turned into ovarian cancer and that all of our prayers have been answered: 1) The cyst is not cancerous! and 2) The cyst is shrinking and should eventually and disappear completely on its own!!! That means my twin sister doesn’t need to have the cyst OR any of her ovaries removed at this time!!! Thank you again for your prayers!!!
Praise!: My twin sister is 71.4% of the way done with her post-operative chemotherapy regimen ofT-DM1/Kadcyla! Her side effects have been minimal (a bit of nausea along with corneal cysts that have mysteriously developed but we’re hoping will go away after treatment is complete!), her hair is growing back in!, and she only has 4 infusions of chemotherapy left! We hope and pray this is the last time she ever has to do chemotherapy EVER!!! 😀
Praise!: My twin sister’smicrocystic edema keeps improving slightly and is stable, plus her eye doctors are both “hopeful” that it will clear up after her treatment is over! Last month, my twin sister woke up one Saturday morning and could see/read the clock in her kitchen and the closed captions on her television for the first time in three months! We are so grateful for her healing! She said it’s still a bit hard to see certain things especially in the days following each infusion of T-DM1, but it’s a huge praise that she’s stable/improving and her doctors are hopeful the cysts will clear up when treatment is over!!
Praise!: My sister saw her dermatologist this week, who said that the “suspicious spot” on her back that her gynecologist inquired about a few months ago is “mildly atypical” but nothing to worry about! He wants to remove it to make sure it’s not cancerous, but there is “no rush” based on what he’s seeing at this point, so we’re waiting until Monday, March 8th–after her chemotherapy regimen is over–to do that procedure.
Gizmo the Boston Terrier has been a bright spot for my sister and our entire family along the treatment journey!
Emotional whiplash aka ovarian cancer screening results (she doesn’t need surgery right now and she doesn’t have ovarian cancer, YAY!!!)
We had a nail-biting few weeks waiting for that follow-up ultrasound to happen, and I would be lying if I said they weren’t some of the most stressful weeks of our lives. We’d just received news that my twin sister had a suspicious cyst on her ovary. We were all mentally preparing to send my twin sister into the operating room for the second time this year to test for yet another cancer. That would be two major operations for her in a year’s time: First, to remove first her breasts; and second, potentially both ovaries, all while she’s been on chemotherapy.
My twin sister, who never cries, broke down and started crying during Bible study last month when she asked for prayer for all this. I was grateful she felt comfortable enough to share her request but it broke my heart to see her crying because I knew how difficult it was for her to process the fact that ovarian cancer might be in the cards for her at this point in time.
I asked my sister a few weeks ago: “What are you most afraid of?”
She thought for a minute.
“I don’t want to have to deal with another cancer,” she said. “I don’t want to have to go through chemotherapy again, either.”
She’s one of the strongest people I know and to hear this broke my heart. As her “big sis,” all I want to do is protect her from the scary and painful things in life or take the blows for her, but I’m totally helpless here because chemotherapy is what she needs to cure her cancer and I didn’t want her to have another cancer, either!!
We prayed together, but that didn’t necessarily make it easier to process or sit with the fact that she could have ovarian cancer.
Mercifully, after a few weeks’ wait, Praise the Lord that we received news last week that, due to results of her follow-up ultrasound, in a direct answer to prayer!, my twin sister got a call from the resident/fellow in the gynecological oncologists’ office who told her that, based on the ultrasound results, it looked like the cyst was shrinking, and that surgery would likely not be necessary!
My lack of celebration/excitement was definitely due to a severe case of emotional whiplash. It all started three weeks ago, when I wrote my last blog post about how we might need to send her in for surgery again. And then, today, we found out we didn’t need to send her to the operating room anymore! It’s a lot to take in / process–but God has proven Himself faithful again (and again)!
I wrote down several detailed questions for her gynecological oncologist appointment the Monday after her ultrasound results came in, and I felt much better after my questions were all answered in detail–the investigative journalist in me was satisfied. 🙂
Here is a summary of the conversation we had with the gynecological oncologist if anyone is wondering how that conversation went!
Here is my twin sister knocking out chemotherapy infusion number 10 at Mayo Clinic Rochester!
Joining the ovarian cancer “previvors” at Mayo Clinic Rochester
We had lots of questions prepared for our gynecological oncologist at Mayo Clinic in Rochester because, well, ovarian cancer would totally suck and we wanted to be 100% sure we were making the right decision in not sending my twin sister into the operating room at this point in time.
So, here are a few things we asked her via video visit and how she responded! The bottom line is that, just like I found out at my baseline ovarian cancer screening appointment last January, that we are in a bit of a pickle because ovarian cancer is so tricky to spot and screening hasn’t advanced to a place where it’s 100% accurate 100% of the time.
But, because we are moderate to high risk due to family history, our gynecologic oncologist recommended ovarian cancer screenings every 6 months or every year–whichever we’d be most comfortable with. “Surveillance is not harmless,” our doctor said. “It’s anxiety inducing because you’ll always find something. It’s the same thing with surgery.”
Here are our main takeaways:
“Are you sure we shouldn’t take the cyst and her ovary out right now?” Our doctor reassured us that, if the cyst had grown or looked unusual at all, then “we would have taken it out.” However, the cyst shrunk from 8cm to 3cm, and “it looks to be resolving, and it’s not complex.” She also said: “If you came to me and said to me, ‘I need to have my ovaries out, I need to have my fallopian tubes out, because I can’t deal with this anxiety anymore,” then we’d have a real conversation.” So, right now, her ovaries stay!
She recommended baseline ovarian cancer screening for us every six months to a year, whatever we’re most comfortable with. That means CA-125 blood tests, physical exams, and pelvic ultrasounds for both of us every six months to every year.
She recommended removal of both of our ovaries and/or fallopian tubes at age 39. This is 10 years before our grandmother’s diagnosis with ovarian cancer at 49.
“I do think that watching you carefully makes sense.” 1 in 8 women get a breast cancer, and 1 in 80 get ovarian cancer. But women physiologically produce cysts that can resolve on their own every month, so every time they do ultrasounds they’re going to find something. She said: “Surveillance in non-high risk patients has no role. Surveillance in BRCA mutation patients makes a lot of sense. And then there are people in between, and their surveillance falls somewhere in between.” We are in between, and are figuring out a plan that works for us as we go!
So we both get to join the ovarian cancer “previvor” group at Mayo Clinic, and we both have seven more years before menopause! (Well, I guess for my sister, it’s going to be her second time through menopause, because her first round of chemotherapy forced her into menopause for a bit.) Woohoo!!!
Here we are at my twin sister’s eye doctor appointment to check up on her corneal cysts, which seem to be “clearing up” and at the very least are stable!
Corneal cysts are stable / getting mildly better!
Both of the eye doctors my sister has been seeing–one here in the Twin Cities, and one at Mayo Clinic in Rochester–agree that her corneal cysts are “about the same” and perhaps even “marginally better” than her first visit(s) to each of them in September 2020! This is fantastic news because it means she can keep going with her chemotherapy and Tamoxifen regimen, which is what she wanted to do all along!
One new thing we figured out is that, based on some scholarly literature that my sister’s Mayo Clinic eye doctor found a couple of weeks ago, there is some academic evidence that her corneal cysts could be a result of T-DM1 instead of Tamoxifen. That’s because T-DM1 and other similar newer chemotherapy drugs have been proven to cause some eye problems, and some newer chemotherapy drugs actually require regular eye exams along with their regular distribution.
The corneal cysts could also be a combination of both T-DM1 and Tamoxifen. In any case, her Mayo doctor in particular is optimistic the cysts will get better starting in February, when her infusions of T-DM1 are over; and he’s even more confident that it will reverse after she stops Tamoxifen. He will keep watching her every 3 months anyway!
If for some reason the corneal cysts don’t clear up at the end of treatment, there are a couple of options, one of which is to do a surgical procedure called “PTK” where the eye doctor would scrape corneal cysts off with a laser if needed. But that procedure would be painful, and the days following surgery are uncomfortable. Also, the eye doctor in the city said that PTK procedure can be difficult because it can have “unpredictable results” and there’s a chance it would cause scar tissue and actually make the condition worse than it was before as a result. But hopefully we won’t even need to consider that because every research article the eye doctors have seen suggests the cysts will clear up because her cysts are on the exterior layer of her cornea–if they were on the interior, her doctors would be more concerned.
To reiterate: My twin sister’s oncology team and the chair of Mayo’s research in the eye clinic have never seen a patient with corneal cysts as a result of Tamoxifen. She is literally “Patient Zero!” We’re just glad she can still see at least marginally!
Dermatologist checkup
At my twin sister’s gynecology appointment / baseline ovarian cancer screening appointment a few months ago, her gynecologist saw a “suspicious spot” on my twin sister’s back. So she made a dermatology appointment to get it checked out (pictured above). He said the spot on her back is “mildly atypical,” and should be removed to be tested to ensure it’s not cancer. He offered to do it in his office that day, but also said there was no rush, and that he’d be happy to wait until her chemotherapy regimen is over in February 2021. That way, her body won’t have to go through a procedure however small it is in addition to the chemo she’s already enduring.
So she made an appointment for Monday, March 8th, to get it removed and tested to see if it’s skin cancer but he’s optimistic it’s nothing to worry about!
“Congratulations on almost being done with chemo!,” he said as he left. “That’s an impressive feat. Keep me posted on how it all goes and I’ll see you when it’s all over!”
My sister smiled. 🙂
Celebrating one year cancer free!
Last week was my one-year-anniversary of waking up from surgery cancer free and being discharged from the hospital on my 31st birthday! In some ways I can’t believe it’s only been a year since my surgery. In other ways it feels like it’s been 10 years. I have my official one-year-follow-up appointment on December 18th, so stay tuned for a report after that from my plastic surgeon and primary breast clinic doctor on how I’m doing one year in to survivorship!
Here we are at my twin sister’s dermatologist appointment! She’s all set to go back March 8th to have a “mildly atypical” spot on her back removed and tested!
Next steps
Sometimes I wonder what my 18-year-old self would think if I got a glimpse of the future and saw my life now. I think there’s a reason God doesn’t reveal the future to us. It’s because He knows we wouldn’t be able to handle it. But He gives us enough strength for each day and that’s enough for me!!!
At Bible study a few weeks ago, we started going through the Book of James. The first chapter is all about trusting God in the midst of suffering and trials.
I said that sometimes it’s difficult for me to be grateful for things like going through breast cancer. In response, a woman in my study asked me:
“If you hadn’t been diagnosed with breast cancer, would your sister have gotten screened?”
We all turned to my sister, who said, “No.”
“See! So you can be grateful, because if you were never diagnosed with breast cancer, you might not have a sister anymore!,” the woman said.
Which is very true. That moment reminded me how easy it is to forget God’s goodness and mercy, and how important it is for us to always desire to stay in the center of God’s will for our lives. Even if it’s in the middle of a fiery furnace, like Shadrach, Meshach, and Abednego in Daniel 3.
Another lesson learned during that Bible study is that, throughout life, God will very likely give us more than we can handle more than once. But I’m learning to thank God for even that. Because nothing is impossible with or too hard for God.
Here are the appointments coming up in the not-too-distant future!:
Friday, December 18th: My one-year follow-up appointment with my plastic surgery team and primary breast clinic doctor at Mayo Clinic Rochester!
Friday, December 18th: My twin sister’s 11th infusion of T-DM1 and follow-up with plastic surgery team at Mayo Clinic Rochester!
Friday, January 8th: My twin sister’s 12th infusion of T-DM1 at Mayo Clinic Rochester
Friday, January 29th: My twin sister’s 13th infusion of T-DM1 at Mayo Clinic Rochester
Friday, February 19th: MY TWIN SISTER’S LAST INFUSION OF T-DM1 at Mayo Clinic Rochester!!!!!!! YAY!!!!!!!!!!
Monday, March 8th: Dermatology appointment to remove and test a “mildly atypical” spot on her back (the dermatologist doesn’t think it’s cancer but just wants to make sure!)
Thank you so much for your continued prayers for my twin sister’s health and healing!! God is good!!!
This blog post is the 33rd in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
This blog post is the 32nd in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
My twin sister just knocked out her 9th infusion of T-DM1/Kadcyla at Mayo Clinic in Rochester, her corneal cysts are miraculously improving somewhat (!), and she started baseline ovarian screening at Mayo Clinic in Rochester, which will continue there later this month. Here are a few highlights, praises, and new prayer requests for us at this moment in time!:
Praise!: My twin sister is 64.3% of the way done with her post-operative chemotherapy regimen of T-DM1/Kadcyla! Her side effects have been minimal, her hair is growing back in!, and she only has 5 infusions of chemotherapy left! We hope and pray this is the last time she ever has to do chemotherapy EVER!!! 😀
Praise!: My twin sister’smicrocystic edema has improved slightly! Two weeks ago Saturday, my twin sister woke up and could see/read the clock in her kitchen and the closed captions on her television for the first time in three months! We are so grateful for her healing! She said it’s still a bit hard to see certain things especially in the days following each infusion of T-DM1, but it’s a huge praise that she’s improving!!! Less than 1% of patients who take Tamoxifen end up with eye problems, and it looks like my sister is one of them! The corneal cysts she has are likely exacerbated by eye dryness caused by her T-DM1 infusions, and it’s a huge praise that she had this recent improvement! Our prayer is that they continue to improve and eventually disappear completely!
Urgent prayer request!: My twin sister has a 4cm cyst on her left ovary that is “suspicious” and may need to be surgically removed in December. Please pray with us: 1) That the cyst is not cancerous; 2) That the cyst shrinks and disappears completely by her follow-up appointment / screening on Friday, November 27th, or Black Friday / the day after Thanksgiving! There is a chance that this cyst will “resolve on its own,” and that is our and the doctor’s hope! But, if it doesn’t, my twin sister will have the cyst, along with potentially her left ovary and fallopian tube as well, removed in a surgical operation and tested for ovarian cancer at Mayo Clinic Rochester in December. Thank you for your prayers!!!
Here is my twin sister dominating her 9th infusion of T-DM1 / Kadcyla at Mayo Clinic Rochester on the 10th floor of the Gonda Building!
My twin sister dominated her 9th infusion of T-DM1!
My twin sister is now 64.3% of the way done with her adjuvant chemotherapy regimen of T-DM1 / Kadcyla! She only has 5 infusions left and couldn’t be happier about that. We are keenly aware that chemotherapy regimens get more intense as they go along, so we cannot wait for her to be finished!
The chemotherapy floor in the Gonda Building is on floor 10, overlooking Rochester. My twin sister was thankful to have a window room–she’s always grateful to be able to look outside while having her infusions!–and last Friday she got to overlook Rochester Methodist Hospital, where we both had our double mastectomy with reconstruction surgeries last December and last March, respectively.
During my twin sister’s most recent infusion, one of her favorite chemotherapy nurses found her and stopped in to catch up and say hello!
“It’s been a long year for you!,” her favorite nurse said. “I still remember Day 1! Room 28!!”
The fact that this nurse remembered the room my twin sister was in for her first chemotherapy infusion given the fact she sees hundreds of patients per year was amazing. Then again, my twin sister’s first chemotherapy infusion was memorable for a number of reasons, not least of which was because my twin sister had a “reaction” to one of her chemotherapy drugs, Taxotere. This particular nurse was the one by my sister’s bedside the whole time, helping her back to baseline and calling in the acute chemotherapy nursing team to assist with bringing her back to stability.
Given this context, it makes sense this nurse would remember my sister! But it’s still remarkable that she cared enough to stop in and talk with my sister and her husband for a half hour even though she wasn’t the nurse assigned to her bay that day. They got to talk about life, how my sister’s treatment is going, and about my twin sister and her husband’s new puppy, Gizmo (you can follow him on Instagram @gimme_mo_gizmo)! They shared pictures and videos and had a great time chatting. My sister’s spirits were high when she got home after her appointment that day, many thanks to her talks with doctors and nurses who are so thoughtful and caring!
Godsends, truly. Mayo Clinic doctors and nurses are the best. 🙂
My twin sister and her husband spent some quality time at Mayo Clinic Rochester last week for three appointments: A gynecological oncology consult, a survivorship consult at the Breast Clinic, and her 9th infusion of T-DM1!
My twin sister’s “Survivorship Consult” at the Mayo Clinic Breast Clinic
Right before her 9th infusion of T-DM1 last week, my twin sister was able to have a “Survivorship Consult” at the Breast Clinic. She met with an APRN who went over my twin sister’s entire breast cancer journey to date, which has been incredible. It still is hard to believe all that’s unfolded in a year’s time!
Not only was my twin sister able to have a great meeting with the APRN, have a physical exam, and be told there are zero signs of recurrence (WOOHOO!!! TAKE THAT CANCER!!!!!), but she was also able to see our primary breast clinic doctor, who I’m convinced is the best doctor in the world! When she walked in and saw my twin sister and her husband in their “Team Mayo Clinic” breast cancer tshirts, she said:
“I love your shirts, you guys!, but they don’t look like mine!,” she said. (She was commenting on the neon pink ones that we have now, in addition to the darker pink ones we ordered for our doctors and distributed before my double mastectomy operation last December.)
“We had to order more in a different color because the other ones were so popular we had to order some more!,” my sister replied.
Our doctor laughed.
They talked about my twin sister’s treatment plan, corneal cysts that only happen to less than 1% of Tamoxifen takers (“Of course that would happen to you!,” our doctor said), and our doctor’s recent breast clinic promotion (yay!).
My twin sister won’t be back at the Breast Clinic for a follow-up until 2024 because her oncology team will be in charge of her follow-up appointments until then, but our primary Breast Clinic doctor let my sister know she’d be happy to help her out with anything, anytime. Notably, our Breast Clinic doctor is the one who was able to provide my twin sister with the referral she needed to get in to see the gynecological oncologist at Mayo Clinic for a second opinion on the suspicious cyst on her left ovary.
“That’s why you all become doctors, right?? To care for patients with lots of problems like me??,” my sister joked.
Our doctor laughed.
“I’ve got to keep my eye on you!,” our doctor said.
We are thankful to have watchful eyes looking out for us and guiding us through treatment. Cancer sucks!!!! But God is still good and has been sending us amazingly caring, thoughtful, encouraging and joy-filled doctors and nurses along the way!
My whole family has been having plenty of quality time with Gizmo, my sister and her husband’s new Boston Terrier puppy, while they are in Rochester for doctor’s appointments! He is very cute!
Ovarian cancer screening results
As I noted in my previous post, the gynecologist my sister saw in the city a few weeks ago started my twin sister’s baseline ovarian cancer screening. My twin sister’s CA-125 blood levels were normal, but unfortunately, my twin sister’s pelvic ultrasound showed a “suspicious” cyst that is 4cm wide on her left ovary.
Our gynecologist recommended a follow-up ultrasound to see if the cyst is shrinking at all, and also gave my sister and her husband the option to go straight to surgery to remove the cyst if she’d like to go that route given the fact there is a small chance given family history that it could be cancerous.
My twin sister was shocked at this news. First, she couldn’t believe she had a 4cm cyst on her left ovary that could potentially be ovarian cancer. Second, she couldn’t believe she might have to have another surgery in the same year that she had a double mastectomy with reconstruction. PLUS, she’s in the middle of chemotherapy right now!
Her doctor recognized that surgery was a big suggestion at this point in time, but given the fact my twin sister had invasive breast cancer and has a family history of both breast and ovarian cancers, our doctor said she’s treating my sister as “high risk” and the suggestions she was making wouldn’t necessarily apply to every patient who comes through her office. My sister and her husband appreciated this immensely–as I’ve mentioned previously, the fact that we both ended up with breast cancer at age 30 kind of defies all statistics and we are grateful for aggressive treatment plans.
That being said, given the seriousness of the situation, my twin sister and her husband decided to get a second opinion about the ovarian cyst at Mayo Clinic in Rochester. It was a great appointment, and here are some of the key takeaways.
I am reading a book called “Coddling of the American Mind” and I laughed when I came across this page and sent it to my sister because I said it was a good reminder that God must be preparing her for some huge task or responsibility way above and beyond her wildest imagining given all the suffering she’s endured in recent months. She laughed and said it was an encouraging thought!
My twin sister’s second opinion with a gynecological oncologist at Mayo Clinic in Rochester
My twin sister contacted our primary Breast Clinic doctor at Mayo Clinic in Rochester and got a referral to see the same gynecological oncologist that saw me for a baseline ovarian cancer screening at Mayo Clinic Rochester in January 2020. Her appointment was last Thursday, and it went exceptionally well–Mayo will be taking over her case and care plan from here.
My sister went through all of the stages of ovarian cancer screening at Mayo, including analysis of her CA-125 blood test and thorough physical exams. During her appointment, my sister’s doctor showed my twin sister and her husband her ultrasound pictures, drew on them, and showed how big the cyst is–it turns out it is bigger than her left ovary (!). The doctor said it is a “simple” cyst as opposed to “complex,” as it appears 95% of cyst is fluid filled. There is “one potentially small area of complexity” because a line goes through the middle of the cyst that might potentially be complex. So, even though the cyst is “simple,” her Mayo doctor is treating it as if it were “complex.”
Bottom line from her appointment is: The cyst is “simple” rather than “complex,” which means it’s slightly concerning, but not as concerning as it could be. At this point in time, the cyst could simply be a follicle, especially with my sister’s period recently returning in September after being in menopause since the beginning of TCHP, or it could be ovarian cancer. The doctor does not know if it’s ovarian cancer or not at this point in time, and would only be able to tell with a pathology test at time of surgery if surgery becomes a need in the next month. For now, she wants to “watch it.”
From a breast cancer perspective, my twin sister’s breast cancer oncologist said that removing one or both ovaries or leaving them in won’t make any difference in chance of breast cancer recurrence / survival:
“As a person, she would benefit from keeping her ovaries as long as possible,” her breast cancer oncologist said. “From a breast cancer standpoint, I would not recommend removing her ovaries at this point in her life.”
The doctors told my twin sister there are a few reasons that would be good for my sister to keep her ovaries, most importantly being that ovaries support bone and cardiovascular heath. Also, removal of ovaries would likely change the endocrine therapy required like Tamoxifen.
However, if the ultrasound shows the cyst is still there on November 27th, the doctor would recommend having surgery and taking the cyst out. The doctor said she would NOT recommend waiting until February–aka, the end of my twin sister’s chemotherapy regimen–to remove the cyst. So we’d be looking at surgery likely in December, with a “pause” in chemotherapy for surgery. This made my sister a bit nervous, but my doctor assured her they do it “all the time.”
That said, in consultation with my twin sister’s breast cancer oncologist who called in during her appointment (the way Mayo doctors work together is amazing!), the Mayo Clinic gynecological oncologist decided to take a “wait and see” approach before proceeding with surgery.
This “wait and see” approach means that the gynecological oncologist scheduled my twin sister for a follow-up ultrasound for Friday, November 27th. Any normal cyst would have time to resolve or move toward resolving in this amount of time (6 to 8 weeks after her initial ultrasound), and her doctor is comfortable waiting until then for another imaging exam. That is our hope and prayer: that the cyst has disappeared completely and/or shrunk significantly so that surgery won’t be necessary!
Ovarian surgery options on the table
On Monday, November 30th, my twin sister has a follow-up video visit scheduled to go over results of the ultrasound and to make a decision about surgery if needed. If the cyst hasn’t shrunk significantly or disappeared, here are the three options for surgery that will be discussed on the doctor video call on Monday, November 30th:
Remove the cyst by itself: This is doable, but is a challenging procedure that carries with it a small chance of the cyst rupturing and spilling into her abdomen. If there’s any ovarian cancer within the cyst, we do not want that to happen because that would mean cancer would spread through her abdomen. To potentially avoid this possibility, there is another surgical option: To remove the cyst along with her left ovary and fallopian tube.
Remove the cyst along with her left ovary and fallopian tube: This would potentially decrease the chances of the cyst rupturing as it’s removed because it’s a simpler procedure. Her right ovary–which is totally healthy–would be able to compensate for the loss of the left one. So this is what she and her husband are leaning toward at this point in time.
Remove the cyst along with both ovaries and fallopian tubes: At time of surgery, when the cyst and left ovary are removed, they will send both down to frozen pathology to test for ovarian cancer. If the frozen pathology comes back as ovarian cancer, they will have the option to remove the right ovary as well while they’re in there for risk reduction.
Down the road, if the cyst miraculously disappears this month and surgery does not end up happening at this point in time (prayers for that!!), the doctor said she will likely take both of my sister’s ovaries and/or Fallopian tubes out at some point, but not in the near future, and she would not recommend a full hysterectomy. Though, she would take both ovaries at some point because it’s “reasonable.”
With regard to fertility, the gynecological oncologist is encouraged by the 28 eggs that were retrieved at the fertility clinic in the city in fall 2019, which was a “great result.” She does not want my sister to go through another egg retrieval and she’s confident at least one of the 28 eggs will result in pregnancy via in-vitro fertilization (IVF) even if she loses both ovaries. That’s because there are lots of estrogen and progesterone supplements available that you have to have with IVF anyway.
Here is my twin sister with her puppy Gizmo! He loves his mama!
Trusting God and miraculous healing from corneal cysts!
As my twin sister recently shared with our small group: “What an exercise in faith and the healing power of prayer in the past year or so! Believing a miracle can happen here! God is good!”
We are believing with her that a miracle can happen!!! Just like healing of her corneal cysts she experienced recently, we are hoping and praying for this cyst to disappear, too!!!
At an appointment with her breast cancer oncologist last month to discuss her corneal cysts, he recommended halting Tamoxifen while she finishes her TDM1 treatments because, right now, he says that the “side effects are outweighing benefits of treatment.” Her oncologist is comfortable with the TDM1 attacking Her2+ properties of any potential cancer recurrence, because Her2+ is what can cause cancer to recur sooner and more aggressively.
His recommendation was based on the fact that Tamoxifen research is from the 1980’s and 1990’s and typically only for ER+ cancer (Her2+ was not tested for until 2004). We’ve been praying for clarity in the healing process so we are encouraged the cysts don’t appear to be getting worse week by week but rather might be improving, because my twin sister REALLY wants to continue Tamoxifen (even though it is likely causing her corneal cysts) because she wants to complete the endocrine therapy regimen she started to keep her breast cancer at bay—forever!!!!! And now it appears she might be able to do that!
She will be seeing an eye specialist at Mayo Clinic on again on November 19th, and in consultation with her breast oncologist at that appointment, they will make a decision on whether or not she should continue with or pause Tamoxifen.
Having great friends to support, pray for, and come visit us has been such a blessing this past year, including this good friend who told us about SheFit sports bras which have changed our lives and allowed us to be as active as we were before surgery!! YAY!!!
Attitude of gratitude
As I mentioned earlier cancer sucks and this whole situation is really just unbelievable. Having great friends to support, pray for, and come visit has been such a blessing this past year, including the good friend pictured above who told us about the SheFit sports bras which have changed our lives and allowed us to be as active as we were before surgery!! YAY!!!
Sermons and messages that have been especially encouraging to us include those that address joy in the midst of suffering. A good friend sent one to us by author Max Lucado, about Jesus being with us in the middle of life’s storms (you can listen to that message by Max Lucado at this link). One of my sister’s good friends from her time as a student at the Pepperdine Caruso School of Law sent her a sermon at Elevation Church featuring Dr. Dharius Daniels recently, too, about trusting God in the midst of suffering, drawing back to the Book of Job–a man who lost everything, including his health–in the Bible. These are hard messages to hear, but so important to be reminded of God’s faithfulness in the middle of suffering and situations that we don’t understand–but God does. And He loves us in the middle of it all, too.
My twin sister was also able to attend a Bible study for alumni of the Christian Legal Society at Pepperdine Caruso School of Law a few weeks ago and was so encouraged by the 96 people on it!
Thank you for your continued prayers for my sister’s health and healing! God is good!!!!
Next steps
Thursday, November 19th: Appointment with Mayo Clinic eye specialists where they’ll decide to continue or temporarily halt Tamoxifen which is likely the main cause of her corneal cysts
Friday, November 27th: Pelvic ultrasound at Mayo Clinic to see if the ovarian cyst has shrunk or disappeared (prayers it disappears!!!)
Friday, November 27th: Her 10th infusion of T-DM1 at Mayo Clinic Rochester!
Monday, November 30th: Follow-up video appointment / checkin with gynecologic oncologist to decide on whether ovarian surgery might be necessary!
Tuesday, December 8th: My twin sister has a dermatology appointment to check out a “suspicious” spot on her back, which our gynecologist pointed out to her last month. We are trusting this is nothing, too, but it’s better safe than sorry!!!
Friday, December 18th: Her 11th infusion of T-DM1 and follow-up with plastic surgery team at Mayo Clinic Rochester!
Clinging to promises like these in Scripture about God’s faithful love for us in the midst of challenging circumstances!
This blog post is the 31st in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
My dad met his $2,500 goal for the American Cancer Society within a week of starting! Here is the entire family supporting him in the American Cancer Society’s “Real Men Wear Pink” campaign–you can support/give to my dad’s campaign at this link: http://main.acsevents.org/goto/Althoff
It’s mid-October, and we are halfway through Breast Cancer Awareness Month!!! Here are a few highlights for us at this moment in time!:
Our dad has raised over $4,000 for the American Cancer Society’s “Real Men Wear Pink” Breast Cancer Awareness Campaign!! Our Dad was recently invited to take part in a fundraising campaign called “Real Men Wear Pink,” backed by the American Cancer Society. You can donate to support cancer research, treatments, and support for cancer patients on his fundraising page at this link!!! His goal was to raise $2,500 for ACS during the month of October, and he has already beat that goal, so the American Cancer Society increased his goal to $6,000! My husband, Chris Steinke, hosted a Facebook Live music event featuring breast cancer awareness on October 1st, and you can watch the replay at this link. He will go live again on Friday, October 23rd, at 7pm CST to play some more music and to raise some more awareness for breast cancer! Join us on his Facebook page!!
My twin sister is over halfway done with her post-operative chemotherapy regimen of T-DM1! Last October, we were just getting started with all of this breast cancer diagnosis and treatment stuff. It’s hard to believe all that can happen in a year’s time! She only has 6 infusions of chemotherapy left–and we hope and pray this is the last time she ever has to do chemotherapy EVER!!! 😀
My twin sister started her baseline ovarian cancer screening, and is waiting for results/interpretation from her gynecologist: My baseline ovarian cancer screening at Mayo Clinic Rochester in January 2020 confirmed a diagnosis of polycystic ovarian syndrome (PCOS), but my markers for ovarian cancer (aCA-125 blood testand anultrasound) weren’t suspicious at all, Praise God! My twin sister is currently awaiting interpretation from her gynecologist in the city of her CA-125 levels and pelvic ultrasound imaging. We are praying there is nothing suspicious to report!
My twin sister’smicrocystic edemaisn’t getting worse, but it isn’t getting better, either! Prayers are immensely appreciated for the cysts on her corneas–that are likely caused by her daily intake of Tamoxifen and exacerbated by eye dryness caused by her T-DM1 infusions–to heal sooner rather than later!!! They “ebb and flow” in severity after every one of her T-DM1 infusions, which occur every 3 weeks.
Here is my twin sister and her husband all checked in and ready for her 8th infusion of T-DM1 at Mayo Clinic in Rochester, Minnesota! In matching superhero masks, yay!!
My twin sister’s 8th infusion of T-DM1
My twin sister was a champ and knocked out her 8th infusion of T-DM1 in record time! Her husband, Paul, is an operations manager at Amazon, and recently moved over to overnight shifts. He insisted on driving her to her appointment even though he’d just finished an overnight shift with no break in between! They are the cutest couple ever!!! They even wore matching superhero masks, woohoo!!
While they were down in Rochester,
Here she is, one of the fastest infusions she’s had to date!
I got to hang out with Gizmo, my twin sister’s puppy!, while she was at chemo with her husband!
Alternative options to Tamoxifen / T-DM1: an “aromatase inhibitor”
As mentioned previously, my twin sister’s corneal cysts are likely caused by her daily intake of Tamoxifen and exacerbated by eye dryness caused by her T-DM1 infusions. Her eye doctors are hopeful this is a reversible trend that will go away when she’s done with Tamoxifen in 4 years, but there’s a small possibility it isn’t reversible. God is good and will be with us either way! My twin sister brought this up with her oncology team at Mayo Clinic, who brought up one alternative option to Tamoxifen: an “aromatase inhibitor” (AI).
Unfortunately, an aromatase inhibitor, aka the one alternative to Tamoxifen, is reserved for postmenopausal women. My sister is only 31, and is definitely premenopausal and plans to have children this decade!, so, in order for her to switch to the Tamoxifen alternative / “aromatase inhibitor,” they would have to shut her ovaries down with a Lupron shot every 30 days, which would basically send her into menopause every 30 days (making her “postmenopausal”).
When ovaries are shut down, they don’t produce estrogen, and the purpose of the AI would be to stop my sister’s testosterone from converting into estrogen, thus starving any breast cancer cells of their food (estrogen). Tamoxifen, on the other hand, simply blocks estrogen from binding to any breast cancer cell (also starving it of its food!) The main side effects of AI would be related to menopause–the member of her oncology team she talked with has never seen eye issues on an aromatase inhibitor. The member of her oncology team she talked with has seen the AI to be more effective in preventing recurrence than Tamoxifen in some cases, but is going to ask the lead oncologist for his thoughts and recommendations because the whole team doesn’t want my sister’s eye issues to keep affecting her life! My sister has a video appointment set up with her oncologist this Friday 10/23.
My twin sister’s puppy, Gizmo, loves her very much and spends a lot of quality time in her lap!
Taking all of this into consideration, there would also be a risk (again, like when she started neoadjuvant chemotherapy), that her ovaries wouldn’t wake up from being shut down, but she is optimistic they would wake up because they woke up after chemo, just last month! :)) She and her husband are currently praying about what to do–if she should stay on the Tamoxifen that is likely causing her corneal cysts for another 4 years, or if she should go down the path of monthly Lupron shots and a daily aromatase inhibitor, which also may have its own share of side effects.
Prayers are appreciated for wisdom and discernment for them as they navigate this new decision with the help of her oncologist during a virtual video appointment scheduled for this Friday 10/23!
Here is my twin sister getting all checked in for her annual gynecology exam and baseline ovarian cancer screening appointment!
My twin sister’s baseline ovarian cancer screening and annual gynecology exam
We love our gynecologist in the city! She was trained at Mayo Clinic in Rochester and was referred to us by a specialist at Mayo Clinic Rochester as specializing in high risk cancer patients in addition to pregnancy and childbirth. She takes lots of time with us and all three of us girls (including our baby sister, who is also high risk for breast and ovarian cancer). We are all seeing her now in hopes she’ll deliver all of our babies! 🙂
Our gynecologist was thrilled that my twin sister’s cycle came back last month, because TCHP forced my twin sister into menopause and put her ovaries to sleep. It’s never a guarantee that chemotherapy patients’ ovaries will wake back up, but my sister’s did!, which is a huge praise! Even though her ovaries are awake, birth control is of the utmost importance, because getting pregnant on chemo is not something anyone should do.
Our gynecologist was very excited also that my twin sister has 28 eggs in a freezer in the city. After everything she’s been through, our prayer has been that she’d be able to carry babies with IVF at the end of all of this. She’ll have to take a “timed break” from Tamoxifen to do so, or perhaps try to get pregnant at the end of this 5-year Tamoxifen window, but either way, we and her gynecologist are optimistic!
Here’s my twin sister all ready for her gynecological exam! Even with all the doctor’s appointments she’s been to and been through, she’s still smiling!! 🙂
“Do you ever work with cancer patients trying to get pregnant on a timed break off of Tamoxifen?,” my sister asked her.
Without hesitation, our gynecologist responded: “Yes! I have one patient right now who is on a timed break. She is currently 30 weeks pregnant!”
My sister beamed. So did our doctor. 🙂
During her examination, our doctor said my twin sister looked healthy as can be inside and out, especially after everything she’s been through.
We then went on to discussion of my twin sister’s baseline ovarian cancer screening, which involves a CA-125 blood test and a pelvic ultrasound.
“Ovarian cancer screening isn’t great,” our gynecologist told us. “We are able to do a CA-125 blood test plus a pelvic ultrasound, but it’s not great at detecting ovarian cancers. Even if you get these annually or even every six months, ovarian cancer is likely to pop up in between exams–right now, 80% of ovarian cancers are found on physical exam or when symptoms are exhibited. But we’re going to screen you this way anyway. If we see an abnormal cyst on either of your ovaries or anything suspicious going on, we are going to look into it and, if necessary, go after your ovaries.”
This was a sobering thought. Only 20% of ovarian cancers are detectable with a CA-125 blood test and ultrasound. Yikes! Not to mention, our gynecologist told us that CA-125 tests paired with pelvic ultrasounds sometimes create false-positives and ultimately don’t ultimately decrease death rates from ovarian cancer (a statement supported by Mayo Clinic research). This is because ovarian cancer is “sneaky”–often times when symptoms show themselves or it appears on physical exam it’s already at an advanced stage which makes it harder to treat.
So we wait, and we pray–for favorable test results, effective screening, and for the ability to have children naturally before ovarian cancer becomes an issue we need to address. God is good!
Here is my twin sister heading in to get her CA-125 blood test for ovarian cancer screening!
My twin sister’s baseline ovarian cancer screening results
My twin sister’s CA-125 levels are ready for interpretation in her patient portal, and her twin sister’s pelvic ultrasound was last Wednesday and results are forthcoming. Paired with the CA-125 results we eagerly anticipate some answers about what it all means!
As we left my twin sister’s baseline ovarian cancer screening appointment, we had to pose for a selfie outside of the hospital where they had pink fountains in honor of breast cancer awareness month!
Next steps
My twin sister made a joke recently that all she does is go to doctor’s appointments, which isn’t too far from the truth! We know she’s in good hands which is great, but it is a lot of mental and emotional energy to have to ramp up for all of these visits! Here are all of the ones she has planned for the next couple of months:
Baseline ovarian screening results are to come back / be interpreted by her gynecologist this week sometime;
She has a virtual video appointment with her oncologist on Friday about potentially starting an aromatase inhibitor instead of Tamoxifen;
Her 9th infusion of T-DM1 is scheduled for Friday, November 6th; her 10th infusion of T-DM1 is scheduled for Friday, November 27th, or Black Friday / the day after Thanksgiving!; and her 11th infusion of T-DM1 is scheduled for Friday, December 18th, the same day my annual follow-up appointment with my Mayo Clinic Breast Clinic doctors is scheduled for!;
She is also scheduled to follow up with her eye doctors in the city and at Mayo Clinic over the next couple of months in hopes her microcystic edema improves thanks to some eye drops she’s on.
Thank you for your continued prayers for her health and healing! God is good!!!!
In addition to eating healthy, my twin sister has done a great job staying active by walking on the treadmill, lifting weights, and playing pickleball! Here she is at the pickleball courts this month with her husband and their puppy, Gizmo!!
This blog post is the 31st in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
This blog post is the 30th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
It’s October 1st, which means it’s the first day of Breast Cancer Awareness Month!!! Here are a few highlights for us at this moment in time!!:
Breast Cancer Awareness Month is happening!! Our Dad was recently invited to take part in a fundraising campaign called “Real Men Wear Pink,” backed by the American Cancer Society. You can donate to support cancer research, treatments, and support for cancer patients on his fundraising page at this link!!! His goal is to raise $2,500 for ACS during the month of October, and he has already raised over $700! My husband, Chris Steinke, is going to host some Facebook Live music events featuring breast cancer awareness throughout the month of October! The first one is at 6:30pm CST on Thursday, October 1st! Join us on his Facebook page!!
My twin sister is halfway done with her post-operative chemotherapy regimen of T-DM1! Last October, we were just getting started with all of this breast cancer diagnosis and treatment stuff. It’s hard to believe all that can happen in a year’s time!
My twin sister’s microcystic edema isn’t getting worse, but it isn’t getting better, either! Prayers are immensely appreciated for the cysts on her corneas–that are likely caused by her daily intake of Tamoxifen and exacerbated by eye dryness caused by her T-DM1 infusions–to heal sooner rather than later!!! They “ebb and flow” in severity after every one of her T-DM1 infusions, which occur every 3 weeks.
Here we are at the front of the line for Slinky Dog in August 2019!
Our family has a running joke: In August 2019, we went to Walt Disney World. It was an amazing vacation, and one of the highlights was riding a roller coaster modeled after Slinky Dog from Toy Story (pictured above and below). The joke was that my mom hates roller coasters, but by some miracle, we got a pass to go to the front of the 90-minute line of hundreds of people and ride it all together as a family.
Walt Disney World Hollywood Studios cast member Jeff and his wife gave us a pass to go to the front of the Slinky Dog roller coaster all together as a family!
My mom hates roller coasters, but she rode it anyway because she puts her family before herself in most things in life and she knew we all wanted to ride it together. When our lives went off the rails with our cancer diagnoses in fall 2019, our whole family affectionately blamed Slinky Dog. Maybe, just maybe!, if we’d never gotten on that roller coaster, our lives never would have gone off the rails!!
Proof that my mom rode Slinky Dog at Disney World! Here is she is, right behind me, next to my dad!! LOL
Making jokes and memes like this and finding silver linings along the way has been crucial to our mental and emotional well being over the past year. We’ve come to learn firsthand that sometimes God allows cancer diagnoses or other huge challenges into our lives as invitations to trust Him more (Book of Job, anyone?!).
God definitely has our attention!, and it’s our hope that our journey can be an encouragement to others–to persevere in the midst of seemingly insurmountable challenges and trials. And–dare we say!–to even find a bit of joy, peace, and fun along the way. 🙂
As one of my good friends reminded me recently: “God is closer than the air we breathe.” Also: God is Lord over the mountains AND the valleys (1 Kings 20:28 & “Graves into Gardens” by Elevation Worship).
Our Aunt Jeanne made Gizmo the Boston Terrier a custom breast cancer awareness blankie which he loves!!! She is an AMAZING seamstress!!!
“Real Men Wear Pink!” and Breast Cancer Awareness Month!!
October is Breast Cancer Awareness Month, and our Dad was recently invited to take part in a fundraising campaign called “Real Men Wear Pink,” backed by the American Cancer Society. You can donate to support cancer research, treatments, and support for cancer patients on his fundraising page at this link!!! His goal is to raise $2,500 for ACS during the month of October, and he has already raised over $500!
To support my dad reaching his goal and to raise awareness for breast cancer in general, my husband, Chris Steinke, is going to host some Facebook Live music events talking about breast cancer throughout the month of October! The first one is at 6:30pm CST on Thursday, October 1st! Join us on his Facebook page!!
Here is my twin sister with her husband in Rochester all ready for her 7th infusion of T-DM1!
My twin sister’s 7th infusion of T-DM1: She’s HALFWAY THERE!!!!!!!!
Okay, so now on to a few updates about my twin sister’s chemo regimen!: My twin sister knocked out her 7th infusion of T-DM1 last Friday at Mayo Clinic in Rochester, Minnesota, with no adverse reactions to the drugs!!!! This is a HUGE answer to prayer–this means she’s halfway done with her post-operative chemotherapy regimen and only has 7 more infusions to go until she’s ALL DONE with chemotherapy!!!!!!!!
We are so grateful she’s feeling as well as she is! She still has impaired vision from her microcystic edema, which is likely caused by her daily intake of Tamoxifen. But, she has had little to no nausea with her T-DM1 treatments, while before her surgery, during her six 6-hour infusions of TCHP, she had quite a bit of nausea. She has a bit of fatigue, which is to be expected, so she’s being kind to herself. She’s experiencing a bit of neuropathy in her left foot, but said that it’s actually getting better compared to how it felt during TCHP before surgery, which is a huge praise! Exercise helps with that, and she’s been walking/running on the treadmill and working out in their home gym regularly!!!
Also: Nutrition matters! Her blood levels have been awesome, which is largely due to her eating healthy. She and her husband are being intentional about eating lots of whole foods, meat high in iron, and fresh fruits and veggies, and it’s reflected in her blood levels!
Here are the blood counts from my sister’s most recent infusion! Thanks to healthy eating and exercise, she’s keeping her numbers in the healthy range!
At the beginning of my sister’s eye exam, she was having trouble reading even the biggest letters on the screen, because her corneal cysts make her field of vision extremely blurry. Prayers appreciated for healing and deliverance from this nuisance are so appreciated!!
Microcystic edema update: Prayers please!!!
While we celebrate that my twin sister is halfway done with her post-operative chemotherapy regimen, we are sad that her corneal cysts aren’t gone yet and don’t seem to be getting better. While they aren’t getting better, they aren’t getting worse, either, which is a praise!
I drove her to a follow-up appointment with her eye doctor in the city this morning to check up on things, and I listened as she explained to the eye doctor and technician what exactly has been going on.
It turns out that my sister’s eyesight has gotten worse since her most recent T-DM1 infusion last Friday, which is a pattern that’s been happening the past several weeks. In August, she started experiencing blurred vision–she couldn’t read street signs. She found out this blurred vision was due to cysts on her corneas, which her eye doctors think are caused by her daily intake of Tamoxifen.
Then, over the past several weeks, for a few days following each of her infusions of T-DM1, her eyesight gets more blurry than it was before the infusion; and about a week after each infusion, it gets back to baseline. It ebbs and flows, she said–her eyesight gets worse for a few days after every infusion then usually gets a bit better about a week after each infusion.
But her eyesight is never good–everything is blurry, even with her glasses on, and she can’t wear contacts at all right now.
She explained to her doctor that she has a slight sensitivity to light, too, but that it’s not terrible.
During her eye exam, she had a lot of difficulty reading the letters on the screen. At first she couldn’t read any of them, not even the big ones. I could tell she was getting frustrated (she is a Maximizer and Enneagram 8 after all!), but then the technician put down a slide with little holes in it and my sister started being able to read more of the letters!
Here is my twin sister after the technician put the pinhole lens down that shoots light straight to the retina, past the cornea, which improved my sister’s vision immensely!
“What exactly are those??” my sister asked.
“Yeah! They helped a ton! Can we get those in sunglasses form??” I said.
“They’re pinholes that direct light back to the retina and simulates squinting which means when you use that as an assist mechanism that the problem can be corrected!” the technician said.
Reading letters was a bit challenging and I could tell my sister was getting frustrated. So I started calling out percentages of completion.
“100%!” I said when the pinhole lens came down. My sister and the technician laughed.
As the letters got smaller, her perception got worse.
“60%!” I exclaimed at one point.
Then we moved on to the peripheral vision exam, with the technician pointing her fingers up in the air. This was no problem for my sister, praise the Lord!
She had no problem with her peripheral vision test which is awesome!
Here are the main questions we had going into the eye doctor appointment along with the answers from her doctor:
1) Are these cysts connected to TDM1 and / or Tamoxifen and if so is there any way to tell which one?
“You have an increase in PEK’s and crystalline deposits,” the eye doctor said. “The PEK’s are different than the crystalline deposits, so I think that’s what it is. Chemotherapy exacerbates eye dryness, so that’s probably what’s happening. It looks like you have a flare in dryness from your recent chemo infusion, but what’s happening here is not inflammatory. Instead, it’s a byproduct of Tamoxifen that causes the deposits.”
2) Will these cysts continue to get worse as the infusions and Tamoxifen continue? If so, is there any treatment for these cysts?
“Chemo likely induces some dry eye which decreases tear production, so it may be useful to bump up your use of artificial tears right after infusions, especially going into winter and especially with mask wearing, because masks tend to fog up your oculars. When you breathe into a mask it’s kind of like a fan,” the eye doctor said. “Use artificial tears, single-use preservative free ones!–as frequently as every half hour after your infusions. If you use preservative free, single-use, individual tear drops up to every half hour after your infusions, it should help.”
3) Is this reversible / will it go away?
“Is it getting worse?” my sister asked. “Last time you said a half moon of cysts had cleared up on the right side, and it’s not changing. Is that still true?”
“It’s not getting worse, and I wouldn’t expect it to change at this point, as long as you’re on chemotherapy and Tamoxifen until they take you off of it,” the eye doctor said. “We just have to watch it. It may not end up being anything visually significant. It clears up for most women who come off of Tamoxifen, but for some it doesn’t change. We will just have to see. It all depends on the density of the deposits, which are staying the same right now. Maybe everything will be pretty good after you complete your IV chemo, but maybe there won’t be any change when you’re done with T-DM1. We will keep checking you to make sure.”
4) If she stops T-DM1 and/or Tamoxifen, what could she do instead?
“I’d be interested in hearing about what your oncology team might suggest, but I would go with the opinion to stay on whatever is systemically most effective, because if you change course at this point, there’s no promise it will change what’s happening in your eyes,” the eye doctor said. “I’ll stay tuned and we’ll give you another check in two months to make sure things aren’t changing.”
Here we are after my twin sister’s eye doctor update for her microcystic edema! I’m trying to show off Gizmo’s breast cancer awareness blanket but he’s thrashing around and getting in the way and being the cute little monster that he is sometimes!!
Gizmo the Boston Terrier
As promised, this post includes some more adorable photos of Gizmo the Boston Terrier! My twin sister and her husband got a puppy last month and he is bringing them lots and lots of joy on this journey. 🙂 Especially in the midst of my twin sister’s husband starting overnight shifts at work for the next few months, he is a ray of sunshine in their lives for sure!!!
He is pictured above with my twin sister, and earlier with a custom breast cancer awareness blanket our Aunt Jeanne made for him!!! Aunt Jeanne also made us quilts for our breast cancer journey which are featured in this blog post from December 2019!!!
Here is another photo of my twin sister with her new puppy Gizmo for good measure!
Next steps
My twin sister’s next chemotherapy infusion is scheduled for Thursday, October 15th, and she has a follow-up appointment with her eye doctor on Monday, November 30th. Until then, we are continuing to pray for 1) My twin sister’s corneal cysts to disappear completely, and for patience, joy, and peace in the healing process!; 2) For (continued!) no reactions to her new chemo drugs; 3) For my twin sister’s COMPLETE healing and 100% effectiveness of the chemotherapy and hormone treatment so her cancer never ever comes back!!; 4) For her joy and peace amid the crucible that is chemotherapy and cancer survivorship. For me, I have my one-year follow-up appointments scheduled at Mayo Clinic with my plastic surgeon and Breast Clinic physician on Friday, December 18th–seven days before Christmas Day! Merry Christmas to me!! 🙂
My devotions recently keep coming back to the Book of Hebrews–specifically, the reminders to come boldly to the throne of God with our requests, trusting He is faithful to hear us. In a devotional I was listening to on YouVersion recently, they said how expectations have a way of becoming reality. So we persevere in running the race set before us, keeping our eyes and hearts fixed on Jesus, the author and perfecter of our faith! He has perfect plans and we trust Him.
Thank you for reading all the way to the end of this post and for joining us in prayer! God is good!!
This blog post is the 29th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
It’s been an exciting week! My twin sister has now completed 6 of her 14 T-DM1infusions, so she’s 42.9% of the way done with her post-operative chemotherapy regimen! She did great at her 6th infusion! Thanks again to to some healthy eating–she and her husband have been intentional about eating lots of leafy greens and high-protein/iron foods every week–and exercising, she kept her numbers up so she could go ahead with her 6th infusion on time (praise the Lord!!)! Also, one of her favorite nurses was working and she didn’t have any reactions to any of the drugs! We are all SO thankful that she continues to feel well the week after her infusion, with little to no side effects. Thank you SO much for your continued prayers for joy, strength, and healing! 🙂
Speaking of healthy eating, here are my sister and her husband eating up some delicious breakfast at Pescara, one of our favorite restaurants in Rochester!, before her chemo infusion last Friday!
In addition to a great 6th chemotherapy infusion, my twin sister had an echocardiogram to check on her heart health, which she has every three months that she’s going through her chemotherapy regimen because the chemo she’s on can be hard on your heart. Everything looks good with her heart so far!
She also had a second opinion appointment with a corneal specialist at Mayo Clinic this past Thursday, September 3rd.
Here is my twin sister and her husband with their new baby Boston Terrier “Gizmo,” catching a snooze between their trips to Mayo Clinic Rochester this past week!
AND, all of this is happening while she and her husband are raising their baby Boston Terrier puppy, “Gizmo!” (He has his own Instagram channel @gimme_mo_gizmo which you should follow if you want to see lots and lots of the cutest puppy ever photos.) I promise to include lots and lots of puppy photos in this blog post!
Here is my twin sister all ready to see an eye specialist at Mayo Clinic the day before her 6th infusion of T-DM1!
A second opinion on her corneal cysts from a Mayo Clinic corneal specialist
“I see we have a very interesting thing happening to your corneas!,” the specialist announced as he headed into my sister’s exam room at Mayo Clinic.
Anyway: The Mayo Clinic corneal specialist agreed with the specialist my twin sister has been seeing in the city that the cysts causing blurred vision on my sister’s corneas are “almost certainly” related to her taking Tamoxifen on a daily basis. However, he said “this is NOT a permanent issue,” and the corneal cysts will go away when she’s finished taking Tamoxifen in 5 years!
I promised lots of puppy photos, so here is another one, of Gizmo snuggling on my lap while I was puppy sitting during my sister’s chemo infusion last Friday!
The Mayo corneal specialist also said that while it is unusual for Tamoxifen to cause side effects in the eye, when they do usually see it, it’s in the retina. He said the cornea is a “much better place to have cysts than the retina,” and that it’s good that the cysts are around the outside of her corneas because that means the center of my sister’s eyes are spared!
While, unfortunately, he doesn’t know of a “cure” to the problem–for example, if they went in with laser surgery to remove the cysts, they would just come back–he agreed that lubricating eye drops are a good idea to continue at this time to see if those help the cysts clear up at all. That’s because both Tamoxifen and TDM1 can cause dryness of the eyes, so eye drops aim to increase tear production and help with that problem. As winter arrives, he wants her to increase the usage of those drops as needed since the air will become more dry.
In the meantime, he wants to see her back in 2-3 months to make sure her eyes are staying the same or getting better, and wants her wearing glasses that whole time. He said that large, hard contact lenses may be the best option for her eyesight going forward because soft contact lenses carry the risk of causing small abrasions that could become infected while large hard lenses don’t rest on the cornea but rather around it. He said they could explore that option further down the road.
He also got in touch with my sister’s oncologist at Mayo and they agreed they will follow her as a “case study” for the next 5 years!
I got a beautiful quilt from my church’s quilting ministry in honor of my breast cancer journey!
Trusting God one day at a time
This past week I was gifted a quilt from my church’s quilting ministry in honor of my breast cancer journey! My twin sister received one during her chemotherapy regimen earlier this year, and we are grateful for reminders like these of God’s presence in the midst of anxiety-ridden trials! (We also received beautiful quilts made and delivered with love by our Aunt Jeanne last December. Those are pictured in this blog post I wrote right after my double mastectomy. 🙂)
The inscription on the quilt from my church’s quilting ministry reads from Psalm 27:14: “Wait for the Lord, be of good courage, and He shall strengthen your heart; Wait, I say on the Lord.”
I love that verse. It speaks right to my heart–because I hate waiting. But I know it’s what God calls us to do (sometimes). I’m still learning and, again!, am so thankful for these little reminders of God’s faithfulness! <3
The inscription on the quilt reads from Psalm 27:14: “Wait for the Lord, be of good courage, and He shall strengthen your heart; Wait, I say on the Lord.”
I bring my quilt almost everywhere with me and took a photo with Gizmo and the quilt today because they are kind of the same colors!
Another puppy photo! Isn’t he just the cutest!!!
Next steps
My twin sister has her seventh infusion of T-DM1 (HALFWAY THERE!!!) on Friday, September 25th. Then, sometime in December, I will have my one-year survivorship consultation at the Mayo Clinic Breast Clinic in Rochester, Minnesota, and my baby sister will go in for another preventative baseline MRI! We’ll see if we can schedule our appointments on the same day 🙂
Thank you all for your continued prayers for 1) My twin sister’s corneal cysts to disappear completely; 2) For no reactions to her new chemo drugs; 3) For my twin sister’s COMPLETE healing and 100% effectiveness of the chemotherapy and hormone treatment so her cancer never ever comes back!! 4) Side effects to continue to be minimal / nonexistent!!, 5) For her joy and peace amid the crucible that is chemotherapy and cancer survivorship.
Even in the midst of trials, we are choosing to remember and celebrate that God is good all the time!
Here is my twin sister all smiles knocking out her 6th infusion of T-DM1/Kadcyla! We are so grateful for her strength, joy, and trust in the Lord!
“
