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:
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!!
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.
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! :)).
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!
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 🙂
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!!
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!
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!
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!
