This blog post is the sixteenth in a series about my (and now, my twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. The first post is about my first mammogram ever; the second post is about my consultation at Mayo Clinic’s Breast Clinic; the third post is about my stereotactic core biopsy at Mayo Clinic’s Breast Clinic; the fourth post is about my diagnosis with “Stage 0” DCIS breast cancer; the fifth post is about my in-person DCIS diagnosis at Mayo Clinic, beginning thoughts on my surgery timeline, and discovering that my twin sister might have breast cancer, too; the sixth post is about my twin sister’s invasive ductal carcinoma clinical stage 2A breast cancer diagnosis; the seventh post is about my breast MRI and two ultrasounds to investigate “suspicious” spots on my right breast and liver; the eighth post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; the ninth post is about preparing for my twin sister’s chemotherapy appointments, including details about her egg banking procedure in the city; the tenth post is a summary of my sister’s ovarian hyperstimulation syndrome and visit to the emergency room; the eleventh post is a summary of my double mastectomy surgery plan scheduled to occur on December 3rd, 2019 at Mayo Clinic’s Methodist Campus Hospital in Rochester; the twelfth post is about my twin sister’s first chemotherapy infusion at Mayo Clinic; the thirteenth post is about foobs, photo shoots and nipple tattoos (my plastic / reconstructive surgery plan); the fourteenth post is a recap of my successful double mastectomy and immediate direct-to-implant reconstruction operation; and the fifteenth post is about my surgical recovery and day full of follow-up appointments at Mayo Clinic in Rochester. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
“You’re cancer free!” “I’m getting better every day!” “I wouldn’t wish chemotherapy on anyone.” “Instead of worrying, how about every time you start to worry, you pray about it?” “I know you’re a trooper, but how about you go home if it’s better for you?” “For every round of chemotherapy, it’s like adding a dumbbell to a backpack you’re carrying.” “This must be the party room!”
I just returned from my one-month post-operative check-up at Mayo Clinic in Rochester, Minnesota. My plastic surgery PA wanted to see me a month after my operation, and I decided to get started with the baseline preventative ovarian cancer screening on the same day, so off I went!
My husband drove me to my day full of appointments: First, two tests to kick off my baseline preventative ovarian cancer screenings that my doctor encouraged me to get started with–a CA-125 blood test and an ultrasound–and my one-month post-operative appointment with my plastic surgery PA!
The appointment with my plastic surgery PA went well–she said I’m “recovering beautifully,” I can drive for the first time in a month!, and I can “start doing things around the house.” I can’t work out for another two weeks (HELP!!!) but I’m rejoicing in my newfound freedom and independence as I can start traveling again, stretching my arms above my head, and even getting my heart rate back up above 100BPM every once in a while!
Getting started with preventative baseline ovarian cancer screening
Even though I tested negative for BRCA in addition to 17 other breast- and ovarian-cancer genes last month–which means technically there is no genetic rationale for my coming down with breast cancer at the young age of 30 and I have no known genetic link to any other cancers–I am at a high risk for ovarian cancer due to family history as well. When I wrapped up my breast cancer treatment last month and was welcomed into the “Survivorship Clinic at Mayo Clinic’s Breast Clinic,” I was told to schedule a follow-up appointment at the Breast Clinic in 3 to 6 months. In the meantime, one of my nurses said that I shouldn’t be surprised if I’m anxious especially in the months immediately following my surgery as lots of women wonder and worry about their cancer coming back (a “recurrence”).
I’m not especially worried about my breast cancer coming back, but I am particularly worried about where else cancer might pop up in my life given the fact I came down with breast cancer at 30. In the words of my doctor when she diagnosed me last September, “It’s awesome that we caught it so early…but it sucks because you’re only 30.” Still true.
So, due to my strong family history of breast and ovarian cancer, I need to continue with early screening and keep an eye on things. That’s why I went down to Mayo to start my ovarian cancer screening this week, which I’ll know much more about after my consultation next Tuesday with a PA who specializes in ovarian cancer prevention and treatment.
In addition to this upcoming appointment and battling anxious thoughts about other things like “Is that a rash? I must have melanoma!” and “My right side hurts! I must have scar tissue buildup!”, I’m watching my twin sister battle her stage 2A breast cancer with chemotherapy: Her last 3 chemo appointments are January 10th, January 31st, and February 21st—then it’s on to surgery!!!
Happy New Year 2020: My twin sister is halfway done with chemo!!! (“This must be the party room!”)
One of my doctors told me it was great I was recovering so well so I can be there for my sister, who is in the middle of her chemotherapy infusions (she started her chemo in November 2019). Another one of my doctors told me it’s my job to make the surgery and recovery look easy for my sister, which I think I’ve done given the fact I wouldn’t stop talking when I woke up from surgery and I wasn’t supposed to be doing anything but reading books and watching Netflix last month but I tried to run into the car whenever someone was going somewhere so I could escape from my house.
So I was determined to show up to my sister’s third chemotherapy infusion just before Christmas even though no one allowed me to raise my arms and I can’t even buckle my own seat belt. I made it!, as you can see from the featured photo at the top of this post and the other pictures of us in Santa hats all over this post, which we decided to wear to my sister’s chemotherapy infusion.
“This must be the party room!,” one of the nurses said.
“It sure is!” we responded.
It’s the little things. 🙂
A reaction-free infusion!!!
In addition to dressing up like Santa and his elves and bringing holiday cookies to our chemo nurses and doctors, we asked for prayer from everyone we knew for my sister to have a 100% effective infusion with no adverse reactions to any of the drugs. My sister had an adverse reaction to Taxotere during her first two chemotherapy infusions, and we didn’t want that to happen again because these were some of the scariest moments of this journey so far (besides her coming down with ovarian hyperstimulation syndrome which was the scariest moment of our lives, definitively), and we didn’t want it to happen again. Please Jesus help her not have another adverse reaction to Taxotere!!!
God heard our prayers and my sister got through her third set of chemo with no adverse reactions!!! PRAISE THE LORD!!!
Meeting an “angel cowboy” on Gonda 8
Halfway through my twin sister’s chemo infusion on December 20th, my dad and baby sister and I went to take a walk to get coffee. On the way we met a guy who said he liked our hats. We went on to talk to him for 10 minutes about his career as a Marine and entrepreneur and about how his daughter, wife, and son-in-law all work at Mayo Clinic. He told us about the importance of living on God’s timing and maintaining a positive attitude through all of life’s challenges, and we are convinced we met an angel cowboy. It was awesome. As you can see above we even took a selfie with him!
Chemotherapy sucks but modern medicine and exercise are miraculous things
The three days after my sister’s chemotherapy infusions are the hardest. She takes steroids for a couple of days leading up to her 6-hour infusions which are great in keeping her energy up, but when they wear off the day after her infusion, she hits a wall and sleeps a lot in addition to coming down with side effects like acid reflux, mouth sores, bone pain, nausea, and this time around, vomiting (until her anti-nausea drugs kick in). This past time around I got to hang out with her quite a bit to bring her food, help her get dressed, make sure she’s staying hydrated, and clean her bathroom for her while everyone else was at work. (Shh, don’t tell my doctors I cleaned a chemo patient’s bathroom with the arms I wasn’t supposed to be using!)
Some key takeaways from this past round of chemo:
- After the first few days following her chemo infusions she tends to feel much better. She says days 1 to 3 are pretty terrible while days 5 to 7 onward are a-okay! However, dealing with chemo side effects is kind of like whack-a-mole. Various side effects pop up here and there (like this time around, throwing up), that can’t always be dealt with preventatively–you just have to take them as they come. Because her oncologist told her before all of this started that he doesn’t want her in the bathroom miserable the entire time she’s on chemo, her Mayo doctors have provided her with lots of prescriptions to fill for various problems. So I made sure she got on a regular regimen of her medications to keep her side effects at bay this past couple of weeks.
- She’s had a great appetite and is keeping her calories up. My sister eats whatever food tastes good to her on any given day as one of her chemo drugs–Carboplatin–makes her taste metal. She’s been able to keep her calories up which is awesome and is working on keeping various levels of her blood up, like Hemoglobin, as well, through eating lots of red meat and proteins. She’s not drinking alcohol and is trying to keep sugar intake to a minimum–Christmas week was tough given cookies were everywhere but she’s sticking closely to a nutritious diet as much as is possible and is doing a great job with it in addition to having help from a MealTrain!
- She loves her job and has been able to get to work most days. She loves her job as a lawyer–but even her boss noticed that, this time around, she looked more tired than normal. As someone told us, “Each round of chemo is like adding a dumbbell to a backpack you’re carrying.” She showed up at work a few days after her infusion and her boss said, “I know you’re a trooper, but how about you go home if that’s better for you?” She went home that day but was back at work the next day. She’s definitely doing what she loves!
- Hair loss sucks. She’s started to lose some of her hair and we can tell that is sad for her but she’s kicking cancer’s butt so that’s all that matters! She’s wearing some baller bandanas and hats and the Paxman Cold Cap is helping her lose less than half of her hair and will also help with hair regrowth!
- Modern medicine is a miraculous thing and exercise is awesome! She’s been walking on a treadmill at home for 10-30 minutes per day as she has the energy to which helps make the side effects better than they would be otherwise–she has more energy this way and moderate exercise has even been scientifically proven to help the effectiveness of the chemo!
Survivor guilt is real
My sister is halfway done with her chemo regimen that will wrap up right before her double mastectomy set to occur in March 2020 and we are all so proud of her!!!
The problem with watching my sister go through chemotherapy is that survivor guilt is real. Why did I only have to deal with Stage 0 cancer that was solved with surgery while she has to go through a year of chemotherapy plus the same surgery? Also, endurance has never been my strong suit. I can lift weights and run sprints all day, as long as the end is in sight. 3 sets of 10 reps, no problem! Run a mile through wood chip trails carrying my sister on my back (which we did in our high school weightlifting program)? No problem! Run a marathon? Forget it! Sit still and do nothing? This is a problem.
Sit still and watch my sister suffer while I can’t do anything besides read books and watch Netflix: This really sucks.
Practicing compassion
I’ve found some comfort in devotionals on YouVersion like a screenshots from the one above called “Joy: A Countdown to Christmas” that I completed right around Christmas. But compassion has also never been my strong suit. One of the most memorable quotes I’ve ever heard in my life was when I was a camp counselor at HoneyRock in 2011. My co-counselor told me: “You’re super ambitious, but sometimes you trample people around you to reach your goals.”
Ouch. But I guess it was true.
As a “Woo – Positivity – Activator – Achiever – Communication” in StrengthsFinder, I love to make friends, see the best in every situation, communicate, and make things happen / get things done. When I have to sit still and watch things crumble around me–or, in the case of my sister going through chemotherapy, when I have to sit there and watch her suffer and do nothing except be there for emotional support and encouragement–it’s like torture.
So when we walked into church last week and discovered the sermon was called “Learning to Suffer,”my sisters and I looked at each other and realized we were about to be hit pretty close to home with some truth bombs. The preacher lost his wife to cancer last year and spoke about the Christian view of compassion–how following Jesus is not only receiving eternal life but learning “to suffer with” or “to suffer alongside” those around us. Jesus was crucified, died, and was buried before he was raised to new life, after all. This was especially convicting.
The preacher referenced 2 Corinthians 1:3-7 and John 9 to talk about how suffering is a natural part of the Christian life and may look different for everyone but must be expected if we’re to identify with Jesus in any meaningful way.
Like the blind man in John 9, neither he nor his parents sinned–yet, he was born blind “so that the works of God might be displayed in him.” This sounded a lot like us being struck with cancer for no apparent reason besides God decided it was our burden to bear at this point in time.
And it has been our prayer that God might be glorified throughout all of this.
So I’ve been doing some amazing Bible studies on YouVersion to help me work through the discomfort of compassion and to really try to figure out what God has to say to us about all of this.
But, like one of my friends said this weekend, “Sometimes, we don’t know what God is trying to say to us until after we’ve made it all the way through a difficult situation.”
Patience: Another one of my weak spots.
Moving forward
Recovery is not over—I still have two weeks until I can go to the gym again, I still can’t raise my arms above my head, and I’m a little anxious sometimes, but then I remember these are battle wounds that God has blessed me with and my cancer is gone so it’s all good.
My twin sister has three chemotherapy infusions to go: Her last 3 chemo appointments are January 10th, January 31st, and February 21st—then it’s on to surgery in late March or early April with the same surgeons I worked with!!!
I have a preventative ovarian cancer screening consultation next Tuesday. I have a general physical and dermatology appointment in February. I’m going to see my nutritionist every month, too. Plus my chiropractor. So every time I read an article about risk factors for cancer that say “Stay physically fit. Eat healthy. Don’t smoke”–I get crazy. I’m all of these things!! And I’ve complained to my doctors about this along the way, too.
“So, you’re telling me that for being physically fit, active, and healthy, I get cancer at age 30?” I ask.
“It could be much worse,” they say.
Or, in the words of my sister: “Maybe, someday, at the end of all of this, we will stop having to go to doctor’s appointments.”
She paused.
“Or, maybe not.”
Right. So we press on and “keep an eye on things,” trusting God all along the way!
This blog post is the sixteenth in a series about my (and now, my twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. The first post is about my first mammogram ever; the second post is about my consultation at Mayo Clinic’s Breast Clinic; the third post is about my stereotactic core biopsy at Mayo Clinic’s Breast Clinic; the fourth post is about my diagnosis with “Stage 0” DCIS breast cancer; the fifth post is about my in-person DCIS diagnosis at Mayo Clinic, beginning thoughts on my surgery timeline, and discovering that my twin sister might have breast cancer, too; the sixth post is about my twin sister’s invasive ductal carcinoma clinical stage 2A breast cancer diagnosis; the seventh post is about my breast MRI and two ultrasounds to investigate “suspicious” spots on my right breast and liver; the eighth post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; the ninth post is about preparing for my twin sister’s chemotherapy appointments, including details about her egg banking procedure in the city; the tenth post is a summary of my sister’s ovarian hyperstimulation syndrome and visit to the emergency room; the eleventh post is a summary of my double mastectomy surgery plan scheduled to occur on December 3rd, 2019 at Mayo Clinic’s Methodist Campus Hospital in Rochester; the twelfth post is about my twin sister’s first chemotherapy infusion at Mayo Clinic; the thirteenth post is about foobs, photo shoots and nipple tattoos (my plastic / reconstructive surgery plan); the fourteenth post is a recap of my successful double mastectomy and immediate direct-to-implant reconstruction operation; and the fifteenth post is about my surgical recovery and day full of follow-up appointments at Mayo Clinic in Rochester. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.