My Breast Cancer Journey Part 15: I'm (Surgically) Cured, I'm BRCA Negative & I'm a 31-Year-Old Survivor!

My Breast Cancer Journey Part 15: I'm (Surgically) Cured, I'm BRCA Negative & I'm a 31-Year-Old Survivor!
I'm "surgically cured" of breast cancer after a successful double mastectomy and immediate direct-to-implant reconstruction at Mayo Clinic in Rochester!

This blog post is the fifteenth 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 Rochesterthe 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); and the fourteenth post is a recap of my successful double mastectomy and immediate direct-to-implant reconstruction operation. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.

“You’re surgically cancer free!”

Yesterday, I spent a day full of post-operative follow-up appointments at Mayo Clinic in Rochester, which has become my second home in recent months! I’m praising God for the fact that I was officially declared surgically cured and was welcomed into the “Survivorship Clinic!” I am overwhelmed with gratitude for my caretakers, family, friends, prayer warriors, colleagues, and team of amazing doctors who have all had a hand in helping me through these past several months! One week after my double mastectomy with reconstruction, opioids aren’t necessary to manage my pain anymore and my scars look a little less like grizzly bear attack wounds (a la The Revenant) than they did when I first woke up from my adventure in the OR. I’m adjusting to my cancer-free life with foobs, and am trying my best to make friends with the implants that I’m convincing myself 1) won’t give myself an autoimmune disease or 2) cause me to have an allergic reaction of any kind.

Recovery is not over—I still have over a month of healing and follow-up doctors appointments to go following my double mastectomy with immediate direct-to-implant reconstruction last week—but I’m so thankful to take another step in the journey toward health. I’m numb from my collarbone down to the lower part of my rib cage just like my double mastectomy surgeon said I would be, which makes me 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 nurse at the Mayo Clinic Breast Clinic started crying when she let me go yesterday as she said: “It’s crazy to think of how you were meant to be here to see us…so your twin sister could get in and see us…and now you are all on the same team with a treatment plan.”

My sister has 4 rounds of chemotherapy to go and is in good spirits and has been to work almost every day (she’s a lawyer and loves her job) but is losing a little bit of her hair and is sad about that. I’m sad to see her sad about it but know that ultimately if she loses her hair it doesn’t matter because what does matter is that she’s alive and kicking cancer’s butt. She looked into wigs and apparently they cost upwards of $2,000 so we are pumping the brakes on that option while I tell her she should get a dramatic swoop haircut where she can cover up any bald spots with the hair she has left, like Trinity from the Matrix.

God is so good! Here is a summary of my post-operative follow-up appointments that occurred yesterday at Mayo Clinic in Rochester. On the way, we saw a “sun dog” in the sky. Which we interpreted as a sign of God’s blessing on our journey to Mayo 🙂

sun-dog-rochester

On the way to my surgical follow-up appointments in Rochester, there was a “Sun Dog” in the sky which my husband pointed out! 🙂

Genetic testing: I’M BRCA NEGATIVE!!! 

On the way to Mayo Clinic yesterday (at 7:58am to be exact–they get started early there!), I got a call from my genetic counselor that my BRCA genetic results were complete.

“You are BRCA negative! You’re also negative for all the other genes we tested you for.” 

“Seriously??” 

“I know! I double checked your name and your Mayo Clinic ID# and everything else in your file twice. It’s true. You’re negative. Given your family history, I’m not quite sure what this means. It’s a puzzle!”

My twin sister was negative as well. That means we are potentially identical! We are in the process of figuring out how we can get a “zygosity” test done at Mayo to figure that out!

In the meantime, I still can’t believe we’re BRCA negative given my mom had breast cancer at 40, my maternal grandmother had ovarian cancer, and my maternal great-grandmother had breast cancer. This unfortunately means the doctors don’t have a genetic explanation as to why my twin sister and I got breast cancer at age 30. It also means our baby sister, who is 25, is also high risk, with no genetic explanation. God knows what’s going on! None of us do! But He does. So we continue to trust Him 🙂

plastic-surgery-puzzle-mayo-building

My support team–husband, mom, and baby sister–all ready for a day of appointments at Mayo! They have puzzles in the waiting room. Those puzzles are symbolic of the puzzling journey we’ve been on this year, haha!

Surgical recovery appointment: “You look excellent!” 

My first appointment of the day was with general surgery. The P.A. of my general surgery team said I have been, and will continue to, heal well. For my exam, she opened up my gown and said, “Wow! We went with direct-to-implant reconstruction, huh? We don’t do very many of those! And you look GREAT!” 

Obviously, I was very happy to hear that I looked great 🙂

“Are you thinking about nipple or areola tattoos?” she asked.

That was funny because of the debate my twin sister and I have been having about nipple tattoos. I told her not right now because I have to heal first and then down the road maybe but I might also save my money and spend it on something else instead!

“You’re like my soul sister,” she said. “If you want ’em, great!, but you don’t need ’em!”

She was pleased to hear my pain was only a 2-3 out of 10. I was honest with her about the pain being much worse on my right side. She said that was likely due to the drains irritating a nerve in there, or it could be a result of the stitches pressing up against a nerve.

“The pain will likely get better when your drains are removed,” my general surgery P.A. said. “And it will likely also continue to get better as the stitches dissolve in there, as well.” 

It turns out that, with a double mastectomy with immediate direct-to-implant reconstruction, Mayo doctors put the stitches on the inside of the incisions. So the incisions look great, and inside of my incisions there is a series of stitches that go back and forth and will dissolve in time. They can cause some pain and irritation especially on nerves in there.

My general surgeon P.A. also commented on my scars.

“Your plastic surgeon is great because she places the drains high up in your armpit so you don’t have scarring on your sides–she does this so, this way, you can wear a bikini without showing a scar, if your husband, you know, wants to take you to Hawaii!” She laughed and winked at my husband, who laughed. That was funny. But maybe he will take me to Hawaii someday! 🙂 But I’d wear bikinis again even if my scars showed, anyway!!

“Well, we’re all done here, and you look great! Let’s take you down the hall to plastics now where they’ll remove your drains and tell you more about physical activity constraints,” she said.

Off we went to my next appointment of the day!

Plastic surgery follow-up: “DON’T DO ANYTHING BESIDES READ AND WATCH NETFLIX”

My plastic surgery P.A. said I would heal as long as I didn’t do anything besides read books and watch Netflix for the next 3 weeks until my next follow up appointment on January 3rd. I wasn’t too happy with that, and my husband and mom and sister knew it. So my husband asked, “Are tranquilizer darts an option?” 

My P.A. laughed. 

“If you do anything you’re not supposed to, you could compromise the implant. Also, now that the drains are gone, any overactivity could cause fluid buildup that would lead to infection and ultimately threaten your life—not that we’d let it get to that point, but that is a possibility.” 

Gulp. That was all I needed to hear for me to know I’m likely not going to be doing anything but sitting in my house reading books and watching Netflix for the foreseeable future. I’m not about to put my life in danger over being overactive. But I thought I’d ask what exactly overactivity might mean.

“What might overactivity mean? Can I bike or go to the gym?” 

“Overactivity means anything other than reading or watching Netflix. Even typing can be overactivity. We don’t want your heart rate to go above 100 BPM. I want to see you back in 3 weeks.”

So this means I’ll be reading lots of books, using voice dictation for typing, and making sure my heart rate doesn’t go above 100 BPM. And I’ll be going back in 3 weeks for another post-operative appointment! I asked her about the extra pain I was feeling on my right side as well.

“It is likely from the drains or stitches,” she said.

“I just want to make sure I wasn’t having an allergic reaction to the Alloderm,” I said. (The Alloderm is repurposed cadaver skin–a “dermal matrix”–used to hold my implant, which is over the pectoral muscle, in place. More details about my reconstruction are in this blog post at this link!)

“That hasn’t happened to any of my patients in the 8 years of me being here,” she said. “Don’t be my first!”

“Okay!,” I said.

“We want to make sure the Alloderm is meshing with your skin, so keep an eye out for infection,” she said. “Extra redness, drainage from your incisions, any temperature 100.4 or above.”

Plastic surgery follow-up: Removal of the drains!

Apparently, some women start crying with anxiety over the anticipation of having their drains removed. I, on the other hand, was just ready to get them out. Any tears I would cry would be tears of relief and joy. When the nurse came in, I asked if she was the one sent to rip them out.

“How about gently remove?” she said.

“Sure, that works!” I said.

She cut the stitches, told me to take a big breath in, and pulled. The left side slid out with no problem and the right side drain “was a bit more complicated” which the nurse apologized for but I was happy about because that would potentially explain the extra pain I was feeling on my right side. For those wondering what it feels like to have post-mastectomy drains removed, it felt like what it might feel like to be on Fear Factor and have a noodle that you swallow removed through your nose. Or a noodle that you snort up your nose removed through your mouth. You get it!

Bottom line: Drain removal was quick and it was relatively painless. Nothing to worry about especially in light of the fact that I got to have drains that had been coming out of my sides removed for the first time in a week. I was FREE!!!

My second photo shoot!

As soon as my drains came out a photographer came to get me to take photos of my reconstruction in a photo studio across the hall.

“We like to take photos before and after surgery to have things on file,” the photographer said.

“I get it! I’m ready for my centerfold!” (Haha. Same joke I made at my first photo shoot with plastics in September.)

My photographer thought that was funny. In front of a green screen, she asked me to look straight at the camera, hands at my sides. Turn to the left, hands behind my back. Turn to the right. Same thing. I had trolls to look at around the room. There was even a Santa troll I noticed.

“Special ones come out around the holidays!” my photographer said.

I asked if plastics was the only department that took photos. She said there are 18 photographers on staff at Mayo and they do lots of things: editorial photography, clinical photography, etc. I thought that was awesome!

“Great job!” she said. “You’re good to go!”

I made a follow-up appointment for 3 weeks out like my P.A. had requested and we were on our way to lunch and then the next appointments of the day.

poinsetta-tree-selfie-mayo-gonda

We got lunch in Rochester, some coffee at the Starbucks in the lobby of the Kahler Hotel, and headed back over to Gonda for my afternoon of Survivorship and Breast Clinic appointments. There was a pretty poinsetta tree in Gonda lobby that we took a selfie by! I love my family 🙂

My Survivorship Clinic appointment and Breast Clinic “graduation” 

I met with my primary breast clinic doctor at the end of my day. She came in and gave me a big hug.

“Congratulations!” she said.

“I know! Look at me! I’m a survivor!” I said.

She smiled.

“So, surgery went well,” she said. “And how about reconstruction? Are you happy with it?”

“Everyone says I look great so that’s great! I’m just glad it’s done,” I said.

“That’s great,” she said.

There was a medical fellow with her who said, “I see you just went through all of this! Just! Like, last week!”

“Yep! Last week!” I said.

“She had surgery the day before her birthday,” my doctor added.

“So you just left the hospital!” the fellow said.

“I got discharged on my 31st birthday,” I said. “I had incentive to get out of there!”

It was so exciting to think of all the ground we’d covered in 4 months. What a journey it has been–in August I met with my primary breast clinic doctor to talk about suspicious microcalcifications on the left side of my chest, wanting to make sure a biopsy that had been recommended to me in the city was absolutely necessary. Now, four months later, I have been “surgically” cured of DCIS that ended up being on both sides of my chest; I don’t need hormone therapy or chemotherapy of any kind due to a clear surgical pathology report with healthy margins; and I have a twin sister who ended up with invasive stage 2A breast cancer also being treated at Mayo Clinic who is currently going through chemotherapy, to be followed by a double mastectomy with reconstruction when her first part of chemo is over in April 2020.

We discussed my next steps now that I was officially a “survivor:” 1) A “Survivorship Clinic” appointment at Mayo Clinic in 6 months; 2) A clinical follow-up exam at Mayo Clinic in 6 months; and 3) Clinical breast exams every 6 months for the foreseeable future. In addition to this, I’m going to do a baseline ovarian cancer screening next month to make sure everything is okay there given I’m high risk for ovarian cancer, too.

“I bet you’re ready to go home and get off your feet,” my doctor said as we walked toward the checkout desk. “Take gravity out of the equation!”

“Yep! I’m wiped,” I said. “This is the first time I’ve been out of my house in a week!”

“I talked with someone who had a double mastectomy with reconstruction–she came back to work for half days after her recovery and was ready to just go home and collapse for a while after that,” she said. “And that was with tissue expanders, not even direct-to-implant!”

“I’m just ready to get back into action!” I said.

mayo-clinic-breast-clinic-staff

Here is the Mayo Clinic Breast Clinic team! They are awesome 🙂

The road to recovery

One of the last things my surgeon told me as I headed into surgery last week was: “It’s your job to make this look easy for your sister, you know.” I knew! And I told all my doctors yesterday that is what my surgeon had told me so I knew my marching orders.

The night before I headed into my surgery last week, I wrote a note on my phone to myself that I’ve looked back on several times since my operation. It said:

“My husband asked how I’m actually doing thru all this and I said that we aren’t promised lack of trials and we aren’t promised life will be easy and we aren’t promised perfect eternal bodies until we get to heaven and Jesus comes back. Our bodies aren’t ours anyway they’re God’s and cancer is one of the most evident effects of evil in the world. I know how serious cancer is when I see Steph going thru chemotherapy so I don’t really have a choice—we need to get my cancer out now. And I mean we could wait and see what happens and treat it with chemo when it becomes invasive but why wait for that to happen when we could take care of it now through the healing hands of the doctors God has blessed us with? It’s awesome to know someday chemo may be so effective that surgery may not be needed anymore but that’s not yet so until then we’ll go with this option! God is good and has perfect plans and he’s with me so there’s nothing for me to fear!”

zephaniah-3

I’ve been encouraged by the prayers, notes, texts, letters, and hugs I’ve received from friends, doctors, and colleagues along this journey. God has showed up in the Bible, in devotionals (like the Jackie Hill Perry devotional I’ve been doing on YouVersion called “The Secret to Hearing God” that quotes Zephaniah 3, in a screenshot above), in encouraging words from friends and mentors, and in answered prayers.

The journey hasn’t been easy but instead of asking questions like “Why me???” I’ve decided that, like I wrote in my MRI biopsy post early on in this journey, that God has chosen me to have breast cancer at age 30, and has a plan and a purpose for every single encounter I have and person I meet along the way.

Given my twin sister’s diagnosis with invasive breast cancer in September, the compelling prayer of intercession that was prayed at Oxford University’s Christ Church during an evening service my husband and I attended in England in September has been hauntingly accurate: “Lord, bring us to touch, bless and be wounded if that’s what it takes for others to be healed…bless us with urgency as now is the needed time. May your Spirit breathe into us your joy, healing justice, and forgiveness.”

The joy of the Lord has been my strength, and I don’t take a single step of this healing journey for granted. I am overwhelmed with gratitude for the doctors I’ve been given and trust and know that–like me–my twin sister will be completely healed in God’s timing! She has four rounds of chemo and a double mastectomy with reconstruction to go. Praise the Lord 🙂

mayo-clinic-rochester-gonda-selfie

Our journey at Mayo is far from over and we are so thankful for the blessings we’ve had on the journey so far!! Here I am with my baby sister who is 25 and starting her preventative screening journey at the Breast Clinic as she’s also high risk!

This blog post is the fifteenth 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 Rochesterthe 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); and the fourteenth post is a recap of my successful double mastectomy and immediate direct-to-implant reconstruction operation. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.

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