Jerilyn's Breast Cancer Story
|Even though I have known so many who have had breast cancer, I could not fully understand the emotional agony following my diagnosis. I watched my mom die from the disease and, although she passed away a long time ago, the memories of all she went through are etched in my brain forever.
The next several weeks were an emotional roller coaster, going to several more doctor appointments and going through more testing. From this time forward, at every appointment I was greeted by the word oncology. That alone felt so surreal. Because I felt so healthy and strong, I could barely get my mind around the idea that this diagnosis was my own. I had been in these places with my mom 16 years ago and 3 years ago with my best friend who passed away from brain cancer. Really, how could this be me?
Dr. Nathalie Johnson was not only my breast cancer surgeon, but she turned into my greatest advocate, a true gift from God. Every visit, whether on zoom, over the phone, or in person, she had amazing, loving energy that calmed my anxiety. On our first in-person visit and after she had received all the preliminary tests she had ordered, she presented me with the clinical diagnosis and my options for surgery. Based on findings and biopsy results she was fairly certain I had early-stage cancer. First and foremost, I wanted to be healthy. However, there is quite a mental battle going on when trying to visualize the disfigurement of removing one or both breasts. If I opted to do lumpectomies, then I would need radiation. The tumors were far enough from each other that Dr. Johnson thought I would lose a large portion of my breast with this option. My second option was to remove only the right breast with reconstruction or, third, a double mastectomy with reconstruction. Dr. Johnson assured me that getting cancer in the left breast was highly unlikely, so I tormented over the decision of what to do for the next several weeks.
The most important part of the journey is getting healthy, however, imagining removing one or both breasts is a whole other level of loss and anxiety. On my first visit to the plastic surgeon, I was shown pictures of patients after one or both breasts had been removed. Most of the patients had scars horizontally across the front of the breast or breasts. The ones who had reconstruction with skin flaps from the muscle of the back looked horrendous and disfigured, and none of them looked like actual breasts. Dr. Burgess let me know this was a marathon, not a sprint, and assured me that we would eventually get to the best possible outcome. There were times along the way I could not keep myself together… this was one of those times. I walked out of her office, sat in my car, and cried for 30 solid minutes.
On a more positive note, I was told by the breast and plastic surgeon that I was likely a good candidate for skin and nipple-sparing mastectomy, but we won’t know for sure until during the surgery when they remove all the cancer and breast tissue. The pathologists would give the all-clear if there is healthy tissue beneath the nipples and far enough away from the cancer cells. Who knew keeping my own nipples was a thing? After being tormented for weeks to remove one or both breasts, Dr. Burgess offered me what I needed to hear. Once she realized my mom had passed away from breast cancer, she told me she herself would not hesitate to take both breasts if her mom had died from breast cancer. She then said the outcome for reconstruction is always better dealing with two oranges versus an orange and an apple. With encouragement from my husband and the doctor during this appointment, I finally came to the conclusion I would have a double mastectomy. The surgery was set, and I was able to move forward, preparing myself for the mental battle of all to come waiting for surgery and recovery. Thankfully, I had work to distract me up until the day before my surgery.
With terrible anxiety, my husband and I arrived at St. Vincent’s for a 5 am check-in. I was told the surgery would last about 6-7 hours. The breast surgeon begins the surgery to remove all the breast tissue, and the plastic surgeon implants the reconstructive spacers. Pathologists are on site looking at the cancer and lymph nodes. The nurses got busy immediately gathering information, attaching me to the vital sign monitors and putting in an IV for medications throughout the day. After speaking to both the breast and plastic surgeon and the anesthesiologist, the waiting for surgery was over. Although I was a bit loopy from the antianxiety medication in the IV, I vividly remember looking over at my normally strong-as-nails husband. This time, he was teary-eyed when he bent to kiss me. He still managed to smile and told me, “I’ll see you in a little while, you’ve got this”, as they rolled me into the operating room. Later, he told me he paced the hospital for the entire six-hour surgery. Both of us knew we would soon find out the full extent of my disease, and if the cancer had found its way into my lymph nodes; life would never be quite the same.
Dr. Johnson, I discovered, has the voice of an angel. Since the surgery was December 7th , she held my hand and sang Silent Night, getting the entire OR to join in song as the anesthesiologist put me to sleep. For me it seemed like a minute had gone by, but I woke up 6 hours later not as comfortable as I had gone in. I was wrapped like a mummy with 2 very uncomfortable drain tubes on each side, a wound vac across the front of my chest, and very tight wrap and bandages. I literally looked like a science experiment with tubes hanging everywhere. I was in a good amount of pain but grateful the surgery was over. A lovely nurse was busy getting the pain under control when Dr. Johnson came into the recovery room. She gently grabbed my hand, gave me her lovely smile, and said, “Your surgery went great, and your lymph nodes are all clear…Hallelujah”. I couldn’t believe my ears…all I had left were tears. Jeff came in shortly after the doctor left, she had called him with the good news 2 hours prior, so he was busy calling family and friends to let them know I was doing well. He and I shed lots of happy tears. The news was such an enormous relief. I was finally released to go home at 10:30 pm.
The next week was the hardest time for recovery for sure. Jeff had to help with every part of my care. I wasn’t steady on my feet and would feel nauseous when I stood, so, unfortunately, he had drain tube and pain medication duty for the first several days. Three days after surgery was my first follow-up with the plastic surgeon; I was dreading seeing what was under the mummy wrap. I asked Jeff if he wanted to stay in the room when they unwrapped the bandage. His response was, “Don’t be ridiculous, that’s the last thing I’m worried about.” With that, the nurse began unwrapping the bandages and took off the wound vac. The moment had come and, oh my God, they looked awful!!! I burst into tears and felt an overwhelming sense of loss. All I had was skin, nipples, and an outline of the hard plastic implant that was square and hollow in the middle—nothing could have prepared me for that. When I gathered myself together, the nurse told me the doctor would be in shortly, and if she thought everything looked good, the expansion would begin this very day.
After the doctor examined me, sure enough, in came the nurse with the longest needle I’d ever seen and a magnet that helped her locate the port where she would fill the implant. Once she found the site, she cleaned and inserted the needle and filled the implants with 100 ml per side. I went from unwrapped, deflated skin and nipples to tiny breasts. Jeff and I both laughed at this absurd moment. It was like watching a balloon inflate, only it was my breast skin and nipples expanding. Each week, I had an appointment to check the expanders and a small amount of saline would be added. Around the 3rd week post-surgery, the scar on the right side had turned black, meaning the area was not getting a good blood supply and the tissue was dying. I was told I would need another surgery as soon as they could get me in…this was a gut punch for sure since I was well into my recovery. Ironically, the second surgery turned out to be on my mom’s birthday, January 3rd. I saw this as her way of telling me she is with me during this journey.
My final follow-up appointment with Dr. Johnson was on December 30th. She came in the room to greet me and Jeff with her infectious smile. She talked with us for a long time going over each line item on the final pathology report. The best news was how well the two months of tamoxifen had done, managing to kill off 80-90% of cancer cells in both tumor beds. Dr. Johnson said I had the best-case scenario, knowing the drug was working so well, and of course, no cancer in the lymph nodes. She hugged me and told me that she would always be home base for me if I needed a new referral for an oncologist or just wanted a visit with her to check-in. My care would be in the hands of an oncologist I had yet to meet who would manage my tamoxifen and I will see for checkups for 5 years. I am eternally grateful to have been in Dr. Johnson’s hands for my care at one of the scariest times in my life.
After months of enduring the expansions and my breasts morphing into crazy, irregular-looking large lumps on my chest, my final implants were placed in June of 2023. Dr. Burgess did an amazing job with my new breasts. I will forever be grateful for her meticulous care and amazing work. They really do look like boobs, and with my own nipples, they somewhat resemble my 25-year-old ones. I have earned the battle scars for sure, but looking like myself brings so much healing, and I am so very thankful for that.
Breast cancer is all-consuming. You can’t run or hide, you can only deal with what comes. The journey most certainly is a marathon, not a sprint, as I was told in the beginning. The outpouring of love I received from friends, colleagues, and clients was extraordinary. I am so blessed to have received regular meal deliveries along with hundreds of cards, flowers, and gifts. As bad as I felt and as frightened as I had been, I felt loved and lifted by so many kind souls.
This is now my story. I have officially joined a club I never wanted to join. Yet, I feel so much gratitude by having this experience. I am thankful every day for my health and grateful for a new understanding. For those who will find themselves in a similar story, I am cheering for you. For those who have come before me, I continue praying for you. To those we have loved and lost, your story will not be forgotten. My story, though it’s bittersweet, is not the same as my mom’s. She did not get regular mammograms and was diagnosed with stage 4 breast cancer, losing her battle in 6 months from the day of her diagnosis. If the disease is caught in the early stages like mine, the prognosis is good. Let’s remind each other the importance of early detection; get your mammograms; and as you learned in my story, self-exams are critically important.
Wishing all of you lovely ladies a lifetime of health and happiness; together, we stand and can truly make a difference.