I have spent hours reading through other peoples blogs, immersing myself in their stories, finding similarities and differences, laughing and crying, and truly appreciating the unique story in everyone. I debated whether to begin a new blog, as it has been 2 years since my last post and I wasn't sure my story was intended for my family blog. Then it dawned on me, my story IS my family story. My journey has and will continue to impact the five of us. And it is so important for my family, especially my children and possibly their children, to know my story.
In April of 2018, my sister was diagnosed with breast cancer. Our family had some history on my Dad's side of the family, but nothing really on record on my Moms, so we were quite surprised. My sister has had quite the journey, her own story to tell. But, through her cancer we discovered she has an inherited genetic mutation of the PALB2 sequence. Because my father lost his sister to breast cancer, he pushed his testing to find out if he was the carrier. He was not, which means it had to come from my moms side of the family. This is where my journey begins.
In January of this year I met with the UF High Risk Genetic Department. My genetic counselor went over what my sister's mutation meant for me. You see, genetics are a 50-50 thing. You either inherit or you don't. And only about 5-10% of breast cancers are inherited. At that appointment they took my blood to send to the Invitae lab for testing. I anxiously left that appointment, wondering when the results would come back, and what that would mean for me.
January 29 started for me like most Tuesday mornings. I was rushing around, getting everyone out the door, grabbing breakfast, and meeting my teammates to ride to our tennis match. We were playing in Winter Park, so it was a busy morning. We arrived at the courts, warmed up and were getting ready to start our matches when my phone rang. I saw the number, and had to pick up. My genetic counselor informed me that I had indeed tested positive for the mutation and I needed to make an appointment with the Oncologist Dr. Maroose, and her Nurse Practitioner Deb as soon as possible. The phrase "and a moment came that stopped me on a dime" is perfect for how I felt. I quickly composed myself, reminded myself I DON'T HAVE CANCER, and took the courts to play one of the best matches I have ever played. I kept repeating to myself, "I am going to appreciate every shot and every moment on the courts while I can." My partner and I won the match! The overwhelming emotions I had channeled into my match took hold of me. As I told my tennis family the news, I let go and cried.
February 5 Bob and I met with the UF High Risk Genetic Team. After going over my results with the genetic counselor, we met Dr. Maroose. She is an Oncologist who heads up this amazing team. We discussed options for my future. As anticipated, she talked about surveillance, having regular MRI's and Mammograms in addition to my check ups. She talked about vitamins, and other options. Then, she strongly encouraged me to have a prophylactic bilateral mastectomy. Big title for saying "you don't have cancer, but let's amputate to reduce your risk to less than 5%." That was a lot to swallow. She gave us the names of some breast surgeons and plastic surgeons she recommended, encouraging us to research and get back to her if we had any questions. We left completely overwhelmed, but clung to the fact that I DIDN'T HAVE CANCER.
OVERWHELMED. That is how I think I spent the spring. I turned to God, not able to catch my breath when I thought of what lie ahead, trusting him to guide me. I had my mammogram, and my MRI. Both came back clear. I made an appointment with the breast surgeon, Dr. Smith. He was great, Maggie his nurse amazing. With my list of Plastic surgeons, Maggie recommended Dr. Lee. After our appointment, I waited for Dr. Lee's office to call to set up our appointment. I continued to ask God for strength as I moved forward with the decision to have a preventative mastectomy.
I'll never forget when I met Dr. Lee. After introducing each other and finding out a little about me, he said "If you didn't have a genetic mutation, I bet you wouldn't be here." What an understatement. I never thought I would find myself sitting in a chair at a plastic surgeons office talking about reconstruction from a mastectomy. In my life, I never dreamed I would have a boob job. I honestly never even cared about my chest. I never successfully breastfed my girls. With Maddie, I felt like my breasts had failed me, not making enough milk to help her thrive. With Carly, I hardly tried, for fear I would have the same troubles I did with Maddie. With Jack, I wanted so badly to be able to provide him with the nourishment. Even to the point of meeting with a lactation consultant who told me I had insufficient glandular production. I was given a medicine to help produce more milk, but still had to supplement. So, I already felt like the main reason women had breasts had already failed me. No, Dr. Lee, I wouldn't have met you without this mutation.
Much happened between my first appointments and July. Fear. More appointments. High School Graduation and parties. FSU orientation. Vacations. But the day finally arrived. July 22. We checked in and met with Dr. Smith prior to surgery. Bob would see Dr. Lee, but I was not awake when they spoke. Surgery took about 3 hours, all breast tissue was removed, and expanders were put in. They both held 180cc's of saline, which as Dr. Lee said was a pretty good first fill. I stayed overnight in the hospital under nurse surveillance, and was released to go home on the 23rd. (As an aside, a good friend drove me home so Bob could take Maddie to have her wisdom teeth removed. God love him, 2 patients at once!) My bed was set up on the couch so I was able to sleep in a reclined position. My nurses were amazing, everyone stepped up to take care of Mom. I slept, watched Netflix, and slept some more. Bob changed my drains and made sure I took my meds, getting up in the night to make sure I took the antibiotics round the clock, helping me to the bathroom and giving me sponge baths. I know it was tough on them, but they helped without much complaint.
The details of the weeks following the 22nd are somewhat jumbled. Partly because of meds, mostly because week after week we went to the doctor, waiting for incisions to heal. We had new wound dressings, compression ace bandages, more antibiotics for 7 weeks, waiting for my body to show signs that we were moving in the right direction. The onlya positive news we received in those first few weeks was from Dr. Smith, that pathology had come back and I DIDN'T HAVE BREAST CANCER. Praise God! Now I just needed my body to cooperate!
September 5 we went for yet again another incision check. Deb the nurse practitioner was very concerned that she could see the alloderm, the cadaver skin they use to create the pocket for the future implant. She told me we would need to go back into surgery as soon as possible to close my incision, but Dr. Lee was out of town so she would work with the scheduler to fit me in very soon. I was bandaged up and re-wrapped in compression and sent home to wait for her call. We were headed out of the elevator when Deb came flying down the stairs. She asked if we would be open to another doctor in the practice doing the surgery sooner than later. Of course, we said yes, wanting to move forward as soon as possible and knowing many of the doctors in this practice were referred to us at our very first appointment with Dr. Maroose. Bob and I left a bit relieved, but nervous, and of course, I was devastated I was going to have to have surgery again. We stopped for a quick late lunch on our way home. After lunch, my phone rang. It was the scheduler letting me know what time I needed to be at the hospital the next morning. Dr. Pavri would be doing my surgery in Dr. Lee's place. Looking back, I am grateful it was scheduled so quickly. I really didn't have any time to think about it at all.
September 6 we checked into the hospital. As they checked me in and prepped me, I felt very relaxed. I had been so concerned with healing and getting back to my normal life, I was forgetting that God was in control. You see, I like my schedules and routines. Nothing since the 22nd of July was making me feel in control. I couldn't lift my arms, I couldn't SHOWER. I was just so frustrated. But, that morning, I apologized to God for thinking I had any control over the situation, and surrendered to him. And I was at peace. Dr. Pavri came in and introduced herself, told me how she was going to proceed, and gave me complete confidence that everything would go well. See what happens when we let God take over? :)
Fast forward to today. Yes, there are more details involved in the last 5 weeks. But this post is long enough. Tomorrow I will have my 3rd fill (Dr. Pavri had to take quite a bit of saline out of my expanders on the 6th to help ease the tension on my skin). My incisions have healed and even the scars are starting to lighten. Potentially next Friday will be my last fill, and then we will find out the next steps. I am still ready to be back on the tennis courts and running again, but for now, I will be patient and trust God. Hopefully the implant transfer happens this calendar year, but God will take care of the Billmans, so my faith is there.
It is important for me now to share MY story. I am ready to begin healing in ways not visible to the human eye. I have found comfort and courage from other previvors like me. Now I want to provide hope and maybe inspiration for other daughters, mothers or friends going through the same or similar journey as myself.
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