My mother and I had a strained relationship and had not spoken in months. I had already lost my dad to Leukemia 13 years previously and my mom had breast cancer 2 times at this point. My boys started calling me saying “mamaw is sick, mom she needs to talk to you.” My boyfriend and I were out of town visiting his family for the Thanksgiving Holiday and he talked me into reconciling with her. I called and she happened to be in the same town as I was at the time. We met for coffee and she told me she had cancer again and that she carried a genetic mutation called BRCA2. She handed me some paper work with a bunch of #’s on that I didn’t understand nor did I care to. I was just angry, more angry now than ever before. This woman that hates my guts now is telling me there is a 50/50 chance she has passed on a gene mutation to me that could kill me.
I knew that I had it I just knew. On February 2, 2017 I went with my mom to her Oncologist office for testing. The doctor looked at my blood work and said “we will do the genetic testing to get your number but I am sure you carry the mutation”, my vitamin D level was so low it was almost non-existent. On February 20, 2017 I got the official call that yes indeed I do carry BRCA 2. I felt like I had been kicked in the gut and handed a death sentence. I wanted this out of my body, I felt like I actually had cancer but there was nothing that could be done about it.
First things first let’s get the easiest surgery out of the way. April 25, 2017 I had a complete hysterectomy and oophorectomy, I was to spend the night in the hospital and go home the next day. I couldn’t breathe. I had pulmonary edema in both lungs to overcome as well. Prior to surgery I was not in perimenopause but had always suffered from PCOS. Well let’s just say surgical menopause with no hormone therapy was/is hard. That crap is no joke and there were so many days I didn’t know if I could get out of bed.
Fast forward to March 31, 2019, the day that I had bi-lateral mastectomy and the beginning stage of reconstruction. My oncologist spent 4 ½ hours performing the mastectomy and then the plastic surgeon began her 3 ½ hour reconstruction and placing the tissue expanders. Over the next several days/weeks the pain, drains and recovery were what I expected. My drains were very irritating and I had to keep them for over 3 weeks, upon removal I was able to discontinue the antibiotics. I went to the PS office weekly for tissue expander fills of 60cc on each side. My incisions never really seemed to want to heal completely. There was always a spot or 2 that didn’t look just right. Then I got an infection in my right shoulder so back on antibiotics. Those spots that never looked just right became full blown necrosis, I was wearing diapers on my boobs to catch the liquid pouring from my body. Surgery on May 1, 2019 to remove tissue expanders, “power wash” my chest cavity, place new expanders and cut out all necrosis. You guessed it starting all over means drains and antibiotics again. The nerve damage and muscle spasms this time seem to be much more intense. The swelling in my arm pits makes me feel like a football player as I certainly cannot put my arms straight by my side nor can I raise them above my shoulders. Over the next 2 months my incisions refuse to heal. Every week the PS had to cut out the center of the incision in the office and clean up and stitch back up. During this time I was on the 4x the normal dose of antibiotics. I have not left the 4 walls of my home in over 3 months other than the doctor or hospital. Is it the pain, depression or pure exhaustion? All of the above. One Sunday morning I woke up and felt worse than my new normal, my heart was racing and then it felt like it would stop and I gasp for air. I called my mom hysterical (as I am now single and my kids were at their father’s) she rushed over and by the time she got here I was covered in hives. After speaking with the doctor, dosing up on medicine the symptoms began to subside. Large doses of antibiotics for extended periods of times can cause allergies, who knew. I had my “graduation” appointment with my oncologist the next week and she did not let me graduate as she was not happy with my breast incisions at all. She got on the phone with the PS and they decided that we need to try wound vacs. I had wound vacs placed for 7-8 days 3 times and finally my incisions are healed. Hallelujah! With wound vacs still attached it is time for my exchange surgery, July 31, 2019. I had the tissue expanders removed, scars tissue revision, 790cc implants placed OTM, scar revision and wound vacs placed again. When I woke up I had so much gauze and dressing inside my surgical bra I had no idea what I was going to look like. I was not to remove anything for 6 days until my next appointment. At that appointment when the doctor removed the bra, bandages and wound vacs I just stared at myself in the mirror with zero expression. They kept asking me if I was ok and I responded “I’m fine”. When I got home and removed my clothes I stood in front of my mirror and cried, screamed and then nothing. I hated that reflection in the mirror. Over the next week I refused to look in any mirror at all. I had a death in the family and needed to find a bra and clothes I could wear. This was the worst experience by far, nothing fit. I was a 40/42 full D pre-surgery and now with the largest implants available I don’t even fill a C cup, how is this possible? At my next appointment I cried through the whole appointment and my doctor said we can get the volume in 6 months with fat graphing. Another damn surgery for this single momma that HAS to get back to work and not take any more time off. This past week I was cleaning my inframammary fold incision sites and they start bleeding on my right side. Are you F@ing kidding me was my immediate thought. I put dressing on it and pretended it didn’t happen. I saw the doctor the next day and she states this is “normal” and not to worry but now she would be unable to release me. How is this normal a month after surgery? Physically this journey has been hard but I can handle the physically hard, what I was never prepared for was the emotionally hard. The never ending cycle, the large weight gain, hating the reflection in the mirror….that shit is hard. I went to the grocery store the other day and got so sick from the pain and exhaustion that I was unable to finish and had to leave the store. I know there is a reason for every single complication, God has shown me 2 angels during the last 5 months that have shown me I did the right thing but its still hard.
As Debbie Downer as that all sounds and as bad as it has been I am blessed! I am blessed that I had the opportunity to take these steps to avoid the cancer that was sure to come. My hard is worth every single second knowing that I have removed that cancer risk. Some have asked me “would you do it again”? HELL YES.