Now that those are taken care of...
It's been 8 months since I had my double mastectomy, and I feel great. I've taken my risk for breast cancer from roughly 90% to less than 2%. My boobs look ok, not my dream boobs, but pretty good, my nipples didn't fall off (thank ya Jesus), my scars are definitely unavoidably there, but I don't cringe at the sight of them anymore, and any pain is super minimal. I still don't have real feeling back (bummer) but I definitely feel some sensation from time to time, which gives me hope for things to come back to life more in the future. For now I will continue to run into things unknowingly because I can't tell where my boobs begin and end, but that's ok. I'd say that the consensus on the boob scenario is a thumbs up.
On the other hand, while I'd love to say that my BRCA journey is behind me, it's not...
I found blogging to be a (surprisingly) helpful tool for the mental side of dealing with my BRCA diagnosis, and a huge help while I went thru my surgery. I have gained confidence, and felt empowered by my decision to have preventative surgery much to the credit of all of you supporting me and sending me love along the way. I still stand by the fact that a support group wasn't for me, but I give all of the credit in the world to you guys reading and reaching out. Which is why it's surprised me how hesitant I have been to write this next post...
Now that I can remove the fear of waking up with breast cancer from my daily routine, I can no longer avoid the fact that being BRCA positive also puts me at high risk for Ovarian cancer. Seems a bit unfair if you ask me - high risk for one type of cancer, fineeeee no problem, chop my boobs off, lets call it a day - but two, come on, that's a bit much. The lifetime risk of ovarian cancer for a woman from the general population is less than 2%, while someone with the BRCA 1 gene mutation has a risk from 30-70%. Those aren't exactly numbers that help you sleep at night. Due to the inefficient methods of detecting ovarian cancer in its early stages, pre-screening is not seen as an effective method of prevention. While I don't have a history of ovarian cancer in my family, it seems that the presence of my gene mutation is enough to cause concern. The concern being so much that any doctor I have spoken with has suggested a prophylactic oophorectomy. Oh I'm sorry, are you not familiar with the term? Don't worry it's nothing major, just removing my ovaries, and doing so around the age of 35. No big deal. The biggest impact of this surgery would be me no longer being able to produce eggs, aka make babies, along with the onset of menopause, as well as other undesirable physical side effects. Not ideal. And also not something that I have felt completely comfortable about sharing - but I started this story with the intention of documenting my journey for myself, and for anyone else that was in my shoes and looking for someone to relate to, so I'd like to continue to do that.
When I first got the results to my genetic testing and found out that I was BRCA 1 positive, I had just turned 30 - literally, I found out on my 30th birthday. What a treat! My family history of breast cancer and its early onset of diagnosis was what had my immediate attention. Ovarian cancer seemed like it could be second in line on the list of worries. I instantly felt an overwhelming need to lay out the next few years of my life - to feel like I still had control over how I would experience the first few years of my thirties. The years that so many people around me would find themselves engaged, buying homes, having weddings, and babies - becoming adults, fulfilling their dreams of families and happiness. This was the first time in my life that I felt afraid that those opportunities were going to get taken away from me, especially if I maintained my go-with-the-flow attitude. I could no longer live by the notion of 'what's meant to be will be', that is if I wanted to be cancer free, and if I wanted to have children. I couldn't, and shouldn't, waste time. My mind would race at night trying to factor how many months it would take to undergo the breast surgery and recover, and then how many months, or years, it would be before I was engaged and married, and then ready to start a family. Would I have to give any of those things up, or could I still have all that I wanted while having both of these surgeries? What if I wasn't able to have as many kids as I hoped to by 35? What if I got cancer before I scheduled the surgery? Should I not get surgery, and just say fuck it, I'm going to live my life at my pace and if cancer comes I'll deal with it when I have to? I worried constantly that the time passing was time wasted towards those things that I wanted so badly. I think it's fair to say that it consumed me a bit. The fear that having this gene mutation puts in you is real, and it's overwhelming, and it kind of makes you crazy - clearly.
I have said before and stand strongly by the fact that I am 100% happy that I had my preventative mastectomy, and that my only regret is not doing it sooner. It's funny, I had this crazy sense of urgency to plan and get things done at the beginning of all of this, but no matter how many doctors I spoke with, and appointments I walked out of, I still hesitated to set the date. I wanted desperately for just one doctor to say to me "this is when you should have the surgery, don't wait a day longer!". But none of them did, they all said to do things when it felt right for me. That was very annoying. I wanted to be told what to do. I wanted it to be simplified. At the risk of sounding like a total cheeseball, I think the universe was waiting for me to have the people, or maybe one person in particular, there to help me get through it, before I could set a date in stone. As much as I pretended to leave my 'whats meant to be will be' attitude behind, in exchange for a new 'I am the ruler of my destiny' kind of vibe, I can't help but feel that everything has happened when and how it should have. Now that it's behind me I feel as though a huge weight has been lifted, and a lot of stress that I was feeling is completely gone. However, here we are with the next obstacle ahead of me. If I wasn't going to let my boobs kill me I am sure as hell not planning on letting my ovaries kill me either.
I have gotten to a place where I am finding a much better balance between wanting to live my life as it comes, while still taking control. I am not letting the fact that I am BRCA positive dictate my life plans, but I am using the knowledge as a tool to stay healthy. I definitely have some sense of urgency about having children, but I am becoming more at ease with letting it happen when it is meant to happen, BRCA positive or not. I am taking steps today to ensure that I won't miss out on anything that I want in my life because of the information that this diagnosis has given me. I have met with a fertility specialist and began researching the process of egg retrieval and freezing, to ensure that I would be able to carry as many of my own babies as I want to try to in the future. I continue to check in on any new info that I can find online about the ovary removal process, and keep myself up to date on the latest advances in gene mutations. I definitely get a little down from time to time about what the future probably holds for me, I can't deny that I dread another surgery. But the sense of feeling in control definitely outweighs any feeling of fear, and that is a major step in the right direction. I've decided to worry less, and live more.