This is a follow-up to My latest obsession and why I do what I do! posted December 2,2008
I haven’t written in a while. It has been a very long year for me both personally and professionally. I have been sort of in survival mode just to get through each week and somehow blogging just didn’t seem like the priority. After months of more surgeries and more biopsies, I had found myself in a situation that was more complex than I ever expected. In the midst of a failing economy and business struggling to survive it, I found myself having a total of four surgeries last year and then in April was told there were more things growing that needed biopsies. Each time my doctor seemed surprised that they were back already and each time the pathology was slightly further down the food chain. Still, I wasn’t told I had Breast Cancer, just that it would likely have become that if not removed. I had ten biopsies and currently several growths not yet dealt with. This is where I think confusion as a patient comes in. The gray area is how it was referred to. You are hearing you don’t have cancer–YET. Then, these are not normal changes. All the while, being given information as though you do, in fact, have the disease already. It was at this point in time that I was given the information about how I was at high risk for full blown breast cancer and what that meant in terms of potential ways of dealing with it. The next few months became a fact finding, second opinion, confusing abyss for me. I spent hours googling language from the pathology reports trying to understand everything that had been presented to me. What was apocrine metaplasia, cell alteration which shows cytologic atypia, mitotic figures, columnar cell alterations or ductal hyperplasia? The words that stood out were abnormal cells, atypia, microcalcifications repeatedly. At the beginning of Summer, I consciously decided to put it all on hold until after Labor Day and my daughter’s Bat Mitzvah. So here we are. Labor Day a month behind us and my decision still not in stone.
Neither one felt right. I am not currently sick. I am not fighting for my life. I am at extremely high risk for that in the future. Still, I am having a hard time reconciling the treatment options. So the choices are at this point, going on Tamoxifen for five years with residual benefit for an additional two to three years or a double prophylactic mastectomy. Tamoxifen supposedly reduces risk by up to 50 %. When I heard this option, initially, I was sure I would decide in this direction. Frankly, it sounded awesome because it meant no surgery. It sounded practical because it was chemotherapy, but in a pill form, which was neat and convenient. Except, it is not either of these things to me, now that I have thought about it. It meant I would need to take chemicals everyday for the next five years with the potential side effects including hot flashes, nausea, fatigue, mood swings, depression, headaches, hair thinning, dry skin, constipation and loss of libido. Hmm, I could live with the dry skin, I thought, I live in Colorado, so it sorta comes with that anyway. The rest, not so much. These were the more mild, more common side effects mentioned. The more serious ones include increased risk of Uteran cancer, which I am already at high risk for. Suddenly, I realized I was not real excited about this option. Of course, I also wondered what happens after the five years and residual two to three after taking it. So onto choice two. Bilateral mastectomy with bilateral tissue expanders and dermal graft and reconstruction. Yep, that was the official name. I know because I had to get it right to see if my insurance would cover any of it. Supposedly a 98-99% reduction in future risk. There are so many reasons why this was absolutely the most horrible thing I had heard. For starters, I had not really understood what a mastectomy really was. Really. When I saw photographs of the actual procedure I was to consider, I went completely numb. I had no idea how completely brutal it would look. I was told I was too thin to consider using fat from the abdomen or rear end in the reconstruction process, which I believe helps the implants look more natural, like breast tissue. So the next series of photos was showing how they use expanders to slowly stretch the skin out to accomodate implants. Every two weeks for several months, until they would be able to switch the spreaders for implants in my current size, they would add air to expand my skin. At that point another surgery to receive implants and then two subsequent procedures to get nipples fashioned from tissue and then a nipple tattoo. Holy shit. I had no idea.
With all of this to consider, I happily went off into Summer and back into denial that this was actually my life. I wasn’t sick!
So, here we are. I am certain that if I had been told I had already progressed to cancer that I would have made the decision already. The lumps that are currently inside of me are growing and I really will not know what they are comprised of until they come out. Somehow, I was paralyzed by the fact that nobody could tell me how long until it would be cancer. If I knew it was within the five years that they said was possible, I’d do it. If it were twenty, maybe not. It was at this point, about a week ago, I realized I needed to let go of the idea that I would ever have those kind of answers. Ridiculous. If doctors knew that much about this disease and who gets it and all the whys, there wouldn’t be the one in eight statistic of women getting this disease. With that, I realized that while emotionally hard for me, I was lucky because I am not currently sick and have every reason to believe I will remain that way if I did this.
Then there are my children. Of course I want to be here for them, but when I think about my thirteen year old daughter, I think about what I would say to her. She is at very high risk, not only because of my history, but her paternal grandmother’s a breast cancer survivor, and we are of Ashkenazic Jewish decent. She is going to have to be diligent and if she were faced with the same decision, I am certain I would say to her, yes, don’t be afraid. You are beautiful regardless. You will be loved regardless. You are still your amazing self.
So, a few days ago, as I was telling someone new in my life and that I care for, about the last nearly two years of my life. I was terrified to share all of this. I was afraid it would change how they saw me. I didn’t need to be. The response was “you shouldn’t be afraid to tell me. It is real life.” In that very second, I realized maybe I was having trouble listening to my own advice. It is real life and I was fortunate to find the first, and every subsequent lump, early and before it was too late. I will still be all of the things that make me, me. It is time to make the decision.