One of the countless things I have learned since being diagnosed with breast cancer is that everything is a hurry up and wait game. There is a constant barrage of tests, procedures, and treatment, and for every action, there is a period of inaction when you are forced to await your fate. Since I began treatment, I have enjoyed a reprieve from that medical purgatory, as I much prefer to be doing something, anything, to get out of this club. Today, though, I was reminded of another lesson. Expect the unexpected.
Rewind to my most recent oncology visit. As I prepared to leave the exam room, my oncologist casually mentioned that I could speak with a genetic counselor, if I wanted to do so. For a split second, I thought about declining, as I have zero family history of breast cancer and no significant family medical history to cause alarm, but since it was suggested, I decided to make the appointment. This morning, I definitely had second thoughts about my decision.
I arrived at the appointment calm, cool, and collected, and I left anxious, frazzled, and stressed. What a difference an hour and blood work make! I really was not sure what to expect from the appointment, as it was another first for me, but I definitely did not expect what I heard. As the geneticist provided me with a refresher course in basic genetics, I found myself wishing I had paid better attention during biology. I was still trying to grasp the basic concepts being presented to me, when suddenly, new terms were being bandied about, like BRCA1 and BRCA2. At first, it just sounded like a bunch of jumbled letters and numbers, then, it started to sound all too real and personal.
I felt my calm reserve give way to near panic, as he explained that the tests could determine if my breast cancer were hereditary or not. If it is hereditary, he went on to say, it will put me at a much higher risk for a recurrence of breast cancer and ovarian cancer. Those words had barely left his mouth, when he began to toss out recommendations like having a bilateral mastectomy and removing my fallopian tubes and ovaries, not to mention the implications it could have for my two daughters and two older sisters. Wait. What?!
The geneticist focused on how my “young” age of being diagnosed with breast cancer and a possible Jewish ancestry do me no favors in this club. I always have prided myself on coming from a strong gene pool, as my father’s side of the family is known for longevity. Now, I felt like I was drowning in this same gene pool.
On top of this information, he began tossing out various figures and statistics. If there is one thing I definitely have learned, it is not to put much stock, either way, in odds and percentages, especially since I tend to be a medical outlier. After being confronted with all of the possibilities and probabilities, my first thought was to get the hell out of that office and live in ignorant bliss. The geneticist did offer that as option, but not before adding that I would not only being undergoing genetic testing for myself, but it would be for my sisters and daughters. Survivor’s guilt meet genetic guilt!
When all was said and done, I consented to BRCA1 and BRCA2 testing, along with testing of some “moderate risk” factors. This decision has put me squarely back in the hurry up and wait game, and I detest playing games, especially this one. I understand that I should feel grateful that such tests exist, so, my daughters, sisters, and I can make more informed decisions about any health care implications the results may reveal, but right now, I am scared for all of us. I don’t want anyone of us to have to make any informed decisions about our health. I just want all of us to live healthy and happy lives, free of any type of cancer or other diseases. I miss my life that did not include breast cancer.
Part of me wants to delete this post, and part of me feels compelled to apologize for it. For I truly understand that my little dog and pony show pales in comparison to what others, especially someone I love so very much, are going through right now. I also am sure that in due time, I will be able to refocus on all that is good and positive, but not right now.
That’s another story . . .
Categories: That's Another Story