I typically don’t write about my personal life here. But something has recently happened to me that I realized I wanted to share. I wanted people to know about this more than I wanted to keep it to myself and pretend all was well and everything was normal.
There needs to be an increase in dialogue about genetics, and the resources available to people who are at a high risk of cancer. There just isn’t enough information out there. People are not aware that genetic testing is not just for the wealthy and famous any longer, and recent legislation will hopefully put it in the reach of more doctors to help their patients make better preventative choices.
I had always known that there was a very high risk I would get cancer. I’ve had conversations with doctors about my family history, and more than once it’s been suggested that I be tested for the BRCA gene mutation. I’ve always shrugged it off, but it’s begun gnawing at me, for several years now. My paternal grandmother died of cancer when she was close to me in age, and my uncle’s recollection of her sitting in the kitchen crying the day she came home after discovering it has haunted me. I recently took a trip to Maine, and we took the time to walk through the cold, empty and uninhabited house where she died. Stories my dad told me about being a little boy there, standing at the kitchen sink hulling strawberries with her were strong in my mind. I was mindful of her as I photographed the last place on earth she had called home, and it was almost as if she was silently standing there with me in those rooms and in the overgrown bower under the large trees that used to be her garden. A strong sense of sadness hung over me the entire trip, and I could not shake it. My father and his brothers were in an orphanage for many years after she died. We walked through those halls too, and I had to hold back tears as I lingered behind the tour in some of the rooms. I considered what that bleak place must have been like for a heartbroken five-year-old boy who just wanted his mother back, more than anything else in the world. Since the 1940s the orphanage has been upgraded considerably but traces of its former self remain. My father mentioned the cold stone of the stairwells, where he and the other young children had to scrub and mop every day. They were malnourished and abused there, having to steal food at night from matrons who prided themselves on using only a dozen eggs a week for an entire orphanage full of children.
The thought that the beautiful woman I was named for had to leave behind her young sons to the care of that place filled me with such a sad feeling of loneliness. I don’t ever want to have to watch my world slip away from me, powerless to control what will happen to my loved ones when I am gone. I realized that the genetic test my doctor had discussed with me was something I had to go through with. I could not just keep turning a year older every year thinking that it will never happen to me. As I dozed fitfully on the plane back from Philadelphia to Denver, the recurring thought in my mind was that I want to live more than I want to avoid the reality that I have a high risk of cancer, and possibly an early death. I looked out the window at the lights and clouds slipping by below me and I felt so much apprehension about what lay ahead but I knew what to do. The creme-brulee cheesecake and nice steaming hot towels after dinner were the beginning of my plans to celebrate my life and my plans to honor myself more than I ever have before. My husband picked me up at the airport and I didn’t say anything to him about what had happened. I decided would wait until the results came.
Surprisingly, my insurance paid for it. All of it. Every cent of the four-thousand-dollar fee for this test. If they were being this serious about it, so should I. After a few weeks I’d stopped waiting and forgot about it. Until the phone call came, around 6:45 in the evening. My doctor asked me if I had a few minutes, and could sit down…because it was important. I already knew what she was going to say. I asked a few minor questions, told her I was ok, and would get back to her the next week…and then the conversation was over. I sat at my computer for a few more minutes before I went out to tell my husband. “I’m BRCA1 positive,” I murmured, and curled up in a ball. It felt like I had already been told I had cancer, that it was already there, already a menacing threat. I cried a lot, and he was supportive over the next few days as we talked about what to do next. I’d read about Angelina Jolie’s experience, and at the time I thought, “how brave.” Now it was me, staring at the numbers. They were higher than the national rate for BRCA1 mutation carriers given on the genetic testing sheet because of my family history. Higher than 87%. Eighty-seven-percent or higher. The holidays were coming up, and I quietly kept my thoughts to myself as I was surrounded by the whirlwind of places to be, people to see, things to do. Life was going on as usual, but it felt surreal for me in those weeks. I remember driving to work over and over, feeling like I was suddenly on auto-pilot. The thought of the threat of cancer would not diminish and would only worsen. It felt like it was pressing on me. I felt like I was doing so well when I made the decision to undergo the testing, and now that the results were back, I was deflated and just numb.
Nearly two months went by, and during that time I had visits with doctors and specialists. I had my first mammogram. I did my research. I prayed. I talked about it to my friends until they were weary of hearing about it. Reading online, I tried hard to stay away from the horror-stories and the misery-loves-company forums online, yet I read about cancer until I was dreaming about it in my sleep, and the nightmares of cancer and dying haunted me. I cried, felt sorry for myself, and gained weight. There were not a lot of options for me, and finally, we settled on the surgery option. I already had known I would have a double mastectomy. The risk is so high for breast cancer and recurring incidences, that there was just no other option in my mind. Then there was the risk of ovarian cancer to tackle. We talked about an oopherectomy, a hysterectomy, and the hormone issues. So many things to consider and think about.
After meeting with another round of doctors, now including surgeons, I had been told I was essentially a “walking time bomb,” and that that my decisions about surgery really were the best choices I could make. It wasn’t if, but when. Not surprisingly, some people tried to convince me I was making a terrible mistake, or that I needed to start a family before having all of these things done, and that I needed to second-guess my decisions, and agonize over it even more than I already was. It was even suggested to me by a friend that these were evil male doctors were trying to “mutilate” me. They had the very best intentions, and I understood why something so drastic would be shocking. It was hard but I finally had to shut those voices out, even though they came from people I love and respect deeply. Next, I had to start saying no in other ways. I’ve had to turn down wonderful opportunities and clients, scale back volunteer work, and start making serious preparations and changes regarding my employment. I am beginning to accept and fully grasp how important this really is. The rigorous testing and examinations I’ve undergone have turned up other serious health problems I was having, and I feel grateful for each gleaming fold in the silver lining that goes with all the fears and nervousness.
There are days I feel sorry for myself, and whine a lot. I ask, “why me?” Without hesitation, there is always a little voice in my mind asking, “because you are strong enough.” I sometimes wake up with nightmares about looking like Frankenstein, and the sight of pink ribbons everywhere makes me emotional. I used to have a love-hate relationship with my body, but I am finding ways to love it a little more each day, and appreciate it, here, now, knowing it will drastically change, but those changes will not be bad changes. Just different changes. It took this happening to force me to realize I’ve been living in fear of cancer for many many years already, and imagining myself helpless and powerless. I had already allowed myself to be a victim of something before it even happened to me. I’m still sad thinking about my grandmother, but I believe she is proud of me for deciding to alter the course of my life for the better. I am so fortunate to have the technology, the advances in science, genetics, and medicine working for me that she did not have available to her in the 1940s.
In a few days, I’ll have the first of several surgeries. I’m nervous, but relieved to finally have taken the first steps towards the implementation of a proactive, aggressive plan to keep me cancer-free, so I can stand at my sink each summer and hull strawberries until I am old and grey.
Although I am frustrated at the inertia I feel now… I know life will pick up and resume for me when I am taken apart, put back together, healed and whole again. I am so grateful to be surrounded by loving family, friends, coworkers, and clients who give me strength, make me laugh, challenge me, and refuse to let me wallow. Thank you. I’ll update again soon with a link to another blog where I’ll talk more about my BRCA1 journey.