This post was written by one of our recipients, Viktoria, from Union City, NJ.
Hi, I’m Viktoria,
I’m 40, and a mom of two boys. Last year I was diagnosed with invasive ductal carcinoma, and also I was found to be positive for the BRCA1 mutation. Cancer had already spread to my lymph nodes, and tumor was too big to operate, so I had to start with chemo to shrink it.
I did the TCHP protocol first. Two weeks after that, my hair started to fall out in chunks. It was the most emotional part for me and my family. I was always a long haired girl. I let my four year old boy cut it, to make it less scary for him.
In September 2015, as a twenty-six year old first grade teacher, the last thing I expected was to find a lump in my breast and then be diagnosed with an aggressive breast cancer. This journey started very quickly and will last months with genetic testing, twenty weeks of chemo, surgery, radiation, and then reconstruction. I knew I was facing a long, difficult road ahead, but I made a commitment to myself to find joy every step of the way.
The day I was going in for my third treatment, my hair began to fall out. I knew this day was coming but there is no way to fully express my feelings other than I felt like I was losing part of my identity, confidence, and femininity. It was heart breaking to just watch it all fall out so I had my mom shave my head. That same day I received a phone call from Lolly’s Locks about my application and had been approved for the wig. This was such a God-send on a day when I felt so discouraged and self-conscious about my looks. Although losing my hair was not one of the joyous moments in the journey, I knew I had hope to be able feel myself again because of Lolly’s Locks.
I promised some weeks ago to address a couple more cancer issues that not everyone thinks of: the hidden expenses of cancer. Everyone knows that health insurance and treatment for major illness is not cheap, but there are so many other expenses associated with a cancer diagnosis that go beyond those obvious costs. They are particularly hard on a young adult such as myself, and they are not contained to the months you spend battling the disease. A cancer diagnosis creates major lifestyle changes that remain in place for the rest of your life.
When I was diagnosed, I had just left my job managing a bakery. While I loved my co-workers and still enjoy the macarons, the arduous commute and bakery hours were just not practical. My plan was to enjoy the holiday and start looking for an office job (my degrees are in political science and justice) in the New Year. That plan never came to fruition, as I was diagnosed on December 14, 2012, one day after I turned 24.
As many of you know by now, my mom was diagnosed with advanced ovarian cancer in January 2012, and she tested positive for the BRCA2 gene mutation shortly thereafter. Now that I know more about the BRCA mutation, it seems so clear that based on her extensive family history of cancer and her Ashkenazi Jewish heritage, she should have been tested long before she received her cancer diagnosis. But, genetic testing for cancer genes is a relatively new medical advancement, and, until very recently, doctors did not regularly recommend genetic testing in a prophylactic capacity without something more compelling than just a troublesome family history. Such testing was, at that time, not covered by insurance and cost prohibitive for patients. Still, the news of my mom’s BRCA-positive status was a slap in the face. Why didn’t doctors at least tell my mom about the potentially life-saving option of testing, and allow her to make the decision for herself? The what-ifs that stem from this question still regularly keep me up at night, and form the basis of my constant urging my girlfriends and Lolly’s Locks’ recipients that self-advocacy is one of the most important things you do can for your health: ask questions about benefits, risks and alternatives of any proposed course of action, and move to another provider if you don’t feel like you are heard or that you are not being given all of the pertinent information.