My name is Alyssa and I was diagnosed BRCA 1 triple negative stage two at 26 years old. My diagnosis came March 29th 2019. The same week my boyfriend and I closed on our house, two weeks before my birthday and in the midst of grad school. I received my phone call while driving to my new house, boxes loaded in the back. There is no preparation for a phone call like that. I was angry and confused, but mostly angry. After all, my doctors told me I had nothing to worry about being I am young. My family and I had no time to fully digest what was happening. Our thoughts were driven toward doctors, biopsies, research and mammograms. BRCA? Triple negative? These were words we’ve never heard of. At the time we thought there was no trace of breast cancer within my family. We pulled out the family tree and started crossing out “potentials” one by one. Finally, my dads cousin ( whom he’s only met once or twice) was diagnosed with BRCA 1 years ago. My gene “mutation” was no longer a mystery.
One day I’d like a family of my own, which meant fertility injections, egg freezing and induced menopause all before starting treatment ( still experiencing hot flashes and weight gain months later).My run in with ACT chemotherapy, like most, was no walk in the park. I experienced every symptom possible. This aggressive chemo caused extreme fatigue, neuropathy, visual impairments, throat closing, nausea, and the all so infamous hair loss. The list of symptoms goes on ( my chemo is called “The Red Devil” for a reason”). Chemo has caused a lot of outer experiences as well. As painful and dark as this time of my life is, I really know who my people are. I know who is there for my hardest times, who I can count on. This is the biggest gift of all. You learn how to read people and their intentions, even when they don’t always have the right wording.
Following ACT ( which shrunk my tumor massively), I had my double mastectomy this September and I’m in the process of reconstruction. Along with reconstruction, I am taking a preventative chemotherapy known as Capecitabine. Of course, I had severe side effects with this chemo as well and my doctors have to lower my dosage. I will take capecitabine for 6 months ( a short time when you take everything else into perspective). I’ve learned it’s important to listen to your body and to put a spin of humor on things ( my doctors call me a “cheap date” being I’m prone to side effects,lol).
What I’ve truly found difficult about this experience (other than the chemo) is people. My support team is AMAZING, don’t get me wrong! I have people from Queens all the way to Florida supporting me. For some reason, what I find difficult is what people can and cannot understand and what people compare me to. I’m tired of fighting so hard to be compared to someone’s Aunt Lucy who did “just fine on chemotherapy”, or “why can’t you get out of bed? My friend was able to work full-time while she was taking a chemo pill.” Everyone is different and every treatment is different.
What I can say is that it took me a near death experience to learn to be a softer person, to love more deeply, and to know that some people can’t handle your diagnoses but its important to put you first. The body is an amazing thing, be careful of your words, never underestimate love and on the days you think you can’t make it, know that you can.
All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer. If you have a story or experience you would like to share with the cancer community we would love to hear from you! Please submit your idea at https://elephantsandtea.cdn-pi.com/contact/submissions/.