A ten point update
I am not as special as I thought I was
One: Hello from Houston, TX! Where I am sitting in a motel room after an appointment at MD Anderson — the top rated cancer hospital in the United States. Just a couple of weeks ago, I was in New York for an appointment at Memorial Sloan Kettering, which is the second top rated cancer hospital in the United States.
Two: I wanted more information before making a decision about my remaining treatment, and I wanted to give myself the gift of getting the best information possible. I struggled with the decision to travel for more opinions — it seemed indulgent, and I know it is only with great privilege that these trips have been possible. But what good is not giving myself the chance to live as long as I can, and continue to use my voice to speak up for those whose voices are minimized? So I gave myself permission to make the time and effort to make these trips.
Three: And these trips were not in vain. I learned a lot of important and crucial information that make me feel like I can make a decision with as much confidence as possible. I hoped and I wished that one of these doctors would walk into the exam room and reveal their super secret miraculous instant cure for cancer, and while that — of course — did not happen, I feel a lot more optimistic about my longterm survival.
Four: The first major piece of information is this: MD Anderson conducted their own pathology report of the slides created following my surgery. The findings reveal that the residual disease contained fewer than 20% metaplastic cells, and mostly presented and behaved like triple negative breast cancer. This means I have a slightly better prognosis, but I am still on the hook, especially within the next three years when triple negative breast cancer is most likely to recur as something largely untreatable. Regardless, I am not as 1% as I originally believed — I’m more like 20% special.
Five: There is hope. At Memorial Sloan Kettering I learned of a clinical trial treating triple negative breast cancer patients with enzalutamide — an anti-androgen that’s been used to treat prostate cancer patients. Let me explain: Most breast cancers are estrogen driven, and to prevent recurrence, patients with hormone receptive cancers are given anti-estrogen therapy for ten to fifteen years after initial treatment. My cancer presented none of these typical hormone receptors, which is why it’s triple negative. However, new research demonstrates that some triple negative breast cancers contain androgen receptors, and the trial at Memorial Sloan Kettering operates on the same notion as traditional hormonal breast cancer treatments.
Six: A more seemingly controversial treatment option is capecitabine. Capecitabine is an oral chemotherapy that recent research suggests may increase the disease free survival rate of triple negative breast cancer — in specifically Asian patients. You see, the trial was conducted in Asia, and so no one really knows if it will help me. However, all doctors agreed that it is not unreasonable to pursue this treatment, but neither the doctor at Memorial Sloan Kettering nor the doctor at MD Anderson recommended the treatment. It is my oncologist at UCSF who is recommending this medication.
Seven: I can do both if I choose to. This is the choice I am leaning toward.
Eight: I don’t want to thank cancer for anything, but this ordeal has revealed certain truths about myself to me. Among them is how badly I really do want to be alive. To sit — altogether — almost twenty hours on airplanes when I absolutely hate flying, to spend a month calling hospitals in different time zones and coordinating the laborious movement of my medical records to and from just to get an hour of a doctor’s time, to sleep in this cheap motel room where I was visited by a cockroach this morning, to choose to undergo more treatment with only a scant chance of any of these medications actually working … I want to live. I want to live so badly.
Nine: And I continue to live. I am about two months out of surgery, and I’ve almost completely forgotten about it. A little while ago, I called my mother to update her, and told her about going for a run on the beach. My mother said, “Did you wear enough support?” To which I replied, “Oh yeah, I have really good running shoes — oh, you mean support for my boobs.” I’m alive — you know? And maybe I’ve lived more since my diagnosis in February than I have in thirty-one years. I am in love — oh, I am so in love. I feel surrounded with friendship and family. I continue to grow at my job. I got to read at LitCrawl — a prominent literary event in San Francisco. In New York, I finally visited the Natural History Museum and walked through Central Park, ate a New York bagel and a New York slice of pizza. Now I am in Houston, and tomorrow I am planning on driving to Austin and eating barbecue and peach cobbler, walking around and seeing just how weird Austin really is. In the parallel universe where I don’t have cancer, I might still be hesitating to buy the plane tickets, waiting for just the right time to travel. In this universe — the universe in which I have cancer — it was never not the right time to buy those plane tickets.
Ten: So actually, maybe it’s not a “Thank you” I owe cancer. It’s a “Fuck you, cancer — fuck you, I’m still getting mine despite you.”
I am a thirty-one year old queer Hispanic woman and trauma survivor battling a rare and aggressive form of breast cancer. Devoted to social justice and advocating for mental health understanding and resources, I was just six months into my new career as a backend software engineer trying to make space for marginalized people in tech when I was struck with Stage IIa Grade 3 triple negative metaplastic breast cancer. You can read more about my journey in my publication Never Tell Me the Odds.
If you enjoy my writing and you are able to, please consider donating to my medical expense crowdfunder. I’ve got a yearlong treatment plan ahead of me, and I need all the help I can get. Thank you so much for your generosity.
