I’m still sorting out the details of my new lifestyle, which started on March 1, 2018. Prior to that date, I didn’t have cancer. At least, I didn’t know about it and didn’t consider it a possibility.
Specifically, I have endometrial/uterine cancer. Even more specifically, I have endometrial adenocarcinoma. Endometrial and uterine seem to be interchangeable. They sort of are, I guess.
From March 1 through April 9, I went from diagnosis, to consult, to hormone therapy, to CT scans, to surgery (radical hysterectomy and lymph node dissection). What started out as a two centimeter, FIGO grade 2-3 tumor, turned into a two centimeter, FIGO grade 2 tumor after surgery. The final pathology I received on May 3, 2018, shows cancer cells in my blood vessels; and a tumor that was five-plus centimeters and FIGO grade 3 (most aggressive). And yet, my cancer is Stage IA (almost as good as it gets—one location, no spread). The irony isn’t lost on me.
I need radiation to reduce the chance of recurrence (see above for the three high-risk factors) from 12-15% to 6%. The research I’ve done on cisplatin (chemotherapy treatment) suggests that it is best taken off the table and left on the fence where my gynecologic oncologist put it. I haven’t gotten a third and fourth opinion from the radiation and medical oncologists yet. Based on my research of endometrial cancer, the prognosis is poor with recurrence.
In starting my new lifestyle, I’ve also learned over the last two months:
The healthcare system is indifferent. It cares about patients when they are in front of a doctor. Otherwise, people fall through the cracks like sawdust on a shed floor. That’s not to say all doctors are detached. Some are caring, supportive and available, like my primary care physician. However, if I hadn’t advocated for myself as strongly as I did, I’d still be waiting for surgery, and closer to dying from cancer.
I do not refer to cancer by anything other than its name. It’s not the “Big C,” and I’m not at war, fighting or otherwise battling this disease. It doesn’t suck and I don’t hate it. My body made this when cells decided to live instead of die. As one with a rebellious nature, I have a begrudging admiration for these cells, while being displeased with their behavior. I will eradicate them if I can.
I measure life in terms of quality, not quantity. This became clear when I filled out and signed my advanced directive. It was validated again when I researched cisplatin (kidney damage and hearing loss are two of the potential lifetime side-effects). I’d rather live 10-20 fantastic years than 20-40 years where I feel awful all of the time. This is non-negotiable.
Most people have a hard time talking about death and disease, and are unable to be “authentic” when these subjects come into conversation. People also feel like they need to say something, anything. I find all of this sad and distressing.
One day, I am going to die. It may be from cancer, it may be from something completely unrelated. I continue to not know how or when my life will end. I spent a lot of time making preparations for my death prior to surgery. I will continue to make more plans until I am done.
I need to come to terms with having cancer. Once it shows up in the body, it doesn’t leave. There is cancer-symptomatic and cancer-asymptomatic. Cancer-free will never exist for me. Once I create an alliance with this fact, I think I can move forward with living. At first, I thought I needed to make peace with dying, but that seems to bother me less than being diseased.
Life is challenging, painful and ugly; it is also amazing, precious and beautiful. I am invested in living, and living well. Over the next few months, I will be reprioritizing my life and treating it as if it could end at any moment.
I am still learning and adjusting to my new life circumstances. The surrealness has started to disappear and is slowly being replaced by reality. I don’t know where this journey is taking me beyond the next few months, although, that is always true, regardless of the situation. And as I’ve learned, radical change is only a doctor’s visit away.
I don’t share this information to make anyone sad, angry, sympathetic, empathetic, whatever. This, as most of my writing, is my catharsis. If it helps or interests someone else, so much the better.