June 23, 2015
Preparing for chemo and radiation is weird. Having cancer is weird. Telling people you have cancer is weird. But is it so much stranger than the first day of kindergarten or true first anything? No. I don’t imagine it is, but I don’t remember those things, and with cancer everyone around you is frequently breaking into tears or smiling so hard you think they’ll hurt themselves. Probably much like that first day of kindergarten.
I tried to tie up loose ends. Working as a contractor made putting my job on hold relatively simple, my roommate made leaving home for 6 weeks relatively simple, and my parents and friends made everything else relatively simple. We rented an apartment, set up a care calendar of friends and family rotating in and out to keep me entertained, fed and safe, and I dove into treatment. I’ve never been more present than those weeks of preparing for and beginning treatment. Before this so many hours of the day were spent planning the next vacation or night out with friends, which was pretty much every night, but the more I learned about my rectal cancer the less I looked ahead or behind. Tomorrow is still a mystery and yesterday is so far gone it’s prehistoric.
I began my chemo and radiation on June 23, 2015 with very little idea of what to expect. Per my doctors, radiation would be fine in the beginning, then give me the equivalent of a massively destructive sunburn to my “undercarriage.” I would eventually feel fatigued and experience drainage, and most probably be thrown into early menopause. In the long term my bone density would be affected with a high probability of spontaneous pelvic/hip fractures by the time I’m 70 and my reproductive organs damaged. So far I haven’t had a period since June 23, 2015…the day I began treatment. Everyday I had radiation I also took 3000mg of Xeloda, 1500mg in the morning and 1500mg in the evening. My medical oncologist didn’t expect hair loss or massive weight loss, and told me to expect a relatively good response to treatment due to my age and general fitness level. Some of the traditional side effects still applied: nausea, fatigue, hand/foot syndrome, mouth sores. Happily I avoided the hand/foot syndrome and mouth sores. Always be grateful for the side effects you don’t experience.
Walking through a cancer center is a lesson in perspective. No matter how bad you think you have it, you don’t have it THAT bad. Or at least I didn’t. My cancer won’t kill me. The biggest risk is infection or surgical complications, and, spoiler alert, I might not have to have surgery (fingers crossed). More than one of my friends who came to visit commented on the fact that the patients at MD Anderson all looked shell-shocked. We are shell-shocked. We are being destroyed to survive, and for many, many people survival isn’t expected. What I saw and still feel overwhelmingly, is that under those circumstances human kindness overflows. Children with shaved heads and IV’s in their arms run through the halls laughing, adults in wheelchairs grimace from pain but smile as you walk past, and people are gentle with each other. I’ve never experienced such compassion, and I’m quite sure I’ve never been so emotionally raw and quite so tough. Yet.
My first 4 weeks of treatment were excellent, and I think it was because of the following:
—Water: I drank lots and lots of water. Tons of water. Oodles and gobs of water. Staying hydrated not only assist with headaches and nausea, but it made blood draws way easier. First stick every time. Since you wind up looking like a junkie eventually, having fewer needle marks is an aesthetic plus.
—Protein: The word “protein” comes from the Greek root “of first importance.” Of course you’re not hungry. You’re traumatized and probably feel kind of crummy. However, protein is necessary for cellular regeneration and maintaining red and white blood cell counts. My nutritionist and radiation oncologist loved me for maintaining good albumin levels and weight within 2lbs of my starting point during treatment. Radiation is math and if you lose too much weight the math of your body changes. I also had the great fortune of having lots of people around me shoving protein “treats” in my face every time I turned around. Sometimes it made me cranky, but it definitely helped.
—Exercise: I walked most days and continued with my Pilates practice at least twice weekly all the way through treatment. Since exercise is a regular part of my life, this kept me feeling at least somewhat healthy in the midst of other parts of my new daily routine indicating otherwise. Exercise releases endorphins, helps clear the brain, and I have a particular theory that it helps more evenly distribute the chemo throughout your system and keeps it from pooling in muscle. I walked up until my vagina was so swollen that I had the gait of a cowboy and the pain was so bad that I hobbled like a 90 y/o woman, but I kept up restorative Pilates the entire time.
—Friends and Family: I love them. I love those irreverent, beautiful, kind, glowing, bossy, hysterical people more than I could possibly express in this lifetime, and I keep them close. The revolving door on my apartment kept them coming and going in a very tightly knit schedule of visitors. And we had fun. Mostly. Museums, movies, shopping, restaurants, cooking, television, Thai massage. They also went to radiation and doctors appointments with me. When things got bad we sat on the couch and watched hours of Penny Dreadful and they made sure I ate and drank. They were advocates when I saw doctors and sentinels at the height of my pain. I will say again and again, that fear cannot thrive where so much love grows.
Six weeks passed. Time does that, continues moving forward when you think it should be standing still. The last 2 weeks the pain, nausea and insomnia came. It was relentless and worsened everyday up until my last day of treatment, when all I wanted was to be put in a coma from the waist down (they can’t do that, btw). Thank you for hydrocodone, ambien, butt paste and cannabis. Thank you to my medical professionals who responded quickly and compassionately to my growing needs. And thank you for all f*#cked up comments made by friends…without laughter I might have become bitter, and there’s no time for that.