An introduction to chemotherapy

I woke up and realized that it was very very difficult to move. And I realized this was because of the drugs I am taking for the hole in my head. Let me explain, it’s not a real “hole” as it were but a divot left from the apple sized tumor taken from my brain last year. Since then I’ve not been the same. It’s a significant alteration to know that half of one’s month will have to be spent virtually in bed. This is on top of knowing that my life is being measured in months. I try to keep the best sense of humor about it as I can because it’s either incredibly comic or brutally tragic; there is very little area in between. I open my eyes and there’s my lovely wife awake and looking at me.
And she’s holding a cup filled to the brim with pills. Pills to keep me from seizing, pills to keep me from vomiting, pills to keep me shitting, pills to keep my colon from expanding, pills to battle the anxiety my doctors are convinced I always must have, and then a new pill to keep all the other pills down and digesting. On top of all that I will be taking my next dose of chemo (poison) this evening.
These next few weeks it will be difficult to keep moving. The chemotherapy is supposed to be killing the cancer cells in my brain but it also kills the cells in my mouth, digestive system, colon. Makes a mess of my skin, which makes me feel frustrated and stymied that I do not even have control over the hair I have left on my face. I used to pride myself on grooming and the rashes I get now prevent that. Cancer charities don’t give wigs to men with cancer, or even a mustache toupee.
It’s true that today’s chemo is not like the chemo from 30 years ago. It is not the horror story of being stuck on a toilet while holding a bucket exploding from both ends or needing a feeding tube in a hospital bed. But understand it is not a walk in the park either. It’s exhaustion to where gravity itself feels stronger. It’s not that you yourself have gained weight, but that your muscles are so weak and tired you just feel pinned to the bed. It’s so difficult to think and string thoughts together because of the way chemo slows down both my body and brain. Usually the term “chemo brain” stems from exactly this phenomenon. I have heard is described as like walking and thinking through oatmeal; cloudy, muddy, thick. Anything the brain has to process is just slowed and with my memory issues I often can’t even remember what I was pondering or to finish my sentence. I have to take appetite stimulants, but there are times I don’t feel like eating not because I am sick but simply because I just do not have an appetite anymore. Food tastes different to me now than it did before I had cancer and my surgeries. Things I used to love to eat now taste like ashes in my mouth.
Cannabis helps. Initially I was not too keen on having to smoke- I was not a smoker before my cancer. It does relieve the pain and nausea it also gives me an appetite. However, sometimes it can make the thinking and my chemo brain even worse. This is my trade off for the week; eating and surviving and not losing weight at the sacrifice of not being able to think. For me, it’s worth it.
I’d really like to survive far longer than statistics say I should. I live my life not knowing if there will be a tomorrow but still planning for some future.
There are some upsides as well, I have this concentrated time to spend with my wife and getting to pursue some of my more sedentary hobbies. We lost a lot of time when I got sick very shortly after our wedding. Is it that much of a tragedy though if I am happy I have her love and support to get through this?
Tonight long after dinner but still before bed I will take my next dose of chemotherapy. Tomorrow morning I will expect to feel worse, but still alive.

By Tashi

I am a mid-twenties former student - formerly a full-time caregiver for my husband 'Wash' who had Glioblastoma Multiforme - End stage brain cancer. He passed away in Sept 2012 one month after his 28th birthday. I have a medical anthropological background and was diagnosed with Asperger's Syndrome as an adult in 2006. My husband was in college for Architecture studies before he withdrew due to the cancer. I am a Humanist and a very large nerd. Wash identified as a geek. I have been in the alternative scene for a period in my life and have had over 70 piercings. I have also held a long term job working with Real Estate agents. Both my husband and I are supporters of legalizing Medical Cannabis. Home is in the Valley of the Sun, Arizona with our two cats.

5 replies on “An introduction to chemotherapy”

I second what Allison said! There are lots of us all over who love you and Tashi, and think of you every day and are silently trying to send you our strength. Keep writing, when you can. Share as much of yourself with us as you can. We would lift you of your burdens if we could. I am thrilled that you and Tashi have each other, partners in crime, to sustain each other through this bumpy ride. Rest well, and know that you are loved, good sir!

– Rose and Rascal in Seattle
aka FunChefChick
aka ZenHappy
aka “has far too many internet handles”

Wash- you don’t know me, but I met Tashi on Jezebel. You have people all over the world thinking about you and wishing you both well. I have a condition that causes a lot of the same symptoms you’re experiencing, and I know well how heavy gravity can feel sometimes. I’ll be thinking about you this evening, and I hope that this round goes as well as it can.
Allison from Hawaii

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