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[cancer] An abbreviated user's guide to the chemotherapy experience - Lakeshore
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Jay Lake
Date: 2010-07-02 05:12
Subject: [cancer] An abbreviated user's guide to the chemotherapy experience
Security: Public
Tags:calendula, cancer, health, personal, shellyrae
[cancer] An interim summary of the chemo experience

In the course of this week I have written email to several people about cancer, chemo and surviving the experience. It occurred to me in working on those emails that I am now in the process of integrating the chemotherapy experience into some coherent narrative for my own emotional purposes. Following I present a very abbreviated user's guide to the chemotherapy experience, drawn from those emails with permission of my correspondents.

For me, chemo has been characterized by several basics. The one I miraculously avoided is nausea. Apparently either the drugs worked or I have a cast-iron upper GI.

However, the disruption to my lower GI was incredible. You'll want to be prepared for that. It comes on slowly, but eventually becomes nigh overwhelming.

Likewise the fatigue. The first month or so, I was doing alright, but around month three I was worn down all the time, and by month four I was in pretty much permanent collapse. I would tell people that I woke up every day for six months feeling like I'd just gotten over a terrible flu. As it happens, I work at home in both my day job and as a writer, but I would not have been able to commute after the first four months. I haven't even driven a car since early May, due to slowed reaction times and reduced attention span/situational awareness. So if you work in a location other than home, I'd be prepared for that, as well, and make arrangements for work-at-home later in the chemo process.

Cognitive side effects are a stone bitch as well. I experienced lacunae in both short-term and long-term memory, dyscalculia, loss of focus, and later on in chemo, a near collapse stereotypical right brain function. My analytical thinking skills remained strong, though I had to take a lot more notes and use spreadsheets for things I'd normally do in my head.

Another thing I did from the very beginning was track my chemo side effects carefully. That was me looking for trends and issues. I eventually identified about 30 issues, which I brought as a spreadsheet to every pre-chemo oncologist consult. That was useful for me to know how I was changing, and my oncologist appreciated it as well. As my memory eroded during chemo (many of the side effects were cognitive), the tracking spreadsheet meant I didn't have to rely on that iffy memory to brief the oncologist on my progress and issues. I strongly suggest you use a similar technique, whatever works for you.

The final thing I would want to share with you is that in my opinion, cancer is a social disease. It affects your friends and loved ones, and even people you might expect. My mother wound up hospitalized with health problems incited by her stress over my illness. More to the point, people are going to try very hard to hide the weirdness and fear they feel. One of the things I had to keep reminding people of was, in effect, "just because I have cancer doesn't mean that your [flu/flat tire/bad day at work] doesn't still suck a lot for you." Getting people not to treat me like I was made of china was good for everyone involved.

This is manageable and survivable, but it will be one of the hardest things you'll ever do. For myself, not having ever been severely injured, chronically ill or given birth, chemotherapy ranks right up with overcoming long-term clinical depression as the hardest thing I've ever done mentally and emotionally, and takes first prize as the physically hardest thing I've ever done.


I want to add that having a close, loving family, and thoughtful, dedicated caregivers, as I did with calendula_witch and shelly_rae, is perhaps the most important part of surviving chemo in one piece physically, mentally and emotionally.

For whatever it's worth, these last few days once the lower GI storm had passed have been the best I've experienced in months. I'm hitting the recovery curve. Which is to say, objectively I still feel like stewed boots, but it's a better class of stewed boots, I'm getting an extra hour or two a day of energy already, my mind is more clear, and I'm a damned sight happier to be visibly on the mend.

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