This is probably stupid, but I don't want to tell people until the problem is past, until I know the resolution. Only when we're well into the treatment cycle do I have the confidence to inform most people. I will eventually write a note to everyone saying that I'll be out completely for a couple months. However, to this point, I've missed less than two weeks of work, so it's not obvious that anything serious is going on. No one but my wife knows anything for weeks and weeks. I don't even tell my brother until just before the first surgery. And then we have guests coming in from out of town for a long weekend at a point when I'm really in bad shape, so I have to tell them why we won't be partying. And I finally tell the rest of the family when I'm about halfway through the treatments. I'm not sure why I am so reluctant to tell people about my problem, but I am. I think I missed out on a lot of support that friends and family could have provided. I don't recommend my strategy for anyone else.
Before I forget, I also have to give an A+ to my boss, my company, the HR department, and their health insurance manager. The bureaucratic and paperwork aspects of the whole disease and treatment were as painless as possible. This is a wonderful thing.
Side Effects of Chemo
The mitomycin makes me green at the gills for two or three days. Mild anti-nausea drugs take care of the problem for that first week. The 5FU is a different story entirely. One of the possible side effects is mouth sores, ulcers actually, stomatitis, and I got it. The drug finished pumping in Friday afternoon. Saturday my mouth was a little sensitive. Saturday night, we went out to dinner and I couldn't eat the wasabi mashed potatoes, which normally I would love. On Monday there are white sores on my tongue. By Tuesday afternoon the pain is terrible.
I can't eat anything solid, and I can't even drink much, not even though a straw. Whatever does go down has to be cold or tepid. Warm feels soothing at first but burns later. Ms. T becomes an expert at pureed drinks and soups. Everything has to go through a straw and be swallowable in the center of the mouth without touching the cheeks or tongue. Take some chicken soup and puree a chicken breast into it. Broccoli soup and broccoli. Soup with salmon puree. Cold smoothies. Milkshakes on the way home from radiation treatments in the morning. It's not enough. In that first week, I lose twelve pounds from Monday to Friday and become seriously dehydrated. The radiation doctor advises me to get more fluids. Back to the chemo room for a liter of saline. Boy, that port-a-cath is really useful. No searching for a dehydrated vein to insert the IV into, just one little punch in the shoulder and it's in.
There are drugs, too, two special mouth rinses and a fungicide to suppress possible yeast infections in the mouth. They soothe a little but not enough. I need large doses of morphine (liquid, oral) to get through the day. I stay on the morphine for a week until the pain is down to a tolerable level, but it still doesn't go away completely for three or four more days.
One unexpected benefit is that I continue losing weight simply because I'm not awake for much of the time. And I can't eat real meals. I have a couple snacks during the day, but that's about it. Aside: Over the course of the treatment, I lose thirty pounds, and I keep it off. I don't recommend it as a diet regimen, however.
Something else strange that first week: hiccups. I never, ever get hiccups. Okay, maybe once every five years or so, I will hiccup for two minutes. On the second day of chemo, it happens a half hour after lunch and lasted for five minutes or more. The next day, it expands to dinner, too, and it lasts for a week.
And then there's the hair loss. I lose two-thirds of my hair over the first three weeks; my moustache, too. I take pictures of my hairbrush filled with hair. Eventually it all grows back, but a slightly different shape with waves where it used to be straight. As they say,
chemo's job is to kill you, specifically to kill the fast-growing cells, which includes the cancer but also includes a lot of the rest of the body.
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