Update on husband - in need of positive energy

campion, I tried to PM you but it said you couldn’t receive messages. Anyway, wow, your post told me so much. I am a nurse but relatively unschooled about interferon. I was afraid it was bad, in fact there is an online community of people with help C who agree that the cure is worse than the disease. I can’t tell him what to do but I wish he would read your post. Maybe in a little while I will show it to him. He is in deep denial and feels that he will continue to teach full time during the entire treatment. I feel this is not plausible, especially the first month when he gets interferon 5x/week. Whew. We have been separated for awhile but remained good friends and never filed for divorce. He seems to want to reminisce about our life now, as if he thinks his time is short. I am definitely going to find a support group. I am bipolar and go to therapy weekly but it’s not enough. Thanks again, I really appreciate your honesty.

Thanks to all for the posts, info, suggestions and support.

Good vibes and all kinds of other goodness coming to you and your husband!

Some of the fatigue, if I understand it right, comes from the fact that chemo kills off your new blood cells (since they are fast-growing cells and fast-growing cells are what chemo targets). I’m sure this is a massive oversimplification, by the way. But that means that the things your new blood cells are supposed to do doesn’t get done very well, including transport fuel and oxygen around to your other cells. There are shots you can get or give yourself that specifically boost blood cell production – the name of the one I used is escaping me but who knows whether they would use some other brand with your husband anyway. Point being that if you (generic you) admit to your doctor that you’re experiencing serious fatigue, he or she may be able to help.

Another factor that contributes to fatigue is loss of appetite from a) feeling barfy and b) things tasting wrong. Again, if you are clear with your doctor that nausea is a problem, there are LOTS of great drugs they can give you to help, but you do have to be clear with the doctor. Some of the best anti-nausea drugs won’t be covered by insurance until you’ve already tried the cheaper ones and not been helped enough, and the docs know that, so they start you on the less expensive ones (that incidentally DO work for a lot of people) and wait for you to tell them how you feel. As for things tasting wrong – it can take some experimenting to figure out what tastes good to you during chemo. Chances are good that some things you love will taste terrible and some things you would never usually touch taste great. Other things you ordinarily love only taste “right” if you salt them much more or much less, or adjust their sourness, bitterness, or sweetness. Soups can be particularly useful since it’s easy to adjust them – I got maybe 50% of my calories during my last round of chemo from homemade borscht, which is easy to adjust by adding more or less vinegar, or less bitter by peeling all the veggies and choosing stuff like baby carrots to start with, or sweeter by adding some sugar, etc. I had this strong taste of soap in my mouth (not unusual, though I hear metallic is a little more common) and a double dose of vinegar in the broth made all the difference for me.

If you guys are not living together, it might be a good idea to scope out places to pick up take-out food that he might like that would be on your way to visit him. Like I said, I liked soups the best, and there was a Thai place that made a coconut-chicken soup and a Greek place that made a lentil soup that always tasted good to me… “I picked you up some goodies” is sometimes easier to hear than “Let me stay and cook for you” if you’re having a bad day. And if he needs to be alone, you can just drop it off, chat for five minutes, and go; on the other hand if he’s feeling up for company, you can stay.

If your husband is bound and determined that he’s going to work full-time the whole time, you might be able to help him by talking about backup plans for if he has to cut back, say, one of his teaching days a week – if the schedule at the chemo clinic gets messed up, for instance, which isn’t that unusual. Just thinking through a contingency plan now might make it easier for him to let more of his work go if chemo does a number on him as he gets a week or two into it.

Yeah, it may be better to talk to him about contingency plans – have his doctor prescribe a wheelchair early and see if you can get a motorized one (we didn’t, because there was always someone to push sis’s wheelchair, but he may not have that). I also have vivid memories of being in Target with my sis when the nausea/diarrhea hit her, and nearly having to run to the restroom with her. So make sure he has a plan for how to get to the bathroom during class.

Agreed – my sis went through three or four anti-nausea drugs, none of which worked really well (one worked, but the side effect was debilitating migraines, so…)

Agree on the food as well. She ate because she knew she had to; we tried to keep food in front of her for snacking all the time, just to get enough calories in her. There was a curried zucchini soup she liked, and sourdough toast. Beyond that, she ate what she had to because we forced her to.

For water, we’d squeeze about half a lemon in a glass of water. That much lemon disguised the metallic taste sufficiently that she could get the water down. Frankly, though, if she hadn’t had a full-time nag forcing her to eat and drink, she wouldn’t have lasted as long with the interferon as she did. Good luck.