Tuesday, March 07, 2006

Getting back to good health -- a note from home

The nausea never did go away, but I did learn to take my medication regularly and to ask for more when I needed it.

My counts came up very quickly and the nurses and doctors let me go home on President's Day -- the 20th of February. So I have been home for 2 weeks now. The first 10 days were kind of tough. I could not get over the nausea, and I did not have the advantage of intravenous (quick acting and really powerful) anti-nausea medicine. I tried for the first few days to just ignore it -- distracting myself with cable television and sleep. That did not work and I was becoming more and more miserable. Then I started taking ativan tablets which did help a lot, but to keep the nausea away I had to sleep most of the time. I asked for different meds and tried three before finding a set that worked without knocking me out.

Late last week, I quit taking the anti-nausea drugs and now only take a medicine that keeps my stomach acid level low. As long as I eat good food in small portions, I am doing just fine. Overall in fact, I am feeling really good.

I do not have a tremendous amount of energy. I can go out for an hour long walk or a couple hours of light errands -- grocery shopping, post office, bank and so on -- then I get tired and head home. I am becoming a terrible couch potato, but that is about what I have energy for right now. People who talk with me on the phone have said I sound really healthy again and that makes me feel good. I am sure that the more active I am, the sooner I will get back to full strength.

The hard thing for me to keep in mind is that I no longer have my old immune system. That died on the seventh of February. All my body's 'memory' of chicken pox, mumps, and all the colds and fevers it learned throughout my life are gone. So I have to keep that in mind. If I get sick, it will be more serious and take longer to recover than it used to just a few months ago. A year after my transplant, they will offer me the inoculations against the childhood diseases again. Until then I just have to be careful!

Next steps
My transplant team has advised me to undergo another transplant. It would be either from my own cells or from one of my two brothers. We are all being tested for tissue compatibility and will have results in a week or so. Whichever I would get would mean another session in the hospital and another tough recovery. But my doctors have told me that they feel I came through the first transplant so well (I didn't see any of them puking!). So they feel that I really ought to treat the cancer as aggressively as possible right now.

It is tough to think about and either path. Both have lots of considerations and complications. I will try to post a bit more regularly to keep you in the picture.

Please Note
Comments posted here get sent to me via email!