Long Time No Write

May 12, 2003|

Long Time No Write

When I last wrote about being tired and fatigued, I wasn’t joking. It’s not like I’m quite better now. I realized I needed to get something out there on the page showing that I am somewhat OK and functional. I haven’t really done much. I’ve been at home most of the time, too tired to go anywhere or do anything. It’s hard to read without falling asleep. So that’s out of the question. I sleep and nap a lot. At night I watch TV to keep me occupied. I really am sick I concluded a few weeks ago. This is what sick is. Having your parents take care of you, doing very little, losing appetite, general tiredness- I’m sick.

I’m not used to this feeling. I just don’t have the energy to finish up emails or return phone calls. I know it’s common courtesy, but it takes me twice as much to muster up doing an activity. Sometimes I have windows of opportunity where I can get stuff done with a rare burst of energy, but rarely. I don’t want to complain here, just want to let you know why you haven’t heard from me.

A lot has changed last minute also. I am undergoing a Phase I/II trial at Sloan right now. It started three weeks ago. We were about to start doing a new chemotherapy regimen, one that wouldn’t harm me, but wouldn’t heal me. It would only help my quality of life and make me feel better. Just as we are about to start it, the day before an opening appeared in this trial so we jump at it. There’s no guarantee that it’ll work or even relief my symptoms, but it could be curative, which is what I’m looking for. It was so last minute we told very few people. We started immediately.

Once a week, my father and I drive to Sloan Kettering for two days. We drive, I get the drug, we eat dinner, sleep, and drive back to Ohio the next morning. This week, same thing. Next week is our follow-up appointment and after that we have a month off to see what happens.

The drug is similar to the one I wrote about before in January or February, a monoclonal antibody that targets just the cancer cells- specifically the Hodkgin’s cells- CD 30. It’s merely an IV drug that is infused over an hour and a half.

In between receiving this drug I have gotten numerous transfusions to help my energy level in New York and in Youngstown. Give blood! I was admitted for a weekend at a hospital here in Youngstown for dehydration and increased calcium, which could be deadly. Something’s always going wrong with my body nowadays. I’m sick.

So that’s where I’ve been. Don’t do much. Travel for a few days. Rest and recover and wait. Maybe this one will be the drug that saves me. Sorry for not writing sooner. I apologize for not writing you back. Please give me grace.