May 12, 2003|<\/p>\n
Long Time No Write<\/b><\/p>\n
When I last wrote about being tired and fatigued, I wasn\u2019t joking. It\u2019s not like I\u2019m 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\u2019t really done much. I\u2019ve been at home most of the time, too tired to go anywhere or do anything. It\u2019s hard to read without falling asleep. So that\u2019s 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\u2019m sick. <\/p>\n
I\u2019m not used to this feeling. I just don\u2019t have the energy to finish up emails or return phone calls. I know it\u2019s 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\u2019t want to complain here, just want to let you know why you haven\u2019t heard from me. <\/p>\n
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\u2019t harm me, but wouldn\u2019t 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\u2019s no guarantee that it\u2019ll work or even relief my symptoms, but it could be curative, which is what I\u2019m looking for. It was so last minute we told very few people. We started immediately. <\/p>\n
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. <\/p>\n
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\u2019s cells- CD 30. It\u2019s merely an IV drug that is infused over an hour and a half. <\/p>\n
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\u2019s always going wrong with my body nowadays. I\u2019m sick. <\/p>\n
So that\u2019s where I\u2019ve been. Don\u2019t 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.<\/p>\n
\n","protected":false},"excerpt":{"rendered":"
May 12, 2003| Long Time No Write When I last wrote about being tired and fatigued, I wasn\u2019t joking. It\u2019s not like I\u2019m 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\u2019t really done much. I\u2019ve been at home … Continue reading Long Time No Write<\/span>