A Patient's Journal with CLL

Townsend Letter for Doctors and Patients, August, 2001 by Andrew Schorr

While I was waiting to square away the billing I met a neat older gentleman, a CML patient from Pittsburgh. I think his name is Marco. He has been treated with Interferon injections for several years and now, like most CML patients, he is in the trial using a new pill developed by Dr. Brian Druker in Portland, Oregon. He's doing okay, but not great since he has some "blast" cells that may not respond. Even so, he -- like most people I've met here -- is really quite upbeat. Marco told me the story of coming to Houston for a checkup some time ago expecting to be in town for five days and instead he was here for three months! He had gotten pneumonia. Marco said he bought some clothes and took it all in stride and his insurance covered everything. After Monica got my billing record squared away I stopped back in the waiting room to wish Marco well.

It was back to the lab and another one of those "world's fastest blood draws." It wasn't long before I found myself back in the bed unit getting my second infusion of Fludara and Cytoxan. Once again, it was a pretty straightforward three-hour episode with no significant side effects. Nurse Christine thought it would be a good idea to leave with a prescription for anti-nausea medication, which I happily filled. There wasn't a lot of anxiety this late afternoon. The familiarity of the procedures was helpful, but I am eager to get this over with and go home.

Days Five and Six - August 25 & 26, 2000

Weird. One day you feel great. The next day someone pulls your plug. Day five wasn't a bad day, just not a high energy one. To be expected, I guess. And this was an important day with a follow-up appointment with Dr. Keating. Would I be "on track" for a long-term remission? Is the chemotherapy working?

At noon, in Keating's exam room came the answers: "Yes," and "too soon to tell." Yes, that the treatment was having a positive effect, but too soon to tell how the whole show will play out. I took "so far so good" to be good enough, for now. Outside in the waiting room and down the halls are so many, many people sicker than I am. We CLLers really are lucky among so many cancer patients. Sure, nobody would pick this disease and, at least from a historical perspective, it is terminal. But just maybe I am part of re-writing those not so old books that say how much CLL shortens your life. Maybe I'm part of a new vanguard of patients who can help stop the clock of cancer -- while treasuring every day with the knowledge of what's really important.

So it was on to treatment #4 (the third day of Fludara followed by Cytoxan). And, once again, it was no big deal. Once again Nurse Kristina (one year out of nursing school from the Philippines) was a delight. By 7:30 p.m., after about three-and-a-half hours, we were on our way. Maybe because of all this talk about blood levels, I had an appetite for the unthinkable -- a steak! I have hardly eaten red meat in 25 years, but tonight it sounded good. Esther was pleased I had a big appetite.