A Patient's Journal with CLL

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

Now the above is my journalistic recounting of the days' events. But I wanted to share a couple of observations:

1. Everywhere we go here at M.D. Anderson we see cancer patients accompanied by loved ones. I met a man last night who has spent 8 weeks here -- living in a hotel with his wife -- and escorting her to daily treatments. These people -- like Esther -- are saints. We really could not get through this without them.

2. The power of the Internet in bringing people together who share a common health concern is amazing. So far in Houston I have seen two patients I know from the CLL listserv and spoken with three more. This connection we have made in reaching out to one another makes a tremendous difference, and I am grateful to so many who have been' of such support to me and Esther as I begin treatment.

3. It is finally hitting me that I have crossed a line to become someone "in treatment." After four-and-a-half years of "watch and wait" (and watch and worry), I am seeing powerful and toxic drugs drip into my veins. No one can predict the results, nor the future -- doctors can only say what they expect will happen to most people. So it's even more a time for uncertainty and hope. But it does feel good to be doing something. Hopefully Dr. Keating is right and it will not "upset the applecart" of my generally good quality of life up till now, and give me back an extended future. It's an adventure for sure!

Day Four - August 24, 2000

I feel like I work here! I know my way around quite well. The nurses know me, some technicians know me. I bump into Dr. Keating in the hallways - he's pleased with my counts. So my nature is to try to take control and turn this "un-vacation" in Houston into a positive stay, minute by minute.

I slept late and felt really strong. Michael Pearlman, whom I see everyday when he comes in for treatment with Campath, thinks I may be overdoing it. Esther tells him it's my way of coping. Esther and I had lunch with Beverly from Colorado and her husband Sam. Once again this was another CLLer I met via the Internet on the CLL list and we coordinated our meeting via email once we realized we'd both be at the M.D. Anderson leukemia clinic at the same time.

Beverly is still untreated and doing well. She's grappling with the issues of what to do with diet and mental attitude while trying to keep the worry at bay. Talking to other CLLers seems to help her, as it does most people. She wanted to meet Michael even while he was getting more aggressive treatment. I told her that may very well not be what's in store for her or me since the disease is variable and, as Michael says, what we call CLL is probably several different diseases and not just one.

By mid-afternoon I signed in for my blood test but was redirected to another floor to see a financial counselor. My account had been blocked. It turned out to be a miscommunication. They did not have my new insurance plan entered in my record and, of course, when they called the old company that no longer covers me those folks said "No way" were they paying any M.D. Anderson bills for Andrew. So a little time and the display of new insurance cards with Monica in Patient Services settled the whole thing. Insurance can be a real pain and this was really a minor blip.