Tuesday, April 22, 2008

The Good Doctor

Today I participated (listened) in to a live audio presentation from a professor of medicine/hematologist/oncologist from the University of Pennsylvania Medical School. The program was about stem cell transplants in the era of new drug therapies and was sponsored by the Leukemia and Lymphoma Society. Without going into the details of the presentation, let me say that there was nothing that I hadn't already talked about with Dr. Rifkin. In fact, a number of the new drug combinations were referred as still being in trials, with results not yet known. I have already been through at least 2 of these trials (the revlimid/velcade/dex combo) and my current maintenance regime. Maintenance regimes are still considered quite novel. Not that I needed reminding but, my doctor is very very good. He is on top of the latest drug trials and has me on the cutting edge of new therapies.

I saw Rifkin on Monday, as a follow up to my pneumonia. The testing actually showed I had influenza 3 with pneumonia. I'm still hacking but definitely feel I'm on the mend. We decided I could handle the chemo this week, so they shot me up with velcade. Some might call it kicking a guy when he's down, but I'm handling it OK. Anyway, I asked Rifkin what was up with his partners who seemed intent on having a plan for me, most likely involving transplant. Rifkin was respectful, but let me know he doesn't think that way and that he has a number of patients who have been on drug therapy for years. His view being that as long as the numbers are holding there is no reason to subject the patient to the trauma of a transplant. He said we could discuss it further at our next visit in a couple of weeks. I am content with where we are and continue to be very grateful that I landed as one of Rifkin's patients. There is a bit of luck in much of what happens to us in this life, no doubt.

Susan returned from Paris tonight, having spent the last 12 days with our friends Sigun and Joe. She had a fabulous time and has become quite comfortable in the City of Light. Sigun and Joe have introduced her to a number of their friends and her annual visits now usually involve a grand dinner party with Sigun and Joe, and now her, Parisian friends. Ah, what a life. It is nice to have such good friends in such a beautiful part of the world. Susan is now back to the more mundane life on Garfield Street in Denver.

My best to all of you. Dare I say, "spring is here"?

Thursday, April 17, 2008


Not that long ago I wrote about how there is no such thing as a little bug. This past week's experience with bugs tells it all: sore throat....cough.....fever.....pneumonia. When will this winter end? As the snow flies again in Denver I am once again wrestling with a colony of bugs who have taken up residence in my lungs. Enough already!!! Susan is visiting our good friends in Paris so Catherine took over and shuttled me to the clinic and hospital, and has monitored my fever, fluid intake, eating, etc. She has proven once again her ability to be calm in the midst of a storm. We had a few rough days but things are quieting down a bit and I suspect in another week we'll be back to normal. Susan is beside herself that she isn't around to nurse me back to health, no doubt with homemade chicken soup, but we are managing. Julia has a short break from school and will be home today to check on me. These girls continue to be pillars of strength, even though I know they get scared when I get so sick. Despite my urging to enjoy Paris, I suspect my pneumonia has been a dark cloud in what should have been an enjoyable springtime in Paris for Susan. My weakened immune system frustrates me as I know in my precancer years this latest bout would not have gone beyond a sore throat for a few days. This is an example of why I'm so resistant to talk of another transplant. A foreign donor transplant would require me to be on immunosuppressants for years after the transplant, which would make me even more vulnerable to all these bugs. I see these patients at the clinic regularly and they are visibly frustrated week to week as they can't seem to rid themselves of these infections. They do not have quality of life.

Due to the respiratory infection Rifkin cancelled the velcade this week. I was relieved as I did not feel up to dealing with the ups and downs of the chemo on top of this crud. I see him again on Monday and hopefully we'll get back on track. A few weeks ago I thought I saw spring around the corner, but it was apparently a mirage. Perhaps we'll see it by May 1!!!


Monday, April 07, 2008


Monday morning at the clinic. No doctor, just the nurse to infuse the velcade. Numbers report from last week looks good. IGGs are steady at 1558 (last month 1660). A few of the other markers look improved so I'm happy. Other blood work, like white count, platelets, neutrophils, hematocrit, also all look good. Maintenance is doing what its supposed to--maintaining.

Had an interesting discussion with the nurse, who read the "substitute" doctor's note from last week, as Rifkin was out of town again and I was seen by another one of his partners. As with the other partner, this one was interested in knowing "the plan." I think these guys have a song stuck in their heads, the name of which is, "transplant on my mind." Boy, talk about being in mental ruts. Try expanding your thinking guys. This doc wasn't as pushy as the other one, but still, it was obvious he thought the plan should include another transplant. Maybe they think they're going to clone me into one of my brothers because I'd be getting their stem cells. The world couldn't handle it!!!! Anyway, my nurse today tells me that he wrote in the chart, "patient adamant about not having allo transplant"--that's allogenaic, meaning, from a foreign donor--a nice way to refer to my brothers. I don't remember being that adamant, but I do know given that I feel pretty good these days, I'm not really interested in planning for a transplant. I tell my nurse this, and ask her, if she had my "numbers" would she be interested in having a transplant. A clear no is the response. One hour and I'm out of there. Record time. I'm ready to have Rifkin back.

We had a very successful fund raiser for Light the Night. We raised close to $5000!!!! A good start for my plans to exceed the $25,000 we raised last year. People's generosity continues to humble me. The longer I live the more committed I find myself to helping to rid the planet of this nasty disease. With your help we'll see a cure in my lifetime!
Love to all,