Saturday, March 6, 2010

The Leukemia Roller Coaster

Dave’s Great Adventure, Book Four

Chapter 1, Verse 1

March 6, 2010

I had written a follow-up story to add to my DGA series. All I had to do was proof read it, polish it a bit and send it out. I mentioned all the good news we’d gotten. Then we got a phone call.

Our trip last month to M. D. Anderson in Houston was uneventful. I enjoy the trips out there as I like the “road trips” and the drive. Interstate 45 isn’t the most scenic highway in America but it’s a nice, open and fairly lightly traveled road, where you can “exercise” your car, if you care to do so. This prior autobahn driver likes to “exercise” his car when given the opportunity! Plus there’s some pretty good barbeque to be had along the way.

The visit in the Leukemia Clinic went very well indeed. I had some blood drawn the day before the actual visit and all the tests that had been completed were normal. That’s a nice thing when my blood tests have been abnormal for so long. My physical examination was normal, too. In fact, things were so normal that my doc, Dr. Keating, said I could wait for a year to come back! Whenever your cancer doc says you can come back in a year, that’s good news indeed. I did mention that I was still having somewhat of a mental fog, the “chemobrain” that I have mentioned on several occasions, which makes it hard to concentrate and multitask. It’s a bit like having ADHD, I suppose, as I have trouble reading a whole newspaper article before I want to skip to something else. And I can’t usually do the MENSA quizzes in the airline magazines anymore. Anyway, they offered me Ritalin to treat the problem, but I declined. I think that makes you rather hyper. Kathy doesn’t need to put up with me being hyper, too.

Things were so normal that after my physical exam was done, checking my lungs, heart, lymph nodes and such, they even canceled the bone marrow biopsy that was scheduled for later in the morning. Now, as much as I enjoy reading the clinical pathology reports on my bone marrow biopsies, I didn’t miss getting my hip bone “drilled” again. We decided to do a test called a “flow cytometry” instead, a blood test that examines the white cells looking for signs of leukemia.

While I was with Dr. Keating I asked him about the significance of the negative PCR test which had shown up on my bone marrow biopsy last August (which could find no evidence of leukemia at the molecular level). He told me that with the mutated gene I had (see my story entry [below] from September 13, 2006) and a negative PCR test, I had probably a 75% chance of being in remission in TEN YEARS! What incredible news that was. What a “high” you get when you hear things like that!

So, leaving the clinic in a great mood, we went by the lab to get my flow cytometry blood drawn and then headed back home.

But a few days later, I got a letter from the leukemia clinic saying I was to come back, not in a year, but in six months. I figured there had been a mistake and called the research nurse, who handles my case. I got her answering machine and so left a message asking about the six month visit and, additionally, if she could mail me a copy of the flow cytometry test results, as they never come back until I’m long gone from Houston . Later that day Kathy and I were out at her physical therapy appointment, since she’s still having those three times weekly following her second knee replacement surgery. During our absence my Houston nurse, Ana, called back and left me a message, saying that, yes, six months was the correct interval and that I should call her to talk about the “flow.”

Now, it’s not generally good news when you’re asked to call back to discuss a lab result from your leukemia doctor’s office. When things are normal, the message usually is, “We’ll put a copy of your labs in the mail.” So I called her back. Ana gave me the unexpected news that my flow cytometry test, after being absolutely negative for the last eighteen months, was again positive, and showed the presence of leukemia cells. This was completely, totally unexpected, as I’d been doing so well. I had the negative PCR test just six months previously and I had otherwise normal blood tests. But the flow cytometry test can detect a single leukemia cell among something like 10,000 normal white blood cells, and apparently now seems to be showing about 2% abnormal cells. Wow! From such a mental high with the good news of the previous week, to such a low, finding out that the disease is still stalking me. Looks like I beat the odds, in a way. I’m in the other 25% that won’t be in remission in ten years.

But these highs and lows are what this disease has been doing to me for years now. I was so very low when I found out I had leukemia; then high when I first went into complete remission, imagining that I might actually be cured. Then low again when it recurred a year later. Then high again, but not quite so high (because I’d been fooled once before), when I went into remission again after my second course of chemotherapy. Then low when it came back yet again in eighteen more months. But, then after this most recent aggressive, experimental course of novel chemotherapy which made me PCR negative, I was very high, again deluding myself into thinking I might either be cured or have a long, durable remission. And now…low again. But, there will be highs again; I just know it.

So, for now we wait. I’ll be getting blood tests every couple of months or so to see how rapidly my white blood cell counts go up. I’ll be seeing my local doc in about a month and seeing Dr. Keating again in Houston in six months, unless things change more rapidly than expected. It’ll be interesting to see what he thinks we should do the next time we need to treat me. We’ve pretty much used up the “easy” things, with the three experimental therapies we’ve tried. But, Dr. Keating mentioned to me in another conversation last year that his group expected to begin clinical trials on yet another experimental therapy sometime this year, one that they thought might lead to a cure. That should be interesting, and perhaps I’ll qualify for that new drug protocol. Plus, we can still try a bone marrow transplant when all else fails, though that entails some significant risks.

I previously mentioned that during my remission I had gotten more active in the Team In Training, and had done a few half marathons as fund raising events for the Leukemia and Lymphoma Society. And in January, I signed up for yet another event which I expect to do in June. But even though I’m now relapsing and the disease is returning, I still hope to be able to complete this event. I have pledged to raise over $3000 this time, and I would like to ask for your help in raising this amount. I plan to contact many of you individually, but if you’re able to help me with my task at this time, I’d like to ask you to go to my donation web page and help me by donating whatever you’re able. No amount is too small. Like I told my teammates recently, I hope the researchers can find a cure for this disease in my lifetime. But trying to find a cure will be very, very expensive. Please help me raise some of the funds that it will take to cure this disease.

Thanks for any help you can give me and the Leukemia and Lymphoma Society. I am deeply and personally grateful for all the wonderful folks who have been helping me, praying for me and supporting my causes over the last several years. I hope I can count on your support in the future.

More to follow…there’s always more, isn’t there?

Dave Eckberg