Friday, December 19, 2008

Update, Apologies and New Goals

Dave’s Great Adventure
Book Three, PS1
December 19, 2008

So many things have happened…so many things.

I’ve tried to sit down on several occasions to write up an update on how I’m doing and what’s going on here but even after starting several drafts, I just couldn’t get anything substantial written. I was always too tired, too lazy, too busy or too chemo-brained (that’s my catch-all excuse when I fall behind in my responsibilities). Or maybe it’s been a combination of all those excuses.

I owe many apologies. First, to all my friends who have been wondering and worrying about me. I mean, when you’ve been getting regular updates from someone who has leukemia and who is going through chemotherapy, and then the messages suddenly stop, you have to wonder what has happened. A lot of unpleasant things are certainly possibilities in these circumstances. I’ve gotten some inquiries from some friends asking if I’m doing okay or not. I shouldn’t have put my friends in the position of having to ask.

Let me deal with that first. I am doing just great. I have been busy, I have been tired, and I have been lazy, but I am doing very well indeed. I am in complete remission from the leukemia (again). I had another bone marrow biopsy at M. D. Anderson in Houston in September and they could find no evidence of residual disease for now. That’s the very, very good news. The chemotherapy wiped my marrow clean. Now, the other side of that coin is that they also could also find almost no B-lymphocytes. All my leukemic cells are abnormal B-lymphocytes so it’s good that they are gone, but normal B-lymphs are the cells that make antibodies. So I need some of those guys. But even though the docs at M. D. Anderson couldn’t find many in the bone marrow specimen, I know I must have enough around somewhere in my body because I haven’t gotten terribly sick as I would if I had absolutely no B-lymphs left and wasn’t making any antibodies.

My blood counts, for those of you who may follow this stuff, remain low. That’s to be expected as the chemotherapy works by damaging the stem cells in the bone marrow and lymph nodes that make blood cells. So my red blood cell count is a bit low at 34% (normal for a male is more like 45%), and my platelets are low at 79,000 (normal being 150,000 to 350,000 or so) but that’s up from the 40,000 they were at the end of my chemotherapy. I was getting a lot of bruises when the platelet count was that low, but I’m getting far fewer now that those numbers have recovered a bit. And my white blood cell count, which was almost 100,000 when we started the chemotherapy last February, is staying between 2,000 and 3,000 which is also lower than normal. But that’s a good thing, under these circumstances.

I don’t know how long I can expect to remain in remission. The first time I had chemotherapy I was in remission for a year. After my second course of chemo I was in remission for about 18 months. But both times, when the disease returned it did so very slowly and I didn’t require more drugs for many months even after we first found evidence of recurring leukemia.

I have regained much of my strength, and faster than I expected to, but I’ll talk about that a bit more in telling you what I’ve been up to. What I haven’t regained totally is my mental capacities, because of the “chemobrain” I sometimes joke about. I feel slow mentally much of the time, which really is part of the problem with trying to write up a coherent letter. I can have many thoughts in my head but they routinely disappear when I sit in front of the computer to try to write. Plus, I can’t keep more than one thought in my mind at a time. I can’t multi-task, and that’s one major reason I retired. I couldn’t keep several thoughts in my mind at one time and you have to be able to do that when you’re taking care of patients. You have to remember what the patient is telling you, what questions you need to ask, what tests you need to order, what drugs to order, what instructions you need to give the patient, and more. I noticed some problems with this after my first round of drugs back in 2002 but it wasn’t too bad. After my second round in 2004 it got worse and I ultimately couldn’t keep up safely and had to leave my job.

I was feeling like the mental fog was lifting somewhat a couple years after I retired, but now it seems to have returned. Fortunately, my new job as a retired guy doesn’t place too many strains on me. I do have problems remembering things and I can’t tackle more than one task at a time, but other than that things aren’t too bad.

Back to the apologies; I want to apologize to so many of you who helped me raise money for the Light The Night walk that Kathy and I and our family did in October. My intention was to send each of you a personal thanks but I couldn’t keep up and most of you only got the automatic response from the Leukemia and Lymphoma Society. Plus, many of you were subjected to my false starts and erroneous letters when I was trying to send out my requests for donations. I really was in a fog! But despite my mental fog and e-mail missteps and with your help we raised over $3000 for the LLS. Thank you for all your help.

The last time I sent out an update, in July, I was in the midst of my last round of chemotherapy and my step-dad had died. The timing of my infusions was unfortunate as I wasn’t able to go to Iowa to be with Mom and the family during this time. So, I stayed in Texas and recovered with much the usual side effects and over much the same length of time, with the weakness, headaches, fatigue and so forth.

About a month after my step-dad died Mom decided she wanted to move to Texas. We had discussed this possibility in general terms in the past, as none of her kids live in Iowa and because most of her immediate family now live in Texas, clustered around the Dallas/Ft. Worth area. So we’re now happy to have my mother living in Denton in a senior’s apartment complex and being close enough to visit on a frequent basis, after years of only seeing her for a few days a year during the time she lived in Iowa. Mom has been very busy getting adjusted to the new surroundings; she’s had to get new doctors, a new dentist, new banking, new health insurance, new friends and a new way of life. But she’s settling in pretty well, especially considering all the changes that she’s gone through since Lloyd died in July.

As I recovered from my last round of drugs, I started to walk around the neighborhood, as I had frequently done before the beginning of my drug regimen. I enjoy being outside and need the exercise anyway. I found, however, that having been pretty much sedentary for the six months of the chemotherapy had done bad things to my muscles. Just walking around the neighborhood was a chore, and my legs were sore after my walks. But gradually I noticed my stamina increasing and the muscle soreness decreasing and I was able to walk longer and longer distances. By early October I was able to walk about three miles without much difficulty. This was about the time that we did the Light The Night Walk, which is just a couple of miles, short enough that the grandkids walked it with us.

The week after the Light The Night walk Kathy and I went to Colorado for a very short trip to cheer for our friends Lou and Joan Henefeld who had signed up and trained for the Denver Marathon, working through the Leukemia and Lymphoma Society’s Team in Training (TNT). They had never done a marathon (26.2 miles) before yet they worked for months to get physically ready for the marathon and they worked regularly sending out letters and e-mails to raise funds for the LLS. They did this all in my honor, as a friend and survivor, which I found very humbling. They did just great walking the marathon course and between them they raised over $8000! They are just amazing folks.

Well, I started thinking about what they had done and wondered if I could even come close to their efforts. I started thinking that maybe at some point I could at least do a half-marathon, a distance (13.1 miles) I hadn’t walked in several decades. But I had been walking more and more easily in the previous month or two and was able many days to do three miles, so I started to get serious about working up to a half-marathon.

A few weeks after we returned home from cheering on Lou and Joan, and their TNT teammates, as they ran and walked the marathon course in Denver, I signed up for a 5K (five kilometers, or about 3.1 miles) run sponsored in Ft. Worth by TNT. I did fine in that event, though only with a very loose interpretation of the operative word “run.” I walked at a brisk pace and finished the short course in about 46 minutes or so. I was amazed to see that a number of my teammates for TNT got up early on Sunday morning and drove to Ft. Worth to cheer me on! Now, the fact that I did the “run” in blue jeans, long-sleeved knit cotton shirt and deck shoes was a source of amusement to my TNT teammates so I’ve had to go out, at Kathy’s (and our coach’s) instruction, to get more serious running shoes and clothing.

So, after the 5K event I was walking with TNT teammates who were getting ready for the White Rock Marathon here in Dallas. I found that they were also forming some relay teams and that I might be able to get a spot on one of them. I was happy to offer to be a part of a team if a position opened up, which it did, just about two weeks before the marathon. I was given a five mile leg of the marathon, which was a distance I hadn’t worked up to yet, and didn’t get to do before race day, but last Sunday morning, our team (“Survivors”) completed the race and I did my first five mile walk in many years. We were called “Survivors” as the team consisted of me, four months out of chemotherapy, another blood cancer survivor named Niki, who was just six months out of a wheelchair, a young man with cystic fibrosis (which didn’t really slow him down), and two other guys who had great running times and kept up our overall pace. I was happy to be part of this team and to be able to complete my assigned five miles.

Which brings me back to goals. At the first of this year my immediate goal was to get through the chemotherapy regimen which I was facing and to hopefully get into remission. That goal has been achieved in fine style. I hope it lasts for a few years. And now that I have been able to complete my five kilometer and five mile events, I have set a new goal, for myself, that of doing a walking half marathon in the coming year. To that end I will be walking longer and longer distances in the coming months to see what my limits are. I hope I can soon report back to you that I have been able to complete a half-marathon before the end of next year.

And that’s just about all the news from here. I’ll try to get periodic updates out to you, my friends, and let you know how things continue to go as I get my monthly blood counts and every-three-month doctor appointments.

And my next immediate goal is to get Christmas cards written!

Merry Christmas, Happy Hanukah and Happy New Year to all of you,