What To Do? So Many Options, But No Cures.

Dave’s Great Adventure, Book Two
Chapter 1, Verse 2
November 1, 2003
What’s Next?

Last month I sent this message to my family, on the day I got the bad news:

“Just like Arnold [ a reference to Arnold Schwarzenegger in “The Terminator“ movies]...he's baaack!!! I just got my most recent bone marrow results back and it's not the news I wanted. The disease has returned and is currently afflicting 5% of my bone marrow. Actually, my doc, in his message, said he'd normally be happy with these results as "good control of the disease." But I don't want control; I want eradication. Anyway, now I have to see if my "transplanter doc," Jeff Matous, will still be interested in collecting some stem cells when they're again infected with the bad guys. Oh yeah, there's more....the recent report mentions that the study shows the leukemic cells have the CD38 antigen, associated with more aggressive progression! Well, just what I wanted to hear! Anyway, I'll be seeing what the next step will be and start putting together another DGA pretty soon, "Book II," I guess. Later, Dave”

So, in the month since I sent all of you my start to Book Two, I’ve been wrestling with what to do next. I mentioned that I knew there were basically the same options we had last year when I began my first treatments. The only difference is that now we know that the treatment I received last year won’t last very long. I was in remission just short of a year with my first course of fludarabine, cytoxin and Rituxan, the treatment that is becoming the standard down in Houston, Texas at the M. D. Anderson Cancer Center. It was developed there and seems to be the most potent and effective combination therapy there is at present, at least in the short term. Of course, there are still no long term studies to see if it will last more than a few years.

My doc, Brian Koester, has talked with my “transplanter” doc, Jeff Matous, who works at the Rocky Mountain Cancer Center, about collecting stem cells from me, now that my marrow is no longer “clean.” The message I got from Brian indicates that they don’t think they want to do it now, but I’ll be meeting with Jeff next week to discuss the possibility in person. There are centers that still would do the collection and then separate the good guys from the bad guys after the collection, saving only the good guys, the normal cells, to be transplanted back at a later time. That option seems still to be open, but it could be expensive if we need to do an extensive separation of cells.

I was talking to another oncologist recently, the spouse of one of my colleagues in the ob-gyn department. I was asking what options he thought there were. He confirmed that there really is no standard treatment and that you can make a case for just about any treatment you want to consider. He mentioned that the job of the oncologist is to keep the patient alive long enough for them to die of some other disease. A little black humor from that profession..

Meanwhile, I have been doing well, at least physically. I continue to work in the clinic four days a week and do pretty well, but having this disease, and thinking about its implications on a daily basis, makes me crazy! I just don’t know what to do with what remains of my life. There are so many unknowns and so many variables. Will I live three more years? Five? Maybe ten? Or will I die during an attempt at a bone marrow transplant next year? Will I somehow achieve a lasting remission? If I do, could I count on it lasting any certain number of years? The answers to all these questions are “We don’t know.”

I really want to get Kathy moved back to Texas before I die. I don’t want her to be stranded out here by herself having to deal with selling the house, sorting out all the stuff we own, settling my estate, moving to Texas where all our children live, and then buying another house, moving in, etc., etc., etc. All of these things happening at the same time as she will have taken a severe emotional “hit” with my death. The problem is, however, that I can’t realistically move right now as my job and my health insurance are here in Colorado.

I had hoped that I would be getting some help from the Veteran’s Administration. They announced earlier this year that vets like myself who had been exposed to Agent Orange (the herbicide used extensively in Vietnam) and who developed chronic lymphocytic leukemia, would be eligible for assistance. It was implied that there would be some disability payment associated with this assistance. I was thinking that with eligibility for medical care from the VA and with some disability payment I would be able to afford to leave my job and move Kathy and me out to Texas, near our kids, within the next couple of years.

So, I dutifully applied for the disability, went through the required physical examination, lab tests and such, and then I waited. That was last July. Yesterday, I finally received a big envelope from the VA. Knowing that I in fact have the disease, and that it is incurable, I knew that I would have to get some sort of disability. I opened the envelope to see what the amount of my “assistance “ might be. Astonishingly, at least to me, the VA found that, yes, I was exposed to Agent Orange, and yes, I have CLL, and yes, I am eligible for care at the VA hospitals, and that my disability rating is 0%! They made note of the fact that when I went through my physical exam in July I was in remission, therefore I was not disabled.

Now, while that is a true statement, anyone with a knowledge of CLL knows that when one is in remission, a relapse is expected. And that means the patient will need more therapy of some kind, up to and including a bone marrow transplant, and during whatever treatment is chosen the patient will be at least transiently disabled, usually at 100% for many months at a time. As an example, I was 100% disabled for work purposes for about six months last year. And if I go for the bone marrow transplant, and survive it, I’ll be out of work for about a year or so. And even if we decide on just more chemotherapy of some sort, I’m going to run out of sick days with another six months out of work. The finding sort of implies, also, that I won’t be disabled until I’m on my deathbed. The VA will provide care for me while I die, but won’t help with any stipend during that time. Thanks for nothin’, guys!

So, while their finding has no real impact on me for the moment, their finding of 0% disability means I won’t get any additional income and therefore won’t be able to leave my job here in Colorado to move Kathy back to Texas anytime soon. It does mean that Kathy will be eligible for a retirement benefit from the VA upon my death, so she will be taken care of between our retirement plans and the VA assistance.

This whole scenario seems ludicrous when you consider that the kind folks at the VA went through my medical records when I retired from the Army ten years ago and decided that I was 20% “disabled” because of hearing loss associated with combat exposure to weapons and helicopters, and because of arthritic changes in my right shoulder associated with having to do mandatory pushups on a regular basis while I was on active duty. They’ve been sending me a check for about $200 dollars every month (which they take out of my army retirement benefits; there are no additional dollars given) for these very minor problems. And yet, they say the disease, which will cut my life about 15 or more years short rates no disability at all. Don’t you love bureaucracies?

So, over the last few months we’ve just been doing blood tests on me every month, checking my white blood cell counts. My doc, Brian Koester, says we’ll likely start treatment again when my white counts get to about 20,000. You may remember that we started a bit late last year, waiting until they surged past 65,000 (with about 10,000 being the upper normal numbers), which altered what we were able to do with my treatments because the numbers were so high. However, over the last three months not only have my counts remained normal, but they’ve actually been declining. From August to now they’ve gone from 4,800 to 4,200 to 4,000. I don’t expect that trend to continue, but at least they aren’t rapidly going up. But since we don’t plan on doing anything until they do, it again makes it harder to know what to do with my life in the near and long term.

Speaking of my life, I mentioned earlier that thinking about my life, my disease and all the unknowns attendant to my disease are making me a bit crazy. Well, I’ve been collecting my thoughts on living with a terminal disease and sometime in the fairly near future I’ll subject you to my rambling, crazy thoughts on the subject of living with a death sentence. And you already thought you’d seen plenty of rambling, crazy thoughts! Just wait!

So, Kathy and I have been trying to live life as normally as possible. We still go out to eat, go to an occasional movie, and travel when we can. We just got back from a trip to San Antonio where I went to the annual military Ob-Gyn docs meeting. I try to go most years to see my old buddies, but each year there seem to be fewer and fewer there as more folks retire and go on to other jobs. I learned something very interesting, medically speaking at this meeting, however. Those of you who have an interest in menopause and hormone therapy may have heard (in fact, you could have hardly missed!) the hysteria surrounding a study which was published last year which purported to show that huge numbers of deaths among women on hormones (at least, that’s what it sounded like in the lay media). Anyway, in August the researchers “revised” their numbers and the risks they were quoting suddenly are no longer statistically significant. So, if you’re a fan of hormone therapy for your hot flashes, etc., you no longer need to feel guilty or endangered.

We plan to have a bunch of folks here for Thanksgiving, including some of our kids and the family of my sister Debra from Sacramento. Then, we are planning to take our family for a vacation in Mexico in early December, to Acapulco. And then, if I’m still doing well, and my condition hasn’t changed substantially, Kathy and I still plan on taking the trip to Antarctica in January which I’ve mentioned in the past. It’ll be about a twelve day cruise. We’ll see how it goes; Kathy doesn’t like cold; I get seasick. Could be interesting.

One other thing I’ve been able to do recently is get back to astronomy and use my telescopes. I’ve been able to get out a couple of times at the new moon, when the skies are dark, and go out to the prairie with some friends, well away from the lights of Denver. We’ve been able to see some fantastic things in the sky. Stars, planets, nebulae, star clusters and more. I keep looking for Heaven up there but haven’t seen it through the scope yet. I do see it daily though, in Kathy’s smile!

I guess that’s enough stuff for now. So, until later, I’ll close this verse of chapter two. I’ll be meeting with my docs over the next few weeks to come up with a plan, and I’ll share all the gory details with you, whether you want them or not, when that happens. Remember that the “delete “ button is always available when this stuff becomes too tedious. In the meanwhile, you may be subjected to my rambling thoughts on life in the near future, when you least expect them!

Until later,

Dave