Postscript Number One; Stem Cell Collection?

Dave’s Great Adventure
February 2, 2003
Postscript #1

Happy New Year! Yeah, I know, it’s a very late greeting for this year, but in the last letter in this long journal series I wished you Merry Christmas, just after I found out that my bone marrow biopsy was completely normal. For weeks I’ve been wanting to get another letter out to all my friends who have been following my progress, but I’ve just been too busy to sit down and write. I have a lot of news to pass on to you however, so here goes.

First, I am doing extremely well. I have recovered just about all my strength since my last round of chemotherapy in October. I get tired when I’m too active, but I’m not sure whether it’s a residual chemotherapy effect, the fact that I’m out of shape from my months of inactivity, or just that I’ve gotten lazy over the past six months. I also have gotten over just about all of the mental “fuzzies” from which I was suffering for so long. That’s a good thing, since I’m going back to work, and in fact have been working part time throughout January.

I had a blood count done a couple of weeks ago, and was quite surprised to find that my white count had dropped again. It had been three months since my last round of chemotherapy so I expected my counts to be slowly rising, so the drop, to 2,200, caught me quite by surprise. My doc tells me that my count may “bounce around a bit” for several months. I’ll be getting another count in about ten more days. We’ll see what the count does by then. Fortunately my red cell and platelet counts are remaining pretty much in the normal range.

I mentioned in my last letter that we were investigating the possibility of collecting some of my own “stem cells” now that I’m in complete remission, to be frozen and kept for a possible transplant in the future when I might need it. Stem cells are the cells we have in our marrow, and in small numbers in our bloodstream, which produce all of the cells in our blood; the red cells, lymphocytes, neutrophils, platelets and all the others. I met with a cancer specialist, a “transplanter” named Jeff Matous, who spent a lot of time with me talking about my disease and possible plans for the future. He kept talking about my “fantastic” remission (good words to hear, to be sure) but that we had no long term data on how long it might last. He said he thought it would last a long time. I asked, “How long; three months, a year, three years, six years?” He smiled and said “Yeah.” He said that the disease is considered incurable and a relapse is expected, but we can’t predict when. He also went into incredible details of the disease, discussing the origins of the disease at the level of the chromosomes, things I didn’t know despite the fact that I’m a doc (albeit a simple gynecologist), and have read lots of material on leukemia since I found out I have it. He also went into the possible treatments. There is no consensus on how to treat this disease. The treatment seems to vary from one part of the country to another. And it also changes from year to year. The treatment, Jeff said, is “a moving target.”

He said that the “current “ therapy changes so fast that if I relapse in three months, he would know what to do, but if it happened in two or three years, he didn’t know what they would be doing. That brought up the subject of stem cell transplants. They are not commonly done for chronic lymphocytic leukemia, the kind I have, though they’re done for certain lymphomas and other cancers. But, they have been done, and he recommended that we collect the cells while I am in this “fantastic remission” (while my marrow would be made up almost entirely of normal cells and not the leukemic cells which made up 40% of the marrow cells before we stated the chemotherapy).

The problem now is that, as I said, there is no consensus of what should be the standard treatment for the disease. So when my doc, Brian Koester, approached my insurance company (the company for which I also work!) about this therapy they turned down the request. The treatment, they said, is not “evidence based.” In other words, it’s considered experimental, and therefore not covered by the health insurance. Brian called around the country to other transplant centers to get advice, but really couldn’t get a lot of support for the process at the present, as most centers are doing the mini-bone marrow transplants with donor marrow these days (I described this process a long time ago in my early letters).

So, what to do? Well, when you have a lethal disease like I do, you don’t want to close any doors that might be helpful to you in the future, even if the current thought on the matter is that it’s not one of the best treatments. Remember, the treatment seems to change from year to year, and who knows what they will be doing in two or three years. So, I’m thinking about paying for the stem cell harvesting and storage myself. I haven’t gotten a firm fix on the price of collecting the cells, but I think it’s in the range of $6,000-8,000. Now, that would be the easy, “cheap” part. If/when I might need the transplant, the question remains, would my insurance fund the transplant? That would be more in the range of $100,000 or more. But hey, what are savings accounts for, anyway? If you have a choice between dying or retiring, well, there really is no question about what you would do, is there?

I mentioned that I’d been working part time in January, a day or two per week, as I regain my strength. I’ve done pretty well. I found that the female anatomy hadn’t evolved very much over the last six months and I pretty much recognized all the parts. And since my “fuzzies” are gone, I didn’t prescribe any WD-40 for vaginal infections! I start working four days a week on Monday, with a couple of day shifts on Labor and Delivery (als Geburtshilfer) each month, on weekends. Since I found out I had leukemia, I stopped doing nights shifts, as members of our group are permitted to do if they are over 55 years of age. And, I wrote to the chiefs of our department asking if I could reduce my scope of practice, and they agreed to let me work primarily in the clinic for the remainder of my time with the group. I’m going to stop doing surgeries (except for caesarean sections [Kaiserschnitt]) and I’ll no longer work emergency room duty. Narrowing my practice down will simplify my life as I close in on a retirement at some time in the fairly near future.

When I went back to work recently, I had some interesting news. I’m getting sued for medical negligence. Just the kind of news I needed to hear right about now! I really can’t say much, but a patient claims I removed her uterus (Gebaermutter) without her permission! Yeah, right! I suppose getting this resolved will take many months to a few years, as slow as the legal system works here in America.

I have some sad news, also. A few months ago I mentioned a friend of the family, Cindy, who, with her brother Bobby, grew up as friends of our kids in El Paso. Cindy had written to say that since I had to “excrete” so much and so often during my chemotherapy that I should have more sympathy for her now. She’s the girl whom I said had the “teeny, weeny bladder,” who had to stop for bathroom breaks every thirty minutes when we were traveling through Europe during her visits with us there. Well, the very week that I got the wonderful news about my bone marrow biopsy being completely normal, Cindy and Bob got word that their dad, an orthopedic surgeon in Abilene, Texas, had lymphoma! When I heard about this, Cindy and I exchanged some e-mails and I told her I thought her dad would probably get the same medicine I had gotten, the Rituxan, over a few months, and then probably be back to work after his therapy. I was stunned to find out that his lymphoma was so aggressive that it began shutting down his organ systems very rapidly. After several surgeries, chemotherapy and dialysis, he died last week! That was just five or six weeks after he was diagnosed! I just feel so bad for those kids. They lost their mom to breast cancer a few years ago, and now they’ve lost their father. He was sixty, just getting to the age where he could think about retiring and enjoying life, and now he’s gone. It happened so incredibly fast.

Along the same line, my boss was out horseback riding a couple of weeks ago when he heard another horse galloping up from behind, with the rider yelling “Whoa!” He turned around to see the horse throw the rider, who landed on his face. The man suffered severe head injuries and is essentially brain dead. He had just retired from a major investing firm here in Denver, and now he’s gone. He’ll never enjoy the retirement he was looking forward to.

Life is so incredibly fragile and unpredictable. We all think we know where we are going in life, but there are unexpected surprises around every corner. Like I remember hearing a few months ago, “If you want to make God laugh, tell him your plans.” We all know we’re going to die, but we really don’t believe it. We see death on the distant horizon, but as we walk slowly toward that horizon, we never think we’ll reach it, as it always seems so far away.

I think God has kindly given me a two minute warning, if I can use a football analogy. I now know that my horizon is approaching faster that I thought, and so I can make different plans than I originally might have. I can plan my life now to more fully enjoy the time I have left; to work less and spend more time with my family and friends. My time now means so much more to me than any money I might be making. As we hear so often, on one’s deathbed nobody ever wishes they had spent more time at the office.

This knowledge also makes me live my life a bit differently. The week I got the great news about my normal bone marrow biopsy we went out to eat a fancy dinner with our friends Lou and Joan. On the way home it was snowing a bit and the highway was slushy. I was driving like I usually do (probably too fast) when it occurred to me that it would be too ironic if I were to beat the cancer only to kill myself in a careless auto accident. So I slowed down for the drive home. Though I must admit that I haven’t stopped treating our interstate highways like the beloved autobahns of Germany when conditions permit. On the way back from Oklahoma last week we spent a fair amount of time at 90 MPH (about 140 KPH) when the traffic was light and the visibility good. Though that’s not really fast by autobahn standards.

One reason I’ve been too busy to get this letter written is that we just returned from two back-to-back visits to Oklahoma where we helped Kathy’s parents move from their home into an apartment complex which provides around the clock help. On the return trip, after our second trip in a week, I was reading a newspaper and found a very interesting article. It seems that the Veteran’s Administration has found a connection between the exposure to the notorious herbicide, Agent Orange, which was widely used in Vietnam, and the development of chronic lymphocytic leukemia. The stuff was used so much that all Vietnam veterans are presumed to have been exposed. In fact, my unit, the Americal Division, was using this herbicide long after it was supposed to have been banned. What this new finding means is that I will be eligible for medical care at the VA hospitals for this disease, if I need it, and I will probably be eligible for some disability compensation. The regulations covering this are being written now, but won’t be ready for about a year yet. If I were to get a disability payment, it might make it easier to retire a little sooner than I presently would be able to do. We’ll see how this develops.

As I was getting my thoughts together for this letter, I was going to mention that I happily hadn’t gotten a cold yet this winter. I have been very careful about washing my hands, avoiding sick people, and staying away from crowds. This was especially important since my white count is still so low. Well, I can’t tell you that now. After working in the clinic last Tuesday, I woke up Wednesday feeling a little ill, and over the last few days it has developed into a real cold. I feel miserable. But more than how I feel, I worry what it might develop into. We have just completed the destruction of most of my B lymphocytes, the ones that create antibodies, so it may be very difficult for me to get over what generally would be a very minor problem. I’m now into day four of this illness and it’s slowly getting worse. This will be a new experience for me. I hadn’t been sick since we started the chemotherapy (except from the chemotherapy itself).

I think I’ve rambled on long enough for now. I want to thank you folks out there for thinking about me. My thanks to my German friends for the custom calendar and CD, to Kent in Lubbock for the CDs of his favorite music, to the Finleys for the jokes and messages, and to everyone else I’ve been hearing from. I really appreciate your thoughts. I’ll close for now but I’ll get another update out when anything else of interest happens.

Until later,

Dave