Friday, February 21, 2003

Postscript Number Two; Searching for Stem Cells!

Dave’s Great Adventure
February 21, 2003
Postscript #2
Stem Cells???

Hello again to all my friends around the world who may be interested in reading about my adventures with leukemia. A few things of interest have happened over the past few weeks so I thought I’d send out an update on our activities.

First, at the end of my last message I mentioned that I had gotten a cold, despite my extreme precautions at avoiding crowds, sick folks, doorknobs and money handling. I feared that it might develop into something worse than a common cold, like bronchitis or pneumonia, since my antibody producing cells had, for the most part, been severely damaged by the months of chemotherapy. Well, I’m happy to be able to report back to you that the cold wasn’t all that bad. It lasted about seven days, no more than a usual cold. During that time I was taking a lot of vitamin C, echinacea, the new cold medicine Zicam and zinc, for whatever they’re worth, but they seem to have helped. I’m becoming a believer in some of these homeopathic remedies.

I told you last time that we were trying to collect some of my stem cells while I was in my “fantastic remission” for use in a possible future transplant. Now, my employer/ insurance company denied my doc’s request to have this procedure set up, citing the fact that they didn’t feel it was an “evidence based” treatment. That led to a lot of things happening.

I was called by a person who worked on my request, the very same person who signed the letter denying the treatment, and she suggested that I appeal the decision immediately! I found this to be a bit curious and asked her why she recommended this. She said that “given my circumstances” that it might be reversed. She didn’t explain what she meant by that and didn’t say the decision would, in fact, be overturned, but it gave me the definite impression that if I pushed the issue, the company was willing to give in. So I immediately appealed the decision and proceeded with plans for harvesting my stem cells. The plans, unfortunately included getting another bone marrow biopsy and a whole bunch of blood tests. I didn’t count on another bone marrow biopsy!

But I got the blood drawn for all the tests and endured yet another bone marrow biopsy, which this time will include testing the chromosomes on my marrow cells. We set up the “apheresis” to collect the stem cells for last Monday through about Wednesday of this week, all the time expecting that the insurance company was going to come through for me. I also had to start giving myself more shots of Neupogen, the same stuff I was injecting last October when my white count dropped to 1,000. This time, however, I had to give myself three times as much each day.. The five day course of the medication cost about $4,000! It is used to force stem cells out of my marrow into the bloodstream where they can be collected by the “apheresis” machine, basically a centrifuge which sorts cells by their size and weight.

While we were doing all this I got a long letter from the company explaining, again, why they were turning down our request. That was an unexpected surprise, as I really thought they were going to help me. In addition, by now I found out that my guess that the procedure would cost about $6,000 or so was way off. In fact, it’s more like $16,000! The letter explained that I had one more appeal that I could use if I wanted to. Well, I wanted to! Otherwise I told Kathy that I’d have to put her out on the street selling muffins and lemonade to help pay for the collection. I’ll get back to that last appeal later.

I started giving myself the Neupogen last week and immediately noticed that the side effects were much more noticeable than with the smaller dose I had used earlier. There was a lot of weakness, fatigue, and bone pain as the marrow started cranking out lots of white cells and, hopefully, stem cells. My bones actually throbbed in pain when I moved around very much. There’s always something new, isn’t there? I was, however, able to work through the side effects for the most part. They didn’t really get bad until almost a week into the therapy. By then I was starting the apheresis.

I had decided that I was going to get the stem cells collected whether the company paid for it or not. I needed to collect them now, not later when my blood was again filled with leukemic cells. So, we went ahead with the plans for the apheresis, at $4,000 a day. Yes, $4,000 a day! I was scheduled to start last Monday.

At about 6:45 in the morning we showed up at the hospital across the street from where I work; it’s called Presbyterian-Saint Luke’s Hospital. We went to the apheresis room where this contraption is located. The machine is about four feet tall, four feet wide and about three feet deep. It’s an impressive bit of equipment. The medical techs drew some blood for various tests and then began hooking me up to the tubing. Now, this is nothing to be taken lightly! They put in two very large intravenous needles, one in each of my arms. One to take blood out and send it to the machine, the other to put the processed blood, from which the stem cells had been extracted, back in my other arm. Since they had bare needles in my arms, not the plastic “intracath” tubing that I’m used to, I could not move my arms very much at all. If I did, the tip of the needle could move and penetrate my vein! The procedure takes about four hours!

So, I was relatively immobile. The problem was, they had told me to drink a lot of fluids before the procedure so they could get the access lines in my veins. Well, what happens after you drink a lot? I have had experience with this during my chemotherapy sessions, and perhaps you have had experience with this after too much beer or lemonade. Of course, after drinking a lot of fluids, I had to “excrete” a lot of fluids. But my hands were not available to help myself with this problem. And I couldn’t move around very much. And the folks running the machine were not nurses but medical techs. What to do? Well, they said they would step out while Kathy helped me with this “problem.” So Kathy got to “play nurse” with me, undoing my pants and helping me point “Rover” in the right direction. We did okay with this process, but I’d hydrated myself so well that an hour later I needed to do it again! So Kathy again came to my aid.

I’d been on the machine about three and a half hours when one of the techs came in and said we’d have to stop the collection. It seems that one of the tests we had done that morning showed that my stem cell count was too low to be collecting them! There is a test which I’d never heard of before, called a CD-34 assay, which measures the level of stem cells in one’s blood. The level should be about 10 or greater to be doing the collection efficiently. My stem cells were only at 3. Much too low. The doc who was running the show that day ( my doc was skiing that morning; there was great fresh snow in the mountains!) said I should keep giving myself the Neupogen shots and we would try again the next day, but we would get the CD-34 test results back before we put the machinery in action. That would keep us from using up $4,000 of machine time for nothing. The Rocky Mountain Cancer Center, where the “transplanters” like my doc, Jeff Matous work, gave me another day’s worth of Neupogen (about $1,000 worth) for free and we went home, disappointed.

The next day we again showed up at about 6:45 but instead of going straight to the apheresis machine we did a CD-34 assay. It takes about three hours to get the test back so we didn’t find out until after ten that it had gone up, but only to 5. My doc, who had returned from skiing, was encouraged by the rise and said we should keep giving the Neupogen in hopes of getting up to 10. So they gave me another $1,000 worth of Neupogen and we went home again. I decided that if I wasn’t going to be on the machine I might as well be working. I went by the my clinic and asked if they needed any help and of course they did, so I added myself into the afternoon schedule, then went home to change clothes and take a nap.

I slept for just a short time, but when I awoke to go to work for the afternoon, I felt just awful. The Neupogen effects were really kicking in. My bones, especially my breastbone, were hurting much more, and I felt extremely tired. But I went in to work, and though we had a full clinic, I managed to get through it. But I was exhausted when I got home.

The next day was a big day. We were to be at the hospital at the usual time, while it was still dark. We had to get the blood drawn and then wait the usual three hours to find out the results. Meanwhile, a committee that was going to evaluate my final appeal on whether the company would help pay for the collection was meeting a couple of hours later, across town. I had written a couple of letters to the committee explaining why I thought they should pay for it, but I had been told I could also attend the meeting if I wanted to. I really didn’t want to. I was feeling bad and didn’t want to answer questions at a committee meeting, not knowing if they’d be hostile or friendly, but I figured I should be there so I could defend my position as to why I thought the company should pay.

So after giving up another blood sample, we drove across town with my letters and some medical literature in support of the collection. I went to the clerk's office and explained that I really didn’t feel well, but I thought it would be best for me to at least be there when the meeting was held. She agreed and told Kathy and me where to sit, near the conference room. A few minutes later she invited me into the room to meet the committee. I didn’t know any of the folks there, but I recognized their names as two Kaiser Permanente doctors and an administrator. I was prepared to answer questions, but was taken by surprise when they told me to make my “presentation.” I hadn’t planned on making a presentation.

But I started talking, telling them what I had learned about leukemia, what the possible treatments were, why there was no real “standard” treatment, and why I thought collecting my stem cells now was as reasonable a plan of treatment as any other. It didn’t hurt my case at all that I seemed to know a whole lot more about leukemia and its treatment than they did. I made my case as best I could and then answered their questions. They told me that they would have an answer for me in about five days. I left, not knowing what they would decide, but I thought that they seemed open to the possibility of doing the stem cell collection. We went back across town, back to the hospital to check on my blood test. It had gone up again, but only to 6. They said to keep going. I got another $1,000 worth of Neupogen and went home and went to bed.

The next day, Thursday, Kathy and I again went to the hospital, which is in downtown Denver, to get my CD-34 test again. By then my doc had decided that if it went up at all we’d start collecting again, so Kathy and I waited around the hospital until the results were back, expecting that I‘d be on the machine before long. Bad news. It went down! To just 3 again.

My doc now decided that my bone marrow was just too beat up to make stem cells right now, even though it had been four months since my last chemotherapy, so we’d have to postpone the collection for a couple of months or so. Man, that was a disappointment for several reasons. First, I’d wasted four days hoping to get the cells collected. Secondly, though I hadn’t yet had to pay anything, we had used up about $7,000 worth of Neupogen, $4,000 of apheresis machine time, plus we’d been doing blood tests every day which I hadn’t yet paid for and I had heard I was probably going to have to pay for the bone marrow biopsy too. We could potentially be out thousands of dollars and we hadn’t really accomplished anything except gathering the very few cells we had gotten on the first day. What helped a lot, however, was that the docs said they would waive their fees for me, the hospital told me that since I didn’t have insurance for this they would “only” charge me $2,000 a day for the apheresis procedure, and that the clinic had given me three doses of the Neupogen for free, about $3,000 worth. I didn’t know what all the blood tests would cost, however.

That brings us up to today. I went back to work today, still feeling pretty tired from all the Neupogen I’d been giving myself. We had a relatively light day so I did okay despite my fatigue. The phone rang at about 10:30. It was the clerk from the appeals committee. She said that the committee had approved my request to have the company pay for the stem cell collection after all! That was great news. However, the bad news is that I don’t have any stem cells to collect right now.

So, I have been in contact with the transplant clinic again. We plan to try the apheresis again in two or three months, when my marrow will presumably have more stem cells. But we have to start from the beginning. I’ll have to have another bone marrow biopsy, all the lab tests will need to be done again, and I’ll have to start injecting another $4,000 worth of Neupogen. It’s just incredible to think that each injection is almost $1,000.

But now we have a plan in place, and I’ll have help in paying for the process. I don’t mind the wait too much, as long I don’t somehow relapse during that time. And that is not expected to happen. We’ll keep checking my white count each month until the next time we try to harvest the cells to see what they do. Oh yeah, I mentioned in my last letter that my white count had dropped down some more, unexpectedly, to around 2,200 or so. Well, after seven days, and $7,000 worth of Neupogen, my white count is up to 27,000! (Normal is up to about 10,000 or a bit more) I guess I’m not at too much risk of infection right now.

Well, that’s our latest adventure. And it’s plenty long enough so I’ll close while I still have a few readers who haven't drifted off to sleep. But, as Arnold Schwartzenegger says, in the movie “The Terminator,” “I’ll be back!”

Until later,


Sunday, February 2, 2003

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,