Wednesday, November 20, 2002


Dave’s Great Adventure
Chapter 5, Verse 2
November 20, 2002

Well, it’s been a week now since my doc told me that my bone marrow wouldn’t tolerate any more chemotherapy and left Kathy and me with nothing to do. We’d been planning our lives around these monthly infusions, so now, while we wait for my bone marrow to recover, we’re left with some open time. Like I reported last time, we’re going to get a couple of blood counts in the next few weeks, plus that ever-popular procedure, the bone marrow biopsy in about three weeks from now.

I need to update some information I sent out in my last letter. I said my white count had gone up to about 2,000. Well, since I have access to the computer with all the data, I looked up my last lab tests. Either Brian misread the numbers or Kathy and I misheard them, but my white count actually went up to over 5,000! Almost all of the increase was in neutrophils, most likely a result of the Neupogen I had been injecting. The net result is that my white count is normal...almost completely normal (except for very low lymphocyte counts), for the first time in many months. We need to see what it does over the next month or so, because as the Neupogen effect wears off, and my marrow recovers from the chemo, the numbers may change. But for now, the counts are normal, and my doc wrote in my chart that I was in “complete remission.”

That term, “complete remission,” is a very nice term to hear, indeed. That means I’ve made the first two cuts in the treatment of this disease. Many of you haven’t been on the DGA mailing list since the beginning, but early on I explained what we were trying to do with my therapy. There is really no known cure for this disease (chronic lymphocytic leukemia). There are various treatments, and they may extend longevity, but there is no cure. However, a very recent study from M. D. Anderson in Houston reported the results of using some combination chemotherapy, the Fludara and Cytoxan, which have been around for years, with a new drug, the Rituxan, which has only recently been approved for use, but was developed for use in treating lymphomas. Lymphomas and leukemias are not the same disease, but they share some characteristics, one of which is that many of the abnormal cells share a common antigen (a particularly shaped portion of the cell wall). In this case, the antigen is called the CD-20 antigen.

Rituxan is actually a mouse antibody against the CD-20 antigen, and allows the body’s own immune system to destroy the abnormal cells. In combination with the standard chemotherapy, the Fludara and Cytoxan, the folks at M. D. Anderson found that there was a much higher response rate and remission rate than with standard therapy. Where a good response rate in the past, with most drugs was about 20%, they were getting up to 90+% response rates with the new combination. And up to a third or more of the folks that responded with a complete or partial remission were negative for disease with some sophisticated molecular testing, about 18 months after the treatment. So, that’s why we were using this very new, and really, almost experimental, protocol. Now, being negative for the disease with the molecular testing (called a PCR probe) is very encouraging. That is not necessarily a cure, but it’s the best anyone has gotten so far!

So, the first test I passed was that I responded to the drugs. Some folks don’t. In some cases, patients with this disease had their leukemias get worse despite the treatment. A few died of their disease, a few died of the treatment! Luckily, I did neither.

Next, at least in the very, very short term (pending my bone marrow biopsy), I seem to be in a complete remission. That was the second test. Some of the folks who responded to the drugs got only a partial response and therefore a partial remission. I seem to be in the fortunate portion of the folks with a complete remission (keep your fingers crossed for the bone marrow results!).

Now, of the folks who got into a complete remission, over half (56%) were negative for the disease with the PCR probe. We won’t be able to do that test (I believe it’s a research tool) but if my bone marrow is negative for apparent leukemic cells, and the flow cytometry fails to find evidence of disease, there’s a good chance that I’ll be in that fortunate group. At least the odds are better than flipping a coin! I’ll take those odds, in a disease that has had no known cure in the past. I’ll keep you updated as more data becomes available.

So, Kathy and I have been trying to find things to do that don’t involve getting into too many crowds of people. Though my white count, for now, is pretty normal, I’m going to be immunosuppressed and therefore be unable to effectively fight off some infections for the next six to nine months. That’s because the lymphocytes we’ve been killing off include mostly the B lymphocytes, which are involved in antibody production. Anyway, in an attempt to get back into a normal routine, we went to church last Sunday, but as I did at the medical meeting in Maui, we sat at the far edge of the congregation, away from the mass of people. Just as in Maui, there was a lot of coughing going on.

It’s really interesting how many people you hear coughing or sneezing when you really, really don’t want to be near anyone with a cold. Kathy and I automatically look at each other in alarm whenever we hear a cough anywhere near us; in church, a restaurant, or a store. And I’ve become very sensitive to touching things that might carry viruses, like door handles, money, people’s hands, etc. I wash my hands all the time and we carry (which is to say, Kathy carries in her purse) a small bottle of the new waterless hand cleaner that kills viruses (it’s mostly alcohol) and we both use the stuff all the time. And I keep my hands away from my face, I keep my fingers out of my mouth, and I don’t bite my fingernails. I really don’t want to catch a cold. My doc says I won’t easily be able to shake it off if I get one. And catching the flu would be a big problem as I wouldn’t be able to mount an immune response to the virus. I didn’t get the flu shot for the same reason; I wouldn’t be able to produce antibodies to it anyway.

So, we’ve been working around the house, doing a little shopping, and starting to get back into somewhat of a normal routine after all these months of living around my chemo cycles. I’ve been able to start working out a little for the first time in months. We have a Nordic Track Cross-Trainer that I was exercising on three times a week up until I got sick last February. I haven’t done anything in months, even when I felt well, because I knew I was going to do more chemo every four weeks and get back out of shape, so I just stopped exercising entirely. Now I have no excuses, so I’m slowly starting to get back in shape.

Kathy and I have had a number of things we were going to do “some day.” Going to Hawaii was one of them. Another was to go to Alaska. We’ve decided that since the future is uncertain, we’re going to start doing those things now. There is a self-guided tour to Alaska that we had been looking at for a number of months, and this week we signed up for it. Next June, presuming I’m still doing well, we’ll be flying to Juneau, Alaska for an eleven day trip. I think this should be a very interesting trip; it includes whale watching, a helicopter ride up to a glacier, a float plane ride out to an island with a large number of bears and bald eagles, a train ride for a day, a whitewater rafting trip, and “flightseeing” with a bush pilot who will take us around Mount McKinley. That should be enough to keep us busy for the eleven days. Next, we’re looking at a trip to Antarctica, maybe next year!!!

Did anyone else get up to look at the Leonids meteor shower last night? Kathy and I got up at 3:00 AM and spent an hour out on the deck in sub-freezing temperatures watching the meteors. It was a pretty good show, but we had partly cloudy skies that obscured some of the meteors, and the quantity of meteors wasn’t near what it was last year. I think I was spoiled by last year’s show, where there were probably a couple of meteors per second, a real meteor “storm.” By comparison, this year’s display was more a like a meteor “drizzle” as we saw perhaps two to four meteors a minute. Still, it was a pretty good show.

I think I’ve gone on long enough for this “verse.” We’re going to try to go to Dallas and Oklahoma to visit Kathy’s parents and our kids over Thanksgiving week. I’ll let you know how our trip goes, and how my next blood tests turn out, in the next exciting verse!

Until then,


Wednesday, November 13, 2002

Chapter Five; Hawaii Was Great, But The Long Nadir....

Dave’s Great Adventure
Chapter 5, Verse 1
November 13, 2002
The Story...Continues??

Well, we’ve gotten back from our trip, and it’s time for another chapter to start, since I’ve been starting a new chapter with each round of chemotherapy. But, I really haven’t finished telling you about the events at the end of Chapter 4. We were getting ready to leave town, I was going to have to give myself those shots, and my white count was very, very low. Well, here’s what happened.

The night of the last “verse” I gave myself the first shot of Neupogen, as I had been taught to do. I didn’t do too badly, though docs are not taught how to give shots in medical school. It was kinda tough to actually stick the needle into my belly, but it didn’t hurt much and I got the job done. We got up at about 3:30 the next morning to catch a flight to LA that left at 6:55. Those of you who know Kathy well know that she always wants to get to the airport early so we won’t miss our flight. Well, we were sitting at the gate for our flight, all by ourselves, by about 5:30. We had plenty of time to eat a McDonald’s breakfast and read the paper! The plane left on time and we had a smooth flight to Los Angeles. I was paranoid about being around too many folks with my white blood cell count being so low, but on the flight to LA the plane was almost empty. We changed planes in LA and headed out to Maui, but this plane was full. Fortunately no one around us was coughing or sneezing too much.

We got to Maui on time and collected our luggage, finding that one of our suitcases had lost a wheel on the flight, so we couldn’t roll it along, but instead I had to carry the thing! But, we got our rental car and found our way to the hotel at which the conference was going to be held, the Maui Prince. It was interesting that, when I asked the clerk at the rental agency how far the hotel was, she gave us the answer, not in miles, but in minutes. That was to be a pattern. Rarely did people express distances in actual distance, but rather in the time it took to get somewhere. That turns out to be, I think, because traffic is very slow and the roads are very circuitous. Though actual straight line distances are not great (the whole island of Maui can’t be more than about twenty miles by thirty miles or so) it can take over an hour to travel twenty or thirty miles.

We checked into the hotel and found that it was very nice indeed. It was right on a soft beach with a gentle surf and lots of palm trees, flowers and birds. We also found out later that there were a lot of large sea turtles in the surf just off the beach. We were able to watch a large turtle one day, just about thirty feet off the beach, with a shell probably about 24 inches across and a head as large as my fist.

The hotel was a beautiful place, and is apparently a popular place for weddings. We must have seen at least five weddings of various sizes, during our stay. Kathy got her fill of checking out wedding dresses! I don’t know why women are so curious about what other women are wearing for their weddings. Anyway, we saw very large weddings with large receptions and music, and very small, private weddings with no one present except the bride and groom and the minister. At one wedding we witnessed, the bride and groom were standing alone on the beach with the minister saying their vows. There was no wedding party at all. The groom was quite a bit shorter than the bride, and so was standing on a small mound of sand to make him appear about the same height as his bride, at least for the photographer!

The meeting, which was the main reason we were in Maui, turned out to be an excellent educational meeting with excellent topics and experts on a wide variety of subjects. I was, again, a bit nervous about being in a large group of people, and the meeting was actually larger than I had thought it would be (about 200 people) so I tended to go in and get a seat all the way to one side of the room, rather than being surrounded by people. There was a fair amount of coughing going on, and I tried to stay away from anyone that appeared to be sick.

I was also restricted in my activities, because of my therapy and low counts. The chemotherapy made me photosensitive, so I couldn’t get much sun. And with my white counts being so low, I couldn’t eat fresh fruits and vegetables nor could I engage in, well, I’m not sure I can say it in a family publication, so I’ll just whisper it (we couldn’t have S-E-X). You know, because of germs and stuff.

Our son-in-law suggested that going to Hawaii with those restrictions was like taking a blind man to a strip show!

But we had a good time, nevertheless. The meeting was set up to run just in the morning and the daily sessions were generally over by about 1:00. That gave us the afternoons to do things. So we set about supporting the economy of Maui. The island is just beautiful, and we spent one afternoon just driving around seeing things and places that my excellent nurse, Debbie (who had lived on Maui) recommended. Then one morning, a day the meetings were held in the afternoon, we went on a helicopter ride around the island. We’d never done that before, and though I rode on lots of helicopters in Vietnam, I generally don’t like small aircraft. They tend to crash too frequently. Plus they tend to be way too expensive. But I have a new outlook on life now, and a different perspective on things. When you’re likely to have only five years left to live, and only that length of time to try to use your retirement money, things look different. If you crash, well, it was probably meant to be, and what is money for, if not to be enjoyed. I’ve been trying to save all my life; now it’s time to try to enjoy some of it while I can.

And one day we went out on a submarine ride. A group of about 20 folks signed up for the sub ride, and we were taken down to about 150 feet to a few coral reefs to see the fish swimming around. We were able to look out the portholes and see the underwater wildlife and take pictures. There was nothing too spectacular, but it was fascinating just to be there.

We went shopping, ate out too often and just had a good time being together. It was rather like a honeymoon, but in reverse, if you will. Generally a honeymoon is when you start your married life. We were there in what, unfortunately, may be the end stage of our married life, but it was beautiful, none the less. We spent a lot of time holding hands and just looking at each other and the soft green scenery. It was good for us.

Next I want to take Kathy to Alaska! Maybe this summer.

Kathy was watching out for me the whole time, guarding me from the dangers all around. She watched what I ate, kept me away from folks who were coughing and did most of the things that required interacting with groups of people. One day I joked that I was going to eat a big bowl of fresh fruit at the meeting, and she got teary-eyed! So I couldn’t eat the fruit! Because of the dietary limits, I ate mostly cheeseburgers and fish and chips, and occasionally other fish meals. And I gained a little weight.

I attended every meeting during our time in Maui. It was good to hear experts telling us that estrogen really doesn’t become a toxic substance to women just because they turn fifty, as many of the lay media would have us believe. And we were taught more about osteoporosis, breast cancer, abnormal pap smears and more. It was the best educational meeting I’ve been to in a long time. And when it was over, we headed home.

The ride home was tough, worse, I think, than the ride to Germany. The plane left Maui at 10:00 at night. Care to guess when we were at the airport? That’s right, we were there at 6:00! There was only one other couple at our gate, and they were coughing, so Kathy took me to the far end of the terminal where there were no other people and we spent time there, reading and talking. The plane left on time, and got to LA about four hours later, at 4:15 AM, where we had to change planes and had about a two hour layover. Then we boarded the plane to Denver, getting here at about 9:30 or so. The reason the plane ride was so tough is the layover in LA. On the flight to Germany, though it is longer, you can sleep. We had no real good length of time on this trip in which to sleep.

Before we went home, I went by the clinic to get a blood count done because my doc needed to see what my blood counts were by the next day before deciding what we were going to do. Then we spent the rest of the day doing errands. And that’s the end of Chapter 4.

CHAPTER FIVE: Yesterday Kathy and I got ready for the next round of chemo. We packed up all the stuff we’ve found we need for those days. Since yesterday was to be a Rituxan day (a long day), Kathy had lunches made for us, I had my CD player and my reading material, and Kathy brought along the quilt we’re STILL working on for Brooke, our younger granddaughter. We got to my doc’s office on time and he got there just a bit late, after making his hospital rounds. Brian pulled up my blood count from the day before, which I hadn’t yet seen, and gave us the news. It was kinda like a good news/bad news, or maybe a good news/good news result. First, the Neupogen worked well. My neutrophils had gone up from close to zero (remember, they were at 200 with normal being 150 to 7500) to 3000; they were back in the normal range. However, my platelets had dropped to 110,000 from 200,000, and my total white count was still only 2,000. Other good news was that my lymphocytes (among which the leukemic cells hide out) had stayed down at 300. The bottom line was that after four weeks since my last infusions, I was still in a nadir! My stem cells, the cells in the bone marrow that create all the other cells, were pleading for mercy! They are pretty well depleted and not able to recover as they had during the first three cycles. As my doc said, “We’ve knocked off so many cells that now we’re just beating the crap out of the good cells!”

So, he is stopping the chemotherapy after just the four cycles I’ve had. I’m not sure what to think of this development. In theory, if we’ve gotten to the point that we’re killing off normal cells, then the leukemic cells, which should be more sensitive to the drugs, should be gone. In theory! On the other hand, if even two or three leukemic cells remain, they can come back. I’ve been happy that we’ve been on the offensive in the fight against this disease. Now we’re going to be passive again. If I can, I’m going to try to talk him into giving me a couple of more cycles later, but I guess we have to be careful...I do need to have some marrow cells left at the end of the treatment.

I asked what we’d do next. Well, we’re going to do another blood count in a couple of weeks, to see if my marrow is recovering, then one more two weeks later, with another bone marrow biopsy at that time. The bone marrow biopsy will tell us if we seem to have cleaned out the marrow. He’s going to have them run a flow cytometry (remember that test from the early DGA letters?) and see if they can detect any leukemic cells. And then? Brian said we’d watch and wait. In other words, we’ll just do blood counts and see what happens to my white cell counts. And if they go up, we’ll have to see what might be available because as of right now, there is no other real treatment.

And so, that’s the end of this verse. We’re going to follow my blood counts for a while and when they get back close to normal I can go back to work, probably some time in December or by early January, at the latest, though Brian said that this time of year is a bad time to go back, with all the coughs and colds and with the influenza season about to start. But, if we can screen out the sick patients, I should do pretty well.

That’s about all for now. I’ll be back if/when anything significant happens.



Monday, November 4, 2002

A Low White Count Supplement

Dave’s Great Adventure
Chapter 4, Verse 4
November 4, 2002
A Supplement

I thought I’d send out just a short update to let you kind readers know what happened to my white count and what we’re doing about it. I believe at the end of my last “episode” I said we’d be getting another white count on Friday (November 3) and see if I needed any treatment.

I had the blood drawn Friday morning, but the lab was having some trouble with their auto analyzers so we didn’t get the results until late Friday evening, just at quitting time. My doc had left work by then, but the counts were roughly the same, but just up slightly. My white count had gone up to 1,500 from 1,100, and my neutrophils, more critical at this time, had edged up just slightly, to 200, still critically low. I was feeling well, and so I waited until Monday to see what we needed to do. Meanwhile we had Kathy’s sisters and their spouses visiting at the house for the weekend. One of the sisters had a little cold, with a scratchy throat and a little cough, so we tried to avoid getting too close to each other during the weekend, and we spent our time sucking zinc lozenges and taking echinacea tablets (do they REALLY do anything?). So far I seem to have avoided any signs of having contacted her virus.

Today I got a call from my doc. He’s concerned that my white count didn’t recover any better than it did, so he wants me to take the Neupogen, the medicine I mentioned to you in the last letter. Neupogen is a growth factor that promotes the growth of neutrophils. It also has to be given by injection, so I had to go to the clinic today to learn how to give myself injections of the stuff for the next five days. It shouldn’t be too awfully difficult for me to do. They fixed me up with all the syringes and needles I’ll need for the five day course of the medicine.

Did I mention that five days of the stuff cost almost $1000! One vial a day, at almost $200 each. Of course, it’s important stuff, since I really need those neutrophils.

Brian said we can still go to Hawaii. There is a Kaiser (the company I work for) clinic not too far from the hotel where we’ll be staying, so I will know where to go for help if I start feeling sick. However, you may remember some of the dietary restrictions I have during my nadir times, right? No fresh fruits and vegetables?? Well, that will apply to me throughout our time in Hawaii since my white counts are so low. So, I’ll be in a tropical paradise, surrounded by fresh fruits and juices, and won’t be able to eat any of them! I guess I’ll just have to have bacon, eggs and potatoes for breakfast everyday.

When I get back I’ll have another blood count done to see if my marrow has recovered enough to get the next round of chemo. There is a good chance that I’ll have to wait an extra week or more before I can have the next round, since my stem cells in my marrow seem to be so depleted right now. I hope we don’t have to wait, but I guess I don’t really want to wipe out my marrow either!

Anyway, tonight I give myself my first shot of the Neupogen at bedtime and then we get up about 3:00 AM tomorrow to catch a 6:55 AM flight to Los Angeles. Then we catch another flight from there to Maui, which will arrive about noon, local time. We’ll be plenty tired by tomorrow afternoon. Temperatures in Hawaii lately have been about 85 (29 C) degrees during the day and about 78 (25 C) at night. Eat your heart out, you folks in Iowa, Colorado and Illinois! We’ll get another letter out when we get back, or within a day or two, and let you know how we did and what we’re going to do about the next round of chemo.