Dave’s Great Adventure
Chapter 5, Verse 3
December 4, 2002
Still Doin’ Okay
Well, this “adventure” has suddenly become quite boring, with not much going on, at least as far as the treatment and follow-up of my disease goes. But we’re still plodding along and using our time before I go back to work to see family and friends. But I did have another blood count last week that I’d like to update you on.
But first, in my last letter I reported that my white count was up to over 5,000 and was normal for the first time since we found out that I had leukemia. That prompted a good question from my family in Rock Hill, SC, who asked why my count, at 5,000, was normal, when my count at 5,000, last July after the very first round of chemotherapy, was not normal. The answer is that last July my total count went down from about 65,000 to about 5,000 after the drugs, but the percent of lymphocytes was still about 85%. Now, when my count went UP to 5,000 last week (after the Neupogen injections) the percent of lymphocytes was only about 8% or so. And since all the bad cells are lymphocytes, having a normal lymphocyte count and percentage put me into the definition of being in remission.
Now, a week ago last Monday I had blood drawn again. As expected, my white cell count went down again as the Neupogen effect wore off, this time to 2,100. That’s lower than I had expected, but I guess about what my doc had expected. Now what I don’t know is, that since my neutrophil count dropped so dramatically, but my lymphocyte count remained the same (at 500), the ratio of the lymphocytes to neutrophils and the other cells has now gone back up! Now my lymphocytes are about 23% of my white cells. That’s not normal. So am I in a complete remission now or not? I’ll have to ask my doc next week when I have my bone marrow biopsy.
Speaking of lymphocytes, with the four months of chemotherapy we killed off over 99% of them, dropping their numbers from about 56,000 or more, down to 500! I’m impressed that the chemotherapy could be so specific as to target the lymphocytes accurately enough to do that without also killing off 99% of my red cells, platelets and everything else. And that’s enough technical, medical talk for today!
Hey, I’ve gotten a lot of people asking me the same question: “What, Antarctica? Are you crazy?” Well, I’ve got this great brochure that describes some trips/cruises to Antarctica and I think they sound like a lot of fun. My wife, who doesn’t “do” cold weather very well, remains unconvinced, but I think she’ll go along. Cold is all in your mind. I’ve been reading Sir Ernest Shackleton’s book, “South,” based on his ill-fated voyage to Antarctica in 1914. At one point he notes, in his ship’s log, “Temperature 37 degrees Fahrenheit, pleasantly warm.” My wife does not think that 37 degrees is warm at all! The cruises go to visit penguin rookeries (I guess they’re places where they hatch their young), the old whaling stations in South Georgia, Shackleton’s grave, near the whaling stations, glaciers, ice cliffs and more. And we will get to land on and walk around on Antarctica! I think that sounds neat! How many of you have done that?
Over the last week Kathy and I were able to travel to Oklahoma and Texas, taking our first driving trip in quite a while. In Oklahoma we visited and had Thanksgiving dinner with Kathy’s folks and youngest sister. Then we headed south to visit our daughter Jen, her family and our younger son, Jeremy and his girlfriend. We were able to see my younger sister Deb and her family as well, as they were visiting in town from California just for Thanksgiving Day. They came for the Dallas football game, which Dallas actually won! After a couple of days in the Dallas area with the grandkids (have I ever told you that they are sooo cute!) we headed back north again to see Kathy’s folks again before returning home. While in Oklahoma we picked up a couple of things from her folks. They are moving to a retirement home soon and are downsizing all the things they have collected in their home over the last 35 years so we brought home a cedar chest Kathy’s granddad made in 1938. We also brought back a picture Kathy’s dad had gotten from a prisoner/artist who painted it while in the prison in Anthony, Texas, where Kathy’s dad worked for many years while with the Federal Bureau of Prisons.
This weekend we’ll have some houseguests. Our elder son is coming for a short visit and is bringing along his girlfriend. That’s going to be fun. Jon’s girlfriend, Natalie, has never been to Colorado so we’re going to try to give her a real Rocky Mountain experience. The mountains beckon....
I think that’s all that might be of some interest to you. I’ll be back with another update next week after the bone marrow biopsy and yet another blood count to let you know how I’m doing and what our short term plans are. Until then, this adventure just keeps plodding along.
Later,
Dave
Wednesday, December 4, 2002
Wednesday, November 20, 2002
Remission?
Dave’s Great Adventure
Chapter 5, Verse 2
November 20, 2002
Remission?
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,
Dave
Chapter 5, Verse 2
November 20, 2002
Remission?
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,
Dave
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.
Later,
Dave
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.
Later,
Dave
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.
Later,
Dave
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.
Later,
Dave
Thursday, October 31, 2002
Low White Cell Counts, and Hat Tricks
Dave’s Great Adventure
Chapter 4, Verse 3
October 31, 2002
It’s limbo time....
My apologies to anyone younger than 30 or older than 60 who has no idea what the limbo is. It was (is?) a “dance” that was popular in the 60s (coming over from the Caribbean islands) during which people tried to get under a stick that was progressively lowered after each try. The DJ at the dance would say, over and over, “How low can you go?”
That’s the question we’re asking right now. I had a blood count done at my nadir, last Friday (five days ago, now), and got the results back Tuesday. My counts, which had been doing okay, have sort of fallen off the edge of a cliff. Actually, my red cell count is still very normal, but my platelets are down to 126,000. That’s sub-normal, but not dangerous. However, my white cell count is concerning now. It has been in the 2,500-3,000 range, low but adequate. Suddenly, it’s only 1,100. And my neutrophils, the “good guys,” have dropped to 100! That’s damned near zero, the way I see it. It looks like my marrow, where the cells are made, is surrendering to the chemotherapy, having been blasted so many times in the last four months! So, because my white counts are so very, very low, Kathy has me quarantined in the house to keep me away from crowds. I’m very susceptible to just about any kind of bacteria or viruses at this point. I also cancelled just about all the work I had been able to arrange in the clinic for the next couple of months. You know, sick people tend to congregate there! I probably shouldn’t spend much time there if I can avoid it.
I don’t really know if I should travel. I’ve called my doc’s personal message number a little while ago and asked about that but haven’t gotten an answer yet. Since I’m still in even more of a nadir, or low point, than usual, I still can’t eat fresh vegetables, fruits, etc. The nurse I talked to at the Oncology clinic also said I need to practice good hand washing, take my temperature if I think I have any signs of a fever, and avoid sex! Well, that wasn’t much of an issue anyway. I guess she’s telling me that sex really is “dirty!”
Hey, I found out where the term “hat trick” came from. None of the sports savvy members of my family came up with any information, but Kathy’s sister Sharon in Bozeman, Montana and her uncle Jim Griffith in Arizona both sent me the derivation of the term. We all knew that is was some sort of ice hockey term for getting three goals in one game. Well, it turns out that before it was an ice hockey term, it was a cricket term in England. It dates from about 1877 and was used to describe taking three wickets off with three successive bowls (whatever that means). This entitled the bowler to receive a hat from his cricket club to commemorate the achievement. By 1909 it was being used in other sports as well to describe getting three of anything in one game. So, there you have it!
So where were you in 1988? Back when my pills were new. Natalie Campos, our son Jon’s girlfriend, wrote in to say that in 1988, when our eldest was starting college, she was starting middle school! I guess the age difference would have made quite a difference then, but means nothing now. By the way, Natalie, my neutrophils are still waiting for those jokes! They didn’t get here in time. (I’m making reference to a line from several DGAs ago in which Natalie had written that she’d tell jokes to my neutrophils since they were “depressed.”)
Our son-in-law Dan wrote to me to suggest that if I in fact elected to die in our home that Kathy could tell prospective buyers that there was a friendly Gyne (Frauenarzt) ghost in the house who would do pap smears for the new inhabitants! Hmmm, I wonder if that would make them feel better or worse!
Our friend Claudia Koetzle in Germany, who lives in the little town of Dettenheim, not too far from Karlsruhe, wrote another nice letter after she and her SF 49ers-loving husband Mike got back from a vacation in southern France. She had written in several months ago after I trashed (schmaehen) Las Vegas to add her comments. She and Mike have been to America several times to visit our wonderful national parks. They’ve probably seen more of them that we have. Anyway, they visited Las Vegas a few years ago and she had to admit that they had walked around taking pictures of the outrageous hotels. The way she so accurately put it, it was amazing to see what could be done in the absence of any common sense and against all obstacles! As an example, all the fountains in the middle of the desert!
I just got a call back from my doc. He’s not too worried about my low counts. He says I can still travel, and that I should get another blood count tomorrow. If it’s still very low, we can try some stuff called Neupogen, a medicine that boosts the production of neutrophils, before I travel.
Well, today is Halloween. There is snow on the ground here as there seems to be just about every Halloween since we moved here. All the little kids who come around for candy are always so cold that most of the Trick-or-Treat-ing is over by about 7 PM or so. Speaking of Halloween, Claudia notes that it’s getting to be a big thing in Germany too, in recent years. Halloween is an American tradition that adults are adopting, as all American are aware. Well, the Americans in Germany brought the tradition to Germany and we often had German kids coming to our door looking for candy on Halloween. In fact, the Americans had a great big Halloween party at the Frankenstein castle in Darmstadt (south of Frankfurt) for many years until it became too, too popular and unmanageable. Well, now Claudia says it’s being promoted by the folks who manufacture costumes and decorations and folks get together in their Halloween garb, drink too much and do stupid things. Sounds like an American tradition, all right!
Kathy just yelled for me to look out the back window. There was a big, beautiful coyote (Steppenwolf) in our back yard. It looked like it was trying to find some rabbits or birds for lunch. In the absence of wild fare, they also start looking for dogs and cats left outside. We lose a lot of small animals in the neighborhood to the coyotes, especially to people new to the neighborhood who don’t realize the dangers of leaving their pets outside.
I guess that is all for now. We will be having company in the house for the next three days and then we’ll hopefully be going to Hawaii, so I probably won’t get another update out until after about November 11th or so.
Bye for now....
Dave
Chapter 4, Verse 3
October 31, 2002
It’s limbo time....
My apologies to anyone younger than 30 or older than 60 who has no idea what the limbo is. It was (is?) a “dance” that was popular in the 60s (coming over from the Caribbean islands) during which people tried to get under a stick that was progressively lowered after each try. The DJ at the dance would say, over and over, “How low can you go?”
That’s the question we’re asking right now. I had a blood count done at my nadir, last Friday (five days ago, now), and got the results back Tuesday. My counts, which had been doing okay, have sort of fallen off the edge of a cliff. Actually, my red cell count is still very normal, but my platelets are down to 126,000. That’s sub-normal, but not dangerous. However, my white cell count is concerning now. It has been in the 2,500-3,000 range, low but adequate. Suddenly, it’s only 1,100. And my neutrophils, the “good guys,” have dropped to 100! That’s damned near zero, the way I see it. It looks like my marrow, where the cells are made, is surrendering to the chemotherapy, having been blasted so many times in the last four months! So, because my white counts are so very, very low, Kathy has me quarantined in the house to keep me away from crowds. I’m very susceptible to just about any kind of bacteria or viruses at this point. I also cancelled just about all the work I had been able to arrange in the clinic for the next couple of months. You know, sick people tend to congregate there! I probably shouldn’t spend much time there if I can avoid it.
I don’t really know if I should travel. I’ve called my doc’s personal message number a little while ago and asked about that but haven’t gotten an answer yet. Since I’m still in even more of a nadir, or low point, than usual, I still can’t eat fresh vegetables, fruits, etc. The nurse I talked to at the Oncology clinic also said I need to practice good hand washing, take my temperature if I think I have any signs of a fever, and avoid sex! Well, that wasn’t much of an issue anyway. I guess she’s telling me that sex really is “dirty!”
Hey, I found out where the term “hat trick” came from. None of the sports savvy members of my family came up with any information, but Kathy’s sister Sharon in Bozeman, Montana and her uncle Jim Griffith in Arizona both sent me the derivation of the term. We all knew that is was some sort of ice hockey term for getting three goals in one game. Well, it turns out that before it was an ice hockey term, it was a cricket term in England. It dates from about 1877 and was used to describe taking three wickets off with three successive bowls (whatever that means). This entitled the bowler to receive a hat from his cricket club to commemorate the achievement. By 1909 it was being used in other sports as well to describe getting three of anything in one game. So, there you have it!
So where were you in 1988? Back when my pills were new. Natalie Campos, our son Jon’s girlfriend, wrote in to say that in 1988, when our eldest was starting college, she was starting middle school! I guess the age difference would have made quite a difference then, but means nothing now. By the way, Natalie, my neutrophils are still waiting for those jokes! They didn’t get here in time. (I’m making reference to a line from several DGAs ago in which Natalie had written that she’d tell jokes to my neutrophils since they were “depressed.”)
Our son-in-law Dan wrote to me to suggest that if I in fact elected to die in our home that Kathy could tell prospective buyers that there was a friendly Gyne (Frauenarzt) ghost in the house who would do pap smears for the new inhabitants! Hmmm, I wonder if that would make them feel better or worse!
Our friend Claudia Koetzle in Germany, who lives in the little town of Dettenheim, not too far from Karlsruhe, wrote another nice letter after she and her SF 49ers-loving husband Mike got back from a vacation in southern France. She had written in several months ago after I trashed (schmaehen) Las Vegas to add her comments. She and Mike have been to America several times to visit our wonderful national parks. They’ve probably seen more of them that we have. Anyway, they visited Las Vegas a few years ago and she had to admit that they had walked around taking pictures of the outrageous hotels. The way she so accurately put it, it was amazing to see what could be done in the absence of any common sense and against all obstacles! As an example, all the fountains in the middle of the desert!
I just got a call back from my doc. He’s not too worried about my low counts. He says I can still travel, and that I should get another blood count tomorrow. If it’s still very low, we can try some stuff called Neupogen, a medicine that boosts the production of neutrophils, before I travel.
Well, today is Halloween. There is snow on the ground here as there seems to be just about every Halloween since we moved here. All the little kids who come around for candy are always so cold that most of the Trick-or-Treat-ing is over by about 7 PM or so. Speaking of Halloween, Claudia notes that it’s getting to be a big thing in Germany too, in recent years. Halloween is an American tradition that adults are adopting, as all American are aware. Well, the Americans in Germany brought the tradition to Germany and we often had German kids coming to our door looking for candy on Halloween. In fact, the Americans had a great big Halloween party at the Frankenstein castle in Darmstadt (south of Frankfurt) for many years until it became too, too popular and unmanageable. Well, now Claudia says it’s being promoted by the folks who manufacture costumes and decorations and folks get together in their Halloween garb, drink too much and do stupid things. Sounds like an American tradition, all right!
Kathy just yelled for me to look out the back window. There was a big, beautiful coyote (Steppenwolf) in our back yard. It looked like it was trying to find some rabbits or birds for lunch. In the absence of wild fare, they also start looking for dogs and cats left outside. We lose a lot of small animals in the neighborhood to the coyotes, especially to people new to the neighborhood who don’t realize the dangers of leaving their pets outside.
I guess that is all for now. We will be having company in the house for the next three days and then we’ll hopefully be going to Hawaii, so I probably won’t get another update out until after about November 11th or so.
Bye for now....
Dave
Sunday, October 27, 2002
Nadir Time and Old Pills
Dave’s Great Adventure
Chapter 4, Verse 2
October 26, 2002
Nadir Time
Well, I’m in my nadir now...you know, my Ralph (Nader), a pun so stretched that even my English speaking correspondents didn’t know what I was talking about. My nadir is when my blood counts are probably at their lowest in between rounds of chemotherapy. Curiously, I reach my nadir just about the time I start to feel reasonably well after the preceding round of drugs. That’s kinda perverse. I get stuck in the house for days at a time after the chemo, because I feel so lousy, but then when I start feeling better, I’m at my immunologically weakest point and am most at risk from colds or other environmental pathogens (bad germs and viruses). So I really can’t safely mix with crowds. And this is also the time when I can’t eat fresh fruits and vegetables unless they can be scrubbed or peeled, so my diet is a bit limited as well. Oh well, I can stand it.
After the last round of chemo I was, as usual, wiped out for a number of days. Since I can’t go out on the hammock any more (it’s been put away for the winter) I spend a lot of time on the couch in the family room, taking up space and limiting Kathy’s ability to use the room for watching TV, etc. The worst days are usually the Friday through Monday or Tuesday following the drugs. That really impacts on my ability to follow the football games on Sunday! I actually dozed through the first quarter of the Broncos’ game last Sunday, but was awake enough to see them win in overtime against the hated Kansas City Chiefs. Kathy once again brought me some hot wings (Hahnchen Flugel mit pikante Soss!) to eat during the game since that is the time my mouth is most “coated” and less sensitive to mild flavors.
As I recover from each round of chemo I frequently get fooled into thinking I’m stronger than I really am. Many times I’ve gotten up and felt just great, only to find that I’m still pretty weak once I try to get around the house and do something. This happened again last Tuesday but with another, new problem thrown in for good measure.
I got up about 9:00 AM, which is really somewhat early for being just five days out from the last day of infusions. I took a bath, and while in the tub was feeling good; not tired, weak, etc. After I got out of the tub I spent about a half hour dipping water out of the tub with the watering can and watering the plants all over the house (we‘re still in a drought situation here in Denver). This required going up and down the stairs several times. I got a little tired, but nothing too bad. But now my head was hurting some, so I took my usual headache medications, and the headache slowly subsided.
Before lunch my stomach started cramping a little, nothing really bad, but enough to bother me. This has never happened to me before during my previous rounds of chemo. I thought that if I just got some food into it I’d feel better. I felt like getting out of the house by then anyway, since I’d been cooped up for several days, so we went out to a local Chinese food place, and I got a dish of chicken curry. Bad mistake. The cramps got worse and caused a lot of gas buildup! When I got home I started looking for meds to try to make me feel better, but the usual stuff, Mylanta, etc., didn’t do much good. The mild cramps continued through the afternoon and into the evening, through a fairly bland dinner. We went to bed about 10:00 PM and I was still cramping, but I didn’t know from what. The cramps kept up through the night and I could not sleep. In desperation I rummaged through the medicine cabinet to see what I could find. I came across a bottle of Donnatol! Just what I needed! Donnatol is a combination of belladonna alkaloids and phenobarbital, and is specifically made to stop abdominal cramping. The bottle said it had been dispensed in 1988! Really, 1988!
Where were you in 1988? In 1988 I was driving a snazzy green Porsche, our eldest had just started college in El Paso and we were living in Stuttgart, Germany. Ronald Reagan was president and he still knew his name. We’d never heard of Osama bin Laden or al-Queda, and for that matter, we’d never heard of Bill Clinton (God, to be able to go back in time!). These pills had made several moves with us, for some reason, from Germany to El Paso and then to Colorado.
I looked at the pills and looked at the date on the bottle. The pills looked okay, I mean, they weren’t brown and crumbly or anything. I looked at them again, looked at the date on the bottle, and then looked at the time. It was four in the morning and my belly was hurting. I took the pills. They worked and I finally got to sleep.
I guess I really ought to replace those pills, huh?
You know, I guess I must be doing okay. Whenever I see friends or colleagues whom I haven’t seen in a while, I always get the same greeting: They always say “You look GOOD!” almost in surprise. I think most folks that go through chemo lose a lot of weight and hair, but since I’ve maintained my weight with a diligent diet of frozen custard, hot wings and nachos, and since most of my hair is still in place, I suppose I don’t look like the average chemo patient. And that’s okay.
Last Friday evening, just as I was getting into my really low point, some old friends came through town. Alta Bailey and her daughter Kristen came through Denver en route to Utah where they were going to visit Moab, the Arches and more. (Our friends from Germany, the Koetzles, have been there and have been encouraging us to go too, but we haven’t made the short trip out there yet.) Anyway, Alta’s husband, Don, and I were first cousins, once removed, and were the family’s genealogists. We spent a lot of time digging up family roots and traipsing through cemeteries looking at old gravestones, filling out the family tree. Sadly, Don died a few years ago of pulmonary fibrosis but we’ve stayed in touch with Alta. We went over to their motel to visit but after about ninety minutes I was just too tired to be able to follow the conversations, so we left and came back home. It was nice to see them however, even if for just a short time.
In just my most recent letter I was thinking about end-of-life scenarios and wondering what I should do. I mentioned, briefly, “Perhaps a hospice?” Well, wouldn’t you know, two days later I got a letter in the mail from the Denver Hospice Association asking for donations. Man, what a network they must have!
I want everyone to know that I’m STILL getting cards everyday from my friends at work. And when I can’t get a card because of a weekend or holiday, our friends the Henefelds make sure I get an e-card. Joan Henefeld is sticking to her “mantra” of sending daily good thoughts and wishes and my wonderful nurse, Debbie, is right behind her, even though she’s got five kids to care for. And then I get a card or two every week from other folks too. I have the absolute BEST co-workers.
I was going to try to get in to the clinic to work a couple of days next week but I’m having trouble doing so again. They may not be able to accommodate me on the days I could work, because they don’t have enough nursing help (male gynecologists are labor intensive as we require an attendant, or “chaperone“ for just about everything we do), so I probably won’t be able to work again next month. Oh well, I’ll just burn a couple more sick days.
So, until later, I’ll put this letter “to bed” and get it into your e-mail in basket!
Dave
Chapter 4, Verse 2
October 26, 2002
Nadir Time
Well, I’m in my nadir now...you know, my Ralph (Nader), a pun so stretched that even my English speaking correspondents didn’t know what I was talking about. My nadir is when my blood counts are probably at their lowest in between rounds of chemotherapy. Curiously, I reach my nadir just about the time I start to feel reasonably well after the preceding round of drugs. That’s kinda perverse. I get stuck in the house for days at a time after the chemo, because I feel so lousy, but then when I start feeling better, I’m at my immunologically weakest point and am most at risk from colds or other environmental pathogens (bad germs and viruses). So I really can’t safely mix with crowds. And this is also the time when I can’t eat fresh fruits and vegetables unless they can be scrubbed or peeled, so my diet is a bit limited as well. Oh well, I can stand it.
After the last round of chemo I was, as usual, wiped out for a number of days. Since I can’t go out on the hammock any more (it’s been put away for the winter) I spend a lot of time on the couch in the family room, taking up space and limiting Kathy’s ability to use the room for watching TV, etc. The worst days are usually the Friday through Monday or Tuesday following the drugs. That really impacts on my ability to follow the football games on Sunday! I actually dozed through the first quarter of the Broncos’ game last Sunday, but was awake enough to see them win in overtime against the hated Kansas City Chiefs. Kathy once again brought me some hot wings (Hahnchen Flugel mit pikante Soss!) to eat during the game since that is the time my mouth is most “coated” and less sensitive to mild flavors.
As I recover from each round of chemo I frequently get fooled into thinking I’m stronger than I really am. Many times I’ve gotten up and felt just great, only to find that I’m still pretty weak once I try to get around the house and do something. This happened again last Tuesday but with another, new problem thrown in for good measure.
I got up about 9:00 AM, which is really somewhat early for being just five days out from the last day of infusions. I took a bath, and while in the tub was feeling good; not tired, weak, etc. After I got out of the tub I spent about a half hour dipping water out of the tub with the watering can and watering the plants all over the house (we‘re still in a drought situation here in Denver). This required going up and down the stairs several times. I got a little tired, but nothing too bad. But now my head was hurting some, so I took my usual headache medications, and the headache slowly subsided.
Before lunch my stomach started cramping a little, nothing really bad, but enough to bother me. This has never happened to me before during my previous rounds of chemo. I thought that if I just got some food into it I’d feel better. I felt like getting out of the house by then anyway, since I’d been cooped up for several days, so we went out to a local Chinese food place, and I got a dish of chicken curry. Bad mistake. The cramps got worse and caused a lot of gas buildup! When I got home I started looking for meds to try to make me feel better, but the usual stuff, Mylanta, etc., didn’t do much good. The mild cramps continued through the afternoon and into the evening, through a fairly bland dinner. We went to bed about 10:00 PM and I was still cramping, but I didn’t know from what. The cramps kept up through the night and I could not sleep. In desperation I rummaged through the medicine cabinet to see what I could find. I came across a bottle of Donnatol! Just what I needed! Donnatol is a combination of belladonna alkaloids and phenobarbital, and is specifically made to stop abdominal cramping. The bottle said it had been dispensed in 1988! Really, 1988!
Where were you in 1988? In 1988 I was driving a snazzy green Porsche, our eldest had just started college in El Paso and we were living in Stuttgart, Germany. Ronald Reagan was president and he still knew his name. We’d never heard of Osama bin Laden or al-Queda, and for that matter, we’d never heard of Bill Clinton (God, to be able to go back in time!). These pills had made several moves with us, for some reason, from Germany to El Paso and then to Colorado.
I looked at the pills and looked at the date on the bottle. The pills looked okay, I mean, they weren’t brown and crumbly or anything. I looked at them again, looked at the date on the bottle, and then looked at the time. It was four in the morning and my belly was hurting. I took the pills. They worked and I finally got to sleep.
I guess I really ought to replace those pills, huh?
You know, I guess I must be doing okay. Whenever I see friends or colleagues whom I haven’t seen in a while, I always get the same greeting: They always say “You look GOOD!” almost in surprise. I think most folks that go through chemo lose a lot of weight and hair, but since I’ve maintained my weight with a diligent diet of frozen custard, hot wings and nachos, and since most of my hair is still in place, I suppose I don’t look like the average chemo patient. And that’s okay.
Last Friday evening, just as I was getting into my really low point, some old friends came through town. Alta Bailey and her daughter Kristen came through Denver en route to Utah where they were going to visit Moab, the Arches and more. (Our friends from Germany, the Koetzles, have been there and have been encouraging us to go too, but we haven’t made the short trip out there yet.) Anyway, Alta’s husband, Don, and I were first cousins, once removed, and were the family’s genealogists. We spent a lot of time digging up family roots and traipsing through cemeteries looking at old gravestones, filling out the family tree. Sadly, Don died a few years ago of pulmonary fibrosis but we’ve stayed in touch with Alta. We went over to their motel to visit but after about ninety minutes I was just too tired to be able to follow the conversations, so we left and came back home. It was nice to see them however, even if for just a short time.
In just my most recent letter I was thinking about end-of-life scenarios and wondering what I should do. I mentioned, briefly, “Perhaps a hospice?” Well, wouldn’t you know, two days later I got a letter in the mail from the Denver Hospice Association asking for donations. Man, what a network they must have!
I want everyone to know that I’m STILL getting cards everyday from my friends at work. And when I can’t get a card because of a weekend or holiday, our friends the Henefelds make sure I get an e-card. Joan Henefeld is sticking to her “mantra” of sending daily good thoughts and wishes and my wonderful nurse, Debbie, is right behind her, even though she’s got five kids to care for. And then I get a card or two every week from other folks too. I have the absolute BEST co-workers.
I was going to try to get in to the clinic to work a couple of days next week but I’m having trouble doing so again. They may not be able to accommodate me on the days I could work, because they don’t have enough nursing help (male gynecologists are labor intensive as we require an attendant, or “chaperone“ for just about everything we do), so I probably won’t be able to work again next month. Oh well, I’ll just burn a couple more sick days.
So, until later, I’ll put this letter “to bed” and get it into your e-mail in basket!
Dave
Wednesday, October 23, 2002
Chapter4 Four; Planning the Rest of My Life
Dave’s Great Adventure
Chapter 4, Verse 1
October 17, 2002
About Halfway...
I just sent out a DGA today that I started last week, but I thought I’d start the next one before I get too fuzzy. There is a phenomenon called “chemo brain” (really!) that affects your memory, long and short term, I guess. I just thought I’d tell you about the last few days of chemo while it’s fresh in my mind.
First, the good news about my blood counts. I had more blood drawn last Monday, four days ago, as we always do before starting a round of drugs. As before, my good guys are holding their own. My red cells and platelets are still normal. My white count is up a little bit to about 3,100, but the increase is almost entirely in greater numbers of neutrophils, the bacteria fighters, and not the lymphocytes, which can be the bad cells in this case. All the bad guys, the leukemic cells, are lymphocytes, but not all lymphocytes are bad guys, of course. But for now, the count of lymphs is staying stable and therefore my percentage of neutrophils is edging up toward normal. For those of you interested in medical minutia, we normally have about 85% or so of our white cells as neutrophils and about 10% or so that are lymphs. When I started my therapy, I had about the opposite ratios; about 89% lymphs and only about 10% neutrophils (if you’re wondering, the missing percentages are made up of other white cells called eosinophils, monocytes, basophils and a few other odds and ends). My neutrophils are now up to about 60% of the total white cells (though their total numbers are still depressed to low but normal range numbers; Natalie, they need more jokes!).
So, we started Round Four. This about marks the halfway point for me, in this chemo stuff. I’ve completed and recovered from three rounds so far and have to recover from three more plus a round, I guess, of Rituxan alone, though I’m going to try to talk my doc into giving me another full round of chemo in January if my marrow is still in good shape. I want to blast the disease as hard as I can this first time, and hopefully not give it a chance to come back!
When I went in for the drugs, I was seated next to my partner, Laurel, who has the breast cancer that has spread to her lungs and liver. She seems in amazingly good spirits and was writing thank you notes to folks who had brought food over to the house when she had to go in for more therapy. She actually was in the hospital for a day when they found the disease had spread. She was having trouble breathing because of lymph node involvement. This has gotten better since her first round of the new chemotherapy she’s getting, Taxitir, I believe. It’s a synthetic form of the older drug, Taxol, which is derived from yew trees. Laurel and I talked for a while until they gave me my premedication, at which point I turned on the CD player and went to sleep.
This turned out to be the longest course of chemo yet. For whatever reason, the Rituxan (another $1500 worth) took a long time to infuse, about three hours or more. And that was after the infusion of the premedications, and before the fludarabine and cytoxan went in. It wasn’t all that bad for me, I was in a recliner (though it is an industrial strength hospital recliner, not a real soft home-style recliner). Kathy, on the other hand, spent the whole time watching me sleep through the infusions in a straight back hospital chair. She had a sore butt and a headache before it was all over. She helped pass the time by reading and doing cross-stitch on a quilt we’re doing for Brooke, our latest granddaughter.
The last couple of days of chemo have been no problem. The IVs have gone in my veins easily and the cytoxan and fludarabine go in over about an hour. No sweat! I have been feeling a little sleepy over the last day or so as the chemo effect sneaks up on me so I pretty much slept through the short infusion today, listening again to Kent’s “One Quiet Piece After Another.”
I have to say, as much as I like the staff at the Hematology-Oncology clinic, there have been a lot of potential medication errors, with me getting incorrect doses of pre-meds, until I ask why, with the nurses asking ME what I am supposed to be getting, asking ME why the dose of Rituxan is changing, etc. We’re using a very new regimen of drugs, but the protocol is in my chart. Maybe they’re asking me these questions because I’m a doc, rather than asking my doc, because they expect me to know (as I do) but if they ask these questions of an average 75 year old leukemic, the patient likely would have no idea what was going on. Yesterday I got shorted on my steroid pre-meds. That’s not the first time my pre-meds have been wrong. But I was only short 4 mg of the 16mg of dexamethasone I was supposed to get so I didn’t worry about it.
Today after my infusions, I had an appointment at the eye doc’s office. I hadn’t had an eye exam in three years! She went over my eyes real well and I’m happy to report that at least my eyes are in good working order. She changed my contacts prescription and now I’m cleared for more astronomy nights!
I recently heard from our friend Cindy (Chitwood) Hunt, in El Paso, who’s been a friend of the family since she and our daughter went to junior high school together. She was commiserating with me on having to go to the bathroom so often during my chemo treatments. You see, she understands what it’s like. Cindy suffers from a “rare medical condition” called TWB. It is a hardship for people like Cindy who have Teeny Weeny Bladder as they have to pee all the time. We know! Cindy came to Europe to visit with us a couple of times while we were in Stuttgart. We went camping across England and Scotland with Cindy and made a lot of potty breaks! Now she thinks I should have been more sympathetic.
October 18
We also heard from Jane Forte up in Iowa who thinks it’s just “too bad” that we have to go all the way to Maui for an educational meeting. Actually, that wasn’t my first choice at all. But I needed to get some Continuing Medical Education (CME) credits before the end of the year. Like all professionals, whether they be lawyers, teachers, nurses or physical therapists, I am required to get continuing education each year to maintain my license to practice. I had to cancel a meeting we had planned for last March when Kathy and I were both sick, so I was scouring the web sites listing medical meetings that would fit into my chemo regimen, allowing me to travel during my “good “ week, the week before my next round of drugs. There weren’t many. I could have gone to a course in embalming the female cadaver (but that REALLY didn’t interest me) or a few other weird courses, but then I found this course in obstetric problems, something I was really interested in. To make it even better, it was sponsored by the same folks that had put on the meeting last March that I had to cancel (for which I forfeited a large deposit). They would give me most of my $550 deposit back if I registered for another of their courses within a year, and American Airlines would give me credit for the cancelled plane fare too. So, you see, we HAD go to this meeting! We get credit for our fees we already paid, the company picks up the majority of the tab anyway, Kathy has always wanted to see Hawaii, and I really need to get a meeting done before the end of the year for licensure reasons.
I also heard from my step-brother/cousin Tom Lee in Atlanta recently. He says my reports are his main source of reading material and it had been so long since my last letter that he was afraid that he’d have to go to the library to get a book. I mentioned in the past that Tom was my step-brother/cousin. I thought surely someone would write in to ask me about that curious relationship. He always adds to his notes (when he signs off that way), “Are we from Alabama?” He also noted that you know you are a redneck when you go to family reunions to meet girls!
Actually, the explanation, which many of you already know, is very simple. Tom’s dad, Lloyd Lee, married my Mom’s sister Marian. And Lloyd and Marian were attendants at the wedding of my mom and dad. My dad died (of this same leukemia) in 1981, and Lloyd and Marian came down to San Antonio several times to visit mom after the fact, as they had doing for many years anyway. When Tom’s Mom (Lloyd‘s wife), Marian, died in 1989, Lloyd and my mom spent a lot of time together, and finally decided to get married. It has been a wonderful thing for both of them.
While I was growing up in Texas, my family often visited Lloyd and Marian during the summers up on their farm in Iowa, near the small town of Letts. Tom and his brother Dick, were older than me and I’d hang around with them as they went about the farm chores. I was a city boy and was fascinated by all the things they were doing. One time I asked, when I was about 12, if they could teach me to drive the tractor. They said sure, and showed me how to start the motor and get it in gear. Shortly thereafter we were down in the fields and they needed the tractor and wagon brought down to where they were. I quickly volunteered to bring it, using my newly acquired driving skills. I ran up the hill to where the tractor was standing, proudly started it up and got it going down toward Tom and Dick, and Lloyd too, I believe. It wasn’t until I got down to them that I realized they hadn’t told me how to stop the silly thing! I circled around and around as they tried to yell instructions to me until one of them came alongside and jumped on to get it stopped. I didn’t drive again for a long time.
Today I’m wearing my “fat pants.” Kathy found me a pair of jeans on sale at Target for $10 that are two inches larger than I usually wear so I can be comfortable during the times I get big on the steroids. I hope I don’t get TOO comfortable in these. I usually try to make my body fit my clothing, rather than getting clothes that accommodate to my enlarging body.
PLANNING...HOW...FOR WHAT...?
You know, it is so difficult to know how to plan the rest of my life right about now. Since I really don’t how long the rest of my life is going to be (of course, do any of us, really?). I still don’t know what to do about retirement, work, etc. I really would like to be able to retire before I check out, and could probably do so if I start getting into my retirement funds now, but if I do that, and then live for another fifteen years, I’ll be broke! I’d probably have to go back to work! What a cruel trick that would be! In addition, this is a particularly bad time to be accessing my retirement funds as they’re all in the tank. They are all in stocks or bonds, most of which are ‘way down right now. I’d be like the brother of another colleague at work whose brother has a brain tumor he’s been fighting for a number of years. He didn’t expect to live as long as he has, so now he has no job and no money. What to do? I really think I’ll keep working for the near future, at reduced hours, until we see how this treatment, or whatever treatment we go to next, does. If it looks like we’re reaching the end of the line, then I’ll retire to see if I can enjoy my last few years.
But if I don’t work, I will lose out on several things (not counting the pay and benefits). The main thing will be the contact with my patients and colleagues. My work, is to a large extent, who I am. If I’m not working, at least a little, then I’m just that retired guy down the street who’s got leukemia. I enjoy the contact with the folks at work, I really do. And I personally love the feedback I get from my patients. One of the best things about what I do is that I sometimes really think I make a difference. There are moms out there who are alive because of what I’ve done, and kids who would not have been born alive except for my interventions. I’m happy about that, and am proud that I could help folks so often.
I also wonder about end-of-life scenarios. Leukemics don’t usually die sudden deaths, so there will be time to decide how and where I want to spend my last days. I’d like not to be in an ICU with all kinds of monitors beeping, all by myself, coated by fluorescent light, dying alone at about 3:00 AM (as many critically ill people do, for some reason). I read an article recently about a woman here in Highlands Ranch who was dying of breast cancer. Her final wishes were to die at home, with her husband holding her face in his hands, and she wanted her life and death to be meaningful. I think that is kind of what I’d like, but on the other hand, I don’t want Kathy to remember our bedroom and our bed as the place I died. Plus, many home sales contracts ask if anyone has died in the home. I guess some folks are afraid of ghosts or something. My dying in the house might actually make it more difficult to sell! What to do?
Planning one’s death also is not that easy to do. The scenario above, about dying with your face held by your spouse, is a great sentiment but is not easy to schedule. When you’re dying of cancer, your last days are not good days for you or your family. Generally the patient is only semi-conscious for a number of days before the “terminal event.” You wouldn’t have the opportunity to say, for example, “Come here, dear. I see the light coming to get me!” And making the family stand guard over you for days, watching you die by degrees, would not be a good thing for the family, especially when you wouldn’t even be aware of their presence. My Mom can attest to that, as she visited my Dad for days just before he died, times when he didn’t know where he was or what he was saying. Then he died in the early morning hours when Mom was at home and he was alone!
Maybe a hospice?
October 23
I faded rapidly and deeply after the above and have been away from the keyboard for several days. I think this installment is long enough, so though I have more stuff to pass along, I think I’ll get this into cyberspace and into your mailboxes. We got a touch of winter today, with some snow flurries. I’ll tell you about it next time.
I should mention, though, to ease your fears of viruses, that I wrote to the Yahoo folks a couple of times (they bought Prodigy recently) complaining that I was being impersonated and that someone was sending out viruses in my name. Their response basically was that “technically” they couldn’t stop anyone from impersonating me, and left the impression that they couldn’t or wouldn’t do anything. We had been getting four to eight returned messages a day, bounced back from inactive e-mail addresses, with virus-laden attachments (which Doctor Norton was taking care of for us) but since I complained to Yahoo the second time, they have stopped completely! They never said they were going to do anything, but I’m guessing that “technically” they actually had the electronic power to reach out to someone and get the impersonation to stop, be blocked or whatever. Now those guys are probably using some other poor schmuck’s e-mail address, from their electronic mailing list, to send out their evil messages. But at least I don’t need to worry about them for now, and neither do you.
Enough for now. I’ll be back in a few days unless you’ve had enough of this stuff and hit the delete button when you see my name in your in-basket!
Dave
PS--No one ever wrote in to tell me what a “hat trick” was, or rather, where the term came from. Does anybody really know?
Chapter 4, Verse 1
October 17, 2002
About Halfway...
I just sent out a DGA today that I started last week, but I thought I’d start the next one before I get too fuzzy. There is a phenomenon called “chemo brain” (really!) that affects your memory, long and short term, I guess. I just thought I’d tell you about the last few days of chemo while it’s fresh in my mind.
First, the good news about my blood counts. I had more blood drawn last Monday, four days ago, as we always do before starting a round of drugs. As before, my good guys are holding their own. My red cells and platelets are still normal. My white count is up a little bit to about 3,100, but the increase is almost entirely in greater numbers of neutrophils, the bacteria fighters, and not the lymphocytes, which can be the bad cells in this case. All the bad guys, the leukemic cells, are lymphocytes, but not all lymphocytes are bad guys, of course. But for now, the count of lymphs is staying stable and therefore my percentage of neutrophils is edging up toward normal. For those of you interested in medical minutia, we normally have about 85% or so of our white cells as neutrophils and about 10% or so that are lymphs. When I started my therapy, I had about the opposite ratios; about 89% lymphs and only about 10% neutrophils (if you’re wondering, the missing percentages are made up of other white cells called eosinophils, monocytes, basophils and a few other odds and ends). My neutrophils are now up to about 60% of the total white cells (though their total numbers are still depressed to low but normal range numbers; Natalie, they need more jokes!).
So, we started Round Four. This about marks the halfway point for me, in this chemo stuff. I’ve completed and recovered from three rounds so far and have to recover from three more plus a round, I guess, of Rituxan alone, though I’m going to try to talk my doc into giving me another full round of chemo in January if my marrow is still in good shape. I want to blast the disease as hard as I can this first time, and hopefully not give it a chance to come back!
When I went in for the drugs, I was seated next to my partner, Laurel, who has the breast cancer that has spread to her lungs and liver. She seems in amazingly good spirits and was writing thank you notes to folks who had brought food over to the house when she had to go in for more therapy. She actually was in the hospital for a day when they found the disease had spread. She was having trouble breathing because of lymph node involvement. This has gotten better since her first round of the new chemotherapy she’s getting, Taxitir, I believe. It’s a synthetic form of the older drug, Taxol, which is derived from yew trees. Laurel and I talked for a while until they gave me my premedication, at which point I turned on the CD player and went to sleep.
This turned out to be the longest course of chemo yet. For whatever reason, the Rituxan (another $1500 worth) took a long time to infuse, about three hours or more. And that was after the infusion of the premedications, and before the fludarabine and cytoxan went in. It wasn’t all that bad for me, I was in a recliner (though it is an industrial strength hospital recliner, not a real soft home-style recliner). Kathy, on the other hand, spent the whole time watching me sleep through the infusions in a straight back hospital chair. She had a sore butt and a headache before it was all over. She helped pass the time by reading and doing cross-stitch on a quilt we’re doing for Brooke, our latest granddaughter.
The last couple of days of chemo have been no problem. The IVs have gone in my veins easily and the cytoxan and fludarabine go in over about an hour. No sweat! I have been feeling a little sleepy over the last day or so as the chemo effect sneaks up on me so I pretty much slept through the short infusion today, listening again to Kent’s “One Quiet Piece After Another.”
I have to say, as much as I like the staff at the Hematology-Oncology clinic, there have been a lot of potential medication errors, with me getting incorrect doses of pre-meds, until I ask why, with the nurses asking ME what I am supposed to be getting, asking ME why the dose of Rituxan is changing, etc. We’re using a very new regimen of drugs, but the protocol is in my chart. Maybe they’re asking me these questions because I’m a doc, rather than asking my doc, because they expect me to know (as I do) but if they ask these questions of an average 75 year old leukemic, the patient likely would have no idea what was going on. Yesterday I got shorted on my steroid pre-meds. That’s not the first time my pre-meds have been wrong. But I was only short 4 mg of the 16mg of dexamethasone I was supposed to get so I didn’t worry about it.
Today after my infusions, I had an appointment at the eye doc’s office. I hadn’t had an eye exam in three years! She went over my eyes real well and I’m happy to report that at least my eyes are in good working order. She changed my contacts prescription and now I’m cleared for more astronomy nights!
I recently heard from our friend Cindy (Chitwood) Hunt, in El Paso, who’s been a friend of the family since she and our daughter went to junior high school together. She was commiserating with me on having to go to the bathroom so often during my chemo treatments. You see, she understands what it’s like. Cindy suffers from a “rare medical condition” called TWB. It is a hardship for people like Cindy who have Teeny Weeny Bladder as they have to pee all the time. We know! Cindy came to Europe to visit with us a couple of times while we were in Stuttgart. We went camping across England and Scotland with Cindy and made a lot of potty breaks! Now she thinks I should have been more sympathetic.
October 18
We also heard from Jane Forte up in Iowa who thinks it’s just “too bad” that we have to go all the way to Maui for an educational meeting. Actually, that wasn’t my first choice at all. But I needed to get some Continuing Medical Education (CME) credits before the end of the year. Like all professionals, whether they be lawyers, teachers, nurses or physical therapists, I am required to get continuing education each year to maintain my license to practice. I had to cancel a meeting we had planned for last March when Kathy and I were both sick, so I was scouring the web sites listing medical meetings that would fit into my chemo regimen, allowing me to travel during my “good “ week, the week before my next round of drugs. There weren’t many. I could have gone to a course in embalming the female cadaver (but that REALLY didn’t interest me) or a few other weird courses, but then I found this course in obstetric problems, something I was really interested in. To make it even better, it was sponsored by the same folks that had put on the meeting last March that I had to cancel (for which I forfeited a large deposit). They would give me most of my $550 deposit back if I registered for another of their courses within a year, and American Airlines would give me credit for the cancelled plane fare too. So, you see, we HAD go to this meeting! We get credit for our fees we already paid, the company picks up the majority of the tab anyway, Kathy has always wanted to see Hawaii, and I really need to get a meeting done before the end of the year for licensure reasons.
I also heard from my step-brother/cousin Tom Lee in Atlanta recently. He says my reports are his main source of reading material and it had been so long since my last letter that he was afraid that he’d have to go to the library to get a book. I mentioned in the past that Tom was my step-brother/cousin. I thought surely someone would write in to ask me about that curious relationship. He always adds to his notes (when he signs off that way), “Are we from Alabama?” He also noted that you know you are a redneck when you go to family reunions to meet girls!
Actually, the explanation, which many of you already know, is very simple. Tom’s dad, Lloyd Lee, married my Mom’s sister Marian. And Lloyd and Marian were attendants at the wedding of my mom and dad. My dad died (of this same leukemia) in 1981, and Lloyd and Marian came down to San Antonio several times to visit mom after the fact, as they had doing for many years anyway. When Tom’s Mom (Lloyd‘s wife), Marian, died in 1989, Lloyd and my mom spent a lot of time together, and finally decided to get married. It has been a wonderful thing for both of them.
While I was growing up in Texas, my family often visited Lloyd and Marian during the summers up on their farm in Iowa, near the small town of Letts. Tom and his brother Dick, were older than me and I’d hang around with them as they went about the farm chores. I was a city boy and was fascinated by all the things they were doing. One time I asked, when I was about 12, if they could teach me to drive the tractor. They said sure, and showed me how to start the motor and get it in gear. Shortly thereafter we were down in the fields and they needed the tractor and wagon brought down to where they were. I quickly volunteered to bring it, using my newly acquired driving skills. I ran up the hill to where the tractor was standing, proudly started it up and got it going down toward Tom and Dick, and Lloyd too, I believe. It wasn’t until I got down to them that I realized they hadn’t told me how to stop the silly thing! I circled around and around as they tried to yell instructions to me until one of them came alongside and jumped on to get it stopped. I didn’t drive again for a long time.
Today I’m wearing my “fat pants.” Kathy found me a pair of jeans on sale at Target for $10 that are two inches larger than I usually wear so I can be comfortable during the times I get big on the steroids. I hope I don’t get TOO comfortable in these. I usually try to make my body fit my clothing, rather than getting clothes that accommodate to my enlarging body.
PLANNING...HOW...FOR WHAT...?
You know, it is so difficult to know how to plan the rest of my life right about now. Since I really don’t how long the rest of my life is going to be (of course, do any of us, really?). I still don’t know what to do about retirement, work, etc. I really would like to be able to retire before I check out, and could probably do so if I start getting into my retirement funds now, but if I do that, and then live for another fifteen years, I’ll be broke! I’d probably have to go back to work! What a cruel trick that would be! In addition, this is a particularly bad time to be accessing my retirement funds as they’re all in the tank. They are all in stocks or bonds, most of which are ‘way down right now. I’d be like the brother of another colleague at work whose brother has a brain tumor he’s been fighting for a number of years. He didn’t expect to live as long as he has, so now he has no job and no money. What to do? I really think I’ll keep working for the near future, at reduced hours, until we see how this treatment, or whatever treatment we go to next, does. If it looks like we’re reaching the end of the line, then I’ll retire to see if I can enjoy my last few years.
But if I don’t work, I will lose out on several things (not counting the pay and benefits). The main thing will be the contact with my patients and colleagues. My work, is to a large extent, who I am. If I’m not working, at least a little, then I’m just that retired guy down the street who’s got leukemia. I enjoy the contact with the folks at work, I really do. And I personally love the feedback I get from my patients. One of the best things about what I do is that I sometimes really think I make a difference. There are moms out there who are alive because of what I’ve done, and kids who would not have been born alive except for my interventions. I’m happy about that, and am proud that I could help folks so often.
I also wonder about end-of-life scenarios. Leukemics don’t usually die sudden deaths, so there will be time to decide how and where I want to spend my last days. I’d like not to be in an ICU with all kinds of monitors beeping, all by myself, coated by fluorescent light, dying alone at about 3:00 AM (as many critically ill people do, for some reason). I read an article recently about a woman here in Highlands Ranch who was dying of breast cancer. Her final wishes were to die at home, with her husband holding her face in his hands, and she wanted her life and death to be meaningful. I think that is kind of what I’d like, but on the other hand, I don’t want Kathy to remember our bedroom and our bed as the place I died. Plus, many home sales contracts ask if anyone has died in the home. I guess some folks are afraid of ghosts or something. My dying in the house might actually make it more difficult to sell! What to do?
Planning one’s death also is not that easy to do. The scenario above, about dying with your face held by your spouse, is a great sentiment but is not easy to schedule. When you’re dying of cancer, your last days are not good days for you or your family. Generally the patient is only semi-conscious for a number of days before the “terminal event.” You wouldn’t have the opportunity to say, for example, “Come here, dear. I see the light coming to get me!” And making the family stand guard over you for days, watching you die by degrees, would not be a good thing for the family, especially when you wouldn’t even be aware of their presence. My Mom can attest to that, as she visited my Dad for days just before he died, times when he didn’t know where he was or what he was saying. Then he died in the early morning hours when Mom was at home and he was alone!
Maybe a hospice?
October 23
I faded rapidly and deeply after the above and have been away from the keyboard for several days. I think this installment is long enough, so though I have more stuff to pass along, I think I’ll get this into cyberspace and into your mailboxes. We got a touch of winter today, with some snow flurries. I’ll tell you about it next time.
I should mention, though, to ease your fears of viruses, that I wrote to the Yahoo folks a couple of times (they bought Prodigy recently) complaining that I was being impersonated and that someone was sending out viruses in my name. Their response basically was that “technically” they couldn’t stop anyone from impersonating me, and left the impression that they couldn’t or wouldn’t do anything. We had been getting four to eight returned messages a day, bounced back from inactive e-mail addresses, with virus-laden attachments (which Doctor Norton was taking care of for us) but since I complained to Yahoo the second time, they have stopped completely! They never said they were going to do anything, but I’m guessing that “technically” they actually had the electronic power to reach out to someone and get the impersonation to stop, be blocked or whatever. Now those guys are probably using some other poor schmuck’s e-mail address, from their electronic mailing list, to send out their evil messages. But at least I don’t need to worry about them for now, and neither do you.
Enough for now. I’ll be back in a few days unless you’ve had enough of this stuff and hit the delete button when you see my name in your in-basket!
Dave
PS--No one ever wrote in to tell me what a “hat trick” was, or rather, where the term came from. Does anybody really know?
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