Hello again,
Not too long after I sent out my update, I heard back from my local doc. He had already talked with Dr. Keating at M. D. Anderson about what they thought I should do next. I didn't expect a reply so fast. I thought it would at least be next week. Anyway, they were going to discuss the two opposing plans for my next therapy, standard chemotherapy (which is not curative but can "buy" more time), or the new, unproven procedure, which has yet to cure or even really help anyone. Plan A or Plan B. Well, I wish I had been privy to the conversation they had, because when they finished their discussion they decided on neither plan. Instead, we're going to consider "Plan C!" Now, "Plan C" is yet another experimental protocol, but using some standard anti-cancer drugs in a new way. If you want the gory details, the protocol is:
http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2005-0992
Now, this protocol starts with a combination of Fludara, Cytoxan and Rituxan (or "FCR") which is the combination of drugs I was given back in 2002. It worked quite well. In fact, it worked so well, that we had to stop the regimen early because my white count went too low and I was at risk for infections. What's different about the protocol is that now they want to add a drug called Avastin to the mix to see how it works. Avastin is a monoclonal antibody (like Rituxan) but it inhibits vascular endothelial growth factor (the endothelium is the lining of the blood vessels), which causes abnormal blood vessels to grow in tumors, and accelerates the tumor's growth. Avastin has been around for a while and is used a lot, but as far a I can tell, it's just been used in solid tumors like bowel cancer, lung cancer, pancreatic cancer and kidney cancer. But, like so many anti-cancer drugs, Avastin has some potentially significant side effects:
http://www.fda.gov/cder/foi/label/2004/125085lbl.pdf
(I don't expect even one of you to read through all that stuff, but just a glance will tell you it's a serious drug)
The side effects and complications include bowel perforations, kidney damage leading to dialysis, bleeding into your lungs, severe hypertension, some rare form of brain damage, and a lot more. Wow! But I'm puzzled about why they're wanting to consider this drug in my case, and in the case of any patient with leukemia. Avastin works by controlling the growth of aberrant blood vessels in tumors. But I don't even understand, yet, why Avastin should work in leukemia, 'cause as far as I know, there aren't any aberrant blood vessels to control. Anyway, at this point I'm waiting for a call back from MDA to get an appointment, hopefully soon, to get in to discuss the new protocol and get set up for the treatments. Apparently what they'll want to do is schedule the first series of infusions down there in Houston and then I can have the next several month's infusions back here in Denton.
Stay tuned.
Dave
Saturday, January 19, 2008
Thursday, January 17, 2008
Update
Hi everyone,
Ever since I finished my last chemo treatments in the early spring of 2004, I've been asking my docs, "What's next, and when?" And I've never gotten really good answers because, as one of my docs in Denver put it, the "best treatment" is a moving target. In other words, there is really no best treatment, just varying perceptions as what might be okay, since none of the available treatments is a actually a cure. I've also gotten varying opinions about the "when" question, because there are no hard and fast guidelines about even when a treatment should start. Survival apparently is not enhanced by early treatment, even if it results in a complete remission. Some folks treat when your white count doubles within a year; some when your platelet counts drop; others when you're feeling badly or are having night sweats. I still don't have any precise answers to any of these questions, but we're getting closer to the "when"part.
My white count is now 87,000, the highest it's ever been. Even when I started my first course of chemo back in 2002, it was "only" 65,000. (Normal is between 3,000 and about 10,000.) At the start of last year my count was about 15,000 or so. My white count,therefore, has gone up six times what is was a year ago. We haven't treated yet because I've been feeling relatively normal, but finally, my local doc thinks we should probably start something and do it within the next few weeks or a month or so.
Now, most of you know that the docs at M. D. Anderson have offered me the opportunity to take part in an experimental study that hopes to use my own immune system to attack the abnormal leukemic cells. They hope to do this by collecting my leukemic cells and treating them with viral DNA, then putting them back in me so my T-lymphocytes (the other kind; my leukemic cells are abnormal B-lymphocytes) will learn to recognize them as "foreign" and attack and kill them off. The second phase of that study, which I've been invited to join, should be starting soon, maybe just in time. So far the study has neither killed nor cured anyone, after preliminary trials on ten brave souls. My local doc has been a bit hesitant for me to take part, thinking that this cure might, indeed, be worse than my disease (people have randomly, unexpectedly died during gene therapy trials). He's thinking that we should consider more mainstream chemotherapy, like that I've already done or similar regimens. But, like my other docs, it's not clear which, if any, of these other regimens might be "best." But, he's going to call my doc in Houston and they're going to decide on what they think I ought to do. That'll be nice, 'cause for several months now I've been caught between the two schools of thought; that I should do the study regimen and that I shouldn't. Hopefully they'll talk it over and come to a conclusion that they both agree on, so we can proceed. I'm kinda wanting to do the new study, but will be a royal pain because we'll have to spend a lot of time in Houston, at our own expense, and that will also involve a lot of travel back and forth between home and Houston, about a 600 mile round trip. But, bottom line, we'll start something again within weeks, and it may or may not be the new protocol. I'll keep you posted.
Any questions?
Dave
Ever since I finished my last chemo treatments in the early spring of 2004, I've been asking my docs, "What's next, and when?" And I've never gotten really good answers because, as one of my docs in Denver put it, the "best treatment" is a moving target. In other words, there is really no best treatment, just varying perceptions as what might be okay, since none of the available treatments is a actually a cure. I've also gotten varying opinions about the "when" question, because there are no hard and fast guidelines about even when a treatment should start. Survival apparently is not enhanced by early treatment, even if it results in a complete remission. Some folks treat when your white count doubles within a year; some when your platelet counts drop; others when you're feeling badly or are having night sweats. I still don't have any precise answers to any of these questions, but we're getting closer to the "when"part.
My white count is now 87,000, the highest it's ever been. Even when I started my first course of chemo back in 2002, it was "only" 65,000. (Normal is between 3,000 and about 10,000.) At the start of last year my count was about 15,000 or so. My white count,therefore, has gone up six times what is was a year ago. We haven't treated yet because I've been feeling relatively normal, but finally, my local doc thinks we should probably start something and do it within the next few weeks or a month or so.
Now, most of you know that the docs at M. D. Anderson have offered me the opportunity to take part in an experimental study that hopes to use my own immune system to attack the abnormal leukemic cells. They hope to do this by collecting my leukemic cells and treating them with viral DNA, then putting them back in me so my T-lymphocytes (the other kind; my leukemic cells are abnormal B-lymphocytes) will learn to recognize them as "foreign" and attack and kill them off. The second phase of that study, which I've been invited to join, should be starting soon, maybe just in time. So far the study has neither killed nor cured anyone, after preliminary trials on ten brave souls. My local doc has been a bit hesitant for me to take part, thinking that this cure might, indeed, be worse than my disease (people have randomly, unexpectedly died during gene therapy trials). He's thinking that we should consider more mainstream chemotherapy, like that I've already done or similar regimens. But, like my other docs, it's not clear which, if any, of these other regimens might be "best." But, he's going to call my doc in Houston and they're going to decide on what they think I ought to do. That'll be nice, 'cause for several months now I've been caught between the two schools of thought; that I should do the study regimen and that I shouldn't. Hopefully they'll talk it over and come to a conclusion that they both agree on, so we can proceed. I'm kinda wanting to do the new study, but will be a royal pain because we'll have to spend a lot of time in Houston, at our own expense, and that will also involve a lot of travel back and forth between home and Houston, about a 600 mile round trip. But, bottom line, we'll start something again within weeks, and it may or may not be the new protocol. I'll keep you posted.
Any questions?
Dave
Wednesday, September 12, 2007
Follow-Up at M. D. Anderson
Hello all,
We got safely to and from Houston and thought I ought to give you a report on what transpired. We went down there for a consultation because my white count had about quadrupled (from 11,000 to about 45,000) and my platelets were drifting downward over the last year and my local doc wanted to know what the "big boys" were going to suggest for the next step. A mere doubling of the white count is generally an indication to start treatments. He expects to need to start more chemotherapy by the end of the year.
We got to Houston Tuesday night and checked into the Rotary House Int'l Hotel right across the street from M. D. Anderson. The place is run by Marriott but is somehow connected to Anderson, both physically, by a skywalk onto the Anderson campus, and administratively. It was a wonderful place, not at all institutional as I expected, but nevertheless geared toward the patients who stay there. One early surprise was that, though I was scheduled for blood to be drawn at 6:30 AM before my 8:30 appointment, I was asked upon checking in, if I'd like to have my blood drawn there, that evening, rather than the next morning. Given the opportunity to sleep in an extra hour and a half, I took them up on the offer. They have a blood drawing room right in the hotel, with a great waiting room, with movies, popcorn, etc. The place also has several restaurants, lounges, giftshops, etc.
Anyway, we got my blood drawn and had dinner. The room was very nice and comfortable so we slept well. The next morning we got to the clinic for our appointment (all together now!) early and checked in. Well, they had us in the exam room before time for the appointment. How often does that happen when you go see a doc, huh? When I got checked in, they had my labs ready from the night before. I was pleased to find that my white count was stable at 45,000 and that my platelets had gone up quite a bit. I was examined by the nurse practitioner and found to be basically normal other than for small but slightly enlarged lymph nodes.
So, Dr. Keating came in, gave both of us bear hugs, and we talked. He didn't think I needed treatments right now, but suggested/offered me the opportunity to get a brand new drug in the near future, one based on gene therapy. This new therapy has been tested so far on nine, that's right, nine people. It hasn't killed anyone yet. It also hasn't cured anyone, but that's 'cause it has only gone through Phase 1 of the study,where a drug's safety is studied. In Phase 2, they study the maximum effective doses. So, that's what I'll likely be doing in the coming months.
The therapy involves harvesting leukemic cells from my blood and then processing them with the gene therapy to make them look "foreign" to my immune system, and freezing them. Then, over about five months, they infuse them back into me with the hope that I will start to produce antibodies to the leukemic cells. We don't know if it will work, but, in theory, it should....
So, interesting and a little scary too. And it will involve five or six trips to Anderson with stays of about a week or so each time. But, it won't likely start before the first of the year. So far, so good. And so that's what we've been up to.
Stay tuned,
Dave
We got safely to and from Houston and thought I ought to give you a report on what transpired. We went down there for a consultation because my white count had about quadrupled (from 11,000 to about 45,000) and my platelets were drifting downward over the last year and my local doc wanted to know what the "big boys" were going to suggest for the next step. A mere doubling of the white count is generally an indication to start treatments. He expects to need to start more chemotherapy by the end of the year.
We got to Houston Tuesday night and checked into the Rotary House Int'l Hotel right across the street from M. D. Anderson. The place is run by Marriott but is somehow connected to Anderson, both physically, by a skywalk onto the Anderson campus, and administratively. It was a wonderful place, not at all institutional as I expected, but nevertheless geared toward the patients who stay there. One early surprise was that, though I was scheduled for blood to be drawn at 6:30 AM before my 8:30 appointment, I was asked upon checking in, if I'd like to have my blood drawn there, that evening, rather than the next morning. Given the opportunity to sleep in an extra hour and a half, I took them up on the offer. They have a blood drawing room right in the hotel, with a great waiting room, with movies, popcorn, etc. The place also has several restaurants, lounges, giftshops, etc.
Anyway, we got my blood drawn and had dinner. The room was very nice and comfortable so we slept well. The next morning we got to the clinic for our appointment (all together now!) early and checked in. Well, they had us in the exam room before time for the appointment. How often does that happen when you go see a doc, huh? When I got checked in, they had my labs ready from the night before. I was pleased to find that my white count was stable at 45,000 and that my platelets had gone up quite a bit. I was examined by the nurse practitioner and found to be basically normal other than for small but slightly enlarged lymph nodes.
So, Dr. Keating came in, gave both of us bear hugs, and we talked. He didn't think I needed treatments right now, but suggested/offered me the opportunity to get a brand new drug in the near future, one based on gene therapy. This new therapy has been tested so far on nine, that's right, nine people. It hasn't killed anyone yet. It also hasn't cured anyone, but that's 'cause it has only gone through Phase 1 of the study,where a drug's safety is studied. In Phase 2, they study the maximum effective doses. So, that's what I'll likely be doing in the coming months.
The therapy involves harvesting leukemic cells from my blood and then processing them with the gene therapy to make them look "foreign" to my immune system, and freezing them. Then, over about five months, they infuse them back into me with the hope that I will start to produce antibodies to the leukemic cells. We don't know if it will work, but, in theory, it should....
So, interesting and a little scary too. And it will involve five or six trips to Anderson with stays of about a week or so each time. But, it won't likely start before the first of the year. So far, so good. And so that's what we've been up to.
Stay tuned,
Dave
Wednesday, September 13, 2006
I'm A Mutant!
Greetings from Denton!
Some of you know that I was referred to the famous M. D. Anderson Cancer Center in Houston this week after my white count started climbing again. It hasn't gotten very high yet (only about 10,000) but my doc wanted another opinion on what we should do and when we should do it. So, he sent me to Anderson to be seen by Dr. Michael Keating, probably one of the world's most respected and knowledgeable people as concerns leukemia. I was very pleased to be able to have the opportunity to be seen by him. We got back from there last night and I thought we ought to tell you all about it. A lot happened.
We drove down there, arrived there safely and checked in to an overpriced hotel in central downtown Houston, about 8 blocks from the Cancer Center. It didn't even have free breakfasts, parking or Internet access! Anyway, we spent most of our first evening checking out the place, driving over to the Cancer Center, finding the parking garage, and even going into the clinic building and up to the eighth floor to see where the clinic was. You can't be too prepared, you know.
I've been excited about going down there, and feel privileged to be appointed with Dr. Keating, who is world-renown for his expertise in leukemia. But I have been worried too, since every time I get treated there remain fewer options for the "next time."
So anyway, the next morning, promptly at 7:30 AM we were there. Actually (and you knew this) we were there early! But our first appointment was with the business office to make sure that our insurance was all lined up. No problem! At the last minute (last Friday morning) our insurance, TriCare, had finally approved all the necessary stuff.
My doctor's visit was to be at 8:30 so he could decide what tests I was going to have. Well, we didn't get out of the business stuff until after that, but that wasn't a problem for us. We're in no hurry, we're retired.
We got into the doctor's office at about 10AM, but first the nurse went over all our stuff, asked questions, etc. After Alfreda was finished with me, Dr. Keating's assistant, Dr. Tan, an oncology fellow came in. A "fellow" is an internist who is studying a sub-specialty, in this case, oncology. He was a nice guy, an Aussie with an accent I had a bit of trouble with, and he had a bit of trouble with my speech patterns too. But, we did eventually communicate. He went over my records, asked questions, did a physical exam, etc. During all this, Kathy was with me, sitting in a nearby chair. At some point, Dr. Tan said, "We got back your IgVh gene that you had done in Denton, and it's mutated." Kathy heard this.
Now, it's interesting that they even did this test. It didn't exist until very recently.
When I got sick 4 1/2 years ago, I was diagnosed with CLL, chronic lymphocytic leukemia. That's the same disease my dad had, and he died of it in about five years. And my white counts were rising very rapidly, which is a bad sign. But in the intervening time, they've discovered that there are about five or six different types of CLL, based on your chromosomal abnormalities. And each different sub-type seems to act differently depending on the abnormality. So, I was tested for chromosomal abnormalities in Denver, about two years ago, and was found to have normal chromosomes, which is better than some abnormalities but, curiously, not as good as one particular abnormality. But with the average longevity of patients with disease being 6 years, if you select out the folks with normal chromosomes, it's more like ten years!
Then researchers found that having a particular protein, called CD38, on your leukemia cells was a bad thing, indicating more aggressive disease. I was tested for this in Denver also and am positive for CD38. Bummer. They have also discovered a couple of other "markers" for the disease; the IgVh gene and a test called the zeta associated protein 70, or ZAP 70 test. Just recently they've also found something called a beta microglobulin. The markers can help predict how aggressive your disease is likely to be and what medications might work best, but that's still being sorted out. This is really emerging science, hot off the press.
So, since I've been in Denton we've just been watching my white counts, which have been slowly rising. My doc finally decided to send me to M. D. Anderson since there is no consensus on what the best treatments are nor when it's best to treat. Since I was feeling relatively normal, and the treatments can be hazardous, he was unwilling (I think) to make the call on what to do next.
So, when Dr. Tan was going over me and told me the result of the IgVh gene test, it having been found to be mutated. Kathy was very surprised to hear me respond with "Great!"
It turns out that, counterintuitively, if this particular gene is mutated, you do MUCH better in terms of longevity than if you have the normal gene. When I later explained this to Kathy (after Dr. Tan left the room), tears welled up in her eyes. My ZAP 70 test was negative also, which is also a very good sign. And the beta microglobulin was low, which is very good. And that CD38 test, though it is positive, they've found in the last couple of years that if the levels are low, it's not too bad. My levels are low.
It's interesting that my IgVh gene is mutated. In most men, it's not. In fact, women outnumber men eleven to one in having the mutated gene, and consequently women do much better with this disease than the average guy does, in terms of longevity. I told Kathy that it's my feminine side coming out, and that's why I'm so sensitive and romantic (can you see her eyes rolling?).
This IgVh gene stuff is certainly no guarantee of longevity, and this curious disease that I have can, itself, mutate with time, to more aggressive types, but we'll take the good news when we can get it!
So, we saw Dr. Keating. I've been reading his stuff and hearing him talk (on line) for years, and I liked what I'd seen and heard. He is famous for being a "bear-hugger!" I told Kathy about this and said that since I was seeing him for the first time I'd probably get a handshake, but maybe I'd get a hug next time. But no...he came in, I extended my hand, but he ignored it and rapidly enveloped me in a bear hug! Then he went to Kathy and hugged her too.
He's a nice guy; easy to talk to, soft spoken, knowledgeable. He ordered a few more tests and asked us to come back the next day. We did.
The next day we met with him again, got hugged again, and went over all the labs. He went over all the prognostic tests he'd ordered, said I didn't need a bone marrow biopsy at that time, and that he'd like to follow me for, oh... about twenty years! Wow!! And he said I only needed to get blood tests about every three months ("Relax, you don't need monthly tests!") and I should probably come back to see him in, oh maybe, a year or so!
He also would like to hold off on any more chemotherapy for now because they're in the process of developing what essentially is a vaccine against a patient's specific leukemia, so that your own immune system can destroy the gremlins! If the immune system is damaged by chemotherapy, then the new method of going after the bad guys won't work as well. He said it'll work much better than the "bombs away" approach of old style chemotherapy, which destroys pretty much everything in it's path.
So, after planning for my demise in the next few years, it looks like I may be able to live long enough to spend some of my retirement savings. We'll see how this goes. It's just an amazing turn of events that I'm happy to share with you.
So, I'm happy to tell you that I'm a mutant...though several of you have suspected this for many years!
Thanks to all of you for your constant support and your prayers. Please pass this wonderful news on to your prayer groups for me! I'll keep in touch with you as things develop, though I don't expect much to happen anytime soon.
Until later,
Dave
Some of you know that I was referred to the famous M. D. Anderson Cancer Center in Houston this week after my white count started climbing again. It hasn't gotten very high yet (only about 10,000) but my doc wanted another opinion on what we should do and when we should do it. So, he sent me to Anderson to be seen by Dr. Michael Keating, probably one of the world's most respected and knowledgeable people as concerns leukemia. I was very pleased to be able to have the opportunity to be seen by him. We got back from there last night and I thought we ought to tell you all about it. A lot happened.
We drove down there, arrived there safely and checked in to an overpriced hotel in central downtown Houston, about 8 blocks from the Cancer Center. It didn't even have free breakfasts, parking or Internet access! Anyway, we spent most of our first evening checking out the place, driving over to the Cancer Center, finding the parking garage, and even going into the clinic building and up to the eighth floor to see where the clinic was. You can't be too prepared, you know.
I've been excited about going down there, and feel privileged to be appointed with Dr. Keating, who is world-renown for his expertise in leukemia. But I have been worried too, since every time I get treated there remain fewer options for the "next time."
So anyway, the next morning, promptly at 7:30 AM we were there. Actually (and you knew this) we were there early! But our first appointment was with the business office to make sure that our insurance was all lined up. No problem! At the last minute (last Friday morning) our insurance, TriCare, had finally approved all the necessary stuff.
My doctor's visit was to be at 8:30 so he could decide what tests I was going to have. Well, we didn't get out of the business stuff until after that, but that wasn't a problem for us. We're in no hurry, we're retired.
We got into the doctor's office at about 10AM, but first the nurse went over all our stuff, asked questions, etc. After Alfreda was finished with me, Dr. Keating's assistant, Dr. Tan, an oncology fellow came in. A "fellow" is an internist who is studying a sub-specialty, in this case, oncology. He was a nice guy, an Aussie with an accent I had a bit of trouble with, and he had a bit of trouble with my speech patterns too. But, we did eventually communicate. He went over my records, asked questions, did a physical exam, etc. During all this, Kathy was with me, sitting in a nearby chair. At some point, Dr. Tan said, "We got back your IgVh gene that you had done in Denton, and it's mutated." Kathy heard this.
Now, it's interesting that they even did this test. It didn't exist until very recently.
When I got sick 4 1/2 years ago, I was diagnosed with CLL, chronic lymphocytic leukemia. That's the same disease my dad had, and he died of it in about five years. And my white counts were rising very rapidly, which is a bad sign. But in the intervening time, they've discovered that there are about five or six different types of CLL, based on your chromosomal abnormalities. And each different sub-type seems to act differently depending on the abnormality. So, I was tested for chromosomal abnormalities in Denver, about two years ago, and was found to have normal chromosomes, which is better than some abnormalities but, curiously, not as good as one particular abnormality. But with the average longevity of patients with disease being 6 years, if you select out the folks with normal chromosomes, it's more like ten years!
Then researchers found that having a particular protein, called CD38, on your leukemia cells was a bad thing, indicating more aggressive disease. I was tested for this in Denver also and am positive for CD38. Bummer. They have also discovered a couple of other "markers" for the disease; the IgVh gene and a test called the zeta associated protein 70, or ZAP 70 test. Just recently they've also found something called a beta microglobulin. The markers can help predict how aggressive your disease is likely to be and what medications might work best, but that's still being sorted out. This is really emerging science, hot off the press.
So, since I've been in Denton we've just been watching my white counts, which have been slowly rising. My doc finally decided to send me to M. D. Anderson since there is no consensus on what the best treatments are nor when it's best to treat. Since I was feeling relatively normal, and the treatments can be hazardous, he was unwilling (I think) to make the call on what to do next.
So, when Dr. Tan was going over me and told me the result of the IgVh gene test, it having been found to be mutated. Kathy was very surprised to hear me respond with "Great!"
It turns out that, counterintuitively, if this particular gene is mutated, you do MUCH better in terms of longevity than if you have the normal gene. When I later explained this to Kathy (after Dr. Tan left the room), tears welled up in her eyes. My ZAP 70 test was negative also, which is also a very good sign. And the beta microglobulin was low, which is very good. And that CD38 test, though it is positive, they've found in the last couple of years that if the levels are low, it's not too bad. My levels are low.
It's interesting that my IgVh gene is mutated. In most men, it's not. In fact, women outnumber men eleven to one in having the mutated gene, and consequently women do much better with this disease than the average guy does, in terms of longevity. I told Kathy that it's my feminine side coming out, and that's why I'm so sensitive and romantic (can you see her eyes rolling?).
This IgVh gene stuff is certainly no guarantee of longevity, and this curious disease that I have can, itself, mutate with time, to more aggressive types, but we'll take the good news when we can get it!
So, we saw Dr. Keating. I've been reading his stuff and hearing him talk (on line) for years, and I liked what I'd seen and heard. He is famous for being a "bear-hugger!" I told Kathy about this and said that since I was seeing him for the first time I'd probably get a handshake, but maybe I'd get a hug next time. But no...he came in, I extended my hand, but he ignored it and rapidly enveloped me in a bear hug! Then he went to Kathy and hugged her too.
He's a nice guy; easy to talk to, soft spoken, knowledgeable. He ordered a few more tests and asked us to come back the next day. We did.
The next day we met with him again, got hugged again, and went over all the labs. He went over all the prognostic tests he'd ordered, said I didn't need a bone marrow biopsy at that time, and that he'd like to follow me for, oh... about twenty years! Wow!! And he said I only needed to get blood tests about every three months ("Relax, you don't need monthly tests!") and I should probably come back to see him in, oh maybe, a year or so!
He also would like to hold off on any more chemotherapy for now because they're in the process of developing what essentially is a vaccine against a patient's specific leukemia, so that your own immune system can destroy the gremlins! If the immune system is damaged by chemotherapy, then the new method of going after the bad guys won't work as well. He said it'll work much better than the "bombs away" approach of old style chemotherapy, which destroys pretty much everything in it's path.
So, after planning for my demise in the next few years, it looks like I may be able to live long enough to spend some of my retirement savings. We'll see how this goes. It's just an amazing turn of events that I'm happy to share with you.
So, I'm happy to tell you that I'm a mutant...though several of you have suspected this for many years!
Thanks to all of you for your constant support and your prayers. Please pass this wonderful news on to your prayer groups for me! I'll keep in touch with you as things develop, though I don't expect much to happen anytime soon.
Until later,
Dave
Thursday, October 7, 2004
German Roads, Remission and Leaky Heart Valves!
Dave’s Great Adventure, Book 2
Postscript 5
October 7, 2004
Around every curve….
Well, we made it to Germany and back. And we did well, never got sick, and though we, and especially I, were/was tired a lot, we had, as expected, a wonderful time. It had been almost three years since our last trip to Germany. I had almost forgotten how much I love that country. In some ways, it is, to me, like a huge theme park, like being in a mega-Disney World. I love just about everything about it. I love the little towns, I love the food, I love the sounds of tires and wheels on cobblestones, I love the old half-timbered (commonly called Tudor style in America) buildings which date back many hundreds of years, I love the smells of the little towns in the mornings, where one can smell hardwood burning in the cook stoves, I love the little non-chain stores, I love the language, I love the roads….
I really love the roads, but I’ll bet you already have the wrong idea. Truly, I love the autobahns, as you’re probably thinking. They are incredibly well engineered, are wide, and are multi-laned, and there are long stretches which have no speed limits whatever. I drove fast on occasions during this trip, but I probably did no more than 110mph (about 180kph). Some of you who haven’t been to Germany may think that is fast, but when I lived in Germany and drove Porsches and BMWs, I routinely drove 125-140mph on a daily basis. Hey, roads are made to get you places quickly. Cars are designed to do the same.
But I like all the roads. The autobahns are the “A” roads, but they have great “B” roads, which are the federal roads, like Highway 66, and they have “C” roads, which are the state roads. At this level, the roads are getting narrower and more curving and twisty. But then there’s the local county roads. I’ve come to love them almost as much, or maybe a little more than the autobahns. I have been known to go out of my way to take an indirect route from one town to the next, just to be able to drive these little county roads.
The roads I’m talking about are but one broad lane wide, with absolutely no shoulders, and not even a center line. They are never straight. The edges of the road are carefully painted with white stripes to let you know, with certainty, where the edge is. When you meet oncoming traffic, you’d best be on the white line or your mirrors may kiss each other. Trucks don’t drive these roads, so narrow are they. These roads are routinely very winding and follow the topography, not cutting straight through hills and slopes as more modern roads do. They follow paths laid out centuries ago by animals, knights and stage coaches. They tend to be lined by heavy growth of bushes and trees, and the trees frequently meet overhead so that you have the impression of driving through a brushy green tunnel. There are leaves on the road that fly up behind you. On the uphill sides of these meandering roads the bank of the hills are usually reinforced with old red sandstone blocks, which are green with the moss that grows down their sides. The foliage opens up as you approach each ancient village, as the towns on these roads tend to be old indeed. And as you leave one town, you can usually see the red tiled roofs of the next village just a few kilometers further down the road. Entering again the green tunnel, you never can see too far ahead. The twists of the road are such that as you round one curve in the road, you are approaching another curve with more surprises in store. Wonderful.
So we got to Germany safely, but very tired. That was to be expected, even flying in those wonderful business class seats. Everyone suffers from jet lag when you fly to Europe. We checked into a 500 year-old hotel in Miltenberg, a place we’ve stayed many times, and spent a few days there to rest up and get used to the time change. I’ll probably describe the trip itself in some sort of DGA Travelogue for anyone interested, so I’ll not go into too much detail here.
On the third day of our trip we checked out and headed to Heidelberg. It also is a favorite town, and is a place I lived with my family in the 1950s when I was a naughty little boy. But now, our friends the Bakers live there. We’ve known each other for a couple of decades, since our days in El Paso in the ‘80s. Brian is a doc at the American hospital there, and our plan was for him to order a blood test for me, to make sure that my white count wasn’t falling any further. I had promised my doc here in town that I would do that before he let me go on the trip. (What we would have done if I was actually getting critically ill during the trip is a matter of conjecture)
But, we were able to get me entered into the local computer system which enabled Brian to order the complete blood count. It was still “critically low” but no worse that when we left Denver. Since I was still feeling well, we continued the trip and I didn’t feel the need to bother my doc back here in Denver with the news.
Staying with the Bakers is always a wonderful experience that I wish all of you could experience. Hey, maybe I could invite ALL of you over to their house for dinner some night! They are wonderful hosts and feed you very, very well. I’ll tell you more about that in the travelogue to follow sometime soon. We were able to catch up on current events and spend a little time in downtown Heidelberg doing some Christmas shopping.
Our next stop was Dettenheim, where the granddaughter of the poor woman who had to take care of me when I was the previously mentioned naughty little boy in the 1950s, now lives. Marta Galla was my nanny. She was a jewel of a person and just a lot of fun to be around. Her daughters also helped care for my siblings and me. Marta unfortunately died of a sarcoma a few years ago, but we have been able to keep in touch with her family. Her granddaughter, Claudia (who had a baby just about eleven months ago) arranged to have the whole Galla clan over for dinner so we could see everyone again. She and husband Michael are very nice folks, and have seen more of America’s national parks than we have. Her family brought along a couple of wonderful homemade German pastries, just like Marta always had for me when I visited her; a cheesecake and a plum kuchen, with every slice of plum laid out perfectly on the pastry base.
It was just wonderful to see everyone again, but I was somewhat embarrassed at how much German I had forgotten. I haven’t spoken much German in years, and no longer can think in German. Therefore, my German was halting at best. But, they spoke some English, and we got along well.
We continued on from Dettenheim to visit an aircraft museum, a medieval copper mine, a Celtic ring fort, the oldest town in Germany, Trier, which was founded by the Romans, and then we continued up the Moselle Valley. The trip was wonderful every day, and despite the many years we lived in Germany, and despite the many times we have been back to visit, we always find new things to see and enjoy.
We got back to town on a Monday afternoon, September 27th. Our plane was diverted around some nasty looking thunderstorms that we could see off to the west as we were coming back into Denver. But we landed safely and retrieved our luggage. As we approached Highlands Ranch it started to rain. Then, when we got into Highlands Ranch, I said to Kathy, “Hey, look at the snow on the ground!” There was white stuff all over the grass and the roads as we drove closer and closer to home. But she replied, “That can’t be snow, it’s 52 degrees (about 12C).” And indeed, the car thermometer said it was too warm to be snow. Only then did we notice that the trees were shredded and there were leaves all over the streets. HAIL!! We had just missed a big hail storm. Home was just a few blocks away. There were literally drifts of hail around the house and lots of pieces of broken shingles. Great! But the house was otherwise intact with no broken windows.
We couldn’t sleep much that night since now we were jet lagging again But we had to get some sleep, because the next morning I had another blood test and bone marrow biopsy scheduled. I also had an echocardiogram set up as a follow-up to the workup my internist was doing to look for a cause for my unrelenting fatigue. Getting up for the tests wasn’t a problem, because when you’ve just returned from Europe, your body not too gently awakens you at about 2AM. And you cannot will yourself back to sleep.
We got up in plenty of time and got through the tests without incident. The bone marrow biopsy hurt again, as usual, but they really aren’t intolerable. I don’t fear them anymore. Kathy and I even had Mexican food at El Tejado between the two tests. I was anxious to see what my blood tests and biopsy results showed so the next day I went to work and got into the computer to see what I could find out. The only result that was back was my blood test, which was completely normal. My white count, which had been “critically low” for weeks, was now completely normal!
“Now ain’t that the sh*ts!” as my step-dad might say. With this result, we didn’t even need to have done the bone marrow biopsy at all! After having been “critically low for weeks, suddenly my white cell count was back to normal. Who can explain these things?
A couple of days later I checked the computer again to see if the biopsy was back. It was, and it too, was completely normal. I’m back to where I was in December 2002 with normal bone marrow that has no detectable traces of leukemia, even with very sensitive tests! I’m not as ecstatic about these results as I was last time, however. Then I thought it was some kind of miracle, that maybe I had been, against all odds, cured. Now I know better, and I know that it is likely to come back again, but we just don’t know when. I have to be very grateful, however, that the treatments work so well, and that my particular strain of the disease seems to be very sensitive to the drugs we’re using. The fact that so many of my friends are praying for me has to be having a great effect on all this as well.
But just like those wonderful German county roads, around every curve is another curve and more unexpected surprises. After looking at the bone marrow results, I looked to see if my echocardiogram had been read. It had. The results said, in brief: “…moderate to severe mitral regurgitation with an atrial septal aneurysm with a patent foramen ovale or atrial septal defect, and mild tricuspid regurgitation…needs further evaluation depending upon whether or not he’s a surgical candidate.” And there was more, about mild myxomatous degeneration, leaky aortic valve, and stuff like that. For you non-medical types who might be reading this, it says my heart valves are leaking badly and I might need heart surgery.
Man, I didn’t see that coming. I’ve been feeling tired for months now, but blamed it on the leukemia, the chemotherapy, the depression, or a combination of these things. I’ve had a little mitral valve prolapse (the strongest of the heart valves, on the left side of then heart where the pumping of blood to the body takes place) for years, even with a little regurgitation (blood leaking past the valve when the heart pumps) for a while, but it never has been a problem. But I guess I should have expected it. My mom had the same problem and ended up having her valve replaced when she was about 77 years old. Unfortunately, they waited until she was in heart failure before they did the surgery and she had a very difficult time; she almost didn’t survive the surgery. If I need to have the surgery, I suppose I’d rather get it done sooner rather than later. I need to plan any surgery, and recovery too, around my other main attraction, the leukemia, as I have to be in a prolonged remission to be able to have the surgery. Also, if I’m going to retire in the next year or so, I’d like to get the surgery done before I leave this place rather than going someplace new and looking for a doc to open my heart!
This is ironic. My dad had multiple diseases; diabetes, gout, hypertension and leukemia. I got his leukemia. My mom has always been pretty healthy other than needing her mitral valve replaced a few years ago. And she gave me her bad mitral valve. Actually, when I was talking to her about this she said she didn’t give me the bad mitral valve, rather I “took it.”
Last month I celebrated my birthday, while we were in the Moselle Valley, near Cochem. Kathy gave me some great cards and our German friends in Dettenheim had given me several gifts as well (it’s an interesting and curious thing to note that the word “gift” in German means “poison”). We stopped at a small shop and had tasty kuchen for a midafternoon snack and wished me a happy birthday as we finished touring a local museum. This was my third birthday to celebrate after having gotten my diagnosis of leukemia, and I’m currently doing well (if one doesn’t consider the need for heart surgery). I have to think that I might exceed that “six year average longevity” that I was quoted three years ago, three long years that seems decades ago now. My bone marrow is currently completely normal, so I’m back to square one, as it were.
So that’s all our news. I’ve written plenty for this edition. I’ll write again, perhaps in the format of the previously mentioned travelogue for those of you who might be interested. I’ll also go over some of the many comments I received about my “poodle cut” hair and reactions to my visit with the massage therapist!
Until then,
Dave
“Those who pray for an uneventful journey have missed the purpose of the trip.” --Unknown
"Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well - preserved body, but rather to skid in sideways, champagne in one hand - strawberries in the other, body thoroughly used up, totally worn out and screaming, "WOO HOO - What a Ride!" --Unknown
Postscript 5
October 7, 2004
Around every curve….
Well, we made it to Germany and back. And we did well, never got sick, and though we, and especially I, were/was tired a lot, we had, as expected, a wonderful time. It had been almost three years since our last trip to Germany. I had almost forgotten how much I love that country. In some ways, it is, to me, like a huge theme park, like being in a mega-Disney World. I love just about everything about it. I love the little towns, I love the food, I love the sounds of tires and wheels on cobblestones, I love the old half-timbered (commonly called Tudor style in America) buildings which date back many hundreds of years, I love the smells of the little towns in the mornings, where one can smell hardwood burning in the cook stoves, I love the little non-chain stores, I love the language, I love the roads….
I really love the roads, but I’ll bet you already have the wrong idea. Truly, I love the autobahns, as you’re probably thinking. They are incredibly well engineered, are wide, and are multi-laned, and there are long stretches which have no speed limits whatever. I drove fast on occasions during this trip, but I probably did no more than 110mph (about 180kph). Some of you who haven’t been to Germany may think that is fast, but when I lived in Germany and drove Porsches and BMWs, I routinely drove 125-140mph on a daily basis. Hey, roads are made to get you places quickly. Cars are designed to do the same.
But I like all the roads. The autobahns are the “A” roads, but they have great “B” roads, which are the federal roads, like Highway 66, and they have “C” roads, which are the state roads. At this level, the roads are getting narrower and more curving and twisty. But then there’s the local county roads. I’ve come to love them almost as much, or maybe a little more than the autobahns. I have been known to go out of my way to take an indirect route from one town to the next, just to be able to drive these little county roads.
The roads I’m talking about are but one broad lane wide, with absolutely no shoulders, and not even a center line. They are never straight. The edges of the road are carefully painted with white stripes to let you know, with certainty, where the edge is. When you meet oncoming traffic, you’d best be on the white line or your mirrors may kiss each other. Trucks don’t drive these roads, so narrow are they. These roads are routinely very winding and follow the topography, not cutting straight through hills and slopes as more modern roads do. They follow paths laid out centuries ago by animals, knights and stage coaches. They tend to be lined by heavy growth of bushes and trees, and the trees frequently meet overhead so that you have the impression of driving through a brushy green tunnel. There are leaves on the road that fly up behind you. On the uphill sides of these meandering roads the bank of the hills are usually reinforced with old red sandstone blocks, which are green with the moss that grows down their sides. The foliage opens up as you approach each ancient village, as the towns on these roads tend to be old indeed. And as you leave one town, you can usually see the red tiled roofs of the next village just a few kilometers further down the road. Entering again the green tunnel, you never can see too far ahead. The twists of the road are such that as you round one curve in the road, you are approaching another curve with more surprises in store. Wonderful.
So we got to Germany safely, but very tired. That was to be expected, even flying in those wonderful business class seats. Everyone suffers from jet lag when you fly to Europe. We checked into a 500 year-old hotel in Miltenberg, a place we’ve stayed many times, and spent a few days there to rest up and get used to the time change. I’ll probably describe the trip itself in some sort of DGA Travelogue for anyone interested, so I’ll not go into too much detail here.
On the third day of our trip we checked out and headed to Heidelberg. It also is a favorite town, and is a place I lived with my family in the 1950s when I was a naughty little boy. But now, our friends the Bakers live there. We’ve known each other for a couple of decades, since our days in El Paso in the ‘80s. Brian is a doc at the American hospital there, and our plan was for him to order a blood test for me, to make sure that my white count wasn’t falling any further. I had promised my doc here in town that I would do that before he let me go on the trip. (What we would have done if I was actually getting critically ill during the trip is a matter of conjecture)
But, we were able to get me entered into the local computer system which enabled Brian to order the complete blood count. It was still “critically low” but no worse that when we left Denver. Since I was still feeling well, we continued the trip and I didn’t feel the need to bother my doc back here in Denver with the news.
Staying with the Bakers is always a wonderful experience that I wish all of you could experience. Hey, maybe I could invite ALL of you over to their house for dinner some night! They are wonderful hosts and feed you very, very well. I’ll tell you more about that in the travelogue to follow sometime soon. We were able to catch up on current events and spend a little time in downtown Heidelberg doing some Christmas shopping.
Our next stop was Dettenheim, where the granddaughter of the poor woman who had to take care of me when I was the previously mentioned naughty little boy in the 1950s, now lives. Marta Galla was my nanny. She was a jewel of a person and just a lot of fun to be around. Her daughters also helped care for my siblings and me. Marta unfortunately died of a sarcoma a few years ago, but we have been able to keep in touch with her family. Her granddaughter, Claudia (who had a baby just about eleven months ago) arranged to have the whole Galla clan over for dinner so we could see everyone again. She and husband Michael are very nice folks, and have seen more of America’s national parks than we have. Her family brought along a couple of wonderful homemade German pastries, just like Marta always had for me when I visited her; a cheesecake and a plum kuchen, with every slice of plum laid out perfectly on the pastry base.
It was just wonderful to see everyone again, but I was somewhat embarrassed at how much German I had forgotten. I haven’t spoken much German in years, and no longer can think in German. Therefore, my German was halting at best. But, they spoke some English, and we got along well.
We continued on from Dettenheim to visit an aircraft museum, a medieval copper mine, a Celtic ring fort, the oldest town in Germany, Trier, which was founded by the Romans, and then we continued up the Moselle Valley. The trip was wonderful every day, and despite the many years we lived in Germany, and despite the many times we have been back to visit, we always find new things to see and enjoy.
We got back to town on a Monday afternoon, September 27th. Our plane was diverted around some nasty looking thunderstorms that we could see off to the west as we were coming back into Denver. But we landed safely and retrieved our luggage. As we approached Highlands Ranch it started to rain. Then, when we got into Highlands Ranch, I said to Kathy, “Hey, look at the snow on the ground!” There was white stuff all over the grass and the roads as we drove closer and closer to home. But she replied, “That can’t be snow, it’s 52 degrees (about 12C).” And indeed, the car thermometer said it was too warm to be snow. Only then did we notice that the trees were shredded and there were leaves all over the streets. HAIL!! We had just missed a big hail storm. Home was just a few blocks away. There were literally drifts of hail around the house and lots of pieces of broken shingles. Great! But the house was otherwise intact with no broken windows.
We couldn’t sleep much that night since now we were jet lagging again But we had to get some sleep, because the next morning I had another blood test and bone marrow biopsy scheduled. I also had an echocardiogram set up as a follow-up to the workup my internist was doing to look for a cause for my unrelenting fatigue. Getting up for the tests wasn’t a problem, because when you’ve just returned from Europe, your body not too gently awakens you at about 2AM. And you cannot will yourself back to sleep.
We got up in plenty of time and got through the tests without incident. The bone marrow biopsy hurt again, as usual, but they really aren’t intolerable. I don’t fear them anymore. Kathy and I even had Mexican food at El Tejado between the two tests. I was anxious to see what my blood tests and biopsy results showed so the next day I went to work and got into the computer to see what I could find out. The only result that was back was my blood test, which was completely normal. My white count, which had been “critically low” for weeks, was now completely normal!
“Now ain’t that the sh*ts!” as my step-dad might say. With this result, we didn’t even need to have done the bone marrow biopsy at all! After having been “critically low for weeks, suddenly my white cell count was back to normal. Who can explain these things?
A couple of days later I checked the computer again to see if the biopsy was back. It was, and it too, was completely normal. I’m back to where I was in December 2002 with normal bone marrow that has no detectable traces of leukemia, even with very sensitive tests! I’m not as ecstatic about these results as I was last time, however. Then I thought it was some kind of miracle, that maybe I had been, against all odds, cured. Now I know better, and I know that it is likely to come back again, but we just don’t know when. I have to be very grateful, however, that the treatments work so well, and that my particular strain of the disease seems to be very sensitive to the drugs we’re using. The fact that so many of my friends are praying for me has to be having a great effect on all this as well.
But just like those wonderful German county roads, around every curve is another curve and more unexpected surprises. After looking at the bone marrow results, I looked to see if my echocardiogram had been read. It had. The results said, in brief: “…moderate to severe mitral regurgitation with an atrial septal aneurysm with a patent foramen ovale or atrial septal defect, and mild tricuspid regurgitation…needs further evaluation depending upon whether or not he’s a surgical candidate.” And there was more, about mild myxomatous degeneration, leaky aortic valve, and stuff like that. For you non-medical types who might be reading this, it says my heart valves are leaking badly and I might need heart surgery.
Man, I didn’t see that coming. I’ve been feeling tired for months now, but blamed it on the leukemia, the chemotherapy, the depression, or a combination of these things. I’ve had a little mitral valve prolapse (the strongest of the heart valves, on the left side of then heart where the pumping of blood to the body takes place) for years, even with a little regurgitation (blood leaking past the valve when the heart pumps) for a while, but it never has been a problem. But I guess I should have expected it. My mom had the same problem and ended up having her valve replaced when she was about 77 years old. Unfortunately, they waited until she was in heart failure before they did the surgery and she had a very difficult time; she almost didn’t survive the surgery. If I need to have the surgery, I suppose I’d rather get it done sooner rather than later. I need to plan any surgery, and recovery too, around my other main attraction, the leukemia, as I have to be in a prolonged remission to be able to have the surgery. Also, if I’m going to retire in the next year or so, I’d like to get the surgery done before I leave this place rather than going someplace new and looking for a doc to open my heart!
This is ironic. My dad had multiple diseases; diabetes, gout, hypertension and leukemia. I got his leukemia. My mom has always been pretty healthy other than needing her mitral valve replaced a few years ago. And she gave me her bad mitral valve. Actually, when I was talking to her about this she said she didn’t give me the bad mitral valve, rather I “took it.”
Last month I celebrated my birthday, while we were in the Moselle Valley, near Cochem. Kathy gave me some great cards and our German friends in Dettenheim had given me several gifts as well (it’s an interesting and curious thing to note that the word “gift” in German means “poison”). We stopped at a small shop and had tasty kuchen for a midafternoon snack and wished me a happy birthday as we finished touring a local museum. This was my third birthday to celebrate after having gotten my diagnosis of leukemia, and I’m currently doing well (if one doesn’t consider the need for heart surgery). I have to think that I might exceed that “six year average longevity” that I was quoted three years ago, three long years that seems decades ago now. My bone marrow is currently completely normal, so I’m back to square one, as it were.
So that’s all our news. I’ve written plenty for this edition. I’ll write again, perhaps in the format of the previously mentioned travelogue for those of you who might be interested. I’ll also go over some of the many comments I received about my “poodle cut” hair and reactions to my visit with the massage therapist!
Until then,
Dave
“Those who pray for an uneventful journey have missed the purpose of the trip.” --Unknown
"Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well - preserved body, but rather to skid in sideways, champagne in one hand - strawberries in the other, body thoroughly used up, totally worn out and screaming, "WOO HOO - What a Ride!" --Unknown
Sunday, September 12, 2004
Off to Germany--A Very Brief Update
Dave's Great Adventure, Book 2
Postscript 4
September 12, 2004
We're off!
I wanted to send out a brief message to all my friends to let all you know that we're going to be able to go to Germany despite my white counts being low. I was afraid we would have to cancel all our reservations.
I repeated my blood counts again after my last message and found that my white cell count, and especially the neutrophil counts, had dropped yet again. I discussed this with my doc, and he said we could go on the trip, but that he wants to do another bone marrow biopsy was soon as I get back. And, he gave me a bottle of new and improved antibiotics, a kind I'd not heard of, just in case I were to get ill during the trip.Has anyone out there heard of moxifloxacin? I guess they're pretty powerful.
On this trip Kathy will be keeping me as far as possible from crowds, sick folks, door knobs and coins. She's just great at protecting me from the bad things out there. Being on an airplane is a worry, of course, but we won't be back in steerage. Since we'll be in business class, there will be a lot of room between us and the people around us.And, I have a whole pack of masks I can put on if we detect any danger nearby. Wish us luck!
And, I'm to get another blood count during our trip. One of the first places we'll be going is not too far from Heidelberg and I'm going to stop in at the American military hospital there to get a count done.One of our friends, Dr. Brian Baker, works there part time and is going to help arrange this before we go on to their home. I delivered Brian and his wife Marcia's first child a long time ago. And, do you know that to this day they blame ME for all their child's problems, since I was the first person to lay hands on him. Now is that fair? It's been a couple of decades, after all!
It's a little worrisome being so far from home with a low white cell count and therefore a compromised immune system, but if we have any problems, I can go to the military hospitals in either Heidelberg or Landstuhl, both of which my father worked in years ago when he was in the Army. It's nice to have that care available while we're so far from home.
And so, off we go. We'll be in touch when we get back, probably after we get the bone marrow results back.
Until then,
Dave
Postscript 4
September 12, 2004
We're off!
I wanted to send out a brief message to all my friends to let all you know that we're going to be able to go to Germany despite my white counts being low. I was afraid we would have to cancel all our reservations.
I repeated my blood counts again after my last message and found that my white cell count, and especially the neutrophil counts, had dropped yet again. I discussed this with my doc, and he said we could go on the trip, but that he wants to do another bone marrow biopsy was soon as I get back. And, he gave me a bottle of new and improved antibiotics, a kind I'd not heard of, just in case I were to get ill during the trip.Has anyone out there heard of moxifloxacin? I guess they're pretty powerful.
On this trip Kathy will be keeping me as far as possible from crowds, sick folks, door knobs and coins. She's just great at protecting me from the bad things out there. Being on an airplane is a worry, of course, but we won't be back in steerage. Since we'll be in business class, there will be a lot of room between us and the people around us.And, I have a whole pack of masks I can put on if we detect any danger nearby. Wish us luck!
And, I'm to get another blood count during our trip. One of the first places we'll be going is not too far from Heidelberg and I'm going to stop in at the American military hospital there to get a count done.One of our friends, Dr. Brian Baker, works there part time and is going to help arrange this before we go on to their home. I delivered Brian and his wife Marcia's first child a long time ago. And, do you know that to this day they blame ME for all their child's problems, since I was the first person to lay hands on him. Now is that fair? It's been a couple of decades, after all!
It's a little worrisome being so far from home with a low white cell count and therefore a compromised immune system, but if we have any problems, I can go to the military hospitals in either Heidelberg or Landstuhl, both of which my father worked in years ago when he was in the Army. It's nice to have that care available while we're so far from home.
And so, off we go. We'll be in touch when we get back, probably after we get the bone marrow results back.
Until then,
Dave
Wednesday, September 1, 2004
Depression,Curly Hair and the Massage Therapist!
Dave’s Great Adventure, Book Two
Postscript 3
September 1, 2004
No news is good news.
We’ve had a wonderfully mild spring, summer and early fall here in the Rocky Mountain west. It’s generally been cool (too cool sometimes, like when we were wearing sweatshirts in the house in July, because the heat had been turned off) and we’ve had more moisture than the last several years. The reservoirs are filling up a bit, the bureaucrats are dropping watering restrictions, and we’ve only had to use the sprinklers a few times the whole summer. And, even though it’s technically still summer, in the Rockies it is already early fall. We’re getting snow in the mountains, and it will be here soon. Our first September here it was 90 degrees one day and then we had ten inches of snow the next. Crazy!
I’ve been getting occasional inquiries about my health from friends and family, since it’s now been about five months since I distributed any of my stories. It is rather unlike me to be silent for so long. But there are two reasons for this extended period of silence.
First, there has been very little to report. I have been getting blood tests monthly, and they have been relatively normal, with no immediate evidence of return of the “bad guys.” In fact, if anything, my white count is unusually low, which worries me about the coming flu season. I wonder if it’ll be okay for me to be in a clinic where sick folks come to cough and throw up, when my white count, and therefore my immunity, may not be as good as they should be.
I’ve been doing well, overall. My hair has returned (more about that later) and I’m still working three to four days a week. But I continue to be tired most days, almost lethargic at times. I’m in the middle of a workup by my internist to see if anything else is going on. I’m going to do another cardiac stress test in a few weeks, and will have an echocardiogram of my heart as well.
The other, and probably the main reason I haven’t written sooner, is because of my medications. Now, I’ve been depressed to some extent ever since I found I had leukemia. I’ve had good days, and I’ve had some very bad days. But in general, I’ve been depressed. You kind folks know that; you’ve been exposed to my stories for a couple of years now and the depression is, at times, hard to miss. I’ve been encouraged by friends, family and colleagues to consider antidepressant medications for many months, but I resisted. I felt I should be able to battle through this with my own inner strengths.
Finally, last April, I think it was, I asked my internist if he’d give me some drugs, Prozac, in particular. I was feeling so slow, tired and sad, that I just wanted something to give me a bit of a lift. I figured Prozac might do it. So I started on it. And almost immediately, it seems, my desire to write went away. I was reminded of the story I told you about, probably last March, about the doctor who had hypergraphia, an overwhelming desire to write. She mentioned in her story that all the depressives in her support group were keeping journals. Well, it seems that I was too. Of course, you all are part of this journal. But as soon as I started the Prozac, I had no desire to write. I was thinking of things that I wanted to write down, and really have been thinking of getting out this update for months, but couldn’t find the energy or interest in sitting down at the keyboard to do it.
About six weeks ago, I decided that the medication really didn’t seem to be helping me with my energy levels or initiative. I just felt “flat” most of the time. So, I started weaning myself off the Prozac. Sure enough, my desire to write stuff down returned almost immediately, just in time for me to write some ill-advised political commentary to my family and some friends. Well, I went back on for a while, but am now weaning myself off again. We’ll see how I do.
Now, the last time I wrote to you kind folks it was in April, I believe, and I was completely bald. I even included pictures for those of you who can get them. If fact, there were three bald heads in the family, as our two sons also shaved their heads at the same time. Well, my hair has come in very thick in the last four months, and it is extremely curly. I’ve never had curly hair before, it always having been very fine and straight. But now I look like a poodle. I really can’t do anything with it. I wash it, try to comb it, but mostly I just dry it with a towel after my bath and it goes, “Sproing” and does whatever it wants to do. Kathy loves playing with my little curls! People tell me they’d pay a lot of money for curls like mine. I tell them that Kaiser paid $60,000 for those curls. They didn’t come cheap. Some folks say that my hair may straighten out to what it used to be like in a year or two, but whatever happens is okay. The hair is the least of my worries. I’ll try to remember to attach a picture when I send this out. I have a haircut scheduled for this weekend. I have no idea at all what to tell my barber about how I want my hair cut!
It’s now been two and a half years since I was diagnosed with leukemia, at which time my doc told me the average longevity was about six years from diagnosis. That, in theory anyway, would leave me with about three and half more years to go before the “terminal event.” But there’s cause for optimism. Folks with my disease have varying life spans, from a few months to a couple of decades or more. Those unfortunate folks who have very aggressive disease and die within a couple of years bring down the “average” life expectancy. So, having survived the first couple of years, relatively intact, I have to think that maybe I’m going to fall in the somewhat longer-lived group of patients. Of course, I don’t want to get too hopeful too soon, but, so far, so good.
Kathy and I have some great news to report to you. Three weeks ago we went to El Paso, Texas to attend the wedding of our son, Jon, to Natalie Campos, on August 7th. We had a wonderful time with them and many of our family members who were able to be there with us. It was great meeting Natalie’s family as well. They are just real nice folks. The nuptial couple celebrated their honeymoon in Paris and reportedly had a very interesting and culturally enlightening experience, when they weren’t succumbing to jet lag.
And just last week, Kathy and I celebrated our 35th wedding anniversary. Our kids treated us to a first class dinner at a local bistro. They even remembered to order us a vase of white daisies, like the ones in Kathy’s wedding bouquet so many years ago. I gave her a diamond pendant for having tolerated me for the last three and half decades. She gave me a cool high-power eyepiece for my telescope.
And while I’m mentioning such things, I should also mention that my step-dad, Lloyd Lee, celebrated his 90th birthday last June. We were able to go to Iowa to help mark the event which attracted over a hundred of his friends and relatives. Lloyd is still going strong and golfs most weeks during the summer.
I had a very interesting experience while we were in El Paso for the wedding! I had been having back spasms for a couple of weeks, that were waking me at night in pain. Nothing I could do in terms of stretching or exercising was making a difference in the way my back and upper neck felt. When we checked into the hotel in El Paso, Kathy noticed that they advertised the fact that they had a registered massage therapist “on site.” Kathy asked if I thought a massage would help. I was willing to try anything, so bothersome was the pain and interrupted sleep. So I made an appointment.
But then I began to get nervous. I’d never had a massage before. What was going to happen? Would the therapist be a guy or a gal, would I be embarrassed, would this be a legitimate massage or one of those kinds of things where they offer “special services.” “Would you go with me?” I asked Kathy. “Are you serious?” she answered, telling me how she felt about going along.
At 2:00, the phone rang. It was my therapist, waiting for me in the lobby. I went to meet her. She was Martina, a German lady about 35 years old, from Flensburg in northern Germany. “Good,” I thought, “I’ll have something to talk about.” She took me up to the massage room. I expected it to be rather clinical, with one of those massage chairs that I could sit in and bend over on, so she could work on my back. Wrong! It was about ten by eight feet, dark, with scented candles, Enya on the CD player, lacy curtains along the walls and a padded table in the middle of the room. Yikes!
Martina asked me what problems I was having and I told her that I was having the aforementioned back and neck pains. She actually took a short medical history and then asked me to get ready. I took off my shirt. I figured, she’s going to work on my back, right?
“Would you be uncomfortable taking all your clothes off,” she asked. “Uhh, yeah,” I answered. “Would you do it anyway,” she then asked, rather commandingly. “Uhh… okay,” I replied. She stepped out so I could undress and cover with a small towel. I took everything off except my underwear. I figured that, she’s going to work on my back. It should be okay to leave my underwear on, right? I covered my middle with the towel and lay down on my back, as she had told me.
Martina came back in and started to work. She started on my scalp, then went to my face, my chest, my upper arms. “When the heck is she going to get to my back,” I wondered. Then she went down to my feet, working up to my ankles, my calves and then my inner thighs, getting awfully close to Mr. Happy! Yikes again!!!
But then she asked me to roll over on my stomach. As I did, she saw that I had left my underwear on. “You naughty boy, you still have on your undies,” she said. “Uhh, yeah, uhh… I didn’t think you’d want me to take them off too, did you?” I pleaded. “Well, would you mind taking them off?” she again asked. She said she wouldn’t look.
I struggled to stay under the little white towel while trying to slip my underwear down. It was impossible to stay covered, but I managed to get them off.
(As an aside, while telling our daughter about this incident, she was beside herself with laughter about me, who sees naked women everyday in my work, being so shy about getting naked in front a woman.)
So, I got turned over and more or less covered again, and Martina went back to work. She started at my feet and worked up again, eventually (thank God!) getting to my back. I was glad she got away from my thighs. She worked me over, found all the sore spots, and stretched the sore area. She did a good job and eventually, it felt good, but unfortunately, it didn’t last. I was sore again by the next day.
Which brings me to the next part of the story. I was having so much pain, and was having tingling going down my left arm, so I decided to see a chiropractor. Now, even though I am an osteopath, and have training in manipulation (more commonly known as “bone cracking”) I have been leery of chiropractors because of things I hear from patients occasionally. Like getting “liver purges,” or high colonics, or multiple expensive x-rays, etc. But my health care organization, Kaiser Permanente, has a couple of chiropractors on staff. I figured they should be legitimate, so I gave them a try. And I have to say that I was very pleasantly surprised. After two treatments my problem was 95% gone. I guess I’ll be going back when I have these kinds of problems.
Kathy and I are in the very preliminary stages of planning a move to Texas, where all the kids live. We’re thinking we might move around the end of next year, but I’m trying to plan any move around my health, and would like to get through my next relapse and recovery before we move. Of course, when that might be is completely unpredictable, but will likely happen within the next year or so. So we’re starting to check out retirement communities and health care facilities in Texas, plus the health insurance coverage that we’ll have when we get there, trying to make sure it’ll be adequate.
Knowing that we’ll be leaving Colorado in the fairly near future, we’re also taking short trips around the state to many of the wonderful places we’ve been hearing about but haven’t been to see in person. Over the last couple of years I’ve taken Kathy to Antarctica, Alaska, Mexico and lots of other places, but we haven’t spent enough time closer to home. So we’ve been up to Steamboat Springs, down to Durango, into the Mesa Verde National Park to see the Indian ruins, into the ghost town of Gothic, to the rim of the Black Canyon of the Gunnison, and lots of other smaller out of the way places. This state really has a tremendous number of things to see. And we’re going to try to get to as many of them as we can in the time we have left here.
But of course, we’re not going to go just to places in Colorado. We haven’t visited our friends and relatives in Germany in quite a while now. We’ve been collecting frequent flyer miles for a couple of years, and decided to cash them in on a trip to Germany later this month, if my doc will let me go. We are supposed to leave on September 13th and will be there for a couple of weeks. We’re flying business class! Thanks to all those frequent flyer miles. I couldn’t afford to pay for business class for an overseas trip.
Speaking of my doc letting me go, while I’ve been putting this together over the last couple of days there’s been an interesting development in my condition. I had a blood count done last week, and it came back with a critically low white cell count, the lowest it’s been since I was actually undergoing chemotherapy. And I haven’t had any chemotherapy in about six months. A couple of years ago, my white count dropped to 1,000 with a neutrophil (remember the bacteria fighters?) of only 100 during my first round of drugs (normal is about 3,500 to about 10,000 or so). Well, at the moment, my white count is only 1,700 with 400 neutrophils. That’s very low indeed. I’m to repeat the count (for the third time in a week) and if it doesn’t go up significantly, my doc wants to “marrow” me, in other words, do another bone marrow biopsy. Oh boy!
So, it’s a good news/bad news story…. The good news is that at least my white count isn’t going too fast. But the bad news is, my white count isn’t going up too fast!
So, just in time for this issue of the never-ending DGA, there is, in fact, some news. I’ll keep you updated, of course.
That’s all the news that’s fit to print, at least for now. Until later….
Dave
“Life is like wrestling a gorilla; you don’t stop when you get tired, you stop when the gorilla gets tired.” --from my brother-in-law and good buddy, Ray, up in Montana.
Postscript 3
September 1, 2004
No news is good news.
We’ve had a wonderfully mild spring, summer and early fall here in the Rocky Mountain west. It’s generally been cool (too cool sometimes, like when we were wearing sweatshirts in the house in July, because the heat had been turned off) and we’ve had more moisture than the last several years. The reservoirs are filling up a bit, the bureaucrats are dropping watering restrictions, and we’ve only had to use the sprinklers a few times the whole summer. And, even though it’s technically still summer, in the Rockies it is already early fall. We’re getting snow in the mountains, and it will be here soon. Our first September here it was 90 degrees one day and then we had ten inches of snow the next. Crazy!
I’ve been getting occasional inquiries about my health from friends and family, since it’s now been about five months since I distributed any of my stories. It is rather unlike me to be silent for so long. But there are two reasons for this extended period of silence.
First, there has been very little to report. I have been getting blood tests monthly, and they have been relatively normal, with no immediate evidence of return of the “bad guys.” In fact, if anything, my white count is unusually low, which worries me about the coming flu season. I wonder if it’ll be okay for me to be in a clinic where sick folks come to cough and throw up, when my white count, and therefore my immunity, may not be as good as they should be.
I’ve been doing well, overall. My hair has returned (more about that later) and I’m still working three to four days a week. But I continue to be tired most days, almost lethargic at times. I’m in the middle of a workup by my internist to see if anything else is going on. I’m going to do another cardiac stress test in a few weeks, and will have an echocardiogram of my heart as well.
The other, and probably the main reason I haven’t written sooner, is because of my medications. Now, I’ve been depressed to some extent ever since I found I had leukemia. I’ve had good days, and I’ve had some very bad days. But in general, I’ve been depressed. You kind folks know that; you’ve been exposed to my stories for a couple of years now and the depression is, at times, hard to miss. I’ve been encouraged by friends, family and colleagues to consider antidepressant medications for many months, but I resisted. I felt I should be able to battle through this with my own inner strengths.
Finally, last April, I think it was, I asked my internist if he’d give me some drugs, Prozac, in particular. I was feeling so slow, tired and sad, that I just wanted something to give me a bit of a lift. I figured Prozac might do it. So I started on it. And almost immediately, it seems, my desire to write went away. I was reminded of the story I told you about, probably last March, about the doctor who had hypergraphia, an overwhelming desire to write. She mentioned in her story that all the depressives in her support group were keeping journals. Well, it seems that I was too. Of course, you all are part of this journal. But as soon as I started the Prozac, I had no desire to write. I was thinking of things that I wanted to write down, and really have been thinking of getting out this update for months, but couldn’t find the energy or interest in sitting down at the keyboard to do it.
About six weeks ago, I decided that the medication really didn’t seem to be helping me with my energy levels or initiative. I just felt “flat” most of the time. So, I started weaning myself off the Prozac. Sure enough, my desire to write stuff down returned almost immediately, just in time for me to write some ill-advised political commentary to my family and some friends. Well, I went back on for a while, but am now weaning myself off again. We’ll see how I do.
Now, the last time I wrote to you kind folks it was in April, I believe, and I was completely bald. I even included pictures for those of you who can get them. If fact, there were three bald heads in the family, as our two sons also shaved their heads at the same time. Well, my hair has come in very thick in the last four months, and it is extremely curly. I’ve never had curly hair before, it always having been very fine and straight. But now I look like a poodle. I really can’t do anything with it. I wash it, try to comb it, but mostly I just dry it with a towel after my bath and it goes, “Sproing” and does whatever it wants to do. Kathy loves playing with my little curls! People tell me they’d pay a lot of money for curls like mine. I tell them that Kaiser paid $60,000 for those curls. They didn’t come cheap. Some folks say that my hair may straighten out to what it used to be like in a year or two, but whatever happens is okay. The hair is the least of my worries. I’ll try to remember to attach a picture when I send this out. I have a haircut scheduled for this weekend. I have no idea at all what to tell my barber about how I want my hair cut!
It’s now been two and a half years since I was diagnosed with leukemia, at which time my doc told me the average longevity was about six years from diagnosis. That, in theory anyway, would leave me with about three and half more years to go before the “terminal event.” But there’s cause for optimism. Folks with my disease have varying life spans, from a few months to a couple of decades or more. Those unfortunate folks who have very aggressive disease and die within a couple of years bring down the “average” life expectancy. So, having survived the first couple of years, relatively intact, I have to think that maybe I’m going to fall in the somewhat longer-lived group of patients. Of course, I don’t want to get too hopeful too soon, but, so far, so good.
Kathy and I have some great news to report to you. Three weeks ago we went to El Paso, Texas to attend the wedding of our son, Jon, to Natalie Campos, on August 7th. We had a wonderful time with them and many of our family members who were able to be there with us. It was great meeting Natalie’s family as well. They are just real nice folks. The nuptial couple celebrated their honeymoon in Paris and reportedly had a very interesting and culturally enlightening experience, when they weren’t succumbing to jet lag.
And just last week, Kathy and I celebrated our 35th wedding anniversary. Our kids treated us to a first class dinner at a local bistro. They even remembered to order us a vase of white daisies, like the ones in Kathy’s wedding bouquet so many years ago. I gave her a diamond pendant for having tolerated me for the last three and half decades. She gave me a cool high-power eyepiece for my telescope.
And while I’m mentioning such things, I should also mention that my step-dad, Lloyd Lee, celebrated his 90th birthday last June. We were able to go to Iowa to help mark the event which attracted over a hundred of his friends and relatives. Lloyd is still going strong and golfs most weeks during the summer.
I had a very interesting experience while we were in El Paso for the wedding! I had been having back spasms for a couple of weeks, that were waking me at night in pain. Nothing I could do in terms of stretching or exercising was making a difference in the way my back and upper neck felt. When we checked into the hotel in El Paso, Kathy noticed that they advertised the fact that they had a registered massage therapist “on site.” Kathy asked if I thought a massage would help. I was willing to try anything, so bothersome was the pain and interrupted sleep. So I made an appointment.
But then I began to get nervous. I’d never had a massage before. What was going to happen? Would the therapist be a guy or a gal, would I be embarrassed, would this be a legitimate massage or one of those kinds of things where they offer “special services.” “Would you go with me?” I asked Kathy. “Are you serious?” she answered, telling me how she felt about going along.
At 2:00, the phone rang. It was my therapist, waiting for me in the lobby. I went to meet her. She was Martina, a German lady about 35 years old, from Flensburg in northern Germany. “Good,” I thought, “I’ll have something to talk about.” She took me up to the massage room. I expected it to be rather clinical, with one of those massage chairs that I could sit in and bend over on, so she could work on my back. Wrong! It was about ten by eight feet, dark, with scented candles, Enya on the CD player, lacy curtains along the walls and a padded table in the middle of the room. Yikes!
Martina asked me what problems I was having and I told her that I was having the aforementioned back and neck pains. She actually took a short medical history and then asked me to get ready. I took off my shirt. I figured, she’s going to work on my back, right?
“Would you be uncomfortable taking all your clothes off,” she asked. “Uhh, yeah,” I answered. “Would you do it anyway,” she then asked, rather commandingly. “Uhh… okay,” I replied. She stepped out so I could undress and cover with a small towel. I took everything off except my underwear. I figured that, she’s going to work on my back. It should be okay to leave my underwear on, right? I covered my middle with the towel and lay down on my back, as she had told me.
Martina came back in and started to work. She started on my scalp, then went to my face, my chest, my upper arms. “When the heck is she going to get to my back,” I wondered. Then she went down to my feet, working up to my ankles, my calves and then my inner thighs, getting awfully close to Mr. Happy! Yikes again!!!
But then she asked me to roll over on my stomach. As I did, she saw that I had left my underwear on. “You naughty boy, you still have on your undies,” she said. “Uhh, yeah, uhh… I didn’t think you’d want me to take them off too, did you?” I pleaded. “Well, would you mind taking them off?” she again asked. She said she wouldn’t look.
I struggled to stay under the little white towel while trying to slip my underwear down. It was impossible to stay covered, but I managed to get them off.
(As an aside, while telling our daughter about this incident, she was beside herself with laughter about me, who sees naked women everyday in my work, being so shy about getting naked in front a woman.)
So, I got turned over and more or less covered again, and Martina went back to work. She started at my feet and worked up again, eventually (thank God!) getting to my back. I was glad she got away from my thighs. She worked me over, found all the sore spots, and stretched the sore area. She did a good job and eventually, it felt good, but unfortunately, it didn’t last. I was sore again by the next day.
Which brings me to the next part of the story. I was having so much pain, and was having tingling going down my left arm, so I decided to see a chiropractor. Now, even though I am an osteopath, and have training in manipulation (more commonly known as “bone cracking”) I have been leery of chiropractors because of things I hear from patients occasionally. Like getting “liver purges,” or high colonics, or multiple expensive x-rays, etc. But my health care organization, Kaiser Permanente, has a couple of chiropractors on staff. I figured they should be legitimate, so I gave them a try. And I have to say that I was very pleasantly surprised. After two treatments my problem was 95% gone. I guess I’ll be going back when I have these kinds of problems.
Kathy and I are in the very preliminary stages of planning a move to Texas, where all the kids live. We’re thinking we might move around the end of next year, but I’m trying to plan any move around my health, and would like to get through my next relapse and recovery before we move. Of course, when that might be is completely unpredictable, but will likely happen within the next year or so. So we’re starting to check out retirement communities and health care facilities in Texas, plus the health insurance coverage that we’ll have when we get there, trying to make sure it’ll be adequate.
Knowing that we’ll be leaving Colorado in the fairly near future, we’re also taking short trips around the state to many of the wonderful places we’ve been hearing about but haven’t been to see in person. Over the last couple of years I’ve taken Kathy to Antarctica, Alaska, Mexico and lots of other places, but we haven’t spent enough time closer to home. So we’ve been up to Steamboat Springs, down to Durango, into the Mesa Verde National Park to see the Indian ruins, into the ghost town of Gothic, to the rim of the Black Canyon of the Gunnison, and lots of other smaller out of the way places. This state really has a tremendous number of things to see. And we’re going to try to get to as many of them as we can in the time we have left here.
But of course, we’re not going to go just to places in Colorado. We haven’t visited our friends and relatives in Germany in quite a while now. We’ve been collecting frequent flyer miles for a couple of years, and decided to cash them in on a trip to Germany later this month, if my doc will let me go. We are supposed to leave on September 13th and will be there for a couple of weeks. We’re flying business class! Thanks to all those frequent flyer miles. I couldn’t afford to pay for business class for an overseas trip.
Speaking of my doc letting me go, while I’ve been putting this together over the last couple of days there’s been an interesting development in my condition. I had a blood count done last week, and it came back with a critically low white cell count, the lowest it’s been since I was actually undergoing chemotherapy. And I haven’t had any chemotherapy in about six months. A couple of years ago, my white count dropped to 1,000 with a neutrophil (remember the bacteria fighters?) of only 100 during my first round of drugs (normal is about 3,500 to about 10,000 or so). Well, at the moment, my white count is only 1,700 with 400 neutrophils. That’s very low indeed. I’m to repeat the count (for the third time in a week) and if it doesn’t go up significantly, my doc wants to “marrow” me, in other words, do another bone marrow biopsy. Oh boy!
So, it’s a good news/bad news story…. The good news is that at least my white count isn’t going too fast. But the bad news is, my white count isn’t going up too fast!
So, just in time for this issue of the never-ending DGA, there is, in fact, some news. I’ll keep you updated, of course.
That’s all the news that’s fit to print, at least for now. Until later….
Dave
“Life is like wrestling a gorilla; you don’t stop when you get tired, you stop when the gorilla gets tired.” --from my brother-in-law and good buddy, Ray, up in Montana.
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