Dave’s Great Adventure
August 13, 2002
The Recovery
Well, I remain acutely embarrassed by my inability to get my last two “verses” correctly sent on the first attempt. I would hope that it will not happen again. I really don’t like it at all when I accidentally send out a draft, only to find later that’s what I’ve done. I know that if you’ve already read the draft of a letter you won’t feel like reading a follow-up that seems essentially the same, for the most part. Therefore you’ll likely miss stuff that for some reason seemed important to me to add in a subsequent version. I hear that Dick and Jane in Iowa are laughing with/at me for my computer foibles. That’s okay, it’s only appropriate when I’ve had so many problems getting out a simple letter!
Well, last week after finally (I hope) getting out my update, I felt completely normal. I got out my to-do list and plowed into it. I went out and mowed the lawn, did chores around the house, and got ready to travel to Las Vegas, where we were to attend the wedding of our niece Hilary Eckberg, if I was feeling well enough. Gosh, I was a real eager beaver! (Note to our German friends, Claudia, Michael and Ursula; one of the curious things about American English is that this word can mean so many things. When combined with the word “eager” the word beaver can mean that a person is “fleissig.”) Anyway, I felt well enough to prepare for the trip.
That afternoon we got an interesting surprise. We got a phone call from our realtor (“Grundstuecksmakler“) in New Mexico. We had bought a piece of property in the Albuquerque area a few years ago that we thought we might build a house on to retire to in the future. Now that I am not able to leave the Denver area, because my health insurance is tied to this area, we decided to sell the land. We put it on the market just about 90 days ago. Well, when our realtor called she said she had a buyer for us who was willing to pay us $140,000 for the three acre property. That was a nice offer, as we had paid only $90,000 for it when we bought it. So we spent the rest of the afternoon faxing documents back and forth to get the deal completed. Now we’re just waiting for the buyer (who, curiously, is also a career military doc in the Air Force) to get his financing arranged. We’ll close the deal at the end of September.
We realized, while doing all the document exchanging, that with the sale of the land, we will no longer have any debt! We paid off our house last month, the land has been sold for a profit, we have no car payments! All we have to do is pay routine stuff, like taxes and insurance. Now, we’d been planning for this day so I could retire, but as I’ve mentioned before, now it’s ironic that I can’t really retire because I need the job at least for the health benefits. I can, however, reduce my hours steadily over the next few years to a minimum number of hours that may let me live a semi-retired life.
After finishing all our faxing of documents, Kathy and I went to a nearby Wendy’s for a quick meal. It was there that Kathy looked at my legs and asked me what “that rash” was. Looking at my legs, then my arms, and finally my chest, we saw that I was covered with a fine purplish rash. Hmmmm. I really felt okay, but a rash was one of the things that had been mentioned as a complication of the chemotherapy, or it could be the onset of a viral infection of some kind. We did not, of course, discover the rash until after my oncologist’s office had closed, so we couldn’t call for advice. I decided to just continue with our plans to go to Las Vegas the next day and cancel only if I really felt like I was getting sick the next morning. I could even call the office from the airport if I needed to, before we were to leave, but I wanted to get to the airport early (before the doc’s office would be opened) to be able to meet my Mom who was also flying through Denver en route to the wedding. We were to be on the same plane from Denver to Las Vegas. However, Kathy was worried about me and didn’t sleep well that night.
The next morning we got up early. The rash had abated a bit and I still felt well, so we went to the airport to meet Mom, who was flying in from Moline. Kathy made me park in the up close parking lot for $15 a day (!) so I wouldn’t have to walk so far. We usually park in the economy lot for $7 a day and walk a quarter mile or so to get to the terminal. That turned out to be an ironic thing to do as I spent the next four days walking miles around Las Vegas and doing fine with all the activity. Mom’s flight was on time at about 8:30 and we were able to meet her and help escort her to another terminal for the flight to Las Vegas. We went to a nearby place we like for breakfast and had a filling but overpriced meal.
We were able to get Mom’s seat assignment changed, with the help of an understanding fellow passenger, so that Mom could sit with us on the flight into Las Vegas, and then we had a very uneventful trip to “Sin City.” Any flight that can be described as “uneventful” is a good flight indeed. The flight was on-time and smooth.
I like getting together with family. Anybody’s family! Whether it’s the Eckbergs, Kathy’s family (the Doyles), with my cousins in Illinois, I really enjoy getting together with family and weddings are about as good an excuse as any to get together. Hilary was getting married to Todd Shiba so we were able to meet many of his family as well. In fact, his family members outnumbered ours. Of my immediate family, my Mom, all my sibs save one and all our kids were able to make the trip. It was a nice get-together.
The wedding was fun as well. Curiously, it was planned by the groom. Hilary is a free spirit and not too much into traditional stuff, so she let her groom-to-be plan the affair, and he did a great job, especially for a rookie. The ceremony was straightforward with elements of the Jewish tradition, as Hilary is Jewish, though Todd is of Japanese descent. The wedding cake was one of the neatest I’ve seen. It was decidedly non-traditional. It was intentionally lopsided, three layers of different colors with cartoon bride and groom perched on top.
We did, however, have some “tradition” at the wedding. It is an Eckberg family “tradition” to have a napkin fight after dinner. This began when our oldest child was but six months old and I was in Vietnam. Kathy would occasionally take Jon over to my parents’ home for meals. After dinner, my younger siblings, Deb and Dan, who were still at home, would gently toss napkins into Jon’s face. He loved it and would smile and laugh. This became a standard part of the family’s after-dinner activity, and has spread throughout the in-laws as well. We have had napkin fights all over the world, in some mighty fine restaurants, at family reunions, and at big Thanksgiving meals. We’ve embarrassed my Mom on many occasions with our juvenile antics.
Well, I thought we could introduce Todd’s family to the activity as well. After all the official wedding procedures had been completed and folks were sitting around mixing and talking, I attacked Hilary with a handful of linen napkins. She’s a feisty gal, and returned fire in kind. Soon a number of folks, including Hilary’s grandmother, were tossing napkins around. “A good time was had by all!”
As much as I liked getting together with all the family, that’s how much I really don’t like Las Vegas. I’ve never gone there unless I had to for a meeting or, in this case, a family activity. The family activity was wonderful, but the city is just one big facade. Mine is likely a minority opinion, as apparently millions of folks love the place, but I find it not really glitzy or “sparkling” but garish and overdone. It is almost completely phony. There is a fake Paris, a fake Egypt, a fake Venice, a fake New York, etc. It may be “pretty” but it’s all fake. I couldn’t get over all the tourists taking pictures of hotels and stores! Since when did hotels and stores become tourist attractions? Visiting Las Vegas to see the city must be very much like getting a “date” with a very expensive, very beautiful hooker (“Hure“) who’ll let you stay all night. The act may be the same, but it ain’t love. It’s hard to figure how the place can be so cheap and tawdry and at the same time be so expensive. They were charging $9.50 to go to the top of a fake Eiffel Tower! Anyone who has been there more recently than I is free to correct me, but I don’t think it costs that much to go to the top of the real item. I found it interesting that, in Las Vegas, of all places, they put a loincloth on a nude soldier on the fake Arc de Triomphe. Go figure. Naked women on exhibit everywhere, but we can’t have the tourists “exposed “ to an anatomically correct soldier on a copy of an historic sculpture!
The weather was pretty nice, but was the usual Las Vegas HOT! That presented some minor health issues as we were continuously going from the sidewalks, where the temperature was 110 degrees (43 C), to the hotels and shops where it was about 68 (20 C). And the air everywhere was fouled with cigarette smoke. There didn’t seem to be any non-smoking areas in the town. However, I managed to avoid getting sick despite being around literally thousands of smokers and tens of thousands of people crowded into the dark, noisy casinos that you were forced to walk through to get to anything you wanted to see. We ran the gauntlets of casinos and found our way to the lion exhibit at the MGM Grand, to the Antique Cars Museum at the back of the Imperial Palace, a Mexican restaurant in the Luxor and to a brew pub in the back of Monte Carlo. We would have liked to go to a show or two but they were very expensive and we wanted to spend time with the kids anyway. Did I mention that Jon brought along his girlfriend Natalie Campos? She’s a great gal, very bubbly and fun to be around. She’s as outgoing as Kathy and I are shy.
Hey, Kathy and I got a brush with celebrity during or time in Las Vegas. We were walking through the Bellagio Hotel/Casino when we spotted Denver’s mayor, Wellington Webb, walking through the halls with a woman not his wife. I thought it was his wife, Wilma, at first but Kathy corrected me. She thought the woman was his escort (uh, maybe that’s not a good term to use [it could also mean a “Hure“]) or some official of the hotel showing Webb around. Whatever!
The trip back was also uneventful. We got back late and then slept in late the next day. We spent all day yesterday doing errands and catching up on things. I got some good news, at least good for me. The kid who ran over and killed the bicycle rider took a plea so I don’t have to go to trial, which would have been today. He pled (or is it pleaded [spell check seems to like both]) guilty to felony hit-and-run resulting in death and careless driving. For killing the young father he will get 20 days, that’s DAYS, in jail and three years of probation! It doesn’t seem adequate punishment for what he took away from the family of the dead man.
And tomorrow I return to work for the first time in weeks. I’ll be working half days for the rest of the week and then again on Monday too. I expect to do well as I feel so normal. We’ll see. I’ll give you an update this weekend.
Something interesting happened today. We turned on our computer to look at our e-mail, and found an ad for some on-line porn. Now, that’s not, in itself, interesting because it happens all too frequently. What was interesting, however, was that the sender was dreck@prodigy.net! That’s us, of course. Someone has apparently co-opted our e-mail address and is using it to send out ads. I’ve sent a message to the Yahoo folks (who bought Prodigy recently) to see if this can be prevented in any way.
I had intended to tell you about how I felt when I got the news about my disease and its lethal prognosis. That stuff is rattling around in my brain and demands to be put on paper, but this has run on for so long that I think I’ll save it for the next update. Probably we’ll get that done in a few days.
By the way, my rash is almost gone and I feel well. This recovery from the first round of chemotherapy hasn’t really been all that bad. We’ll see how the next round goes.
Until later,
Dave
(Now, if I save this as .wps, but convert it to .txt for some folks and .rtf for some others...maybe I could save it as .doc and...maybe it would be better if I...no, wait, I think.........)
Tuesday, August 13, 2002
Tuesday, August 6, 2002
Feeling well, the special diet, and more "Beavers" jokes!
Dave’s Great Adventure
Chapter 1, Verse 8
August 6, 2002
Well, gosh, the last few days have been very good to me. I feel almost back to normal. More about that momentarily.
Many of you out there must wonder what the heck was up with the series of three e-mails with the last “verse” sent out Friday. What happened was that I wrote up a draft of my thoughts on Thursday and saved them. But my program saves it as .wps, a program some of my family can’t open. So when I send the message, I convert it to text or .rtf. However, some folks, like those on WebTV or those using MyMailStation can only get .txt messages, and the Mail Station folks can only get messages under one page in length. Anyway, I saved my draft, then added a bunch more on Friday, but failed to save the changes. Then I inadvertently sent out the draft! Then, in attempting to correct the problem I once again made the corrections and additions, which I AGAIN failed to save properly, resending the draft (and I thought I was over the mental “fuzzies”). I got it right only on the third try. If you didn’t read the third copy you received you didn’t get the whole story. Sorry. I’ll try to get it right in the future. I may just do all the messages in text format from now on so it’ll be harder for me to screw things up.
And this brings up an interesting situation. When I started sending out my thoughts on my leukemia and my chemotherapy a couple of weeks ago, I was just sending these out to a few family members and friends. I am finding that a lot more people than those few folks seem to be interested in my situation and my random musings on what’s going on with me. I still, really, have no objections whatever if my notes are forwarded on to other folks out there, but I know that family members are forwarding the stuff on to other people, who then in some cases are forwarding it on again. Still, I have no problem whatever with this (it even feeds my ego when I hear that I should have been a writer instead of a doctor [from my cousin/step-brother Tom in Atlanta]).
The only problem could be that I no longer really know with certainty who my “audience” is. Now, my humor occasionally verges on being bawdy (see the last verse‘s beaver jokes), but I don’t want to offend anyone. However, these are, after all, my thoughts and memories of my disease and therapy. If anyone finds the humor offensive, hey, that’s why God invented the delete button!
With my last verse I finished with a footnote about my most recent blood counts, which were excellent! I didn’t explain the numbers at all, and some of you may wonder what they mean. The two most important things were that my white count was down from over 60,000 to 5,000 (to a normal level, actually) and that the cells I need (red cells, platelets, and bacteria fighting white cells) are still normal as well. But what does that really mean? It just means the medicine is working as it should, but that’s about all. The white blood cells in the circulation are just the tip of the iceberg, if you will, and really reflect only indirectly what’s going on in the marrow, where the malignant cells are hanging out. So we need to attack them again and again, trying to reduce their numbers in the marrow to as few as possible. Then, I’ll hopefully be in remission for a while. And hopefully, while we’re doing all that attacking we won’t damage my required cells too badly. That could make me quite ill. My eldest son’s girlfriend says she’ll tell jokes to my neutrophils (bacteria fighting white cells), since I mentioned that they’re “depressed,” Hey, great stuff! We’ll see how this progresses over the next five months of treatments. We won’t actually know how well that is until I have another bone marrow biopsy a couple of months after the last treatment. That will report how many leukemic cells remain in hiding. See what I have to look forward too?
You know, having my white count fall to 5,000 is just incredible. I would have been happy just to see it drop to half or so, but a 95% drop!! It just must be because I have so many good folks praying for me in so many places. Not just family, friends, co-workers and patients, but friends of family, friends, co-workers and patients. Even patients I’ve never met, but who just know me are offering their thoughts and prayers. And did you know that I’m getting two or more humorous get-well cards each and every day. One of the folks sending a card every day is Joan. When I told her she ought to stop or she’d go broke from the postage costs she told me to get used to it... it’s her “mantra.” Another person sending a card every day is Debbie, my nurse. Not only does she send a card every day, but she just got back from a trip to Washington state and brought back with her two loaves of German bread and a dozen rolls. And lots more too! She’s just great. And I also get cards from my other co-workers in the clinic at the rate of one or two daily. The love just doesn’t end!
Since last Friday I have been slowly feeling more and more normal. Tired on occasions, to be sure, but not really unwell. We went out to visit our friends Lou and Joan last Saturday evening, as they had German friends visiting from Hamburg, and I managed to stay up ‘til about ten o’clock. The German guests were treated to genuine American food (it would have been silly to try to feed them German food, don’t you think) and the main course was buffalo burgers, something they’re unlikely to find at the local Gasthaus in Hamburg. The burgers were quite tasty. I had a small glass of wine with dinner that night and paid for it during the night when a migraine headache developed. I was told that the Cytoxan may cause headaches. Or maybe it‘s ‘cause I’m getting way to much sleep. Or maybe I just can’t tolerate any amount of alcohol anymore. Damn! Anyway, we missed church as I treated my head the next morning. But other than that, I’ve been feeling better and better and doing more and more each day. You know, if it weren’t fatal, this leukemia stuff wouldn’t be so bad!
Have I told you about my intermittent special dietary restrictions? During the ten to fourteen days after each round of chemotherapy my white cell count will be at its lowest, or the nadir I keep talking about. That’s also when I’m most susceptible to infections. Because of this, during the nadir times I’m not supposed to eat unwashed, uncooked vegetables and fruits that can’t be scrubbed or peeled, like salads or berries, that might harbor salmonella, etc. I keep forgetting about this restriction, but Kathy keeps her eye on me! She won’t let me eat my nectarines unless I wash them with that “Fit” food spray first. And then she gets upset with me if I dry the fruit on a “dirty” hand towel (hey, I couldn’t see any real dirty, greasy spots or anything). She scolded me the other day because we went out to eat with friends, as I mentioned already, and ate cole slaw, tomatoes and strawberries. I didn’t think anything about it, but Kathy saw what I was doing (don’t worry, Lou and Joan, I did fine). Anyway, I made it through my nadir this month with no problems, but I expect that with each cycle my nadir counts will get lower and lower and hence my susceptibility to infection will increase each month.
I’ve been working with the CD writer that I bought last week and have been running off copies of my CDs like crazy, so I’ll have my collection in the car, but will have copies when I go in for my chemotherapy. It is just so cool to run off a copy of a CD for about 40 cents a disc (well, not counting the cost of the writer, the extra USB ports, etc.). And, of course, to make it run even better, I’ve bought some more memory, a faster processor and a faster USB card which I’ll have installed later this week while we’re gone. Well, at least the discs are cheap.
Today I feel completely normal. I went in to the clinic and again announced that I was ready to go back to work, at least part time temporarily. I’m going to work three half days next week and also a week from Monday, just before I start the next round of chemo. Then I’ll have to be off for at least a couple of weeks again.
Since I feel so well, we’re going to go to Las Vegas this weekend. We had long ago made tentative plans for this trip, which is actually to attend the wedding of our niece Hilary Eckberg but weren’t going to go if I wasn’t up to it. Well, I’m up for it. It will be wonderful to be able to see most of my family for the first time in months. I don’t gamble, but I plan on seeing the Harrah’s antique car museum.
When we get back I have a most unpleasant task awaiting me. About 18 months ago I witnessed a hit and run death when a car literally ran over a guy on a bicycle and then took off. I was first to get to the victim, but couldn’t do much, unfortunately. The guy died within an hour or so of being struck. The driver goes to trial as soon as we get back from Vegas and I’m to be a witness. I can’t imagine why the kid just doesn’t take a plea of some kind. It should be a slam dunk case; he did it, he took off. What else is there to say? I don’t look forward to the experience. The kid’s family has apparently hired a high profile attorney, the same guy that got Bill Romanowski (the football player) off his drug charges a couple of years ago. Man, the trial could be a whole “verse” all to itself.
Well, back to the “Beavers incident.” You know, it wouldn’t really have been funny at all if not for the fact that I’m a gynecologist, the officer’s name is Beavers and, well, you know, am deeply into the topic on a daily basis. Kathy in Atlanta thought my getting caught by The Beavers was hilarious and wished she could have witnessed the event. (I did have to explain the reference to my Mom, who thought it must be a new slang term, when really it’s been around for decades and decades) Anyway, I did get some responses for other possible newspaper headlines based on the fact that I, as a gynecologist, got caught by The Beavers.
Here’s where you hit the delete button if your mind doesn’t run in the gutter with mine:
All the faux headlines depended on double entendres of one type or another, some more earthy than the others. My sister in law, Kristy, took more of a naturalist approach to the double reference:
“GYN receives lecture from angry Beavers!”
and: “Beaver slaps GYN with fine for entering trap too fast!”
My eldest son, who submitted his thoughts anonymously (and therefore will remain nameless) strung together a whole string of double entendres to come up with some earthy headlines:
“Dam! Doc snatched by eager Beavers!”
and, speaking of multiple double entendres-- “Beavers pounces on speedy doc’s boner!”
And lastly, truly anonymously: “Doc way too quick for The Beavers; pays substantial penalty with early withdrawal.”
Enough for now! I have to take my computer in to the shop tomorrow for its upgrades and also will be out of town to attend the wedding in Las Vegas. For the moment my leukemia and my condition are seemingly under control, so I’ll get back to the computer with more musings next week. At some time I need to tell you how I felt when I got the news about my leukemia. It’s painful, but I need to do it. Probably next week.
Until then,
Dave
Chapter 1, Verse 8
August 6, 2002
Well, gosh, the last few days have been very good to me. I feel almost back to normal. More about that momentarily.
Many of you out there must wonder what the heck was up with the series of three e-mails with the last “verse” sent out Friday. What happened was that I wrote up a draft of my thoughts on Thursday and saved them. But my program saves it as .wps, a program some of my family can’t open. So when I send the message, I convert it to text or .rtf. However, some folks, like those on WebTV or those using MyMailStation can only get .txt messages, and the Mail Station folks can only get messages under one page in length. Anyway, I saved my draft, then added a bunch more on Friday, but failed to save the changes. Then I inadvertently sent out the draft! Then, in attempting to correct the problem I once again made the corrections and additions, which I AGAIN failed to save properly, resending the draft (and I thought I was over the mental “fuzzies”). I got it right only on the third try. If you didn’t read the third copy you received you didn’t get the whole story. Sorry. I’ll try to get it right in the future. I may just do all the messages in text format from now on so it’ll be harder for me to screw things up.
And this brings up an interesting situation. When I started sending out my thoughts on my leukemia and my chemotherapy a couple of weeks ago, I was just sending these out to a few family members and friends. I am finding that a lot more people than those few folks seem to be interested in my situation and my random musings on what’s going on with me. I still, really, have no objections whatever if my notes are forwarded on to other folks out there, but I know that family members are forwarding the stuff on to other people, who then in some cases are forwarding it on again. Still, I have no problem whatever with this (it even feeds my ego when I hear that I should have been a writer instead of a doctor [from my cousin/step-brother Tom in Atlanta]).
The only problem could be that I no longer really know with certainty who my “audience” is. Now, my humor occasionally verges on being bawdy (see the last verse‘s beaver jokes), but I don’t want to offend anyone. However, these are, after all, my thoughts and memories of my disease and therapy. If anyone finds the humor offensive, hey, that’s why God invented the delete button!
With my last verse I finished with a footnote about my most recent blood counts, which were excellent! I didn’t explain the numbers at all, and some of you may wonder what they mean. The two most important things were that my white count was down from over 60,000 to 5,000 (to a normal level, actually) and that the cells I need (red cells, platelets, and bacteria fighting white cells) are still normal as well. But what does that really mean? It just means the medicine is working as it should, but that’s about all. The white blood cells in the circulation are just the tip of the iceberg, if you will, and really reflect only indirectly what’s going on in the marrow, where the malignant cells are hanging out. So we need to attack them again and again, trying to reduce their numbers in the marrow to as few as possible. Then, I’ll hopefully be in remission for a while. And hopefully, while we’re doing all that attacking we won’t damage my required cells too badly. That could make me quite ill. My eldest son’s girlfriend says she’ll tell jokes to my neutrophils (bacteria fighting white cells), since I mentioned that they’re “depressed,” Hey, great stuff! We’ll see how this progresses over the next five months of treatments. We won’t actually know how well that is until I have another bone marrow biopsy a couple of months after the last treatment. That will report how many leukemic cells remain in hiding. See what I have to look forward too?
You know, having my white count fall to 5,000 is just incredible. I would have been happy just to see it drop to half or so, but a 95% drop!! It just must be because I have so many good folks praying for me in so many places. Not just family, friends, co-workers and patients, but friends of family, friends, co-workers and patients. Even patients I’ve never met, but who just know me are offering their thoughts and prayers. And did you know that I’m getting two or more humorous get-well cards each and every day. One of the folks sending a card every day is Joan. When I told her she ought to stop or she’d go broke from the postage costs she told me to get used to it... it’s her “mantra.” Another person sending a card every day is Debbie, my nurse. Not only does she send a card every day, but she just got back from a trip to Washington state and brought back with her two loaves of German bread and a dozen rolls. And lots more too! She’s just great. And I also get cards from my other co-workers in the clinic at the rate of one or two daily. The love just doesn’t end!
Since last Friday I have been slowly feeling more and more normal. Tired on occasions, to be sure, but not really unwell. We went out to visit our friends Lou and Joan last Saturday evening, as they had German friends visiting from Hamburg, and I managed to stay up ‘til about ten o’clock. The German guests were treated to genuine American food (it would have been silly to try to feed them German food, don’t you think) and the main course was buffalo burgers, something they’re unlikely to find at the local Gasthaus in Hamburg. The burgers were quite tasty. I had a small glass of wine with dinner that night and paid for it during the night when a migraine headache developed. I was told that the Cytoxan may cause headaches. Or maybe it‘s ‘cause I’m getting way to much sleep. Or maybe I just can’t tolerate any amount of alcohol anymore. Damn! Anyway, we missed church as I treated my head the next morning. But other than that, I’ve been feeling better and better and doing more and more each day. You know, if it weren’t fatal, this leukemia stuff wouldn’t be so bad!
Have I told you about my intermittent special dietary restrictions? During the ten to fourteen days after each round of chemotherapy my white cell count will be at its lowest, or the nadir I keep talking about. That’s also when I’m most susceptible to infections. Because of this, during the nadir times I’m not supposed to eat unwashed, uncooked vegetables and fruits that can’t be scrubbed or peeled, like salads or berries, that might harbor salmonella, etc. I keep forgetting about this restriction, but Kathy keeps her eye on me! She won’t let me eat my nectarines unless I wash them with that “Fit” food spray first. And then she gets upset with me if I dry the fruit on a “dirty” hand towel (hey, I couldn’t see any real dirty, greasy spots or anything). She scolded me the other day because we went out to eat with friends, as I mentioned already, and ate cole slaw, tomatoes and strawberries. I didn’t think anything about it, but Kathy saw what I was doing (don’t worry, Lou and Joan, I did fine). Anyway, I made it through my nadir this month with no problems, but I expect that with each cycle my nadir counts will get lower and lower and hence my susceptibility to infection will increase each month.
I’ve been working with the CD writer that I bought last week and have been running off copies of my CDs like crazy, so I’ll have my collection in the car, but will have copies when I go in for my chemotherapy. It is just so cool to run off a copy of a CD for about 40 cents a disc (well, not counting the cost of the writer, the extra USB ports, etc.). And, of course, to make it run even better, I’ve bought some more memory, a faster processor and a faster USB card which I’ll have installed later this week while we’re gone. Well, at least the discs are cheap.
Today I feel completely normal. I went in to the clinic and again announced that I was ready to go back to work, at least part time temporarily. I’m going to work three half days next week and also a week from Monday, just before I start the next round of chemo. Then I’ll have to be off for at least a couple of weeks again.
Since I feel so well, we’re going to go to Las Vegas this weekend. We had long ago made tentative plans for this trip, which is actually to attend the wedding of our niece Hilary Eckberg but weren’t going to go if I wasn’t up to it. Well, I’m up for it. It will be wonderful to be able to see most of my family for the first time in months. I don’t gamble, but I plan on seeing the Harrah’s antique car museum.
When we get back I have a most unpleasant task awaiting me. About 18 months ago I witnessed a hit and run death when a car literally ran over a guy on a bicycle and then took off. I was first to get to the victim, but couldn’t do much, unfortunately. The guy died within an hour or so of being struck. The driver goes to trial as soon as we get back from Vegas and I’m to be a witness. I can’t imagine why the kid just doesn’t take a plea of some kind. It should be a slam dunk case; he did it, he took off. What else is there to say? I don’t look forward to the experience. The kid’s family has apparently hired a high profile attorney, the same guy that got Bill Romanowski (the football player) off his drug charges a couple of years ago. Man, the trial could be a whole “verse” all to itself.
Well, back to the “Beavers incident.” You know, it wouldn’t really have been funny at all if not for the fact that I’m a gynecologist, the officer’s name is Beavers and, well, you know, am deeply into the topic on a daily basis. Kathy in Atlanta thought my getting caught by The Beavers was hilarious and wished she could have witnessed the event. (I did have to explain the reference to my Mom, who thought it must be a new slang term, when really it’s been around for decades and decades) Anyway, I did get some responses for other possible newspaper headlines based on the fact that I, as a gynecologist, got caught by The Beavers.
Here’s where you hit the delete button if your mind doesn’t run in the gutter with mine:
All the faux headlines depended on double entendres of one type or another, some more earthy than the others. My sister in law, Kristy, took more of a naturalist approach to the double reference:
“GYN receives lecture from angry Beavers!”
and: “Beaver slaps GYN with fine for entering trap too fast!”
My eldest son, who submitted his thoughts anonymously (and therefore will remain nameless) strung together a whole string of double entendres to come up with some earthy headlines:
“Dam! Doc snatched by eager Beavers!”
and, speaking of multiple double entendres-- “Beavers pounces on speedy doc’s boner!”
And lastly, truly anonymously: “Doc way too quick for The Beavers; pays substantial penalty with early withdrawal.”
Enough for now! I have to take my computer in to the shop tomorrow for its upgrades and also will be out of town to attend the wedding in Las Vegas. For the moment my leukemia and my condition are seemingly under control, so I’ll get back to the computer with more musings next week. At some time I need to tell you how I felt when I got the news about my leukemia. It’s painful, but I need to do it. Probably next week.
Until then,
Dave
Thursday, August 1, 2002
Officer Beavers, and more new therapies offer promise.
Dave’s Great Adventure
Chapter 1, Verse 7
8/01/02
Well, I guess my boss was more prescient than I. I should have known that just because I felt great on Monday was no indication that I’d feel well three days later, during the time my blood counts would be at their lowest. What was I thinking? Today I have really not felt unwell, but have just been lethargic and sleepy. It was another hammock day. I spent most of the day listening to old tunes on the DiscMan as I dozed out on the deck.
I’ve decided that I just need to relax and not worry about when I can go back to work. There is absolutely nobody putting pressure on me to go back except me! Quite the contrary; the folks at work are telling me to stay home. So I will, until I can be relatively sure what I’m going to feel like a few days or a week into the future. That’ll probably require that I complete at least one full cycle, though. And I need to make myself realize that I’m only in to week two of a six month long process. There is no hurry!
I took a little side trip in my medical management Wednesday. I’ve had a long-term problem with one of my sinuses getting infected and painful on a regular basis. I’ve been letting some gynecologist treat the problem for years but it doesn’t ever go away. Now that my immune system is compromised, I was afraid that it would really become a problem and get out of control, so I made an appointment with an ENT doc Wednesday morning. She talked to me, looked up my nose ( a first!) and put me on a course of mega-antibiotics, steroid inhalers and nasal douches (yeah, you heard me) for the next three weeks. Then I get my head CT’ed to see what my sinus looks like. If it doesn’t look good, she’ll operate to open it up. That would have to be scheduled around my chemo appointments, of course. So, you can look forward to hearing more about my maxillary sinus too!
After leaving my appointment, which was the first thing in the morning, Kathy and I went to (where else?) our favorite Mexican place for breakfast. I love their huevos ranchero and she always gets the chilaquiles. Then we headed home for a bit. But we needed to go back out to go by the clinic pharmacy to get the meds my ENT doc had ordered.
When you go from our home toward my clinic, you travel on a road with a 45 MPH speed limit. Then, for a very short distance, maybe a quarter mile, the limit drops to 35 MPH before it then goes back up to 40. Weird. Well, it’s a favorite speed trap.
I entered the 35 MPH area doing my usual 50 and saw the cop just as she saw me! Too late to do anything except say... well, you know what I said. She pulled me over and after a friendly discussion of the local ordinances (during which time I could not find my proof of insurance) she gave me a $60 ticket. Now for the really weird part. Her name was (and, really, I’m not making this up) officer Beavers. There is a joke here somewhere, don’t you think?
HEADLINE: “Beavers puts bite on gynecologist”
or, “Gynecologist caught by the Beavers”
or, how ‘bout, “Gynecologist says: Bad day with the Beavers.”
I’ll add the best additional headline to my next publication if you can come up with something better. And I know many of you out there in e-mail land can.
(Note to my German friends [and perhaps my mother too]: the term beaver refers not only to a large dam-building rodent of North America but is also occasionally used as a rude reference to the female genitalia)
After my interaction with The Beavers we proceeded, more slowly now, to the clinic to pick up my prescriptions. While we were there we spent a bit of time with our friends there. They are just so great! We love them all. They’re so willing to do anything for us and are about the best friends anyone could have. It was nice to be able to spend a little time with them.
I was feeling a bit tired by then so we didn’t do much else the rest of the day. Just a few chores around the house and lying on the couch.
Today we went over to Office Max to look at a CD writer (I want to be able to copy some of my CDs to be able to carry with the DiscMan) and I was getting weak just standing around looking at stuff. Kathy kept trying to get me to sit down, but I just told her to make sure to raise my feet above my head level if I passed out. We ordered a pretty good one (they were out of stock all over town) and headed home. And then I spent most of the day out on the deck listening to some tunes I hadn’t listened to in years. I did go to the clinic to get blood drawn for my “Ralph” and I’ll get the numbers back in the morning before I hit the “send” button on this message.
And now I’m eating fresh-out-of-the-oven chocolate chip cookies Kathy made for me! Isn’t she great!! The perfect end to a very lazy day.
In my last epistle I told you an awful lot about the treatments that are bring looked at as possibilities for a cure for CLL. Probably more than you really wanted to read. Well, I’m not finished yet! For some reason I’m now fascinated by the topic and there are even more cool things on the horizon. Things you NEED to know about.
One of the coolest things that is being tried, and is, I believe, already on the market, is a combination of Rituxan and radioactive iodine. What they are trying is to attach radioactive iodine (I-131) to a molecule of Rituxan. The Rituxan, being an antibody, will attach only to the CLL cells, but those cells are generally in the company of other CLL cells too. When the Rituxan binds to the leukemic cell, it not only kills it but also delivers a little nuclear bomb to the cells in the area! Isn’t that a cool concept! If you’re George Bush, that would be a “nucular bomb.”
Another thing that is currently in clinical trials is stuff called Genasense. What it does is not kill the bad guys, but tells them it’s time to die naturally. You see, leukemic cells aren’t really deadly by their nature. It’s just that there are too damned many of them and they eventually crowd out the normal cells. They really aren’t even made any faster than normal lymphocytes, but they just refuse to die when its their time to do so. Many cancerous cells, including leukemic cells, have a protein that is abnormal because it inhibits natural cell death. Well, Genasense blocks this protein’s ability to inhibit the death of the cell, so it goes on to die a natural death at a normal cell’s age (a few months or so). This is a great concept too as it would not affect ant normal cells at all, so side effects (if any) should be minimal. Keep your fingers crossed.
I just had to go out and get some more chocolate chip cookies (more doctor’s orders). Ummm, good.
Speaking of side effects, I have been remarkably free of all the miserable things that I could have been experiencing. So far, so good. The list of possible side effects includes nausea, diarrhea/constipation (I just wonder how one could have both extremes of this function), hair loss (none yet), fatigue, headaches, “certain” sexual side-effects common to the male, rashes, mouth ulcers, etc., etc. We’ll see if the side effects, other than the fatigue, get any worse in my subsequent cycles. We’ll find out in a couple more weeks.
And that’s about all the nonsense I can come up with for now. I’ll add in the blood count numbers tomorrow with some comments and get this out to all you good folks.
By the way, several of you have told me that you are forwarding, or would like to forward, my ramblings to others who are interested in what’s going on, and have asked my approval. I certainly have no objections whatever to you sending my missives to others. In fact, if they have a continuing interest, just send me their e-mail address and I’ll add them to the list so you won’t have to forward the stuff all the time.
Until later,
Dave
{Now it’s later: My blood counts are back and there’s lots of good news. My white count has dropped from 60,000+ when we started to 5,000 now! That’s and incredible drop. No wonder I feel so wiped out! And there is more good news; my red cell and platelet counts are still normal. My neutrophil count, though depressed, is still adequate. That all means that I should be able to start the Rituxan in a couple of weeks. Yippee!}
Chapter 1, Verse 7
8/01/02
Well, I guess my boss was more prescient than I. I should have known that just because I felt great on Monday was no indication that I’d feel well three days later, during the time my blood counts would be at their lowest. What was I thinking? Today I have really not felt unwell, but have just been lethargic and sleepy. It was another hammock day. I spent most of the day listening to old tunes on the DiscMan as I dozed out on the deck.
I’ve decided that I just need to relax and not worry about when I can go back to work. There is absolutely nobody putting pressure on me to go back except me! Quite the contrary; the folks at work are telling me to stay home. So I will, until I can be relatively sure what I’m going to feel like a few days or a week into the future. That’ll probably require that I complete at least one full cycle, though. And I need to make myself realize that I’m only in to week two of a six month long process. There is no hurry!
I took a little side trip in my medical management Wednesday. I’ve had a long-term problem with one of my sinuses getting infected and painful on a regular basis. I’ve been letting some gynecologist treat the problem for years but it doesn’t ever go away. Now that my immune system is compromised, I was afraid that it would really become a problem and get out of control, so I made an appointment with an ENT doc Wednesday morning. She talked to me, looked up my nose ( a first!) and put me on a course of mega-antibiotics, steroid inhalers and nasal douches (yeah, you heard me) for the next three weeks. Then I get my head CT’ed to see what my sinus looks like. If it doesn’t look good, she’ll operate to open it up. That would have to be scheduled around my chemo appointments, of course. So, you can look forward to hearing more about my maxillary sinus too!
After leaving my appointment, which was the first thing in the morning, Kathy and I went to (where else?) our favorite Mexican place for breakfast. I love their huevos ranchero and she always gets the chilaquiles. Then we headed home for a bit. But we needed to go back out to go by the clinic pharmacy to get the meds my ENT doc had ordered.
When you go from our home toward my clinic, you travel on a road with a 45 MPH speed limit. Then, for a very short distance, maybe a quarter mile, the limit drops to 35 MPH before it then goes back up to 40. Weird. Well, it’s a favorite speed trap.
I entered the 35 MPH area doing my usual 50 and saw the cop just as she saw me! Too late to do anything except say... well, you know what I said. She pulled me over and after a friendly discussion of the local ordinances (during which time I could not find my proof of insurance) she gave me a $60 ticket. Now for the really weird part. Her name was (and, really, I’m not making this up) officer Beavers. There is a joke here somewhere, don’t you think?
HEADLINE: “Beavers puts bite on gynecologist”
or, “Gynecologist caught by the Beavers”
or, how ‘bout, “Gynecologist says: Bad day with the Beavers.”
I’ll add the best additional headline to my next publication if you can come up with something better. And I know many of you out there in e-mail land can.
(Note to my German friends [and perhaps my mother too]: the term beaver refers not only to a large dam-building rodent of North America but is also occasionally used as a rude reference to the female genitalia)
After my interaction with The Beavers we proceeded, more slowly now, to the clinic to pick up my prescriptions. While we were there we spent a bit of time with our friends there. They are just so great! We love them all. They’re so willing to do anything for us and are about the best friends anyone could have. It was nice to be able to spend a little time with them.
I was feeling a bit tired by then so we didn’t do much else the rest of the day. Just a few chores around the house and lying on the couch.
Today we went over to Office Max to look at a CD writer (I want to be able to copy some of my CDs to be able to carry with the DiscMan) and I was getting weak just standing around looking at stuff. Kathy kept trying to get me to sit down, but I just told her to make sure to raise my feet above my head level if I passed out. We ordered a pretty good one (they were out of stock all over town) and headed home. And then I spent most of the day out on the deck listening to some tunes I hadn’t listened to in years. I did go to the clinic to get blood drawn for my “Ralph” and I’ll get the numbers back in the morning before I hit the “send” button on this message.
And now I’m eating fresh-out-of-the-oven chocolate chip cookies Kathy made for me! Isn’t she great!! The perfect end to a very lazy day.
In my last epistle I told you an awful lot about the treatments that are bring looked at as possibilities for a cure for CLL. Probably more than you really wanted to read. Well, I’m not finished yet! For some reason I’m now fascinated by the topic and there are even more cool things on the horizon. Things you NEED to know about.
One of the coolest things that is being tried, and is, I believe, already on the market, is a combination of Rituxan and radioactive iodine. What they are trying is to attach radioactive iodine (I-131) to a molecule of Rituxan. The Rituxan, being an antibody, will attach only to the CLL cells, but those cells are generally in the company of other CLL cells too. When the Rituxan binds to the leukemic cell, it not only kills it but also delivers a little nuclear bomb to the cells in the area! Isn’t that a cool concept! If you’re George Bush, that would be a “nucular bomb.”
Another thing that is currently in clinical trials is stuff called Genasense. What it does is not kill the bad guys, but tells them it’s time to die naturally. You see, leukemic cells aren’t really deadly by their nature. It’s just that there are too damned many of them and they eventually crowd out the normal cells. They really aren’t even made any faster than normal lymphocytes, but they just refuse to die when its their time to do so. Many cancerous cells, including leukemic cells, have a protein that is abnormal because it inhibits natural cell death. Well, Genasense blocks this protein’s ability to inhibit the death of the cell, so it goes on to die a natural death at a normal cell’s age (a few months or so). This is a great concept too as it would not affect ant normal cells at all, so side effects (if any) should be minimal. Keep your fingers crossed.
I just had to go out and get some more chocolate chip cookies (more doctor’s orders). Ummm, good.
Speaking of side effects, I have been remarkably free of all the miserable things that I could have been experiencing. So far, so good. The list of possible side effects includes nausea, diarrhea/constipation (I just wonder how one could have both extremes of this function), hair loss (none yet), fatigue, headaches, “certain” sexual side-effects common to the male, rashes, mouth ulcers, etc., etc. We’ll see if the side effects, other than the fatigue, get any worse in my subsequent cycles. We’ll find out in a couple more weeks.
And that’s about all the nonsense I can come up with for now. I’ll add in the blood count numbers tomorrow with some comments and get this out to all you good folks.
By the way, several of you have told me that you are forwarding, or would like to forward, my ramblings to others who are interested in what’s going on, and have asked my approval. I certainly have no objections whatever to you sending my missives to others. In fact, if they have a continuing interest, just send me their e-mail address and I’ll add them to the list so you won’t have to forward the stuff all the time.
Until later,
Dave
{Now it’s later: My blood counts are back and there’s lots of good news. My white count has dropped from 60,000+ when we started to 5,000 now! That’s and incredible drop. No wonder I feel so wiped out! And there is more good news; my red cell and platelet counts are still normal. My neutrophil count, though depressed, is still adequate. That all means that I should be able to start the Rituxan in a couple of weeks. Yippee!}
Tuesday, July 30, 2002
Our bit of heaven, and promising new therapies.
Dave’s Great Adventure
Chapter 1, Verse 6
July 30, 2002
Well, on Sunday I sent an update through Saturday so now I guess I’ll send a bit more on the last few days. It’s been up and down.
Sunday we got up and I felt pretty good. We had breakfast and decided I was well enough to go to church. However, during the church service I was weak and clammy when standing for some of the longer hymns and for a christening they had for four kids.
We went home and changed, and I started feeling a bit better. So we went out to eat; we went to the local custard shop for hot dogs, chips and a Pepsi. Then I had a custard for dessert. Then I had a chocolate-peanut butter sundae, too. Remember, I was just following my doctor’s orders to get a high fat diet!
I felt pretty well for most of the day but had times that I felt weak so I went to the reliable hammock again to try to rest. Mother nature would have none of that; a small dark cloud passed over and sent a short, sparse shower onto the deck. The raindrops felt like icy darts so I was forced back inside.
Later some friends called, asked if we wanted to go out for dinner, and we did. So we went out again, this time for Indian food. My appetite has been pretty much okay throughout this. Everything went down and stayed down just fine.
Monday was a great day. I got up feeling completely back to normal. I felt so good that I spent all day working on things around the house, getting caught up on chores and minor repairs. I figured that the worst of this round of chemo must be over and thought I should try to get myself back into the clinic in a few days if I kept feeling well. I called to see if it might be possible to work a half day or so on Thursday and/or Friday. I got a call back from the boss a while later saying there would be no room for me on those days (?!). Gosh, I have only been gone a couple of weeks! I didn’t think that there would be a problem getting back in to the clinic since I had done my best not to leave too soon (to my dismay, at this point, as it has altered my therapy).
Sic transit gloria!
So, I’ll continue to be off at least until next week. The rest of the day I continued to work around the house and continued to do just fine. Perhaps I overdid it.
I woke up today feeling crappy again, tired, headachy, sleepy. However, Kathy and I had planned a picnic in the mountains today and I was not going to change our plans. So we packed up the 4-Runner, bought a bucket of fried chicken (doctor’s orders) and headed out. We love a little out-of-the-way campground about 65 miles west of town, called the Handcart Campground. It’s a long way from anywhere and we figured it would be quiet on a Tuesday. Well, it was not only quiet, it was deserted. Perfect!
I guess heaven is different to every person, and I hadn’t thought much about heaven until recently (my, isn’t that quite an assumption!) but I decided that Handcart is about as close to heaven as I can get on earth. We were among 75 foot pines, with a stream rushing, about 30 feet away, with a soft wind in the tops of the trees. It was about 75 degrees and sunny through the trees. No other people were within earshot but there were birds in the trees and chipmunks scurrying about. It was just what we had come for.
We ate a picnic lunch, played a card game (Quiddler) which I won, and then I spread a blanket out and lay down on the pine needles. I had brought along my DiscMan, but the sounds of the forest turned out to be all I needed. I settled in for a nap in my piece of heaven. (Well, less the mosquitoes, and it would have been heaven.) The sounds of the stream and the trees put me to sleep.
A while later I awoke, and Kathy joined me on the blanket We fed the birds, which brazenly approached us looking for handouts. We, of course, obliged.
Something kinda funny happened. By now I had the DiscMan going. I was listening to Pink Floyd’s “A Momentary Lapse of Reason.” At the start of the third track (“The Dogs of War”) there is a growling behind the listener. We were deep in bear territory, and when that track started and I heard the so-realistic growl (remember the fantastic sound reproduction I mentioned?) behind me, I startled and whirled around, certain that a bear had come for food! I couldn’t find the source of the growl until the song commenced and I realized it was just the CD.
We lazed around the campground until about five, and then headed out, but instead of going directly home, we went further west, toward the little town of Fairplay, an old mining town of maybe 1000 people, give or take a dog or two. The reason for this side-trip is that there are a couple of Texas ex-patriots who have imported a genuine pit smoker and real barbeque to the Colorado mountains and sell it in their restaurant, the South Perk. It is the best real barbeque in the state, as far as I can determine. The barbeque was to be dinner and I also planned to bring a couple of racks of ribs home in the cooler. But it was closed when we got there!
Sic transit barbeque!
Okay, otherwise it was a perfect day. So we came home and rested. I was still tired, even after my nap, and I guess it was just as well that I hadn’t been scheduled in the clinic in a few days. I wonder when I’ll be able to predict with any accuracy that I’m going to feel well in future days.
My blood counts should be dropping to their lowest in the next few days, and I’ll be getting tested about Thursday to see what effect the chemo is having on my white count (and my other vital counts, as well, like my red cell counts, platelets and neutrophils). It will be interesting to see how I feel during that time, when I will be most vulnerable to infections.
I’d like to say a bit more about the treatments for CLL. Despite my pessimistic letter recently, about the virtual certainty that the disease will return, regardless of treatment, there is reason for cautious optimism. I’ve told you quite a bit about rituximab, the drug that we’re going to be using on me soon (hopefully). It is, as frequently mentioned, an antibody designed to attack lymphoma/leukemic cells specifically. This type of therapy is probably one of the few hopes for a “cure.” This cancer is a tough one, as it is literally everywhere in one’s body; in the marrow, spleen, liver, lymph nodes, intestines, everywhere. It is not like a cancerous leg which you can amputate to save the rest of the body. To “cure” this cancer, you have to somehow rid the body of every single one of the billions of cancerous white cells in the body. A tough job, to be sure.
Even if you kill off 99.9% of them, it will not effect a cure, and eventually the surviving cells will reproduce and the disease will come back, this time in a stronger form as the cells that survived the original treatment will be tougher than the other 99.9% of the cells, which were killed off during the first treatment.
It’s a bit like dumping a box of sand on your living room carpet, rubbing it all into the nap and then trying to get every single grain back out. Can’t be done unless you burn the rug or something.
That’s what they try to do in bone marrow transplants. They try to destroy every cell of the patient’s marrow with high dose chemotherapy and/or radiation, which brings the patient to the brink of death. Then they, hopefully, “rescue” the patient by infusing new, normal marrow. Hopefully, it “takes” and the patient survives.
The other option is to try to find some other method of destroying all those billions of cancerous cells selectively, without destroying all the necessary cells; the ones that make the red cells, etc. That is where antibody treatment brings promise. The antibodies can, hopefully, be designed to attack specific antigens, or specifically shaped proteins, that appear on leukemic cells but not on normal white blood cells. The antibodies could then get into every nook and cranny of the patient’s body, seeking out the abnormal cells and destroying them. That’s something radiation or chemo can’t do without also killing the patient.
Well, rituximab is the first of these antibodies to be developed, but it’s not the only one. There is also one on the market called Campath, of which I’ll probably be telling you more later. It works very well, but is less selective than Rituxan, as it destroys a goodly number of normal cells too. Studies are already underway using Campath AND Rituxan, since they attack different antigens, and early results (very early) are encouraging. Campath leads to more infections than Rituxan, since it destroys more normal cells, which is why it is being used more cautiously so far.
And, there are perhaps three dozen other anti-leukemic antibodies under development at this time. In theory, if antibodies could be designed to attack all the antigens that appear on abnormal cells but not normal ones, then they could be used in some combination to try to selectively destroy all the bad guys but leave the good guys alone. So, there is something to hope for in the coming years. We’ll see what comes to pass.
“And so it goes.”
Until later,
Dave
Chapter 1, Verse 6
July 30, 2002
Well, on Sunday I sent an update through Saturday so now I guess I’ll send a bit more on the last few days. It’s been up and down.
Sunday we got up and I felt pretty good. We had breakfast and decided I was well enough to go to church. However, during the church service I was weak and clammy when standing for some of the longer hymns and for a christening they had for four kids.
We went home and changed, and I started feeling a bit better. So we went out to eat; we went to the local custard shop for hot dogs, chips and a Pepsi. Then I had a custard for dessert. Then I had a chocolate-peanut butter sundae, too. Remember, I was just following my doctor’s orders to get a high fat diet!
I felt pretty well for most of the day but had times that I felt weak so I went to the reliable hammock again to try to rest. Mother nature would have none of that; a small dark cloud passed over and sent a short, sparse shower onto the deck. The raindrops felt like icy darts so I was forced back inside.
Later some friends called, asked if we wanted to go out for dinner, and we did. So we went out again, this time for Indian food. My appetite has been pretty much okay throughout this. Everything went down and stayed down just fine.
Monday was a great day. I got up feeling completely back to normal. I felt so good that I spent all day working on things around the house, getting caught up on chores and minor repairs. I figured that the worst of this round of chemo must be over and thought I should try to get myself back into the clinic in a few days if I kept feeling well. I called to see if it might be possible to work a half day or so on Thursday and/or Friday. I got a call back from the boss a while later saying there would be no room for me on those days (?!). Gosh, I have only been gone a couple of weeks! I didn’t think that there would be a problem getting back in to the clinic since I had done my best not to leave too soon (to my dismay, at this point, as it has altered my therapy).
Sic transit gloria!
So, I’ll continue to be off at least until next week. The rest of the day I continued to work around the house and continued to do just fine. Perhaps I overdid it.
I woke up today feeling crappy again, tired, headachy, sleepy. However, Kathy and I had planned a picnic in the mountains today and I was not going to change our plans. So we packed up the 4-Runner, bought a bucket of fried chicken (doctor’s orders) and headed out. We love a little out-of-the-way campground about 65 miles west of town, called the Handcart Campground. It’s a long way from anywhere and we figured it would be quiet on a Tuesday. Well, it was not only quiet, it was deserted. Perfect!
I guess heaven is different to every person, and I hadn’t thought much about heaven until recently (my, isn’t that quite an assumption!) but I decided that Handcart is about as close to heaven as I can get on earth. We were among 75 foot pines, with a stream rushing, about 30 feet away, with a soft wind in the tops of the trees. It was about 75 degrees and sunny through the trees. No other people were within earshot but there were birds in the trees and chipmunks scurrying about. It was just what we had come for.
We ate a picnic lunch, played a card game (Quiddler) which I won, and then I spread a blanket out and lay down on the pine needles. I had brought along my DiscMan, but the sounds of the forest turned out to be all I needed. I settled in for a nap in my piece of heaven. (Well, less the mosquitoes, and it would have been heaven.) The sounds of the stream and the trees put me to sleep.
A while later I awoke, and Kathy joined me on the blanket We fed the birds, which brazenly approached us looking for handouts. We, of course, obliged.
Something kinda funny happened. By now I had the DiscMan going. I was listening to Pink Floyd’s “A Momentary Lapse of Reason.” At the start of the third track (“The Dogs of War”) there is a growling behind the listener. We were deep in bear territory, and when that track started and I heard the so-realistic growl (remember the fantastic sound reproduction I mentioned?) behind me, I startled and whirled around, certain that a bear had come for food! I couldn’t find the source of the growl until the song commenced and I realized it was just the CD.
We lazed around the campground until about five, and then headed out, but instead of going directly home, we went further west, toward the little town of Fairplay, an old mining town of maybe 1000 people, give or take a dog or two. The reason for this side-trip is that there are a couple of Texas ex-patriots who have imported a genuine pit smoker and real barbeque to the Colorado mountains and sell it in their restaurant, the South Perk. It is the best real barbeque in the state, as far as I can determine. The barbeque was to be dinner and I also planned to bring a couple of racks of ribs home in the cooler. But it was closed when we got there!
Sic transit barbeque!
Okay, otherwise it was a perfect day. So we came home and rested. I was still tired, even after my nap, and I guess it was just as well that I hadn’t been scheduled in the clinic in a few days. I wonder when I’ll be able to predict with any accuracy that I’m going to feel well in future days.
My blood counts should be dropping to their lowest in the next few days, and I’ll be getting tested about Thursday to see what effect the chemo is having on my white count (and my other vital counts, as well, like my red cell counts, platelets and neutrophils). It will be interesting to see how I feel during that time, when I will be most vulnerable to infections.
I’d like to say a bit more about the treatments for CLL. Despite my pessimistic letter recently, about the virtual certainty that the disease will return, regardless of treatment, there is reason for cautious optimism. I’ve told you quite a bit about rituximab, the drug that we’re going to be using on me soon (hopefully). It is, as frequently mentioned, an antibody designed to attack lymphoma/leukemic cells specifically. This type of therapy is probably one of the few hopes for a “cure.” This cancer is a tough one, as it is literally everywhere in one’s body; in the marrow, spleen, liver, lymph nodes, intestines, everywhere. It is not like a cancerous leg which you can amputate to save the rest of the body. To “cure” this cancer, you have to somehow rid the body of every single one of the billions of cancerous white cells in the body. A tough job, to be sure.
Even if you kill off 99.9% of them, it will not effect a cure, and eventually the surviving cells will reproduce and the disease will come back, this time in a stronger form as the cells that survived the original treatment will be tougher than the other 99.9% of the cells, which were killed off during the first treatment.
It’s a bit like dumping a box of sand on your living room carpet, rubbing it all into the nap and then trying to get every single grain back out. Can’t be done unless you burn the rug or something.
That’s what they try to do in bone marrow transplants. They try to destroy every cell of the patient’s marrow with high dose chemotherapy and/or radiation, which brings the patient to the brink of death. Then they, hopefully, “rescue” the patient by infusing new, normal marrow. Hopefully, it “takes” and the patient survives.
The other option is to try to find some other method of destroying all those billions of cancerous cells selectively, without destroying all the necessary cells; the ones that make the red cells, etc. That is where antibody treatment brings promise. The antibodies can, hopefully, be designed to attack specific antigens, or specifically shaped proteins, that appear on leukemic cells but not on normal white blood cells. The antibodies could then get into every nook and cranny of the patient’s body, seeking out the abnormal cells and destroying them. That’s something radiation or chemo can’t do without also killing the patient.
Well, rituximab is the first of these antibodies to be developed, but it’s not the only one. There is also one on the market called Campath, of which I’ll probably be telling you more later. It works very well, but is less selective than Rituxan, as it destroys a goodly number of normal cells too. Studies are already underway using Campath AND Rituxan, since they attack different antigens, and early results (very early) are encouraging. Campath leads to more infections than Rituxan, since it destroys more normal cells, which is why it is being used more cautiously so far.
And, there are perhaps three dozen other anti-leukemic antibodies under development at this time. In theory, if antibodies could be designed to attack all the antigens that appear on abnormal cells but not normal ones, then they could be used in some combination to try to selectively destroy all the bad guys but leave the good guys alone. So, there is something to hope for in the coming years. We’ll see what comes to pass.
“And so it goes.”
Until later,
Dave
Sunday, July 28, 2002
Chemo effects, and what I expect will happen.
Dave's Great Adventure
Chapter 1, Verse 5
7/28/02
Well, I don't intend to pester you with an update about every little runny nose or ache I have so I've been silent over the past few days. Over all, things are getting a bit better.
When last I put index fingers to keyboard, I was leaving to head out for the hammock since I couldn't think clearly. I did just that and settled in for a nap. But it was too cool and breezy, about 75 degrees (about 24 C) so I had to get up and come in for a sweatshirt! You folks in Texas and Georgia can only dream about such temperatures in July! Anyway, I spent all day Friday in a bit of a fugue state (not literally) and just didn't do much but "hang around" in the hammock or on the couch. I only went out of the house once, to accompany Kathy to the mail box, where I got several great cards from co-workers and offspring. Thanks guys.
Since I was still feeling woozy, we missed a wedding we'd been invited to Friday night, but Kathy did take me out for frozen custard that evening. Then I spent a couple of hours around the house not doing much before we went to bed.
This chemo is going to be an adventure-a-day with unexpected events daily. I got up Saturday not feeling too badly, but after a bath I was overcome with waves of nausea. Yuck! Fortunately the act was not consummated but I was very afraid of producing bilious vomit for a while. I choked down an anti-nausea pill and chewed some antacids to buffer whatever might be coming my way, and collapsed on the floor, sweating. Wow, I thought that any nausea might be on the days of the infusions; not days later! After a few minutes I felt a bit better and went downstairs where Kathy was. She didn't like the way I looked. Said I was too pale. I was still shaky so I went to the couch to rest some more and soon I was snoring (so I hear). A bit later I got up to talk to our daughter and provided a phone consult; she needed antibiotics called in to her neighborhood drug store, so I was accommodating. By then I was feeling somewhat better and had some coffee and toast for breakfast, and kept everything down.
By the afternoon I was feeling much better. So Kathy took me out looking for a DiscMan, since I'll be spending a lot of time either on the hammock or on the recliner in the chemo room in the coming months. Imagine, I'm almost 56 years old and have never had a DiscMan. Well, she took me to Sam's to look around but we didn't find any portable CD players. However, there was a terrific sale going of VHS tapes, since I guess they are going away soon, to be replaced by DVDs. Man, how could I pass them up. We got a series of tapes on the histories of World Wars I and II. Now I've got plenty to watch in the coming weeks.
Next we hit Circuit City where I found a basic Sony CD player and carrying case, and we headed home. I put the batteries in the player, popped in a Loreena McKennitt CD my brother Dan had made for me and turned it on! Man, the technology is so good now. The dynamic response of just the basic little earphones that came with the CD player is just superb! My poor ears, even after being assaulted in the past by helicopter rotors, M-16s, cannons and too many years of Rolling Stones at high volume, could still hear so many subtleties. I love my little CD player. So I went back out on the deck and back into the hammock, listening to Loreena (if you like Celtic, Irish music {with a hint of eastern Indian[?]} sound, she's the one for you) and went to sleep.
Kathy fixed a great meal for dinner, barbequed pork loin with great fixin's. And it all stayed down. No more nausea, I'm happy to report. We spent the evening out on the deck looking at the stars and just being quiet and together.
So what do I expect from this disease and the treatment? Well, let me go to the bottom line and then I'll go back to explain. I expect this disease will kill me, but I just don't know when. I mentioned that the average length of time from diagnosis to death is about 6 years now. That means, of course that some folks live with the disease for more than six years (sometimes decades) but that that some folks have it for less than six years, too. My disease is apparently "aggressive" and that has to worry me. Some folks have an "indolent" form of the disease that never progresses. I couldn't have been lucky enough to get that form.
There are all kinds of treatments for this disease, including what I'm getting. The key word is "treatments" because I can't use the word "cure." The disease seems, invariably, to come back at some point. Then you have to try something else, until nothing works. What I'm going to get, the rituximab with fludarabine and cytoxan, is the newest kid on the block, and I will be pleased (nay, ecstatic!) if I get into complete remission with no genetic evidence of residual disease, like 1/3 of the patients have done on this regimen in the M. D. Anderson study, but if I am so lucky as to fall into this group, I'll expect that it will, at some point, come back again. I think it is a bit like breast cancer; you can be 5, 10 or 20 years out from the disease and it can come back somewhere else and bite you fatally.
I think that I will probably get some relief, temporarily, from my high white counts but that I'm due for more treatments in the future. I think that ultimately I'll have to roll the dice and take my chances with a bone marrow transplant because that will be all that will be available to me. But even that doesn't effect a certain "cure." Folks with successful, perfect match transplants can do well for years before the disease sneaks back. This round of chemo is not the only treatment I'll be looking at, just the first, I'm afraid.
That brings up another problem; even if I'm lucky enough to outlive this disease for a number of years, it will be hard to keep practicing medicine if I'm out of "practice" for six to twelve months at a time for my therapy. I'll be out for most of the next six months. When/if the disease comes back and I need to go for the marrow transplant, I'll be out for a year. I see my medical career winding to a close pretty soon, I'm afraid.
Of course, conversely, when this happened to me I was considering my options for an early retirement. Curiously, now I really can't retire. I need the job for the benefits since I'm facing long and pretty expensive treatments, probably for the rest of my life. Oh, well. I needed something to do anyway. This'll keep me from getting too bored in my dotage.
Enough for now; I'll send another report your way in the coming days, probably not later than when I get my "Ralph" checked late this week.
Later,
Dave
Chapter 1, Verse 5
7/28/02
Well, I don't intend to pester you with an update about every little runny nose or ache I have so I've been silent over the past few days. Over all, things are getting a bit better.
When last I put index fingers to keyboard, I was leaving to head out for the hammock since I couldn't think clearly. I did just that and settled in for a nap. But it was too cool and breezy, about 75 degrees (about 24 C) so I had to get up and come in for a sweatshirt! You folks in Texas and Georgia can only dream about such temperatures in July! Anyway, I spent all day Friday in a bit of a fugue state (not literally) and just didn't do much but "hang around" in the hammock or on the couch. I only went out of the house once, to accompany Kathy to the mail box, where I got several great cards from co-workers and offspring. Thanks guys.
Since I was still feeling woozy, we missed a wedding we'd been invited to Friday night, but Kathy did take me out for frozen custard that evening. Then I spent a couple of hours around the house not doing much before we went to bed.
This chemo is going to be an adventure-a-day with unexpected events daily. I got up Saturday not feeling too badly, but after a bath I was overcome with waves of nausea. Yuck! Fortunately the act was not consummated but I was very afraid of producing bilious vomit for a while. I choked down an anti-nausea pill and chewed some antacids to buffer whatever might be coming my way, and collapsed on the floor, sweating. Wow, I thought that any nausea might be on the days of the infusions; not days later! After a few minutes I felt a bit better and went downstairs where Kathy was. She didn't like the way I looked. Said I was too pale. I was still shaky so I went to the couch to rest some more and soon I was snoring (so I hear). A bit later I got up to talk to our daughter and provided a phone consult; she needed antibiotics called in to her neighborhood drug store, so I was accommodating. By then I was feeling somewhat better and had some coffee and toast for breakfast, and kept everything down.
By the afternoon I was feeling much better. So Kathy took me out looking for a DiscMan, since I'll be spending a lot of time either on the hammock or on the recliner in the chemo room in the coming months. Imagine, I'm almost 56 years old and have never had a DiscMan. Well, she took me to Sam's to look around but we didn't find any portable CD players. However, there was a terrific sale going of VHS tapes, since I guess they are going away soon, to be replaced by DVDs. Man, how could I pass them up. We got a series of tapes on the histories of World Wars I and II. Now I've got plenty to watch in the coming weeks.
Next we hit Circuit City where I found a basic Sony CD player and carrying case, and we headed home. I put the batteries in the player, popped in a Loreena McKennitt CD my brother Dan had made for me and turned it on! Man, the technology is so good now. The dynamic response of just the basic little earphones that came with the CD player is just superb! My poor ears, even after being assaulted in the past by helicopter rotors, M-16s, cannons and too many years of Rolling Stones at high volume, could still hear so many subtleties. I love my little CD player. So I went back out on the deck and back into the hammock, listening to Loreena (if you like Celtic, Irish music {with a hint of eastern Indian[?]} sound, she's the one for you) and went to sleep.
Kathy fixed a great meal for dinner, barbequed pork loin with great fixin's. And it all stayed down. No more nausea, I'm happy to report. We spent the evening out on the deck looking at the stars and just being quiet and together.
So what do I expect from this disease and the treatment? Well, let me go to the bottom line and then I'll go back to explain. I expect this disease will kill me, but I just don't know when. I mentioned that the average length of time from diagnosis to death is about 6 years now. That means, of course that some folks live with the disease for more than six years (sometimes decades) but that that some folks have it for less than six years, too. My disease is apparently "aggressive" and that has to worry me. Some folks have an "indolent" form of the disease that never progresses. I couldn't have been lucky enough to get that form.
There are all kinds of treatments for this disease, including what I'm getting. The key word is "treatments" because I can't use the word "cure." The disease seems, invariably, to come back at some point. Then you have to try something else, until nothing works. What I'm going to get, the rituximab with fludarabine and cytoxan, is the newest kid on the block, and I will be pleased (nay, ecstatic!) if I get into complete remission with no genetic evidence of residual disease, like 1/3 of the patients have done on this regimen in the M. D. Anderson study, but if I am so lucky as to fall into this group, I'll expect that it will, at some point, come back again. I think it is a bit like breast cancer; you can be 5, 10 or 20 years out from the disease and it can come back somewhere else and bite you fatally.
I think that I will probably get some relief, temporarily, from my high white counts but that I'm due for more treatments in the future. I think that ultimately I'll have to roll the dice and take my chances with a bone marrow transplant because that will be all that will be available to me. But even that doesn't effect a certain "cure." Folks with successful, perfect match transplants can do well for years before the disease sneaks back. This round of chemo is not the only treatment I'll be looking at, just the first, I'm afraid.
That brings up another problem; even if I'm lucky enough to outlive this disease for a number of years, it will be hard to keep practicing medicine if I'm out of "practice" for six to twelve months at a time for my therapy. I'll be out for most of the next six months. When/if the disease comes back and I need to go for the marrow transplant, I'll be out for a year. I see my medical career winding to a close pretty soon, I'm afraid.
Of course, conversely, when this happened to me I was considering my options for an early retirement. Curiously, now I really can't retire. I need the job for the benefits since I'm facing long and pretty expensive treatments, probably for the rest of my life. Oh, well. I needed something to do anyway. This'll keep me from getting too bored in my dotage.
Enough for now; I'll send another report your way in the coming days, probably not later than when I get my "Ralph" checked late this week.
Later,
Dave
Friday, July 26, 2002
Rave reviews and "The Fuzzies!"
Dave’s Great Adventure
Chapter 1, verse 4
July 26, 2002
Just a Short Verse
Dave’s Great Adventure opens to rave reviews!!!
“Please keep the episodes coming.” -- Frank in Albuquerque
“...enjoyed reading them so much....” -- Mom in Muscatine
“Keep those notes and adventure stories coming.”--Marcia in Heidelberg
“Dave...you explained things really well.” --Kathy R in Hotlanta
“What the hell is this crap!” -- Ebert and Roeper -- At the Movies
Well folks, yesterday I finally felt like something was happening. I woke up a little weary and the feeling only got worse during the day. I just felt a bit weak, unsteady and I found it difficult to concentrate. I actually had been warned that this lack of concentration might happen. One of my colleagues who has been through chemo for her breast cancer (and who is helping out in our clinic in my absence) told me that her thinking was “fuzzy” during the chemo. Man, she was right. I found it difficult to read entire articles in the paper yesterday. The headlines I could manage, but getting into the details was difficult.
Since I didn’t feel well for the first time, and didn’t feel like doing much around the house yesterday, Kathy took me to a movie. We saw “Road to Perdition,” and I’ll give it two thumbs up, though it was a very somber, dark movie and didn’t do a lot of good for my mood.
Today I feel the same, a little like I’ve been drinking or something. I also notice that even with spell-check there were a number of typos in my message from yesterday. See, I can’t concentrate very well all of a sudden. A couple of days ago I was kinda feeling guilty that I was feeling so well and wasn’t at work, now I know the reason I was told to take off work. Even as I write this I find I can’t keep all my thoughts lined up and have to work to keep the paragraphs flowing. So maybe I’ll quit for now.
There are a bunch of other things I want to write down at some point; how I felt when I got the news about the leukemia, what I expect from the disease and the treatment, and more, but I’ll get those into a subsequent “verse.”
So I think for now I’ll go out and lie in the hammock again since that’s all I’m up for at the moment.
Until later,
Dave
Chapter 1, verse 4
July 26, 2002
Just a Short Verse
Dave’s Great Adventure opens to rave reviews!!!
“Please keep the episodes coming.” -- Frank in Albuquerque
“...enjoyed reading them so much....” -- Mom in Muscatine
“Keep those notes and adventure stories coming.”--Marcia in Heidelberg
“Dave...you explained things really well.” --Kathy R in Hotlanta
“What the hell is this crap!” -- Ebert and Roeper -- At the Movies
Well folks, yesterday I finally felt like something was happening. I woke up a little weary and the feeling only got worse during the day. I just felt a bit weak, unsteady and I found it difficult to concentrate. I actually had been warned that this lack of concentration might happen. One of my colleagues who has been through chemo for her breast cancer (and who is helping out in our clinic in my absence) told me that her thinking was “fuzzy” during the chemo. Man, she was right. I found it difficult to read entire articles in the paper yesterday. The headlines I could manage, but getting into the details was difficult.
Since I didn’t feel well for the first time, and didn’t feel like doing much around the house yesterday, Kathy took me to a movie. We saw “Road to Perdition,” and I’ll give it two thumbs up, though it was a very somber, dark movie and didn’t do a lot of good for my mood.
Today I feel the same, a little like I’ve been drinking or something. I also notice that even with spell-check there were a number of typos in my message from yesterday. See, I can’t concentrate very well all of a sudden. A couple of days ago I was kinda feeling guilty that I was feeling so well and wasn’t at work, now I know the reason I was told to take off work. Even as I write this I find I can’t keep all my thoughts lined up and have to work to keep the paragraphs flowing. So maybe I’ll quit for now.
There are a bunch of other things I want to write down at some point; how I felt when I got the news about the leukemia, what I expect from the disease and the treatment, and more, but I’ll get those into a subsequent “verse.”
So I think for now I’ll go out and lie in the hammock again since that’s all I’m up for at the moment.
Until later,
Dave
Thursday, July 25, 2002
Still doing okay; more about Rituxan
Dave's Great Adventure
Chapter 1, Verse 3
July 25, 2002
Well, the third day has come and gone without any problems, thus far.
Yesterday I started out the day sleeping in a bit late, getting up about 8:30. Kathy was waiting for me downstairs and hadn't gotten ready to go to her swimming aerobics class yet (which starts at 9:00) because she hadn't wanted to bother me. I had to convince her I'd be okay and that she could go to her class, which she really enjoys. So I got her on her way and had some breakfast. Then, I went out and worked on the backyard.
We have lovely aspen trees in our yards. They grow quickly and give great shade and privacy, but the damned things send out shallow roots all over the place and these send up shoots wherever conditions are favorable for growth, like in one's grass. The back yard has lots of these shoots. I've mowed them down repeatedly but they keep coming back, so yesterday, since I was still feeling well, I attacked them with a knife, in order to try to get to the roots. I hacked down a small grove of the silly things. (I feel I must explain some of these side issues in some detail, because, though my Colorado friends know what this is all about, the messages are also going to Georgia, Oklahoma, New Mexico, Montana, Texas, South Carolina, California and to friends in Germany, too)
So after I finished the lawn work I took a bath and wrote a letter to you guys. And then my mind is starting to find things to worry about. "How come you feel so normal? Is the stuff working?" The chemo I'm taking does not always work, of course, but it works most of the time, at least for a while. So I start wondering if I'll be the exception again, like when I got the leukemia in the first place, or like when none of my sibs matched me in marrow typing. I'm a worrier, always have been. Well, I thought I might beat the odds again, and bought a Lotto ticket a couple of days ago; hey, I got a $3.00 winner! It's a start.
After pre-loading with a lot of fluids yesterday we went in for round three of the Fludara and Cytoxin. I again was premedicated with the Anzemet (great stuff) and the dexamethasone and they plugged in the IV. Away we went. Again, no problems at all, no symptoms, no nausea. I joked with my doc that I must be in the placebo control arm of the "study" since I continue to feel so normal. I read for the 90 minutes or so that the infusions took and then we left. It was too early this time to go for Mexican food, so we came home, watched the news and then went out for Wendy's burgers.
I continued to force fluids the rest of the evening, per my nurse's (and Kathy's) instructions and of, course, that made for a relatively restless night with frequent trips to the bathroom. I won't have to do that so much again until the next rounds of the chemo, but I still need to keep well-hydrated because of the allopurinol I'm still taking daily.
Today I don't feel quite so energetic as I had been feeling. I don't know whether it's just that I has a restless night or whether the poisons are finally kicking in. If the medications are finally kicking, so much the better. Maybe I'll stop worrying a little.
Let me tell you a bit more about the Rituxan and why we're going to use it. I mentioned earlier that it is a mouse (!) antibody against specific antigens or proteins on many leukemic cells. (I'll have to remember that as I trap and kill the little field mice that get into our basement every winter; their cousins may be helping me live longer)
The drug was just approved for use against lymphomas a very few years ago, about 1999. But since lymphomas and CLL cells carry many of the same antigens, it was thought that perhaps the drug would work on leukemic cells as well. So, over the last couple of years various organizations have been studying the use of the Rituxan alone or in combination with chemotherapy as a treatment for CLL. These studies have shown some pretty good response rates (partial or complete remission), much better than many standard drugs which often have less than a 20% response rate or so.
The best response was in a study from M. D. Anderson in Houston where they gave the Rituxan concurrently with the Fludara and Cytoxin. This was reported in a publication called "CLL--The Cutting Edge" in April 2002; right up to date. There the response rate was 90+ percent, an astounding rate (but this is still in a small study of about 130+ patients). Of these, about 66% had a complete response, or a normalization of the blood counts, and of the 66% complete responders, about half had no genetic evidence of disease at the end of the short, 18 month study. These are small numbers and the follow up is short as well, but it is very encouraging news in the study of a disease where there really is no know long-range cure yet. There were only two "early deaths" reported in this study, as opposed to the 25% mortality rate from bone marrow transplant, much better odds I think, at least in the short run.
So, that's where we're headed. The next thing I have to do is get a blood count in about 7-10 days, and see where my "Ralph" (low point, or nadir)* count is, the we get ready for round two, starting August 20th and going through the 23rd, our which will be our Thirty-Third wedding anniversary! What a way to celebrate!
(*For my German friends, I'm making a joke on the name of a Green politician in America named Ralph Nader, with whom I have very little in common politically).
And that's about all for today. I'll keep you updated on any changes in condition or plans as the days go by. Feels free to ask questions if anything I've said didn't make sense or was incomplete.
Until later,
Dave
Chapter 1, Verse 3
July 25, 2002
Well, the third day has come and gone without any problems, thus far.
Yesterday I started out the day sleeping in a bit late, getting up about 8:30. Kathy was waiting for me downstairs and hadn't gotten ready to go to her swimming aerobics class yet (which starts at 9:00) because she hadn't wanted to bother me. I had to convince her I'd be okay and that she could go to her class, which she really enjoys. So I got her on her way and had some breakfast. Then, I went out and worked on the backyard.
We have lovely aspen trees in our yards. They grow quickly and give great shade and privacy, but the damned things send out shallow roots all over the place and these send up shoots wherever conditions are favorable for growth, like in one's grass. The back yard has lots of these shoots. I've mowed them down repeatedly but they keep coming back, so yesterday, since I was still feeling well, I attacked them with a knife, in order to try to get to the roots. I hacked down a small grove of the silly things. (I feel I must explain some of these side issues in some detail, because, though my Colorado friends know what this is all about, the messages are also going to Georgia, Oklahoma, New Mexico, Montana, Texas, South Carolina, California and to friends in Germany, too)
So after I finished the lawn work I took a bath and wrote a letter to you guys. And then my mind is starting to find things to worry about. "How come you feel so normal? Is the stuff working?" The chemo I'm taking does not always work, of course, but it works most of the time, at least for a while. So I start wondering if I'll be the exception again, like when I got the leukemia in the first place, or like when none of my sibs matched me in marrow typing. I'm a worrier, always have been. Well, I thought I might beat the odds again, and bought a Lotto ticket a couple of days ago; hey, I got a $3.00 winner! It's a start.
After pre-loading with a lot of fluids yesterday we went in for round three of the Fludara and Cytoxin. I again was premedicated with the Anzemet (great stuff) and the dexamethasone and they plugged in the IV. Away we went. Again, no problems at all, no symptoms, no nausea. I joked with my doc that I must be in the placebo control arm of the "study" since I continue to feel so normal. I read for the 90 minutes or so that the infusions took and then we left. It was too early this time to go for Mexican food, so we came home, watched the news and then went out for Wendy's burgers.
I continued to force fluids the rest of the evening, per my nurse's (and Kathy's) instructions and of, course, that made for a relatively restless night with frequent trips to the bathroom. I won't have to do that so much again until the next rounds of the chemo, but I still need to keep well-hydrated because of the allopurinol I'm still taking daily.
Today I don't feel quite so energetic as I had been feeling. I don't know whether it's just that I has a restless night or whether the poisons are finally kicking in. If the medications are finally kicking, so much the better. Maybe I'll stop worrying a little.
Let me tell you a bit more about the Rituxan and why we're going to use it. I mentioned earlier that it is a mouse (!) antibody against specific antigens or proteins on many leukemic cells. (I'll have to remember that as I trap and kill the little field mice that get into our basement every winter; their cousins may be helping me live longer)
The drug was just approved for use against lymphomas a very few years ago, about 1999. But since lymphomas and CLL cells carry many of the same antigens, it was thought that perhaps the drug would work on leukemic cells as well. So, over the last couple of years various organizations have been studying the use of the Rituxan alone or in combination with chemotherapy as a treatment for CLL. These studies have shown some pretty good response rates (partial or complete remission), much better than many standard drugs which often have less than a 20% response rate or so.
The best response was in a study from M. D. Anderson in Houston where they gave the Rituxan concurrently with the Fludara and Cytoxin. This was reported in a publication called "CLL--The Cutting Edge" in April 2002; right up to date. There the response rate was 90+ percent, an astounding rate (but this is still in a small study of about 130+ patients). Of these, about 66% had a complete response, or a normalization of the blood counts, and of the 66% complete responders, about half had no genetic evidence of disease at the end of the short, 18 month study. These are small numbers and the follow up is short as well, but it is very encouraging news in the study of a disease where there really is no know long-range cure yet. There were only two "early deaths" reported in this study, as opposed to the 25% mortality rate from bone marrow transplant, much better odds I think, at least in the short run.
So, that's where we're headed. The next thing I have to do is get a blood count in about 7-10 days, and see where my "Ralph" (low point, or nadir)* count is, the we get ready for round two, starting August 20th and going through the 23rd, our which will be our Thirty-Third wedding anniversary! What a way to celebrate!
(*For my German friends, I'm making a joke on the name of a Green politician in America named Ralph Nader, with whom I have very little in common politically).
And that's about all for today. I'll keep you updated on any changes in condition or plans as the days go by. Feels free to ask questions if anything I've said didn't make sense or was incomplete.
Until later,
Dave
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