Saturday, August 31, 2002

Bad news, but I'm lucky. And getting fat!

Dave’s Great Adventure
Chapter 2, Verse 4
August 31, 2002
More Bad News

I had just hit the “Send” button for my last letter when I got an unexpected phone call from a friend in Indiana, Scott Haswell. Scott was a doctor in training when I was a teaching staff doctor back in El Paso years ago. I taught him everything he knows :).

Scott called to tell me that a mutual friend named Jim Bretell has died unexpectedly in Arlington, Texas. Jim and I trained in Ob-Gyn together at the same hospital in El Paso back in the very early 1980s. Jim was a great guy to be around, always laughing and cutting up. He got out of the Army a number of years ago, and I hadn’t seen Jim for a long time, but I still had a special place in my heart for Jim. A great guy. Jim had recently had a simple knee surgery and was recuperating at home. His wife left home to go to church and while she was gone, Jim apparently had a massive pulmonary embolus (a blood clot that went to his lungs) that killed him! Jim was only fifty and had three kids. Like I mentioned a few letters ago, we just never know what tomorrow is going to bring. I feel so bad for Jim’s wife and kids. I know, knowing Jim like I did, that his family will be taken care of financially, but that will be the least of their worries for quite a while. They will be missing Jim.

Do you realize how lucky I am? Yes, I have a deadly disease that will probably get me at some point, but the disease does not cause me to suffer at all (except as a result of the chemotherapy, perhaps). And the disease has caused me to take a long look at things to make sure everything is done to make life easier for Kathy when I check out. And my family has time to get used to the idea that I’m not a permanent fixture and will really be gone at some point. Jim and his family didn’t have that chance. Life is fragile.

I’m also so very lucky because I work for an excellent, excellent company that is taking great care of me and paying me to stay home for six months. Not everyone has such luck. And I’m lucky that they’ll take care of Kathy too, when the time comes.

And I’m lucky that I’ve had almost none of the severe side-effects of chemotherapy that so many people experience. I’ve had no nausea and vomiting, mouth ulcers, diarrhea, severe anemia, etc., etc. This could be a whole lot worse.

And I’m lucky that, in my misfortune, I’m surrounded by friends and family who love me and keep in touch with me all the time. Just yesterday I got four cards from friends at work.

And I’m lucky that I have Kathy around all the time to help me and keep an eye on me. She has been with me for every minute of every appointment and for every drop of chemotherapy since this started. Not everybody has a wife that is so devoted. She brings me water when I need it, whether I want it or not, she feeds me great stuff all the time, she makes sure I get my rest, she watches what I eat...she does everything for me. What a lucky guy I am.

Well, today, a week after I finished round two of the infusions, I’m starting to feel better again. I had some energy today and was able to get out and run a few errands. The “fuzzies” are all gone. Kathy kept telling me to slow down, not to overdo it, but I kept going. She was right, of course. I was beat by mid-afternoon. She was tired too, after doing her swimming this morning, doing enough laps to make a mile (!) and then running errands. Plus she’s getting the house ready for company; our daughter Jennifer and her family will be coming to visit, and our elder son will be flying in from El Paso. It will be a lot of fun to have them (and the granddaughters, of course) around the house for a while. So I took her out to dinner at a local Indian place we like to go to. We both love curries; this place has great curry dishes!

I was asked, since I didn’t mention it, if I still had to perform my, umm, excretory exercises after this last round of chemotherapy. The answer is yes. The chemotherapy is toxic to the kidneys and bladder and I need to flush it out after the infusions. If it sits too long in the organs it can damage them and cause bleeding. So, as before, I have to “excrete” two to three quarts of fluid in the twelve hours after the infusions. Since we didn’t finish the last infusions until about 4:00 PM, that meant that I was, again, up all night doing my “homework.”

Well, now I have more to worry about! The West Nile Virus has made it to Colorado and killed several horses. I wouldn’t normally worry about such things, but it attacks mostly immunologically compromised folks. Well, now I’m one of those susceptible people, so I can’t afford to get exposed to mosquitoes that might have the virus. In fact, just today I’m entering my most susceptible phase, my “nadir” that I have mentioned so often, when my white count will be at its lowest.

And speaking of which, I had blood drawn Friday to check my counts. The news continues to be fantastic! You probably don’t remember all the numbers, but in the last six weeks or so my white count had dropped from about 64,000 to 5,000 just two weeks after the first treatment and to 4,600 just before we started the most recent round. Well, now it’s been eleven days since we started that round, and my white count is down to 2,700! Another 50% drop in eleven days. But the best part is that all the normal stuff I need is, well, still normal; i.e. my red cell count, my platelets and my bacteria fighting white cells (neutrophils). I’m very encouraged by this news, though I really don’t know what it means in the long term. I have to think, however, that the leukemic cells must be very susceptible to the poisons we’re throwing at them!

I was talking about the healing powers of music in a recent letter so Tammy, one of our excellent nurses (who used to be “my” nurse until she got a recent promotion) sent me an article from entitled “Harmonizing Healing Through Music Therapy.” It of course deals with the therapeutic effects of music on sick folks. But, on careful reading, I discovered the REAL reason the nurses like the music therapy! In the article it says, “We noticed that the patients’ bells were not ringing as much, the patients would fall asleep more easily and some doctors got calm.” So, what they liked was that the music pacified the patients so they wouldn’t bug the nurses, and in addition, the doctors became more docile! Those devious nurses! You’ve got to keep your eyes on them; they’re always up to something! : ).

I don’t think I’ve mentioned what my weight has been doing during all this chemotherapy. Before I started on this stuff I expected to get sick and start losing a lot of weight, so I “pre-loaded,” I started to eat more high calorie foods and intentionally gained weight. Well, not only have I not lost weight from the therapy, I’m finding that with each round I gain about twelve pounds during the three or four days of the infusions. The reason is the pre-meds they give me. They include a very powerful steroid, decadron. Steroids can make you retain lots of fluids and can make you gain weight. So I get heavy real fast with each round of therapy. Fortunately, I am able to lose a lot of it within the couple of weeks after each cycle, but I am building up a bit of a paunch around my middle. I guess I need to be doing some exercise during the week that I feel good, just before I start the next cycle.

The only other thing we’ve done recently was to get a CT scan done of my sinuses a couple of days ago. You’ll remember that I went to the Head and Neck doc a few weeks ago and was put on a regimen of antibiotics, etc., for a recurring sinus problem. I’ve completed the meds and got the CT to see what the sinus looks like now. I was amazed at how quickly it went. We walked in, just a few minutes before my 9:30 appointment time, and I got right in. And the CT took, at most, five minutes. I was out of there much sooner than we expected to be out. We had planned to go to our Mexican food place for lunch, but it was much too early. What to do? Hell, we went anyway and called it brunch!

And that concludes another letter. I don’t expect too much to happen in the next week except that I’ll get my strength back slowly as I approach the start of round three. We look forward to the visits from our kids, so the next week should be a nice one.

Until then,


Tuesday, August 27, 2002

Wiped out! And hammock adventures!

Dave’s Great Adventure
Chapter 2, Verse 3
August 27, 2002

Well, there is absolutely no doubt that this stuff is doing something this time around. After my first cycle, I was wondering for a while if it was really working, so well was I feeling. This time, however, I started feeling very tired from early on. I mentioned to you that I was so tired that I had to sleep through my infusions last Friday, the 23rd, our 33rd anniversary! I only vaguely even remember writing that letter last week. I had to read it again today to see what I had written. I probably wrote too much; I’m not sure who all Ray had told about what’s going on with him.

I have been so wiped out that I hadn’t even gotten out of the house since Friday night, until I walked to the mailbox to mail some letters this morning. I’ve just been lying around and sleeping or dozing on the couch or the hammock. When I wake up, my appetite is okay, so I’m not losing any weight and Kathy is making sure that I get plenty of good stuff to eat. As with the last cycle, I really don’t feel unwell so much as I just feel very tired and weakened. Still, no nausea, vomiting, etc. I have some vague feelings of being a little warm, but no real fever. I suppose that’s from those damned mouse antibodies running around through my bloodstream!

I feel bad for my buddy Ray. He and I have always gotten along real well. We’re the slightly irreverent, kinda rowdy, beer-drinking part of the Doyle clan. He, I guess, had no idea this was coming. Huntington’s chorea is a genetically linked disease passed from parents (either mother or father) to offspring. It’s the same disease Woody Guthrie died of. Generally it affects its victims starting in their 40s so people see their parents with the disease and have an idea that they may, too, be at risk. But Ray’s mom died relatively young of what was thought to be lupus. They didn’t know what she had. Ray and I really beat the odds, didn’t we? I mean, I picked up a disease that only affects 1 of 30,000 Americans, while Ray gets a disease that only 30,000 TOTAL Americans have! You’d think that we could have picked a more common disease, perhaps prostate cancer or something. With about 1 in 5 American men getting prostate cancer, the odds of us both getting that would have been much greater, but no, we have to go out and get some weird diseases! (I better not ask for trouble--we could both still get prostate cancer!)

Ray apparently got his news the same week I sent out my “Reality/Fears” letter. He and I have been going through some of the same things, long? bad?...when? I mentioned briefly in my last letter that we talked about end-of-life strategies. In that regard we discussed living wills and the like. Such a document will take the pressure off our families when it’s time to pull the plug. We don’t want them to have to feel guilt or undue pressure when it’s our time to check out. And we’d both like to go out on our own terms, if we have that option. But enough about that for now.

I mentioned that I really haven’t done much over the last few days but rest. Curiously, as tired as I have been, the chemo causes insomnia too! So I go to bed, dead tired (ooh, bad metaphor!) and then after an hour of sleep, get up, being very restless. That’s been dangerous, as a time or two I’ve gone to the computer and logged on to eBay! There’s not too much more dangerous than a tired, fuzzy-thinking guy placing bids on on-line auctions in the middle of the night. So far I haven’t done any serious damage, though. We still own the house and the IRA is intact!

I have, as previously mentioned, been spending a lot of time in the hammock. Sounds boring, but it really can be exciting! Really! Read on....

I got a nice note from Sue McComas, who is a friend of my Mom’s in Muscatine. Sue has had cancer but is doing well now. She noted that while she was in her therapy, she listened to Mozart and also mentioned that there are studies suggesting it may help overall cure rates. I don’t know if there are double-blinded controlled studies comparing the effect of Mozart to Brahms or Mendelssohn, or for that matter, comparing Mozart to Enya or Dire Straits, but the effects of music, the relaxation it can induce, are well known and widely quoted. So I went out on the deck and plugged in my CD player, putting in Mozart’s Symphony 41, “Jupiter.” Now, I had been getting a little achy from lying for long periods in the U-shape that the hammock induces by it’s geometry, so I was gradually tightening it up, so as to try to make the “bed” more horizontal. That, of course, also raised the center of gravity. (Do you see where this is going?) While I listen to my music I generally have on a sleep-mask that we got on one of our airline trips, because it is a bit bright under Colorado skies, even in the shade. The effect is great; I can rest nicely most of the time. The effect, however, is that I have no real idea where I am on the hammock.

I listened to the symphony and relaxed. Then I put on Beethoven’s Fifth and began to rest again. I guess I got a little restless, listening to the more martial tones of the Fifth Symphony, and began to push up more toward the head of the hammock. A little too far, perhaps! I got my body so far to one end that the whole thing went down at the head end! With a great crash, I found myself kinda standing on my head (with a pillow under it, fortunately), eyes covered, with my feet in the air, in the hammock bed. The hammock stand, meanwhile, which is about 12 feet long, had gone through the slats of the arbor over the deck! Kathy had been watching the news when she heard the noise; she looked out and came to my aid. She had wanted to get a picture but was too concerned about me to grab a camera en route. There was no real harm done, other than the damage to the arbor. I’ll work on that some day when I’m feeling better. Maybe I need to get some different music. I’ll bet my friend Kent can recommend some nice relaxing organ and orchestra music that I could relax to. (He did a doctoral dissertation on the topic years ago.) Nothing I’d have to think about too much, though, okay?

Hey, I read in the paper a couple of days ago that there is a company offering to make a loved one’s “cremains” into a diamond. Now, isn’t this an interesting concept! The deceased as jewelry. I told Kathy I’d get her a pendant for our anniversary (a promise not yet fulfilled) but now, maybe I could be the jewelry! Doesn’t that sound neat? Of course, as I told her, any diamond made with my carbon would almost certainly have serious flaws.

Oh yeah, my younger brother Dan, wrote to ask me TO STOP MENTIONING QUITE SO PROMINENTLY THAT HE’S PIRATING CDs for me. He’s afraid the ASCAP lawyers, or whoever, will break down his front door and bust up his little operation. Okay, Dan, I won’t mention it again.

Well, the decorations that our friends put up on our back deck for us last week, on our anniversary, are still up, at least most of them. They look so good we haven’t wanted to take them down. Many have blown down during the afternoon winds, but some are still up. We’re still eating the beautiful little wedding-style cake they brought for us, too. I understand that my wonderful nurse, Debbie, was the prime-mover behind this caper, with help from our friend Joan as well. Thanks again guys. We love you! I had a little fun (as if I wasn’t fuzzy enough) with the helium balloons they left behind. I called Debbie, took a deep breath from a balloon, and left a message for her, in a “Donald Duck” voice, thanking her for all the stuff they had done for us.

I think it’s time for me to end this little verse and put it to bed. I’ll look at it again in a couple of hours and if I still like it, I’ll send it out to my “subscribers.”

Until later,


“I shall pass through this world but once. Any good therefore that I can do or any kindness that I can show to any human being, let me do it now. Let me not defer or neglect it for I shall not pass this way again.”

(This is a passage I had on my yearbook page when I was a senior in medical school in 1978; it rather summarizes my general philosophy of life. I still like it.)

Friday, August 23, 2002

Event horizons, my hair, lots of drugs, and more "fuzzies."

Dave’s Great Adventure
Chapter 2, Verse 2
August 23, 2002
The “Fuzzies” Redux

Well, if I’m going to get anything written soon it better be today. I’m feeling the “fuzzies” coming on after the three days of therapy I’ve had with this cycle. I have day four of the infusions today, so I expect it only to get worse over the next few days.

The infusions themselves have become very routine. I go in, they plug in the IV, show me what they’re giving me to be sure it’s the right stuff, and then run it in. There are still no immediate effects I’m feeling from the infusion; no pain, nausea, etc. I’m lucky in that regard. When things get going, I start reading and/or listening to my CD player. I still have been laughing out loud at the book I’m reading, the one my sister Deb in Sacramento sent me a few months ago. I need to control my laughter some times because there are some pretty sick people in that room getting their infusions, transfusions, etc. Some don’t look like they’re in the mood for laughing. After all, they’re all terminal or they wouldn’t be there, and some look fairly frail.

I need to tell you about this wonderful book, one of two that Deb has sent me. It’s called “Mirth of a Nation” and it’s edited by Michael J. Rosen. It’s a collection of humorous short stories, conversations, etc. I find it extremely funny and if you have a weird sense of humor you will too. $15.00 a copy. I’ll bet has it.

Kathy tells me that I need to define my “event horizon” that I referenced in my last missive. Surely you all know to what I was alluding, but perhaps the reference itself is a bit obscure. One of my many hobbies is astronomy, a hobby I get to practice all too seldom as there are only a few dark nights that are suitable each month, at the time of the new moon, and many of those nights are clouded over. Because of this hobby I study many astrophysical events, even ones I cannot see with my very nice telescope. Anyway, an “event horizon” is the edge of a black hole at the center of a galaxy. Beyond that point the gravity is so strong that even light can’t escape so we can’t see beyond that point, and anything that crosses that point will never return, so strong is the force of gravity. That’s what I was referring to.

I guess most of you don’t know that I’ve started to lose my hair, to some extent. My hair is pretty thick and fine so the loss isn’t too noticeable yet, but I’m leaving more and more behind in the bathtub each day, and I’ve just now started getting into round two of my therapy. It will be interesting to see what I look like at the end. As a guy, it will be easier than it would be for a woman; I can just shave my head and assume the “Vin Diesel” look, or just wear a cap. I’ll let you know how this develops over the next few months.

I mentioned last time that I was pre-medicated with benadryl and cimetidine before my Rituxan infusion, but really didn’t explain why. As you remember, the Rituxan is an antibody that attacks certain antigens (specifically shaped proteins) on leukemic B-lymphocytes (as opposed to the T-lymphocytes which are not leukemic). Well, white cells are like little baggies full of nasty chemicals. They’re filled with these nasty chemicals because their job is to search out bad guys and destroy them. You remember them, don’t you, from elementary school, with little amoeboid shapes and smiles on their faces as they swam through your blood looking for germs! If we then destroy them, they release all their chemicals, called lymphokines, cystokines, enzymes and a bunch of other things that I don’t remember. These chemicals then cause inflammation by causing the release of histamines and other substances from other cells, like mast cells and others you don’t want to hear about. Generally this reaction is localized at the site of an infection, so you get a sore thumb or something, but if we get the reaction all over the body, one’s blood pressure can drop, the kidneys don’t like to work and you can really get sick. The benadryl is, of course, an anti-histamine and the cimetidine is a histamine-2 blocker, so they reduce the overall effects of these nasty chemicals flowing through the bloodstream. So, there you have it! They seemed to have worked extremely well in may case. I only got the Rituxan the first day of therapy this week; in subsequent cycles I’ll be getting the Rituxan with the chemotherapeutic drugs on the same day, as the short studies we have show that the effect is greater against leukemic cells if they are given at the same time. So, my first days of therapy will be longer from now on.

Just a short aside, many of you remember that I sent you a warning about a computer virus I contracted about a year ago. I actually got it from the Mrs. Rommel I mentioned in my last letter. Her computer was infected by an attachment she opened and was sending copies to everybody on her e-mail list. She had no idea, as her husband had handled all the e-mail before his death. She had to get one of her brothers to fix the situation. Speaking also of such things, since someone is using my e-mail address to send out porn, or whatever, if you get anything from me that doesn’t seem right, before you open the attachment ask us if we really sent it to you. Folks out there are able to change the headers on e-mail to make it look like it came from someone other than who really sent it. And make sure you have your Norton or McAfee up-to-date!

I told you I was able to work four half-days last week. Well, I thought that with enough lead time I might be able to get in more work after this cycle, since I do have a little experience with how long the side effects last. However, I’m beginning to feel a bit like Trent Green. You remember him, don’t you? He was the highly regarded starting quarterback for the Saint Louis Rams who got hurt in a preseason game a few years ago. He was replaced by an unknown arena football player named Kurt Warner. Warner took the team to the Super Bowl and won the whole thing! Trent never got back into the game and was eventually traded. You want a even more obscure reference? I feel like Wally Pipp. He had a headache one day so didn’t start at his position at first base. His slot was taken by Lou Gehrig who went on to set the consecutive games played record which lasted for years. Wally never got his position back. Gosh, I’ve been so effectively replaced that I can’t get back into the starting lineup. I could only get one day of work out of my “good” week that I’ll have next month. (Note to those of you in the clinic reading this; these are just my own thoughts, don’t go running to the boss and tell him I’m whining about this. I’ll just deal with it, okay?)

I’ve told you about the remarkable drop in my white cell counts after just one treatment, even without the Rituxan. I’m just a little bit concerned about how far the counts will drop this time. I mean, if they dropped 95% before, and they drop another 95%, I’ll be at some very critical levels. I’ll guess we’ll see what happens and, again, deal with it.

I need to mention again that I’m continuing to get cards and things from my wonderful friends at the clinic. Joan and Debbie send me cards just about everyday, and I get e-cards on the weekends too! Meanwhile Tammy sent me a “Doctor’s Survival Kit” with a number of joke items, plus a nutrition book for chemo patients. And yesterday I got a slab of barbeque ribs which had been imported from Kansas City by friends we know socially. They were in KC getting their son off to college and stopped in to get ribs for me, too. What great friends!

I guess I’d better quit. I’ll have Kathy proof this for the many typos I know are hidden within the text, then I’ll try to get it sent out CORRECTLY tonight. On the FIRST TIME, I hope.

Until later,


PS: Now it’s much later. Kathy and I went in to the clinic for my last day of this round’s infusions. I was really feeling tired and “fuzzy” so instead of reading and laughing, I just put the headphones on and went to sleep through most of the process. It took a little longer than expected as my nurse forgot to open the infusion line for a while when she started the second bag of stuff, the Fludara. We got finished about 4:30 or so.

Kathy’s sister Sharon and her husband Ray were coincidentally passing through town tonight on their way to Stillwater, Oklahoma so we met them and their daughter and son-in-law for dinner after my infusions were completed. I wasn’t sure I’d be much company but after my nap in the infusion room and a glass of ice tea I was doing pretty well. It was so good to see them; they live in Montana and we don’t get together too often. We, unfortunately, got the news that my good buddy and brother-in-law, Ray, was diagnosed with Huntington’s chorea last week, a slowly terminal neurological disorder. So he and I are commiserating about our terminal prognoses and some end-of-life strategies. He’s not too badly affected yet, and he’s relatively old to even come down with the disease so there’s hope that it won’t be too quickly progressive. (Kristy, your folks don’t know this ...Sharon and Ray aren’t sure they want to tell them yet.)

After a too-short visit with Ray and Sharon, we came home to another surprise. Our friends from work had raided our home and left behind an anniversary surprise for us. Our back deck was decorated with Wedding Anniversary streamers and stars, and there was an anniversary cake in a cooler with a bottle of champagne! They had decorated our tables and left a couple of cute little angels and a book, signed by the author, titled “A Place on Earth,” filled with poetry and good feelings! Nobody signed the card that was left for us with a “21 Pun Salute” on our 33rd anniversary but we know who did this. Our friends at work are just too good to us. Thanks guys!

Bye for now. I may not be back for a few days if the “fuzzies” hang on for too long, but don’t worry. If anything really bad were to happen Kathy would let you know.


Wednesday, August 21, 2002

Chapter Two: The Rituxan

Dave’s Great Adventure
Chapter 2, Verse 1
August 21, 2002
The Rituxan

Sorry about that last letter. Kathy said I’d make people cry, and I guess I did, From our 15 year-old niece, Kelsey, in California, to my 82 year-old Mom in Iowa, and lots of other folks, I heard about tears. I wept as I wrote it, and Kathy did some crying as she proofed it for me, too. But I wanted to record , at some point, what I felt and went through during the early course of the disease, as I got the bad news. You can almost make out the stages of grieving in the letter: denial, anger, despair and acceptance, or whatever the hell those stages are (I never really learned them as I’m not much into psychiatry).

I just wanted to record what I felt like and what I wanted and needed to do as I learned of what I had, as they are things we should all be thinking about anyway, whatever our ages. Not just the wills and such, but the extra hand-holding and hugging. We really don’t know what tomorrow may present us with, do we?

Last week I really felt completely normal and healthy so I was able to work a bit in the clinic. Since I was supposed to be at the trial of the hit-and-run, which would have been Monday and/or Tuesday, I didn’t schedule myself for those days ( I actually scheduled the start of my chemotherapy so I‘d be in week four, and presumably recovered, for the start of the trial), but was able to get in half days the rest of the week, and then this Monday morning too. It was great to be back in the clinic and to be around my friends. I was disappointed that we were not able to schedule more of “my” patients into the time I had there, but I suppose it was unrealistic to presume that a lot of folks would rearrange their schedules to suit mine. However, I was able to see a bunch of ladies and do their checkups and such, probably at an earlier time than if I hadn’t been there. Monday was better in terms of seeing some of my own patients as I saw about four or five of the women I’ve been seeing for their pregnancies or whom I’ve been seeing annually for several years.

I was feeling so well this weekend that I tackled the cactus in our front yard. Years ago we planted little sprigs of cholla cactus along the sidewalk that leads to our front door. Well, they get a lot more water there than most cacti do, and are loving it! One has gotten so large it hangs over the sidewalk accosting all who attempt to enter. Fearing a summons from a rogue lawyer, I cut it back a couple times a year, most recently just last spring. But it was too large again so I got aggressive with it, and, at the same time, with a nearby prickly pear cactus as well. The cactus are beautiful when they bloom. The cholla cactus (which looks like branching inch-thick sticks covered with sharp spines) gets the most remarkable deep magenta colored blooms whereas the prickly pear (which is the kind with the more cactus-like oval flat pads that grow in a branching pattern [for those of you who live in Iowa or Georgia and are unaccustomed to the ways of cactus]) have beautiful yellow blooms. Of course, cactus blooms by their nature are transient. They bloom for, at most, six or seven days a year and then are gone. But the cactus are worth the trouble at least for those few days.

That night we went to eat in the home of one of my colleagues, a nurse named Christine. She and her husband had us, and Lou and Joan, over for fondue. In this family, Brian does almost all of the cooking. Kathy is getting ideas, thinking that this is a good deal. Brian even bakes his own bread, and it is excellent! We stayed there until about midnight, which is the latest we’ve stayed up since we started this chemotherapy stuff.

Sunday was interesting. We (okay, I mean “I”) got up a bit late but made it to church for the 11:00 service where we found the sermon was titled “This Precious Sip of Life.” The name comes from a line in a Dave Matthews song and the subject was how fleeting life is. The sermon featured a film clip of “Wit,” a play about a professor dying of terminal ovarian cancer who has decided that it is better to be kind than to be smart, now that she has more perspective on life. Then we heard the whole Dave Matthews song “Pig” from which the above lyric came. Man, these Methodists are right up-to-date with the multimedia thing! And, of course, the topic was all too appropriate.

After church we went to my favorite local barbeque place for lunch, but I wanted to get information on their catering services too. I’ve decided that, since I, too, have more perspective on life, and can see my “event horizon” approaching slowly, that I want to tell someone about my other great adventure, my “vacation” in Vietnam. For decades Vietnam vets have been looked upon as losers, druggies, and baby-killers. I’ve not shown my slides to anyone outside the family except to other Vietnam vets. I think that, before I go, I want to tell my side of the story and show what I was doing there. I’m calling this party my “Stayin’ Alive” get-together and noted on the invitation that once my guests have been enticed inside to get the free food, I’m going to lock the doors and subject them to all my pictures from Vietnam!

Well, I called this verse “The Rituxan” so I guess I should tell you about it. In short, it went well. I was to start the rituximab at about 10:00 and had been told the infusion would take about four hours. Hmmm, that seemed to exclude the possibility of a lunch. I called the clinic to inquire. “Since my infusion is to start at ten, and will last four hours...” “No, it will be five hours,” I was corrected. “Okay, five hours, am I permitted to bring along a snack or something?” “Yes, bring along some food, and get well-hydrated before you come in.”

Now, we know when the doctor’s office says it will be five hours, that they really mean six or seven hours, don’t we. We packed for an overnight. Sandwiches, chips, cherry tomatoes, banana, candy, CD player, CDs, books, magazines, change of underwear and more. Okay, not the underwear.

My doc didn’t get back from rounds at the hospital until about ten, so we were behind schedule from the beginning. He was very pleased with my response to the Fludara and Cytoxan. My numbers from the previous day were even a bit better than those from my nadir two weeks prior. All the good cells (red cells, platelets, neutrophils) had increased in numbers and the lymphocyte count had dropped a bit more, to 4,600! Good news. I tried to get a vague idea about how long he REALLY thought I had (like I told you I would) but he was "weaselly" like all doctors. (note: a weasel is another North American mammal that is, I guess, hard to catch; lawyers and people who are evasive are called “weasels”). He did allow that he thought I would have more than the average six years, but he said, and this is really true, “We’re writing the textbooks now!” In other words, we don’t really know how this stuff (the new combination I’m on) will work in the long term. As of right now we only have about 24 months’ experience with it. We really don’t know if or how long it will work to hold off the disease. I guess we’ll play it by ear.

So we went into the infusion room with our two suitcases full of food and stuff. Maybe they were just carry-on bags. Real small ones. My nurse was a gal named Marliss, who, it turns out, was a “neighbor” when we were about six years old. She lived in Heidelberg, near the old castle, on Badenburg Strasse, while we lived just across the river from the castle. Seeing her allowed me to speak just a little German. Anyway, Marliss started the IV for the Rituxan infusion. But before giving me the drug, she pre-medicated me with a few other items. First was plain old Tylenol (acetaminophen). Then she gave me doses of diphenhydramine (Benadryl) and cimetidine (Tagamet) through the IV (I’m spelling out some of this stuff because one of the people getting this works at a cancer institute in Germany). Both the benadryl and Tagamet are histamine receptor blockers which is important to use in combination with the Rituxan, to block reactions caused by the Rituxan. While she started the infusions of the pre-meds, I started reading and eating my lunch, since by now it was past 11:00. Kathy ate her lunch also, and got out a cross-stitch project we’ve been working on for a few months, a quilt for our second grandkid, Brooke.

I opened a packet of stuff I’d been sent by the widow of the dead bike rider (his name was Howard Rommel and he was related to the famous General Erwin Rommel from WW II). I had met with her a few weeks after the death of her husband, since she had not been present at his death. I have found that when people lose a loved one they often crave details of the death to know more about what happened. I told her what I had seen, that her husband was in no way, as far I could see, responsible for the accident. She told me she had been given copies of the other witness statements and asked if I’d be interested in seeing them. I said “Sure” and left it at that. A couple of weeks later a thick envelope appeared from her. I thought about it, decided, with brother-in-law/lawyer Bob’s (but he’s not a weasel) advice, that I probably should not open the packet and contaminate my recollection with the information from other witnesses. So, until the kid took his plea last week, the packet remained closed. I opened it for the first time there in the infusion room. Light reading!

The witness statements were, for the most part, supporting of each other, no real surprises. The kid has some sort of a learning disability, and when first confronted about the incident, claimed he had hit a cat! Then he said that Rommel was swearing at him and flipping him off (I don’t know the German equivalent, but it involves raising the middle finger), things I did not see. Anyway, while I was reading this stuff, the Benadryl kicked in and I was loopy and found it increasingly hard to talk or concentrate. About this time Joan, who had been in the building for a meeting, dropped in for a short and much appreciated visit. When she went back to her meeting I put the reading material away and got out the DiscMan. I put on another CD my brother Dan had made for me, this one by Sarah MacLachlan, and went to sleep. I was interrupted periodically by the infusion pump beeping, as Marliss steadily increased the infusion rates, but soon it was all over. Total elapsed time; about three and a half hours! That was a quick $1500 (about what the 750 mg Rituxan costs)!

So we repacked all our stuff and headed home. I felt tired, achy and weak. I took some more Tylenol went almost straight to the hammock with the DiscMan. Three hours later I woke up and looked in through the window of the family room. Kathy was looking out, at me. A couple of tears were in her eyes.

I came in, we had dinner, and we watched some History Channel stuff. I talked to Jen and Jon who called to see how I was doing, and then I went to bed early. I didn’t have any “homework” this time (you know, the excreting) so I got to sleep most of the night. I didn’t get up until about nine, and we prepared to go in for today’s round of Cytoxin and Fludara which started at about 2:00. But I’ll spell that out later. This has gone on long enough.

So until the next chapter in this adventure, I’ll sign off.


Sunday, August 18, 2002

The Reality of Leukemia; Fear and Sorrow

Dave’s Great Adventure
Chapter 1, Verse 10

The fact that I had leukemia forced itself into my mind, finally. I had denied the possibility for a long time.

I had been ill with some undefined malady for a few weeks, starting shortly after I got an immunization for hepatitis A and had missed a couple of weeks of work. We ran any number of tests to see what was causing the problem, but couldn’t pin it down. I was negative for everything, yet I was sick, weak, feverish. My tests for hepatitis, HIV, toxoplasmosis, mononucleosis, cytomegalovirus and many more things were all negative. My liver functions were up, an indication of some mild liver damage, but they slowly returned to normal over a few weeks. Yet my white count remained high, in the 20,000 range, with about 4,000 to 10,000 being normal.

Leukemia was mentioned early as a possibility since nothing else was showing up, but we really didn’t think it was likely; leukemia doesn’t present with fever and weakness. It MUST be something else! I slowly recovered from my symptoms and began feeling normal. I returned to work and we followed my white count weekly, but it stayed high. I kept looking for a reason other than leukemia for my white count to be so high, but nothing panned out. Finally we did a test called flow cytometry which specifically analyzes the white cells. My doc was out of town when the results came back, but another friend, an internist named Kin Chan, called to tell me that the test was consistent with CLL. At that moment, everything changed.

Yesterday I was living, today I’m dying.

Intellectually, and in the abstract, we all know that we’re “dying” and will eventually succumb to something. But suddenly I had the name of the disease that would kill me, and a vague time frame for the remainder of my life, perhaps three to five years. It wasn’t supposed to be like this. We have so little malignancy in our family, and so much cardiovascular disease that I was “certain” that I’d die a cardiovascular death in my 70s, like so many of my male relatives. Maybe I’d even get into my 80s, since I never smoked, did any illegal drugs, didn’t drink to excess or did so many of the other things that my uncles did, especially the smoking, that caused their demise by sudden heart attacks in their 70s, as had happened to every one of them

Damn it! Why the hell did this have to happen to me? It wasn’t fair. My only vice was butter and cream, not toxins like cigarette smoke and stuff. I wondered if my exposure to Agent Orange in Vietnam might have caused it, but there’s no known connection. There must be some reason I got it! It’s not supposed to run in families and Dad was the only person in the family that ever had leukemia. We were told when he died that it was probably his exposure to chemicals all his life, as a clinical laboratory officer, that caused it. I should have been safe from this disease. Damn it!

At that moment, everything changed. I realized instantly that I wouldn’t live to see my grandkids grow up. I wouldn’t live to see my family grow with more spouses added to the family tree and with more grandkids at some point, and mostly, I’d have to leave Kathy much too soon. We had planned to grow old together and live a quiet life in retirement in New Mexico. I knew at that moment that we couldn’t do it even for a short time. I couldn’t retire. I couldn’t leave Colorado. I was uninsurable. I could never get health insurance anywhere else ever again.

Yesterday I was living, today I’m dying.

Because I can’t leave town, because I can’t get health insurance elsewhere, I’d have to keep working, if only to get the health benefits. Kaiser takes very good care of its docs, but I haven’t been with the organization long enough to retire (though if I quit, I would get a stipend if I’m still living at the age of 65). I could quit and pay for the insurance myself, but my only income would be my Army retirement, which isn’t enough to pay the bills. As soon as I got the diagnosis, I knew I would have to keep working, essentially until I died or was at least old enough to get into my retirement accounts. That’s not what we had planned, at all.

Yesterday I was living, but now I’m dying.

I was stoic about the diagnosis for several days, continuing about my work in the clinic, but inside I was anguished. I kept seeing the patients, but found it hard to concentrate on what they were telling me. Their problems seemed so trivial. They had cramps, maybe some spotting, perhaps a vaginal discharge. “Lady,” I wanted to say, “You think you’ve got problems! Let me tell you about problems. I‘m dying!”

I could not sleep. I was so worried inside that I could not rest or sleep. I took sleeping meds, and they forced me into sleep but only allowed me a few hours of rest, then I’d awaken again and thrash around until time to get up. On about the third day after I got the diagnosis, I was on the way home from the hospital when I suddenly started sobbing. I was going to have to leave Kathy! I was supposed to be there for her for all her life, and I was going to leave her alone and lonely. I sobbed all the way home. And when I got home, I looked at Kathy and broke into uncontrollable sobbing once again. This went on for several days.

I was able to control my sorrow, for the most part, while I was at work and my mind was on other things, but a couple of times, while talking with friends in the clinic, I would think of Kathy and break into tears. Joan, Debbie, Tammy and my other wonderful friends at the clinic were comforting and helped as much and as often as they could. I got more hugs that week than I’ve gotten in the previous nine years.

A couple of weeks after I got the diagnosis, I was still not sleeping, despite taking sleeping meds every night, even in larger that prescribed quantities. I dragged through the days, tired, like I have all my career when I was tired. I’m a doc; I’m supposed to work even when I’m tired. Kathy had her surgery during this time. She did well, but during this time I was on Labor and Delivery one Saturday. I was going through the motions, doing okay, when I suddenly became disoriented. I didn’t recognize where I was on the L&D ward. I went to the doc’s lounge to lie on the couch. The beeper went off, I looked at the number but didn’t recognize it. I looked and looked, and after a minute or so, I realized it was my home phone; Kathy was beeping me! I was just completely exhausted from not sleeping night after night.

Two days later, Kathy awoke in the night with acute abdominal/chest pain. I went over all her symptoms, in the middle of the night, trying to see if she was having a pulmonary embolus, a bowel obstruction or any of the other myriad things that can go wrong after surgery. I did my best with just my hands and my ear on her chest and abdomen and decided that she probably did not having anything life-threatening going on. I gave her some pain pills and she did okay. Thank God I was right. Now I worried about her more, too. I got up again in the morning and went to work.

I must have looked like hell. When I got there Joan asked me how I was doing. I said "Okay," but she wasn’t at all convinced. She quizzed me about what was going on. After talking a bit, she talked me into calling our boss and going back on sick leave. I didn’t want to do it because it meant inconveniencing so many patients and causing so much work for the others, but she was right. I needed to take some time off. I was physically and emotionally exhausted. I was to the point that I really couldn’t concentrate to even drive to work, so many were my worries.

I worried that if I was to die soon, there were so many things I had to do to help Kathy, while I still had the time. I fretted about what to do. I wanted her to have a new car, a place in Texas to go to so as to be nearer our kids, I wanted to give away my stuff or at least organize it for her so she’d know what to do with it. There were so many things to worry about and do, and I couldn’t get them all done. It was impossible. I worried about what would happen to her, how she’d cope. How she could get all the things done that needed to be done. And where should I be buried? Should she have to make that decision?

I don’t, at least on a conscious level, fear death. I just get intensely sad when I think about leaving Kathy. I cry frequently when these thoughts get into my mind. I was crying a couple of weeks ago at Handcart when I was there with Kathy. It was so beautiful being there with her. I shouldn’t have to leave her. But then, I guess we’re not the first couple in love that has been separated by death. I cried like this when I had to leave for Vietnam, when I didn’t know for sure if I’d ever see her again. This time, however, there’s no doubt that I won’t coming back.

I’m sad about leaving my kids and grandkids too, but I don’t worry about them so much because they have other loved ones in their lives to help them along. Kathy will be very well taken care of financially, but that’s not what’s most important to her. She’s not much into material things. I mean, my income is in six figures, but she still shops at Target and Mervyns. I don’t think she’s ever even bought anything in Nordstroms or Lord & Taylor! The money will make sure she can pay her bills, but that won’t be what I worry about for her. She’s not a person who likes being alone. We’ve been together so long that we almost act as one organism, never doing anything without the other. Again, I worry about her being alone and lonely.

It’s been several months now since I got the news about my leukemia. I know it’s terminal, but I know I have some time left and several possibilities for treatments to stave off the disease for a while. We’ve used the time over the last few months to make some tentative plans and to do some things we needed to do anyway, like seeing a lawyer and getting wills and powers of attorney set up. Our previous wills were about twenty years old!

Curiously, this disease has allowed me to be with Kathy more than usual. Since I’ve been off work, we have had the opportunity to spend much more time together. We’ve seen movies, gone out to eat, had a picnic and have just done errands together. Sometimes I’m not a lot of company, like when I’m feeling really tired and am just lying in the hammock, but at least I’m at home with Kathy and she can be nearby and keep checking on me, bringing me my fluids, snacks or whatever. We have always been a rather cuddly couple, but now we hold hands and hug even more than we used to. Now we know our time together is measured in double digit months and not double digit years like we used to think.

Next week I’ll be seeing my doc again. I’m going to try to pin him down as to how much time he REALLY thinks I have left, so Kathy and I can make some reasonable plans for the next few years. I honestly don’t want to work until I die. That’s too much like the old saying, “Life’s a bitch, and then you die!” There must be some other reward before I check out. I want to be able to retire. I’ve been saving money all my life; I’d like to enjoy some of it before I go, but most of it is in retirement accounts that I can’t get into until I’m 59 1/2. Hell, I may not see the age of 59 1/2. We’ll see what he says, and what we can work out.

I’ve been working this week. I’ll tell you about that later. Next week we start the Rituxan. I’m anxious to get on with this. I’ll give you another update early next week when I start Chapter 2.

Until then,


Tuesday, August 13, 2002

Recovering well, selling our land and visiting Las Vegas for a wedding!

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! 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,


(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, wait, I think.........)

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,


Thursday, August 1, 2002

Officer Beavers, and more new therapies offer promise.

Dave’s Great Adventure
Chapter 1, Verse 7

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,

{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!}