Thursday, September 26, 2002

A Long List of Side Effects

Dave’s Great Adventure
Chapter 3, Verse 2
September 21, 2002

First a note to those of you on Hotmail, WebTV, MyMailStation and the folks in Orange, Texas. Attached to my last message was a cartoon that you didn’t get. I got a number of messages back saying they were too big for your server, or something. And, of course, the MailStation and WebTV folks can’t get attachments anyway. But the cartoon went as follows: (1) Person lying in bed, thinking, “Lots of fluids, lots of rest...lots of fluids, lots of rest... (2) Opens eyes, saying “Yeesh” (3) Gets out of bed saying “I’m trying to follow that prescription...” (4) Heading toward the bathroom, says “But one keeps interfering with the other.” That seemed appropriate for my current instructions!

After day two of the infusions this week, I went home feeling pretty well. That was a good thing as we were to have guests that evening. Kathy’s little sis, Kristy, and her friend, Kerry, came in from Oklahoma City, on their way to a conference at Keystone Resort, in nearby Breckinridge. They arrived during a much needed rainstorm, but had no trouble finding their way to our home. When they left Oklahoma City it was in the 90s and so they were dressed in shorts. It was in the 40s when they got out of the car here. Welcome to Colorado! We had a nice visit with them, and then they offered to take us out for dinner, an offer we rarely refuse. We went to a nearby Italian place many of you locally know, Bisetti’s, where we had a great meal of more than any of us could really eat. We took home four boxes of food.

Kris and Kerry were tired from their trip so went to bed soon after dinner, as did we. We all slept in a bit late the next morning, but were up in time to plan a breakfast together before we headed out for my next round of chemotherapy in the morning. The local wildlife put on a good show on the deck for our guests, with the magpies and scrub jays coming in for their handouts and our “pet” squirrel “Stubby” dropping by to be handfed out on the deck before we left. After feeding the birds and squirrels, we decided to take Kris and Kerry to the place we’ve been going so often recently, our Mexican place, El Tejado, since it’s on the way to the clinic anyway, and it would also be on their way out of town. It really is not very close to home, probably being about ten miles from here, but since it’s right on the way downtown, it’s been getting a lot of our business lately!

The Mexican breakfasts we had were filling, as usual, and after we finished we sent our guests on their way to Breckinridge, with a stop planned at the Denver Mint for a quick tour. We headed for the clinic and found ourselves there quite a bit early. But for some reason, the folks at the chemo

September 26, 2002

I tried to get a letter out late last week but was just too tired and fuzzy to make sense. And my writing wasn’t very scintillating either, so I quit. I’m just now getting back to where I can really string my thoughts together coherently. Probably most of you were grateful not to be getting any spam from me last week, but occasionally I worry folks when I’m away from the keyboard too long.

To continue where I abruptly left off above, the folks at the chemotherapy clinic were running ahead of schedule as a few patients hadn’t shown up (how DO you forget your chemo appointment?) So they got me in early and we were able to get done early. The IV went in okay this time; the nurse, one we hadn’t seen before, named Barb, cheated and put it in the same puncture site from a couple days earlier. Usually they use new sites each time so as not to scar any one vein too much. The infusion was uneventful, I read during the appointment and didn’t feel too badly. During the previous cycle I had been very tired by the third day and I thought it was the addition of the Rituxan causing my fatigue. Now I think it was just lack of sleep during the previous nights from my “excretory exercises.” I really have to get up just about every hour all night long on the three days of my infusions. It makes it very difficult to get any satisfactory rest!

We didn’t do too much for the next several days. I started really getting weak and tired by Friday. As it’s getting a bit cool for the hammock, I only spent part of Friday afternoon on the deck, then had to move my rest area to the couch in the family room. I was horizontal for most of the next three days, feeling weak and tired. I slept in until 11:00 on Saturday, something I’ve never done before. I kept trying to get up, but was too tired when I tried to get out of bed. After I finally got up, I made it to the bathtub but was exhausted by the time I’d finished cleaning up. So, off to the sofa I went. There was a football game on, Colorado against UCLA. You know what UCLA means, don’t you? University of Colorado Loses Again! But, the local boys surprised the heavily favored Bruins and beat them handily in a game I dozed through.

Sunday and Monday were much the same with me on the couch, watching/dozing through football games. I went through another spell where I didn’t even get out of the house for four days. I wanted to, but just felt too weak. Finally on Tuesday I got Kathy to take me out for lunch at our local custard shop. It felt good just to be outside.

Wednesday was my birthday and I was treated to a surprise singing of Happy Birthday and presented with a balloon bouquet by several of the folks from work who dropped by over the lunch hour. I also got a ton of birthday cards. My Mom and others had talked to friends and relatives from all over, asking them to send birthday cards to me. And my wife had been holding back the cards. So yesterday I got over 40 cards, and another dozen came in today. My cousin Wanda Drayton, up in Illinois, even had friends of hers who don’t even know me send cards! Hey Wanda, Kay Schlesinger says that she has some great stories to tell about you, and let on that she’s younger than you, too. I got a number of great laughs and lots of wonderful thoughts in all those cards, which many of you were in on. Thanks!

In a recent letter I discussed the fact that there is not much more that can be done for me, at least at present, if the leukemia fails to go into remission, or returns at some point. In response to that, my Mom asked how we’ll know if it worked in the first place. Good question. There are at least two steps we’ll be going through to see if it works. First, I’ll have another bone marrow biopsy a couple of months after we finish the six or seven rounds of chemotherapy. That will show if we seem to have cleared out the leukemic cells from the marrow in the short term. You may remember that my marrow was 40% leukemic the week before we started the treatments. If that looks good, cleared of leukemic cells, then we’ll follow my white count to see if it again becomes abnormal. That, however, is an open ended process. In theory, if I get out five years from the end of the treatments and haven’t relapsed, then I’m considered to be “cured” though it still could come back at about any time. Remember that we don’t have any long term studies of the results of the course of treatment I’m getting. I guess the way we’ll really know if it works is if the disease hasn’t come back by the time I die of something else. At age 80 or so, hopefully.

I think I’ve been remarkably free of side effects of this treatment since I haven’t ever vomited, but when I really think about it, I really have had a lot of side effects, just not the ones I worried about the most. I hate to vomit! I’m glad that’s not one of the things that I have had, as listed below in excruciating detail.

SKIN: Starting the day after my infusions and lasting a week or two, my skin and my hands feel very dry. This time, I also feel itchy, for the first time. I also get a rash after two to three weeks, but the rash is just a fine red rash all over my body which hasn’t bothered me too much.
HAIR: I have mentioned losing hair. I lose some hair about three to four weeks after each infusion. Our hair grows in cycles, with some actively growing, as I recall from physiology classes long ago, and some “resting.” The drugs affect rapidly dividing cells all over the body, hopefully mostly the cancer cells which are the most rapidly dividing, but also the cells in the hair follicles that are growing at the time. So, a few weeks after each cycle I lose some more hair. It still doesn’t look bad at all, but I haven’t gotten a haircut since before the trip to Las Vegas a number of weeks ago. I lose most of my hair in the bathtub about the time I’m getting another round of drugs. Unfortunately it doesn’t seem to affect the hair growing out of my ears which is doing just fine.
VOICE: I get hoarse with each round of the chemo. Nobody mentioned that this would happen, but it has each time. I guess a couple of things are happening. First, I retain a lot of fluid that may collect in my vocal cords, making me talk like I have a cold. Also, the mucosal membranes of our bodies have a lot of rapidly dividing cells, so the mouth may be a bit inflamed as well. That’s why many folks getting chemo have bad mouth ulcers. Anyway, I think the vocal cords are a bit swollen and inflamed.
WEIGHT: It is incredible how much weight I gain with each round of chemotherapy. I actually gain 12-14 pounds in the three days of the infusions! Suddenly my pants don’t fit. Kathy had to go out and buy me some sweatpants to wear for that week of my cycles. The drugs they give me to prevent nausea (thank God!) include the powerful steroid Decadron. Well, that causes one to retain fluid and get fat. I drink a lot of fluids to flush out my kidneys, but not all of it gets excreted. Even after the infusions, I have to get up multiple times each night for close to a week to pee off the fluids I collect during the infusions. I get just about back to my normal weight in time to start another cycle.
SEXUAL: Ah, yes, sad to say, there are some sexual side effects as well. I hate to mention this, as I don’t want to embarrass my kids, who like all kids, see their parents as asexual creatures anyway (which begs the question: what are you kids doing here, then?). But for much of the cycle every four weeks there’s a problem in the plumbing. You know, Rover won’t do any tricks. Won’t sit up and beg. Enough!
GASTROINTESTINAL: The drugs they give me to prevent nausea work superbly. The steroids and Anzemet have prevented any nausea, and I’m very grateful. I really hate to throw up. And my appetite has remained normal, for the most part. But they work just as well at the point of exit. Suffice it to say that I’m trying to get lots of fiber. The effect lasts about two to three weeks.
MOUTH: After each round my mouth feels funny, like it’s furry or coated, or something. Maybe it’s the inflammation I mentioned earlier. If you’ve ever eaten really rich homemade ice cream, and had the coating of butterfat on the roof of your mouth when you’re finished, that’s what it feels like. I found that it makes me want spicy foods more than I usually do. Last Monday Kathy got me a bucket of hot wings to snack on during the football game. She figured that twenty wings would be enough of a snack for then with some left for lunch the next day. Well, I ate them all! Plus on Sunday I had nachos with lots of jalapenos. Usually I pull the jalapenos off the nachos; Sunday I was piling more on. I don’t know why, my mouth just demanded more stimulation.
FATIGUE: This is what I notice the most. From about day four of an infusion cycle and lasting for about a week in its severe form, and almost three weeks in a lesser form, I just feel completely wiped out. During the “fuzzies” I can’t think well (though I continue to beat Kathy at Quiddler most of the time...she should be embarrassed) and it’s a struggle just to get out of bed. This only lasted about two weeks after the first cycle, but really never completely resolved after the second cycle. I think the fatigue is going to be a cumulative effect with each cycle and will be more severe and longer lasting with each cycle. We’ll see how I do with this cycle. I continue to get up in the morning thinking I’m doing great, but then I find I’m tired again within an hour or two.
SINUSES: The sinuses can be a problem for anyone undergoing chemotherapy as there’s always bacteria in the sinuses. Generally the body’s defenses can keep them under control, but when the immune system takes a major hit the bacteria can get out of control and cause infections. Well, I was having problems even before I started the drugs and so I’ve had a flare of sinusitis every month, usually about the time I hit my nadir, when my immune system’s at its weakest. I can clear it with a round of antibiotics, but I hate to take them every month. I’ll be seeing my nose doc next week to see what she can do to help with a more permanent cure of this problem.

I believe I’ve gone on much too long, so I’d better put this “edition” to bed. I’ll be getting another blood test done to check my white count on Monday, and I’m again very curious to see what it will be down to. Until then....


Heard on a TV show recently: “If you want to hear God laugh, tell Him your plans.“

Tuesday, September 17, 2002

Chapter Three; More Rituxan

Dave’s Great Adventure
Chapter 3, Verse 1
September 17, 2002
More Rituxan

Well, today I completed my first chemotherapy “hat trick,” I got three drugs at one sitting and, again, did quite well. (A “hat trick” in American and Canadian hockey is the act of scoring three goals in one game; does anyone know the derivation of this term?) Back to that in a moment.

Yesterday I went to work, as scheduled. I still felt tired, but got through the morning okay. After lunch I was feeling more tired. I had only one patient scheduled in the entire afternoon, but figured we’d find some other folks for me to see as well, women who might walk in with problems or who might be late being seen because someone was running late or something. Well, the staff finally threw me out of the clinic, saying they could manage without me and that I should take my wife to a movie. Debbie even got MovieLine on the phone and found that there was a showing of “My Big Fat Greek Wedding” close by in a half hour. That’s what Kathy wanted to see, so I took the “advice” and left for the movie, which we both liked a lot, though I yawned quite a bit (out of fatigue, not boredom) during the show.

After the movie we went back by the clinic to pick up Kathy’s car and while there I went in to check on the results of my blood work. It still looks good. Most of the values are about what they were a couple of weeks ago. My platelets have dropped to modestly subnormal values (140,000) but there are still enough to clot when the need arises. Probably most importantly, my neutrophils are still adequate as well (you remember those guys, don’t you, the bacteria fighting white cells). My blood chemistry is mostly okay but my creatinine is creeping up, to about 1.4. This is a measure of how well your kidneys are functioning, and about 1.0 is normal for most people, with up to 1.3 being normal. So I’m just slightly high but that is not functionally significant. This could be partly from the chemo drugs, but I started a little high anyway. That could be from minor kidney damage from all the APCs and Fiorinal I’ve taken over the years, or the Motrin I‘ve been known to take in large quantities. In the past, up until about 12 years ago or so, Fiorinal contained a pain reliever known as phenacitin (which is the “P” in the old Army favorite pain killer, APCs, aspirin, phenacitin and caffeine). And when I was a child and young adult in the military, I got a lot of APCs. Well, phenacitin has been found to cause some kidney damage and has been taken out of all drugs, to my knowledge. Now you know all about phenacitin and my kidneys.

Today we went in for my appointment with my doc, Brian Koester. He went over my blood tests and did a brief exam, checking my throat for thrush (a yeast infection of the throat) and listening to my chest for signs of pneumocystis pneumonia (the pneumocystis organism isn‘t a problem for most normal folks). Immuno-compromised people, like those with HIV or on chemotherapy, are more likely than most folks to get these infections. I was clear for both these problems. I actually take antibiotics intermittently to prevent the pneumonia.

After I was checked, I asked Brian a few questions. Like, is my response to these drugs what he had expected. Answer; “Well, we don’t know, you’re the first patient we’ve had on this regimen. But the response is excellent, regardless.” And, what’s the long term plan, for when/if the disease returns, say, in a year or two. I’ve been looking at all the literature I can find on this disease, and it appears that I’m getting the “cutting edge, gold standard” treatment. From what I can find, there is no other treatment if this fails. I guess that is what Brian thinks, too. His answer was, “Well, there are a lot of things in development that we can look at for monoclonal antibody treatment, or protocols for a possible bone marrow transplant with unrelated matched marrow donations.” In other words, for now there is no follow-up treatment available. But, as they say, “It’s an exciting time to be a patient with CLL!”

So we went to the infusion room and my nurse was Marliss again, the German nurse from Heidelberg. Coincidentally, the guy right next to me, also getting Rituxan, had been in Heidelberg after the war. He was a patient in the 130th Station Hospital, where my dad worked in the early 1950s, but the guy had been there in the mid-1940s when General Patton was a patient there. He said he was on the floor above Patton and could hear him screaming. You may remember that Patton survived all the battles of WW II only to be involved in a traffic accident afterwards. He suffered a broken neck, as I recall, and died in the hospital.. He is buried in Luxembourg near the bodies of thousands of troops lost in the Battle of the Bulge.

We started my infusions at about 11:00 or so. I got my premedication of acetaminophen, cimetidine (Tagamet) and diphenhydramine (Benadryl) before the first drug, the Rituxan. This time I got 1000mg of the Rituxan (another $1500 worth, or so), more than last time since now there is less chance of a bad reaction, and it was run in faster, too. The pre-meds once again blasted me. I was just loopy and tired as soon as I could feel the drugs going in, so I got out my CD player, put in Kent’s collection of music for organ and orchestra, and closed my eyes. The music was perfect for the situation; very relaxing, gentle and, dare I say, mellow. That Kent is amazing; he managed to squeeze 78 1/2 minutes of music onto an 80 minute CD. That’s some pretty close planning, I must say, with an incredibly small amount of wasted disc space.

The Rituxan went in over about 2 1/2 hours, not as long as I had feared. I had no reactions to it either. Unfortunately, the guy behind me was having some reactions to his and his blood pressure kept dropping. They kept having to stop his infusion. He was there when I got there, and was still there when I left.

After we finished the Rituxan, most of which I slept through, we started the fludarabine and cytoxin at the same doses as last time. I took more premeds, the Anzemet and decadron, and started Kent’s disc again. The small studies that are available seem to show a better response rate of the leukemia when the drugs are given together. There appears to be some synergy between the Rituxan and the Fludara, so the effective rate is greater that what would be expected with either drug given alone in a sequential manner on subsequent days. It took about an hour to get those two drugs in, and then we went home. We’ll be giving them together for the next three cycles, though only on day one; days two and three I’ll get just the Fludara and Cytoxin. But, enough of the technical details.


I had intended to get this letter out yesterday evening, but had a headache and was pretty tired. My sinuses are acting up again. After my appointment in August, and all the treatments, I was doing pretty well. But as soon as I finished the treatments the problem came back. My sinus gets plugged up and starts hurting. Frequently this triggers a migraine headache. I tried all day yesterday to get the headache to go away, with all the simple meds, Tylenol, Excedrin, decongestants, etc. But, of course, when you have a migraine what you need most is sleep. I finally gave up and went to bed after taking some real migraine medicine, but my other “duties” interfered with my sleep. Remember, I have to drink and unload three liters of fluids in the twelve hours after my Fludara and Cytoxin. Since my creatinine is a bit up, I was real anxious to make sure that I kept my kidneys well hydrated and flushed out. So, I drank, and drank, and drank. And then I was up every hour or so all night doing my “homework” assignment. So much for sleep. I think I finally got to sleep after 3:00 AM after taking a Percocet for the headache. Oh, yeah, I also spilled a glass of water off the nightstand in the middle of the night, just to further interrupt my sleep, and Kathy’s too.

We went in again today for our noon appointment for today’s chemo infusion, just the Fludara and Cytoxin. These are quick now. We had a little trouble getting the IV in for some reason, however. Marliss started one, but when she tried to advance the catheter it hit a valve and wouldn’t go in. She tried to manipulate it past the valve but ended up infiltrating the IV with the fluids going in under my skin and not in the vein at all. She took the IV out, taped up the puncture and looked for somewhere else to try. Now, I don’t know if she was worried about having missed the IV or if she was intimidated for some reason ‘cause I’m a doc, but after putting on the tourniquet and identifying a suitable vein, she called over one of her colleagues to try to start the IV instead.

Now, most of you are not intimately acquainted with my veins, but I’ll have to say they are GREAT veins. Usually they bulge out even before the tourniquet is put on. The next nurse, Pat, moved the tourniquet up further on my arm and looked at my veins. There are several large veins, but one in the middle of my hand was down on its knees just begging to be pierced with a sharp object. But Pat wanted a challenge. She looked further, finally finding a vein that she could feel, but not see, over on the web near my thumb. Why, you ask? I don’t know. Maybe she wanted to save the really good veins for later in my cancer fighting career.

Anyway, she stuck the needle again and slowly advanced it until she finally found the vein she couldn’t see. But the tip of the needle was just barely in. It ran, though, and that was good enough for me. However, when infusing the drugs it ran quite slowly. I found that if I bent my wrist and held it “just so,” that it would run in quite nicely. So I held my wrist “just so” for about an hour and a half while the infusions went in. Meanwhile I listed to Phil Collins and read more of “The Mirth of America” and, yes, I laughed out loud several times. If you like humor, you should get this book. Thanks again to my sister Deb, who sent it to me.

I also had a couple of visitors during my appointment. One of my colleagues came by to see how I was doing, and Rita, a nurse who used to work in our clinic came by too. Between the visits and the book and music, the time was up in a hurry. We were ready to leave by about 1:30 or so.

So, one more infusion tomorrow, like today’s, and I’ll be finished with round three. Almost halfway done. We’re probably going to add a cycle of Rituxan alone after we finish the standard six cycles. We couldn’t use it at first because of my elevated white count. So I’ll likely be getting something through mid-January.

I didn’t mention something mildly important (to me) in my last letter. I told you that Lou and I had gone to a fish place for our birthdays. The specific reason is that they give you a discount if you are within a few days of your birthday. Well, the older you get, the more you save, at the rate of 1% per year of age. Since I was getting a 56% discount, I went for the usually $35 snow crab and lobster dinner. Great stuff.

Enough for now. I’ll be back in a few days to tell you how the drugs treated me this time around.

Until later,


Sunday, September 15, 2002

Let's Have A Party: Dave's (Other) Great Adventure in Vietnam.

Dave’s Great Adventure
Chapter 2, Verse 6
September 15, 2002
Let’s Have A Party

Once again I find myself with time to place my index fingers to the keyboard to record my thoughts and our recent activities surrounding my leukemia and its treatment. (I wish I could say I used all my fingers to do this but I’m just not that competent with keyboarding.)

I mentioned in my last letter that I wasn’t rebounding as fast after my last round of chemotherapy but that I was slowly feeling better. Well, I did keep slowly feeling better, but I never have really felt like I’ve gotten back to 100%. After the first cycle I felt close to normal after about 2-3 weeks. Not so this time; after three-plus weeks I’m still feeling tired, though I can get around and do just about everything I need to do. I do breathe pretty heavily just going up a flight of stairs. We went to church last Sunday and, as I did last month, I found myself sweating just with the effort of prolonged standing.

I was able to go back to work for a day last week (on 9/11) and happily was able to see a number of my patients. Debbie, my excellent nurse you’ve heard about, was able to pull folks out of the waiting room to see me, folks who in several cases had been scheduled to see other folks. I really enjoy being able to see some of my long-term patients and gals who are pregnant whom I’ve been caring for. And it’s a lot of fun being around the folks from work for a while, too. We have a lot of fun there. I worked pretty steadily during the morning and then was feeling tired by noon, but I kinda caught a second wind and finished the afternoon with no real problems. Kathy came in to the clinic at noon so I could have lunch there with her and not have to expend the effort going home for lunch as I usually do. Isn’t she great! I’m scheduled to work again next Monday, too, the day before I start round three.

When Kathy came home from lunch at the clinic that day she found the lawn being mowed. But it wasn’t by our neighbor Tom, whom I’ve mentioned. It was by his wife, April! I really feel a bit guilty that I was well enough to go to work yet April came over to mow my lawn!

I’m starting to think that the effects of the chemotherapy, though somewhat predictable, are going to be a bit cumulative, and I may find myself feeling more tired for longer periods with each cycle. I spoke to a colleague last night, whose mother-in-law had Rituxan for a bowel lymphoma (with excellent results) and he said that she got progressively more tired with each cycle. If I follow that pattern, it may be difficult to predict in advance if I’ll be able to work in the clinic after each cycle. I need to be able to give the staff and patients a few weeks lead time to make it worthwhile going in.

Hey, I contributed to the voluntary Moron Tax for the Mathematically Impaired last week and bought a Lotto ticket. Guess what! I won $38! That’s more than I’ve ever gotten before. Now I can move up my retirement date.

Friday night, on Friday the Thirteenth, Kathy and I had our friends from the clinic, the hospital and other social connections, over for the party we mentioned. For a while I wasn’t sure how I’d do with the party. I woke up at about 5:00 AM with a migraine and finally got back to sleep, but when I woke again about nine I didn’t feel well. Besides being very tired, my stomach was unsettled, like migraines, and the meds you take to combat them, can cause. I dragged through the day, trying to rest when I could, between doing the things we needed to do to get ready. Finally I napped for about an hour until five, when I got up to go get several bags of ice. When I got back, we already had a couple of early arrivals, Joan and Sandy, who helped us set up. After finalizing things, I changed clothes for the party and started feeling a lot better, fortunately.

I called the Party “Stayin’ Alive” because of two themes; one, I am fighting the battle, literally, of my life, with my leukemia, plus I wanted to show the story of my Vietnam experience to someone outside the family after all these years, another time when I managed to “stay alive.” To play the part, I wore my combat uniform from Vietnam for the party, the one I last wore as I stepped off the plane from Vietnam in 1971. It still fit (though it was perhaps a bit snug). We also put on this party to try to pay back, in some small way, so many of the folks who have been so wonderful to us during the last several months, bringing us food, driving us around, taking care of me in the clinic and so much more.

We really had a lot of fun. We also had quite a crowd. There was close to a 100% RSVP rate, so we ended up with about 37 guests in the house. We used a lot of different places to seat folks, but it worked well. We had the food catered by my favorite local barbeque place and they provided the meats, cole slaw (“kohlensalat”), potato salad, beans, barbeque sauce, pickles, dessert and more. Quite a spread! And several of our guests brought stuff, too, including wine, some German and Texas beer (Shiner Bock, for you folks down in the Lone Star state), several great desserts and more. Plus, Sheri Patterson, also expert in pirating CDs, downloaded the Saturday Night Fever music from the internet and between dinner and dessert we played the CD, with “Stayin’ Alive” blaring from my ancient Kenwood speakers. A bunch of the gals started dancing to the music in ‘70s disco style. There were no guys, so I joined them. I rapidly exhausted myself and had to retire from the dance fest.

It was during the dinner activities that the folks from the clinic had a surprise birthday party for me, with my favorite pies, pecan and key lime. They knew I would not be around nor be feeling well enough on my birthday (on the 25th) for any kind of celebration (I’ll again be at my nadir time [my “Ralph?”]) so they just moved up the festivities. Great folks, those guys and (mostly) the gals I work with at the clinic!

After the meal we went downstairs where we packed into the family area so I could show my slides of my activities in Vietnam. I called the presentation “Dave’s (Other) Great Adventure.” We got started a little late, and the “show” lasted a little longer than expected, so we didn’t finish until about 10:30 or so, but not too many folks went to sleep or had to leave. I really appreciated having the opportunity to show my slides and tell my story to a non-family audience. I would like to think that most folks found it interesting, and I honestly think most did, but I have to keep in mind that probably some folks didn’t leave just out of courtesy. At any rate, I was grateful to be able to tell folks what it was like in Vietnam, at least for me, though I have to admit that I was pretty tired by the time it was over.

After the party was over, our guests cleaned the place up for us! All the food was put away, the counters cleaned, trash collected, utensils washed and the rental chairs loaded back in the 4-Runner. What great friends we have.

So, on Saturday Kathy and I took our rented chairs back before nine, as we were contracted to do, and then planned to go to a movie. But we fell asleep on the couch. We did nothing at all, all day long. We were just worn out from the preparation and activities surrounding the party. I’m so happy we did it and that it worked out so well.

Today we made it to church and then had leftover barbeque for lunch. I never mind that. Then I did a few chores around the house that needed to be done before I started my next round of chemotherapy. I knew that if I didn’t get the trimming done in the yard today that it wouldn’t get done for weeks.

Then I watched the Broncos football game. Hey, they looked pretty good, beating the San Francisco 49ers (take that, Mike Koetzle!). We went out to eat with friends tonight, in another celebration of birthdays since I won’t feel up to it in a couple of weeks, and Lou’s birthday (Joan’s husband) was a week ago. We celebrated together.

I’ll be working again tomorrow, and then I get ready for round three on Tuesday! This cycle will be different again; so far each round has been somewhat different. The first month I got only the fludarabine and cytoxin. Then, for round two, I got the Rituxan on day one and the others on days two through four. This time, and for the rest of the cycles, I’ll be getting all three drugs on day one and then the other two drugs, the fludarabine and cytoxin, on days two and three. The course of therapy will be only three days, instead of four, like last month, but the first day will really be long. I’ll also be getting another blood count tomorrow to see what my counts are before we start the next cycle. I’m very curious about what they’ll be.

I guess that’s about all that may be of interest from here for this letter. I know from my experience last month that the stuff will make me feel bad soon after it starts on Tuesday but I’ll try to get a letter out next week just to let all my friends and relatives know that I’m still okay.

Until then,


Saturday, September 7, 2002

Feeling better, and lots of feedback.

Dave’s Great Adventure
Chapter 2, Verse 5
September 7, 2002
Getting Better

I haven’t been keeping my journal/letters up to date over the last week. We had company and so I didn’t spend much time at the computer. Our daughter Jennifer and her family, and our elder son, Jonathan, came for a visit. It was wonderful to have all of them in the house, but especially wonderful was the opportunity to see our granddaughters again! As I keep telling people, they are sooo cute! Kirsten is 2 1/2 and Brooke is 4 months. They are such happy kids; even Brooke, as young as she is, spends most of her waking hours smiling and laughing. Kirsten had a great time helping Grandma water her flowers, playing in our landscape rocks and feeding the jays (einer Art Vogel) that are always hanging around our deck looking for a handout. We were able to spend a day at the zoo with the girls and during the time that everybody was here, before Jon had to go back to El Paso, we had a tasty cookout on the deck; filets and lobster tails! We even got most of the clan up to our favorite Mexican place for a breakfast one morning.

I’m not bouncing back from this round of chemicals as fast as I did the first time. I guess that would make sense, however, as I got more “stuff” this time. I still don’t feel unwell, I just have a lingering fatigue and weakness. Still, I can do most of the things I want to do, within reason. The jaunt to the zoo, though not at all stressful, wore me out. But it was worth it showing Kirsten the zoo animals.

Another side effect of the chemotherapy is back. I developed the same rash as the one I had last month but this time it developed sooner, during my second week. It hasn’t caused me any problems, though, so I pretty much ignore it. But if my skin is being affected more this time, I guess that means my hair will be too, since it is a “skin appendage.” The rate of my hair loss, as unscientifically measured in the bathtub, seems to have slowed for now, but I expect it to pick up again in the next week or two.

I’ve gotten a lot of wonderful feedback and messages from many of you over the past weeks, and I appreciate your taking the time to send me your thoughts. My “little brother” Dan, in Grapevine (you know, the one who’s pirating the CDs), asked if I was glad to be on the “big stuff” (the Rituxan). I am, of course, very happy to be on the Rituxan after a month’s delay because of my too high white cell count in July. If there is a chance for a cure of this disease, it will likely be with the Rituxan or similar drugs, and as I mentioned a few weeks ago, there are dozens of similar drugs in development at the present. Charlotte Finley, a very distant cousin up in Iowa, whom I’ve never met, sent Kathy and me a very nice anniversary e-card last month. It was just perfect, Charlotte! My cousin Wanda Drayton up in Illinois called my verse that I named “Reality,” “...a very touching and beautiful love story.” Along the same lines, Kathy Roberts out in Atlanta told us that we are so rich in love. “Rich doesn’t come with dollar signs,” she said. She also liked the way I try to find the humor in whatever situation I’m in. My other brother Doug, out in South Carolina (in Rock Hill, if you know where that is) said I was brave to write about my crying. It is a different view of me than most folks have. Crying hasn’t come easily to me in the past; I tend to internalize most of my feelings. I don’t think my kids have ever seen me cry. But I don’t feel particularly brave having written about my crying, just completely honest about what I’m going through, and what Kathy is going through with me. And Jane Forte, another friend up in Iowa, told me not to give up hope. Her husband was supposed to have died about 20 years ago after a series of seizures, but is still alive and, as they say, kicking, today. I really haven’t completely given up hope about this disease, but I want to be realistic too. Most folks do not outlive this disease. I’ll be very happy if, say 10 or 20 years from now, I can find out that I was wrong in my thoughts about what my chances are/were.

And I’m also getting some great letters from our friend, Claudia Koetzle, in Germany. Claudia is the granddaughter of Marta Galla, an incredibly wonderful German woman who was my “nanny” back when I was an evil little child in Heidelberg, in the early 1950s. I used to throw rocks through the windows of a nearby hot house, tortured our cat, and once threw a handful of coal dust in Marta’s face when she tried to get me out of the coal room to clean me up. Marta’s three girls, Ursula, Annemarie and Hilde, also participated in trying to keep me out of trouble, a large task to be sure. I kept in touch with Marta over the years and visited with her many, many times while I lived in Germany. Marta unfortunately died of an abdominal sarcoma, a particularly lethal and usually fast growing cancer, about four years ago, but her children and I have kept in touch. Claudia, Annemarie’s daughter, has been receiving my “DGA” messages and then translates them for her family, which is quite a task, considering all the idiomatic English and the slang terms I have been tossing into my notes. A copy has been going to her aunt Ursula, who works in a cancer clinic in Heidelberg. Ursula sent me a very nice letter with a message about people she knows who have survived leukemia, including the Spanish Tenor, Jose Carreras. She and the family also sent a video “tour” of Heidelberg which brings back lots of wonderful memories of our times there.

By the way, Claudia and her husband, Michael, are fans of American football and follow the World Football League games in Europe. Their favorite team is the Frankfurt Galaxy, but Mike also has a special place in his heart for the San Francisco ‘49ers. I can’t convince him that the Broncos are a better team! I also continue to get cards from my friends at the clinic, including Joan’s daily “mantra” and almost daily cards and/or messages from my nurse, Debbie.

You may remember that after I fell out of the hammock, onto my head, while listening to Beethoven’s Fifth, I suggested that maybe my friend Kent could suggest some more soothing organ and orchestra music for me. Well, he did better than suggest music. My long-time friend (we met in high school in about 1963, in Germany), who lives down in Lubbock, created a CD for me that he titled, ”One Quiet Piece After Another” -or- “Organ and Orchestra Music for the Hammock-Bound.” Perhaps that should read, “...for the Hammock-Impaired,“ since I had trouble actually staying in the damned thing. Kent creates CDs professionally, recording local school bands and orchestras and church choirs and selling the resultant works to the participants.

Since I started my chemotherapy my next door neighbor, Tom Redd, has been just incredibly helpful. I never asked him for help, but he has come over on a regular basis when the lawn needs attention and mows it for me. Yesterday he came over and asked if I could use a couple of tickets to the Colorado Rockies baseball game that was to be played last night. I was still feeling pretty tired, but figured that I should be able to just sit and watch a game. Hey, we hadn’t been to a Rockies game in a few years. So we went last night and had a great surprise. Those tickets were the best seats we’ll EVER have to any sports event. They were in the front row right behind the Rockies’ dugout, probably about 50 feet from home plate. (Note to Claudia: the dugout is the place the players sit when they aren’t on the field) I did okay at the game, but tired very rapidly and significantly while climbing the stairs to leave. Oh yeah, the Rockies actually won the game.

Kathy and I went to funeral today. Much like the situation I mentioned with my friend Jim Brettell in a recent letter, a colleague suddenly lost his wife late last week. Jim Smith is the director of the Ob/Gyn training program at Saint Joseph’s Hospital here in Denver. He and his wife have a special needs teenage daughter. Jim came home from work last Wednesday and found his wife dead. It was so sad. Their daughter was with her, but hadn’t comprehended what had happened to her mother. Jim’s wife, Angie, was only 44 years old and was found to have had a heart attack. My God, 44 year old women aren’t supposed to have heart attacks! This again reinforces just how fragile life is and how little control we really have over our destinies. We think we do, but we really don’t.

I think that is all the news from Highlands Ranch for now. As I slowly get stronger, I’m looking forward to getting back to work for a couple of days during the next ten days before my third round of chemotherapy starts on September 17th. I also need to help get ready for the dinner we’re hosting next Friday. I plan on being 100% by then, and we’re having, it turns out, about 30 folks over. We’re having it catered, however, so Kathy won’t have to do any cooking. While I have a captive audience I’m going to show my pictures of my time in Vietnam, slides that very few people outside my family have seen.

Until the next time,