A Long List of Side Effects

Dave’s Great Adventure
Chapter 3, Verse 2
September 21, 2002
Fuzzy...faster!

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....

Dave

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