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,
Dave
Sunday, September 15, 2002
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,
Dave
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,
Dave
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 NurseZone.com 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,
Dave
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 NurseZone.com 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,
Dave
Tuesday, August 27, 2002
Wiped out! And hammock adventures!
Dave’s Great Adventure
Chapter 2, Verse 3
August 27, 2002
Wipeout!
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, wondering...how long?...how 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,
Dave
“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.”
--Unknown
(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.)
Chapter 2, Verse 3
August 27, 2002
Wipeout!
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, wondering...how long?...how 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,
Dave
“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.”
--Unknown
(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 Amazon.com 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,
Dave
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.
Dave
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 Amazon.com 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,
Dave
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.
Dave
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.
Dave
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.
Dave
Sunday, August 18, 2002
The Reality of Leukemia; Fear and Sorrow
Dave’s Great Adventure
Chapter 1, Verse 10
Reality
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,
Dave
Chapter 1, Verse 10
Reality
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,
Dave
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