Dave’s Great Adventure
Chapter 4, Verse 3
October 31, 2002
It’s limbo time....
My apologies to anyone younger than 30 or older than 60 who has no idea what the limbo is. It was (is?) a “dance” that was popular in the 60s (coming over from the Caribbean islands) during which people tried to get under a stick that was progressively lowered after each try. The DJ at the dance would say, over and over, “How low can you go?”
That’s the question we’re asking right now. I had a blood count done at my nadir, last Friday (five days ago, now), and got the results back Tuesday. My counts, which had been doing okay, have sort of fallen off the edge of a cliff. Actually, my red cell count is still very normal, but my platelets are down to 126,000. That’s sub-normal, but not dangerous. However, my white cell count is concerning now. It has been in the 2,500-3,000 range, low but adequate. Suddenly, it’s only 1,100. And my neutrophils, the “good guys,” have dropped to 100! That’s damned near zero, the way I see it. It looks like my marrow, where the cells are made, is surrendering to the chemotherapy, having been blasted so many times in the last four months! So, because my white counts are so very, very low, Kathy has me quarantined in the house to keep me away from crowds. I’m very susceptible to just about any kind of bacteria or viruses at this point. I also cancelled just about all the work I had been able to arrange in the clinic for the next couple of months. You know, sick people tend to congregate there! I probably shouldn’t spend much time there if I can avoid it.
I don’t really know if I should travel. I’ve called my doc’s personal message number a little while ago and asked about that but haven’t gotten an answer yet. Since I’m still in even more of a nadir, or low point, than usual, I still can’t eat fresh vegetables, fruits, etc. The nurse I talked to at the Oncology clinic also said I need to practice good hand washing, take my temperature if I think I have any signs of a fever, and avoid sex! Well, that wasn’t much of an issue anyway. I guess she’s telling me that sex really is “dirty!”
Hey, I found out where the term “hat trick” came from. None of the sports savvy members of my family came up with any information, but Kathy’s sister Sharon in Bozeman, Montana and her uncle Jim Griffith in Arizona both sent me the derivation of the term. We all knew that is was some sort of ice hockey term for getting three goals in one game. Well, it turns out that before it was an ice hockey term, it was a cricket term in England. It dates from about 1877 and was used to describe taking three wickets off with three successive bowls (whatever that means). This entitled the bowler to receive a hat from his cricket club to commemorate the achievement. By 1909 it was being used in other sports as well to describe getting three of anything in one game. So, there you have it!
So where were you in 1988? Back when my pills were new. Natalie Campos, our son Jon’s girlfriend, wrote in to say that in 1988, when our eldest was starting college, she was starting middle school! I guess the age difference would have made quite a difference then, but means nothing now. By the way, Natalie, my neutrophils are still waiting for those jokes! They didn’t get here in time. (I’m making reference to a line from several DGAs ago in which Natalie had written that she’d tell jokes to my neutrophils since they were “depressed.”)
Our son-in-law Dan wrote to me to suggest that if I in fact elected to die in our home that Kathy could tell prospective buyers that there was a friendly Gyne (Frauenarzt) ghost in the house who would do pap smears for the new inhabitants! Hmmm, I wonder if that would make them feel better or worse!
Our friend Claudia Koetzle in Germany, who lives in the little town of Dettenheim, not too far from Karlsruhe, wrote another nice letter after she and her SF 49ers-loving husband Mike got back from a vacation in southern France. She had written in several months ago after I trashed (schmaehen) Las Vegas to add her comments. She and Mike have been to America several times to visit our wonderful national parks. They’ve probably seen more of them that we have. Anyway, they visited Las Vegas a few years ago and she had to admit that they had walked around taking pictures of the outrageous hotels. The way she so accurately put it, it was amazing to see what could be done in the absence of any common sense and against all obstacles! As an example, all the fountains in the middle of the desert!
I just got a call back from my doc. He’s not too worried about my low counts. He says I can still travel, and that I should get another blood count tomorrow. If it’s still very low, we can try some stuff called Neupogen, a medicine that boosts the production of neutrophils, before I travel.
Well, today is Halloween. There is snow on the ground here as there seems to be just about every Halloween since we moved here. All the little kids who come around for candy are always so cold that most of the Trick-or-Treat-ing is over by about 7 PM or so. Speaking of Halloween, Claudia notes that it’s getting to be a big thing in Germany too, in recent years. Halloween is an American tradition that adults are adopting, as all American are aware. Well, the Americans in Germany brought the tradition to Germany and we often had German kids coming to our door looking for candy on Halloween. In fact, the Americans had a great big Halloween party at the Frankenstein castle in Darmstadt (south of Frankfurt) for many years until it became too, too popular and unmanageable. Well, now Claudia says it’s being promoted by the folks who manufacture costumes and decorations and folks get together in their Halloween garb, drink too much and do stupid things. Sounds like an American tradition, all right!
Kathy just yelled for me to look out the back window. There was a big, beautiful coyote (Steppenwolf) in our back yard. It looked like it was trying to find some rabbits or birds for lunch. In the absence of wild fare, they also start looking for dogs and cats left outside. We lose a lot of small animals in the neighborhood to the coyotes, especially to people new to the neighborhood who don’t realize the dangers of leaving their pets outside.
I guess that is all for now. We will be having company in the house for the next three days and then we’ll hopefully be going to Hawaii, so I probably won’t get another update out until after about November 11th or so.
Bye for now....
Dave
Thursday, October 31, 2002
Sunday, October 27, 2002
Nadir Time and Old Pills
Dave’s Great Adventure
Chapter 4, Verse 2
October 26, 2002
Nadir Time
Well, I’m in my nadir now...you know, my Ralph (Nader), a pun so stretched that even my English speaking correspondents didn’t know what I was talking about. My nadir is when my blood counts are probably at their lowest in between rounds of chemotherapy. Curiously, I reach my nadir just about the time I start to feel reasonably well after the preceding round of drugs. That’s kinda perverse. I get stuck in the house for days at a time after the chemo, because I feel so lousy, but then when I start feeling better, I’m at my immunologically weakest point and am most at risk from colds or other environmental pathogens (bad germs and viruses). So I really can’t safely mix with crowds. And this is also the time when I can’t eat fresh fruits and vegetables unless they can be scrubbed or peeled, so my diet is a bit limited as well. Oh well, I can stand it.
After the last round of chemo I was, as usual, wiped out for a number of days. Since I can’t go out on the hammock any more (it’s been put away for the winter) I spend a lot of time on the couch in the family room, taking up space and limiting Kathy’s ability to use the room for watching TV, etc. The worst days are usually the Friday through Monday or Tuesday following the drugs. That really impacts on my ability to follow the football games on Sunday! I actually dozed through the first quarter of the Broncos’ game last Sunday, but was awake enough to see them win in overtime against the hated Kansas City Chiefs. Kathy once again brought me some hot wings (Hahnchen Flugel mit pikante Soss!) to eat during the game since that is the time my mouth is most “coated” and less sensitive to mild flavors.
As I recover from each round of chemo I frequently get fooled into thinking I’m stronger than I really am. Many times I’ve gotten up and felt just great, only to find that I’m still pretty weak once I try to get around the house and do something. This happened again last Tuesday but with another, new problem thrown in for good measure.
I got up about 9:00 AM, which is really somewhat early for being just five days out from the last day of infusions. I took a bath, and while in the tub was feeling good; not tired, weak, etc. After I got out of the tub I spent about a half hour dipping water out of the tub with the watering can and watering the plants all over the house (we‘re still in a drought situation here in Denver). This required going up and down the stairs several times. I got a little tired, but nothing too bad. But now my head was hurting some, so I took my usual headache medications, and the headache slowly subsided.
Before lunch my stomach started cramping a little, nothing really bad, but enough to bother me. This has never happened to me before during my previous rounds of chemo. I thought that if I just got some food into it I’d feel better. I felt like getting out of the house by then anyway, since I’d been cooped up for several days, so we went out to a local Chinese food place, and I got a dish of chicken curry. Bad mistake. The cramps got worse and caused a lot of gas buildup! When I got home I started looking for meds to try to make me feel better, but the usual stuff, Mylanta, etc., didn’t do much good. The mild cramps continued through the afternoon and into the evening, through a fairly bland dinner. We went to bed about 10:00 PM and I was still cramping, but I didn’t know from what. The cramps kept up through the night and I could not sleep. In desperation I rummaged through the medicine cabinet to see what I could find. I came across a bottle of Donnatol! Just what I needed! Donnatol is a combination of belladonna alkaloids and phenobarbital, and is specifically made to stop abdominal cramping. The bottle said it had been dispensed in 1988! Really, 1988!
Where were you in 1988? In 1988 I was driving a snazzy green Porsche, our eldest had just started college in El Paso and we were living in Stuttgart, Germany. Ronald Reagan was president and he still knew his name. We’d never heard of Osama bin Laden or al-Queda, and for that matter, we’d never heard of Bill Clinton (God, to be able to go back in time!). These pills had made several moves with us, for some reason, from Germany to El Paso and then to Colorado.
I looked at the pills and looked at the date on the bottle. The pills looked okay, I mean, they weren’t brown and crumbly or anything. I looked at them again, looked at the date on the bottle, and then looked at the time. It was four in the morning and my belly was hurting. I took the pills. They worked and I finally got to sleep.
I guess I really ought to replace those pills, huh?
You know, I guess I must be doing okay. Whenever I see friends or colleagues whom I haven’t seen in a while, I always get the same greeting: They always say “You look GOOD!” almost in surprise. I think most folks that go through chemo lose a lot of weight and hair, but since I’ve maintained my weight with a diligent diet of frozen custard, hot wings and nachos, and since most of my hair is still in place, I suppose I don’t look like the average chemo patient. And that’s okay.
Last Friday evening, just as I was getting into my really low point, some old friends came through town. Alta Bailey and her daughter Kristen came through Denver en route to Utah where they were going to visit Moab, the Arches and more. (Our friends from Germany, the Koetzles, have been there and have been encouraging us to go too, but we haven’t made the short trip out there yet.) Anyway, Alta’s husband, Don, and I were first cousins, once removed, and were the family’s genealogists. We spent a lot of time digging up family roots and traipsing through cemeteries looking at old gravestones, filling out the family tree. Sadly, Don died a few years ago of pulmonary fibrosis but we’ve stayed in touch with Alta. We went over to their motel to visit but after about ninety minutes I was just too tired to be able to follow the conversations, so we left and came back home. It was nice to see them however, even if for just a short time.
In just my most recent letter I was thinking about end-of-life scenarios and wondering what I should do. I mentioned, briefly, “Perhaps a hospice?” Well, wouldn’t you know, two days later I got a letter in the mail from the Denver Hospice Association asking for donations. Man, what a network they must have!
I want everyone to know that I’m STILL getting cards everyday from my friends at work. And when I can’t get a card because of a weekend or holiday, our friends the Henefelds make sure I get an e-card. Joan Henefeld is sticking to her “mantra” of sending daily good thoughts and wishes and my wonderful nurse, Debbie, is right behind her, even though she’s got five kids to care for. And then I get a card or two every week from other folks too. I have the absolute BEST co-workers.
I was going to try to get in to the clinic to work a couple of days next week but I’m having trouble doing so again. They may not be able to accommodate me on the days I could work, because they don’t have enough nursing help (male gynecologists are labor intensive as we require an attendant, or “chaperone“ for just about everything we do), so I probably won’t be able to work again next month. Oh well, I’ll just burn a couple more sick days.
So, until later, I’ll put this letter “to bed” and get it into your e-mail in basket!
Dave
Chapter 4, Verse 2
October 26, 2002
Nadir Time
Well, I’m in my nadir now...you know, my Ralph (Nader), a pun so stretched that even my English speaking correspondents didn’t know what I was talking about. My nadir is when my blood counts are probably at their lowest in between rounds of chemotherapy. Curiously, I reach my nadir just about the time I start to feel reasonably well after the preceding round of drugs. That’s kinda perverse. I get stuck in the house for days at a time after the chemo, because I feel so lousy, but then when I start feeling better, I’m at my immunologically weakest point and am most at risk from colds or other environmental pathogens (bad germs and viruses). So I really can’t safely mix with crowds. And this is also the time when I can’t eat fresh fruits and vegetables unless they can be scrubbed or peeled, so my diet is a bit limited as well. Oh well, I can stand it.
After the last round of chemo I was, as usual, wiped out for a number of days. Since I can’t go out on the hammock any more (it’s been put away for the winter) I spend a lot of time on the couch in the family room, taking up space and limiting Kathy’s ability to use the room for watching TV, etc. The worst days are usually the Friday through Monday or Tuesday following the drugs. That really impacts on my ability to follow the football games on Sunday! I actually dozed through the first quarter of the Broncos’ game last Sunday, but was awake enough to see them win in overtime against the hated Kansas City Chiefs. Kathy once again brought me some hot wings (Hahnchen Flugel mit pikante Soss!) to eat during the game since that is the time my mouth is most “coated” and less sensitive to mild flavors.
As I recover from each round of chemo I frequently get fooled into thinking I’m stronger than I really am. Many times I’ve gotten up and felt just great, only to find that I’m still pretty weak once I try to get around the house and do something. This happened again last Tuesday but with another, new problem thrown in for good measure.
I got up about 9:00 AM, which is really somewhat early for being just five days out from the last day of infusions. I took a bath, and while in the tub was feeling good; not tired, weak, etc. After I got out of the tub I spent about a half hour dipping water out of the tub with the watering can and watering the plants all over the house (we‘re still in a drought situation here in Denver). This required going up and down the stairs several times. I got a little tired, but nothing too bad. But now my head was hurting some, so I took my usual headache medications, and the headache slowly subsided.
Before lunch my stomach started cramping a little, nothing really bad, but enough to bother me. This has never happened to me before during my previous rounds of chemo. I thought that if I just got some food into it I’d feel better. I felt like getting out of the house by then anyway, since I’d been cooped up for several days, so we went out to a local Chinese food place, and I got a dish of chicken curry. Bad mistake. The cramps got worse and caused a lot of gas buildup! When I got home I started looking for meds to try to make me feel better, but the usual stuff, Mylanta, etc., didn’t do much good. The mild cramps continued through the afternoon and into the evening, through a fairly bland dinner. We went to bed about 10:00 PM and I was still cramping, but I didn’t know from what. The cramps kept up through the night and I could not sleep. In desperation I rummaged through the medicine cabinet to see what I could find. I came across a bottle of Donnatol! Just what I needed! Donnatol is a combination of belladonna alkaloids and phenobarbital, and is specifically made to stop abdominal cramping. The bottle said it had been dispensed in 1988! Really, 1988!
Where were you in 1988? In 1988 I was driving a snazzy green Porsche, our eldest had just started college in El Paso and we were living in Stuttgart, Germany. Ronald Reagan was president and he still knew his name. We’d never heard of Osama bin Laden or al-Queda, and for that matter, we’d never heard of Bill Clinton (God, to be able to go back in time!). These pills had made several moves with us, for some reason, from Germany to El Paso and then to Colorado.
I looked at the pills and looked at the date on the bottle. The pills looked okay, I mean, they weren’t brown and crumbly or anything. I looked at them again, looked at the date on the bottle, and then looked at the time. It was four in the morning and my belly was hurting. I took the pills. They worked and I finally got to sleep.
I guess I really ought to replace those pills, huh?
You know, I guess I must be doing okay. Whenever I see friends or colleagues whom I haven’t seen in a while, I always get the same greeting: They always say “You look GOOD!” almost in surprise. I think most folks that go through chemo lose a lot of weight and hair, but since I’ve maintained my weight with a diligent diet of frozen custard, hot wings and nachos, and since most of my hair is still in place, I suppose I don’t look like the average chemo patient. And that’s okay.
Last Friday evening, just as I was getting into my really low point, some old friends came through town. Alta Bailey and her daughter Kristen came through Denver en route to Utah where they were going to visit Moab, the Arches and more. (Our friends from Germany, the Koetzles, have been there and have been encouraging us to go too, but we haven’t made the short trip out there yet.) Anyway, Alta’s husband, Don, and I were first cousins, once removed, and were the family’s genealogists. We spent a lot of time digging up family roots and traipsing through cemeteries looking at old gravestones, filling out the family tree. Sadly, Don died a few years ago of pulmonary fibrosis but we’ve stayed in touch with Alta. We went over to their motel to visit but after about ninety minutes I was just too tired to be able to follow the conversations, so we left and came back home. It was nice to see them however, even if for just a short time.
In just my most recent letter I was thinking about end-of-life scenarios and wondering what I should do. I mentioned, briefly, “Perhaps a hospice?” Well, wouldn’t you know, two days later I got a letter in the mail from the Denver Hospice Association asking for donations. Man, what a network they must have!
I want everyone to know that I’m STILL getting cards everyday from my friends at work. And when I can’t get a card because of a weekend or holiday, our friends the Henefelds make sure I get an e-card. Joan Henefeld is sticking to her “mantra” of sending daily good thoughts and wishes and my wonderful nurse, Debbie, is right behind her, even though she’s got five kids to care for. And then I get a card or two every week from other folks too. I have the absolute BEST co-workers.
I was going to try to get in to the clinic to work a couple of days next week but I’m having trouble doing so again. They may not be able to accommodate me on the days I could work, because they don’t have enough nursing help (male gynecologists are labor intensive as we require an attendant, or “chaperone“ for just about everything we do), so I probably won’t be able to work again next month. Oh well, I’ll just burn a couple more sick days.
So, until later, I’ll put this letter “to bed” and get it into your e-mail in basket!
Dave
Wednesday, October 23, 2002
Chapter4 Four; Planning the Rest of My Life
Dave’s Great Adventure
Chapter 4, Verse 1
October 17, 2002
About Halfway...
I just sent out a DGA today that I started last week, but I thought I’d start the next one before I get too fuzzy. There is a phenomenon called “chemo brain” (really!) that affects your memory, long and short term, I guess. I just thought I’d tell you about the last few days of chemo while it’s fresh in my mind.
First, the good news about my blood counts. I had more blood drawn last Monday, four days ago, as we always do before starting a round of drugs. As before, my good guys are holding their own. My red cells and platelets are still normal. My white count is up a little bit to about 3,100, but the increase is almost entirely in greater numbers of neutrophils, the bacteria fighters, and not the lymphocytes, which can be the bad cells in this case. All the bad guys, the leukemic cells, are lymphocytes, but not all lymphocytes are bad guys, of course. But for now, the count of lymphs is staying stable and therefore my percentage of neutrophils is edging up toward normal. For those of you interested in medical minutia, we normally have about 85% or so of our white cells as neutrophils and about 10% or so that are lymphs. When I started my therapy, I had about the opposite ratios; about 89% lymphs and only about 10% neutrophils (if you’re wondering, the missing percentages are made up of other white cells called eosinophils, monocytes, basophils and a few other odds and ends). My neutrophils are now up to about 60% of the total white cells (though their total numbers are still depressed to low but normal range numbers; Natalie, they need more jokes!).
So, we started Round Four. This about marks the halfway point for me, in this chemo stuff. I’ve completed and recovered from three rounds so far and have to recover from three more plus a round, I guess, of Rituxan alone, though I’m going to try to talk my doc into giving me another full round of chemo in January if my marrow is still in good shape. I want to blast the disease as hard as I can this first time, and hopefully not give it a chance to come back!
When I went in for the drugs, I was seated next to my partner, Laurel, who has the breast cancer that has spread to her lungs and liver. She seems in amazingly good spirits and was writing thank you notes to folks who had brought food over to the house when she had to go in for more therapy. She actually was in the hospital for a day when they found the disease had spread. She was having trouble breathing because of lymph node involvement. This has gotten better since her first round of the new chemotherapy she’s getting, Taxitir, I believe. It’s a synthetic form of the older drug, Taxol, which is derived from yew trees. Laurel and I talked for a while until they gave me my premedication, at which point I turned on the CD player and went to sleep.
This turned out to be the longest course of chemo yet. For whatever reason, the Rituxan (another $1500 worth) took a long time to infuse, about three hours or more. And that was after the infusion of the premedications, and before the fludarabine and cytoxan went in. It wasn’t all that bad for me, I was in a recliner (though it is an industrial strength hospital recliner, not a real soft home-style recliner). Kathy, on the other hand, spent the whole time watching me sleep through the infusions in a straight back hospital chair. She had a sore butt and a headache before it was all over. She helped pass the time by reading and doing cross-stitch on a quilt we’re doing for Brooke, our latest granddaughter.
The last couple of days of chemo have been no problem. The IVs have gone in my veins easily and the cytoxan and fludarabine go in over about an hour. No sweat! I have been feeling a little sleepy over the last day or so as the chemo effect sneaks up on me so I pretty much slept through the short infusion today, listening again to Kent’s “One Quiet Piece After Another.”
I have to say, as much as I like the staff at the Hematology-Oncology clinic, there have been a lot of potential medication errors, with me getting incorrect doses of pre-meds, until I ask why, with the nurses asking ME what I am supposed to be getting, asking ME why the dose of Rituxan is changing, etc. We’re using a very new regimen of drugs, but the protocol is in my chart. Maybe they’re asking me these questions because I’m a doc, rather than asking my doc, because they expect me to know (as I do) but if they ask these questions of an average 75 year old leukemic, the patient likely would have no idea what was going on. Yesterday I got shorted on my steroid pre-meds. That’s not the first time my pre-meds have been wrong. But I was only short 4 mg of the 16mg of dexamethasone I was supposed to get so I didn’t worry about it.
Today after my infusions, I had an appointment at the eye doc’s office. I hadn’t had an eye exam in three years! She went over my eyes real well and I’m happy to report that at least my eyes are in good working order. She changed my contacts prescription and now I’m cleared for more astronomy nights!
I recently heard from our friend Cindy (Chitwood) Hunt, in El Paso, who’s been a friend of the family since she and our daughter went to junior high school together. She was commiserating with me on having to go to the bathroom so often during my chemo treatments. You see, she understands what it’s like. Cindy suffers from a “rare medical condition” called TWB. It is a hardship for people like Cindy who have Teeny Weeny Bladder as they have to pee all the time. We know! Cindy came to Europe to visit with us a couple of times while we were in Stuttgart. We went camping across England and Scotland with Cindy and made a lot of potty breaks! Now she thinks I should have been more sympathetic.
October 18
We also heard from Jane Forte up in Iowa who thinks it’s just “too bad” that we have to go all the way to Maui for an educational meeting. Actually, that wasn’t my first choice at all. But I needed to get some Continuing Medical Education (CME) credits before the end of the year. Like all professionals, whether they be lawyers, teachers, nurses or physical therapists, I am required to get continuing education each year to maintain my license to practice. I had to cancel a meeting we had planned for last March when Kathy and I were both sick, so I was scouring the web sites listing medical meetings that would fit into my chemo regimen, allowing me to travel during my “good “ week, the week before my next round of drugs. There weren’t many. I could have gone to a course in embalming the female cadaver (but that REALLY didn’t interest me) or a few other weird courses, but then I found this course in obstetric problems, something I was really interested in. To make it even better, it was sponsored by the same folks that had put on the meeting last March that I had to cancel (for which I forfeited a large deposit). They would give me most of my $550 deposit back if I registered for another of their courses within a year, and American Airlines would give me credit for the cancelled plane fare too. So, you see, we HAD go to this meeting! We get credit for our fees we already paid, the company picks up the majority of the tab anyway, Kathy has always wanted to see Hawaii, and I really need to get a meeting done before the end of the year for licensure reasons.
I also heard from my step-brother/cousin Tom Lee in Atlanta recently. He says my reports are his main source of reading material and it had been so long since my last letter that he was afraid that he’d have to go to the library to get a book. I mentioned in the past that Tom was my step-brother/cousin. I thought surely someone would write in to ask me about that curious relationship. He always adds to his notes (when he signs off that way), “Are we from Alabama?” He also noted that you know you are a redneck when you go to family reunions to meet girls!
Actually, the explanation, which many of you already know, is very simple. Tom’s dad, Lloyd Lee, married my Mom’s sister Marian. And Lloyd and Marian were attendants at the wedding of my mom and dad. My dad died (of this same leukemia) in 1981, and Lloyd and Marian came down to San Antonio several times to visit mom after the fact, as they had doing for many years anyway. When Tom’s Mom (Lloyd‘s wife), Marian, died in 1989, Lloyd and my mom spent a lot of time together, and finally decided to get married. It has been a wonderful thing for both of them.
While I was growing up in Texas, my family often visited Lloyd and Marian during the summers up on their farm in Iowa, near the small town of Letts. Tom and his brother Dick, were older than me and I’d hang around with them as they went about the farm chores. I was a city boy and was fascinated by all the things they were doing. One time I asked, when I was about 12, if they could teach me to drive the tractor. They said sure, and showed me how to start the motor and get it in gear. Shortly thereafter we were down in the fields and they needed the tractor and wagon brought down to where they were. I quickly volunteered to bring it, using my newly acquired driving skills. I ran up the hill to where the tractor was standing, proudly started it up and got it going down toward Tom and Dick, and Lloyd too, I believe. It wasn’t until I got down to them that I realized they hadn’t told me how to stop the silly thing! I circled around and around as they tried to yell instructions to me until one of them came alongside and jumped on to get it stopped. I didn’t drive again for a long time.
Today I’m wearing my “fat pants.” Kathy found me a pair of jeans on sale at Target for $10 that are two inches larger than I usually wear so I can be comfortable during the times I get big on the steroids. I hope I don’t get TOO comfortable in these. I usually try to make my body fit my clothing, rather than getting clothes that accommodate to my enlarging body.
PLANNING...HOW...FOR WHAT...?
You know, it is so difficult to know how to plan the rest of my life right about now. Since I really don’t how long the rest of my life is going to be (of course, do any of us, really?). I still don’t know what to do about retirement, work, etc. I really would like to be able to retire before I check out, and could probably do so if I start getting into my retirement funds now, but if I do that, and then live for another fifteen years, I’ll be broke! I’d probably have to go back to work! What a cruel trick that would be! In addition, this is a particularly bad time to be accessing my retirement funds as they’re all in the tank. They are all in stocks or bonds, most of which are ‘way down right now. I’d be like the brother of another colleague at work whose brother has a brain tumor he’s been fighting for a number of years. He didn’t expect to live as long as he has, so now he has no job and no money. What to do? I really think I’ll keep working for the near future, at reduced hours, until we see how this treatment, or whatever treatment we go to next, does. If it looks like we’re reaching the end of the line, then I’ll retire to see if I can enjoy my last few years.
But if I don’t work, I will lose out on several things (not counting the pay and benefits). The main thing will be the contact with my patients and colleagues. My work, is to a large extent, who I am. If I’m not working, at least a little, then I’m just that retired guy down the street who’s got leukemia. I enjoy the contact with the folks at work, I really do. And I personally love the feedback I get from my patients. One of the best things about what I do is that I sometimes really think I make a difference. There are moms out there who are alive because of what I’ve done, and kids who would not have been born alive except for my interventions. I’m happy about that, and am proud that I could help folks so often.
I also wonder about end-of-life scenarios. Leukemics don’t usually die sudden deaths, so there will be time to decide how and where I want to spend my last days. I’d like not to be in an ICU with all kinds of monitors beeping, all by myself, coated by fluorescent light, dying alone at about 3:00 AM (as many critically ill people do, for some reason). I read an article recently about a woman here in Highlands Ranch who was dying of breast cancer. Her final wishes were to die at home, with her husband holding her face in his hands, and she wanted her life and death to be meaningful. I think that is kind of what I’d like, but on the other hand, I don’t want Kathy to remember our bedroom and our bed as the place I died. Plus, many home sales contracts ask if anyone has died in the home. I guess some folks are afraid of ghosts or something. My dying in the house might actually make it more difficult to sell! What to do?
Planning one’s death also is not that easy to do. The scenario above, about dying with your face held by your spouse, is a great sentiment but is not easy to schedule. When you’re dying of cancer, your last days are not good days for you or your family. Generally the patient is only semi-conscious for a number of days before the “terminal event.” You wouldn’t have the opportunity to say, for example, “Come here, dear. I see the light coming to get me!” And making the family stand guard over you for days, watching you die by degrees, would not be a good thing for the family, especially when you wouldn’t even be aware of their presence. My Mom can attest to that, as she visited my Dad for days just before he died, times when he didn’t know where he was or what he was saying. Then he died in the early morning hours when Mom was at home and he was alone!
Maybe a hospice?
October 23
I faded rapidly and deeply after the above and have been away from the keyboard for several days. I think this installment is long enough, so though I have more stuff to pass along, I think I’ll get this into cyberspace and into your mailboxes. We got a touch of winter today, with some snow flurries. I’ll tell you about it next time.
I should mention, though, to ease your fears of viruses, that I wrote to the Yahoo folks a couple of times (they bought Prodigy recently) complaining that I was being impersonated and that someone was sending out viruses in my name. Their response basically was that “technically” they couldn’t stop anyone from impersonating me, and left the impression that they couldn’t or wouldn’t do anything. We had been getting four to eight returned messages a day, bounced back from inactive e-mail addresses, with virus-laden attachments (which Doctor Norton was taking care of for us) but since I complained to Yahoo the second time, they have stopped completely! They never said they were going to do anything, but I’m guessing that “technically” they actually had the electronic power to reach out to someone and get the impersonation to stop, be blocked or whatever. Now those guys are probably using some other poor schmuck’s e-mail address, from their electronic mailing list, to send out their evil messages. But at least I don’t need to worry about them for now, and neither do you.
Enough for now. I’ll be back in a few days unless you’ve had enough of this stuff and hit the delete button when you see my name in your in-basket!
Dave
PS--No one ever wrote in to tell me what a “hat trick” was, or rather, where the term came from. Does anybody really know?
Chapter 4, Verse 1
October 17, 2002
About Halfway...
I just sent out a DGA today that I started last week, but I thought I’d start the next one before I get too fuzzy. There is a phenomenon called “chemo brain” (really!) that affects your memory, long and short term, I guess. I just thought I’d tell you about the last few days of chemo while it’s fresh in my mind.
First, the good news about my blood counts. I had more blood drawn last Monday, four days ago, as we always do before starting a round of drugs. As before, my good guys are holding their own. My red cells and platelets are still normal. My white count is up a little bit to about 3,100, but the increase is almost entirely in greater numbers of neutrophils, the bacteria fighters, and not the lymphocytes, which can be the bad cells in this case. All the bad guys, the leukemic cells, are lymphocytes, but not all lymphocytes are bad guys, of course. But for now, the count of lymphs is staying stable and therefore my percentage of neutrophils is edging up toward normal. For those of you interested in medical minutia, we normally have about 85% or so of our white cells as neutrophils and about 10% or so that are lymphs. When I started my therapy, I had about the opposite ratios; about 89% lymphs and only about 10% neutrophils (if you’re wondering, the missing percentages are made up of other white cells called eosinophils, monocytes, basophils and a few other odds and ends). My neutrophils are now up to about 60% of the total white cells (though their total numbers are still depressed to low but normal range numbers; Natalie, they need more jokes!).
So, we started Round Four. This about marks the halfway point for me, in this chemo stuff. I’ve completed and recovered from three rounds so far and have to recover from three more plus a round, I guess, of Rituxan alone, though I’m going to try to talk my doc into giving me another full round of chemo in January if my marrow is still in good shape. I want to blast the disease as hard as I can this first time, and hopefully not give it a chance to come back!
When I went in for the drugs, I was seated next to my partner, Laurel, who has the breast cancer that has spread to her lungs and liver. She seems in amazingly good spirits and was writing thank you notes to folks who had brought food over to the house when she had to go in for more therapy. She actually was in the hospital for a day when they found the disease had spread. She was having trouble breathing because of lymph node involvement. This has gotten better since her first round of the new chemotherapy she’s getting, Taxitir, I believe. It’s a synthetic form of the older drug, Taxol, which is derived from yew trees. Laurel and I talked for a while until they gave me my premedication, at which point I turned on the CD player and went to sleep.
This turned out to be the longest course of chemo yet. For whatever reason, the Rituxan (another $1500 worth) took a long time to infuse, about three hours or more. And that was after the infusion of the premedications, and before the fludarabine and cytoxan went in. It wasn’t all that bad for me, I was in a recliner (though it is an industrial strength hospital recliner, not a real soft home-style recliner). Kathy, on the other hand, spent the whole time watching me sleep through the infusions in a straight back hospital chair. She had a sore butt and a headache before it was all over. She helped pass the time by reading and doing cross-stitch on a quilt we’re doing for Brooke, our latest granddaughter.
The last couple of days of chemo have been no problem. The IVs have gone in my veins easily and the cytoxan and fludarabine go in over about an hour. No sweat! I have been feeling a little sleepy over the last day or so as the chemo effect sneaks up on me so I pretty much slept through the short infusion today, listening again to Kent’s “One Quiet Piece After Another.”
I have to say, as much as I like the staff at the Hematology-Oncology clinic, there have been a lot of potential medication errors, with me getting incorrect doses of pre-meds, until I ask why, with the nurses asking ME what I am supposed to be getting, asking ME why the dose of Rituxan is changing, etc. We’re using a very new regimen of drugs, but the protocol is in my chart. Maybe they’re asking me these questions because I’m a doc, rather than asking my doc, because they expect me to know (as I do) but if they ask these questions of an average 75 year old leukemic, the patient likely would have no idea what was going on. Yesterday I got shorted on my steroid pre-meds. That’s not the first time my pre-meds have been wrong. But I was only short 4 mg of the 16mg of dexamethasone I was supposed to get so I didn’t worry about it.
Today after my infusions, I had an appointment at the eye doc’s office. I hadn’t had an eye exam in three years! She went over my eyes real well and I’m happy to report that at least my eyes are in good working order. She changed my contacts prescription and now I’m cleared for more astronomy nights!
I recently heard from our friend Cindy (Chitwood) Hunt, in El Paso, who’s been a friend of the family since she and our daughter went to junior high school together. She was commiserating with me on having to go to the bathroom so often during my chemo treatments. You see, she understands what it’s like. Cindy suffers from a “rare medical condition” called TWB. It is a hardship for people like Cindy who have Teeny Weeny Bladder as they have to pee all the time. We know! Cindy came to Europe to visit with us a couple of times while we were in Stuttgart. We went camping across England and Scotland with Cindy and made a lot of potty breaks! Now she thinks I should have been more sympathetic.
October 18
We also heard from Jane Forte up in Iowa who thinks it’s just “too bad” that we have to go all the way to Maui for an educational meeting. Actually, that wasn’t my first choice at all. But I needed to get some Continuing Medical Education (CME) credits before the end of the year. Like all professionals, whether they be lawyers, teachers, nurses or physical therapists, I am required to get continuing education each year to maintain my license to practice. I had to cancel a meeting we had planned for last March when Kathy and I were both sick, so I was scouring the web sites listing medical meetings that would fit into my chemo regimen, allowing me to travel during my “good “ week, the week before my next round of drugs. There weren’t many. I could have gone to a course in embalming the female cadaver (but that REALLY didn’t interest me) or a few other weird courses, but then I found this course in obstetric problems, something I was really interested in. To make it even better, it was sponsored by the same folks that had put on the meeting last March that I had to cancel (for which I forfeited a large deposit). They would give me most of my $550 deposit back if I registered for another of their courses within a year, and American Airlines would give me credit for the cancelled plane fare too. So, you see, we HAD go to this meeting! We get credit for our fees we already paid, the company picks up the majority of the tab anyway, Kathy has always wanted to see Hawaii, and I really need to get a meeting done before the end of the year for licensure reasons.
I also heard from my step-brother/cousin Tom Lee in Atlanta recently. He says my reports are his main source of reading material and it had been so long since my last letter that he was afraid that he’d have to go to the library to get a book. I mentioned in the past that Tom was my step-brother/cousin. I thought surely someone would write in to ask me about that curious relationship. He always adds to his notes (when he signs off that way), “Are we from Alabama?” He also noted that you know you are a redneck when you go to family reunions to meet girls!
Actually, the explanation, which many of you already know, is very simple. Tom’s dad, Lloyd Lee, married my Mom’s sister Marian. And Lloyd and Marian were attendants at the wedding of my mom and dad. My dad died (of this same leukemia) in 1981, and Lloyd and Marian came down to San Antonio several times to visit mom after the fact, as they had doing for many years anyway. When Tom’s Mom (Lloyd‘s wife), Marian, died in 1989, Lloyd and my mom spent a lot of time together, and finally decided to get married. It has been a wonderful thing for both of them.
While I was growing up in Texas, my family often visited Lloyd and Marian during the summers up on their farm in Iowa, near the small town of Letts. Tom and his brother Dick, were older than me and I’d hang around with them as they went about the farm chores. I was a city boy and was fascinated by all the things they were doing. One time I asked, when I was about 12, if they could teach me to drive the tractor. They said sure, and showed me how to start the motor and get it in gear. Shortly thereafter we were down in the fields and they needed the tractor and wagon brought down to where they were. I quickly volunteered to bring it, using my newly acquired driving skills. I ran up the hill to where the tractor was standing, proudly started it up and got it going down toward Tom and Dick, and Lloyd too, I believe. It wasn’t until I got down to them that I realized they hadn’t told me how to stop the silly thing! I circled around and around as they tried to yell instructions to me until one of them came alongside and jumped on to get it stopped. I didn’t drive again for a long time.
Today I’m wearing my “fat pants.” Kathy found me a pair of jeans on sale at Target for $10 that are two inches larger than I usually wear so I can be comfortable during the times I get big on the steroids. I hope I don’t get TOO comfortable in these. I usually try to make my body fit my clothing, rather than getting clothes that accommodate to my enlarging body.
PLANNING...HOW...FOR WHAT...?
You know, it is so difficult to know how to plan the rest of my life right about now. Since I really don’t how long the rest of my life is going to be (of course, do any of us, really?). I still don’t know what to do about retirement, work, etc. I really would like to be able to retire before I check out, and could probably do so if I start getting into my retirement funds now, but if I do that, and then live for another fifteen years, I’ll be broke! I’d probably have to go back to work! What a cruel trick that would be! In addition, this is a particularly bad time to be accessing my retirement funds as they’re all in the tank. They are all in stocks or bonds, most of which are ‘way down right now. I’d be like the brother of another colleague at work whose brother has a brain tumor he’s been fighting for a number of years. He didn’t expect to live as long as he has, so now he has no job and no money. What to do? I really think I’ll keep working for the near future, at reduced hours, until we see how this treatment, or whatever treatment we go to next, does. If it looks like we’re reaching the end of the line, then I’ll retire to see if I can enjoy my last few years.
But if I don’t work, I will lose out on several things (not counting the pay and benefits). The main thing will be the contact with my patients and colleagues. My work, is to a large extent, who I am. If I’m not working, at least a little, then I’m just that retired guy down the street who’s got leukemia. I enjoy the contact with the folks at work, I really do. And I personally love the feedback I get from my patients. One of the best things about what I do is that I sometimes really think I make a difference. There are moms out there who are alive because of what I’ve done, and kids who would not have been born alive except for my interventions. I’m happy about that, and am proud that I could help folks so often.
I also wonder about end-of-life scenarios. Leukemics don’t usually die sudden deaths, so there will be time to decide how and where I want to spend my last days. I’d like not to be in an ICU with all kinds of monitors beeping, all by myself, coated by fluorescent light, dying alone at about 3:00 AM (as many critically ill people do, for some reason). I read an article recently about a woman here in Highlands Ranch who was dying of breast cancer. Her final wishes were to die at home, with her husband holding her face in his hands, and she wanted her life and death to be meaningful. I think that is kind of what I’d like, but on the other hand, I don’t want Kathy to remember our bedroom and our bed as the place I died. Plus, many home sales contracts ask if anyone has died in the home. I guess some folks are afraid of ghosts or something. My dying in the house might actually make it more difficult to sell! What to do?
Planning one’s death also is not that easy to do. The scenario above, about dying with your face held by your spouse, is a great sentiment but is not easy to schedule. When you’re dying of cancer, your last days are not good days for you or your family. Generally the patient is only semi-conscious for a number of days before the “terminal event.” You wouldn’t have the opportunity to say, for example, “Come here, dear. I see the light coming to get me!” And making the family stand guard over you for days, watching you die by degrees, would not be a good thing for the family, especially when you wouldn’t even be aware of their presence. My Mom can attest to that, as she visited my Dad for days just before he died, times when he didn’t know where he was or what he was saying. Then he died in the early morning hours when Mom was at home and he was alone!
Maybe a hospice?
October 23
I faded rapidly and deeply after the above and have been away from the keyboard for several days. I think this installment is long enough, so though I have more stuff to pass along, I think I’ll get this into cyberspace and into your mailboxes. We got a touch of winter today, with some snow flurries. I’ll tell you about it next time.
I should mention, though, to ease your fears of viruses, that I wrote to the Yahoo folks a couple of times (they bought Prodigy recently) complaining that I was being impersonated and that someone was sending out viruses in my name. Their response basically was that “technically” they couldn’t stop anyone from impersonating me, and left the impression that they couldn’t or wouldn’t do anything. We had been getting four to eight returned messages a day, bounced back from inactive e-mail addresses, with virus-laden attachments (which Doctor Norton was taking care of for us) but since I complained to Yahoo the second time, they have stopped completely! They never said they were going to do anything, but I’m guessing that “technically” they actually had the electronic power to reach out to someone and get the impersonation to stop, be blocked or whatever. Now those guys are probably using some other poor schmuck’s e-mail address, from their electronic mailing list, to send out their evil messages. But at least I don’t need to worry about them for now, and neither do you.
Enough for now. I’ll be back in a few days unless you’ve had enough of this stuff and hit the delete button when you see my name in your in-basket!
Dave
PS--No one ever wrote in to tell me what a “hat trick” was, or rather, where the term came from. Does anybody really know?
Saturday, October 12, 2002
A Little Astronomy, Medical Meetings, But Some Bad News, Too.
Dave’s Great Adventure
Chapter 3, Verse 4
October 12, 2002
Things are looking good...
Hello again. It’s been about ten days since my last “verse” went out...the longest I think I’ve gone without putting out an update. The reason is that I’ve actually been quite busy since the last edition. I have been feeling quite well, overall, and have been very active, perhaps too active.
Last week I went to see the nose doc again. She showed me the CT scan films and told me what’s going on. It turns out that I have a partially obstructed right maxillary sinus and that’s causing my problems. She said it’s not a big deal, but that we could do surgery on it if I was interested. It wouldn’t be a big surgery, but still I’m not in the mood to have surgery at the present. In addition, she’s not too interested in operating on my sinuses when my white count is down in the 2,000 range. So we agreed that I’d keep treating myself with decongestants and intermittent antibiotics for now, and consider the surgery after I have finished my chemotherapy and my immune system is in better shape. So, Sudafed has become one of my major food groups as I try to keep the sinus from getting congested and causing pain, which then often triggers a migraine headache!
Last weekend I was feeling so normal that I went out to the prairie for “new moon.” New moon is, of course, when the moon is dark and that is the best time to do astronomy. So I drove the 110 miles (170 km) out to the Pawnee Grasslands, a federally protected area about thirty miles east of Fort Collins. Way out there, we are able to get away from the light pollution of Denver and its suburbs. I was able to put my telescope together without help, though it was a bit of a struggle. The tube (11 inch diameter) weighs about 46 pounds ( 20 kg) and I have to lift it off the ground and mount it on a four foot tripod. This is not generally a problem, but I’m somewhat weaker than usual these days. Nevertheless, I got it set up and calibrated and was able to look at a number of fascinating galaxies and nebulae during the course of the evening. There were no planets to see at this time of the year; they’ll be visible later in the Fall. I tired faster than usual (no surprise there) and took everything apart and left for home about 10:30, instead of my usual 1:00 AM or so.
The next morning I was tired and overslept, so we didn’t make it to church. I did get up in time to watch football. My guys were playing the previously undefeated San Diego Chargers and did a good job of keeping their offense in check, handing them their first defeat. I found that I was quite sore on Sunday; my muscles were protesting their abuse the previous night out on the prairie. Not only were my arms sore from manhandling the ‘scope around, but my neck and back were sore from all the stooping and bending I had done in looking into the eyepiece all night. When you do astronomy you assume some unusual postures during the course of the evening.
During this week I have been working and attending medical meetings. I have been needing to get some medical education meetings completed as I need them for my medical license. Our organization put on a very good all-day meeting last Tuesday on the subject of breast cancer. We had excellent lectures on the causes, detection and treatment of this disease. Unfortunately, at this meeting I learned that one of my colleagues is now terminally ill with breast cancer. I mentioned last July that a colleague who had had chemotherapy for breast cancer told me I might feel “fuzzy.” This colleague was actually working in my place in our clinic for several weeks last July through October to help while I was absent. We just found out that Laurel’s breast cancer has spread to her liver and lungs.
This is very sad. Laurel had married a little on the late side, and then was unable to have children. While going about treatments to try to get pregnant, she found she had the breast cancer. But she went through surgery and radiation and was thought to have been cured, so she adopted a little boy and girl. Then the cancer came back, and now it has spread beyond treatment. Very sad.
I worked in the clinic two days this week, Wednesday and Thursday, and was able to see a large number of patients. I was really tired at the end of the day each time, but it was nice once again to be with my partners and the staff in the clinic for a couple of days. I was even frisky enough for a while to get into a water gun fight with a couple of our nurses. But, I paid the price. I was very tired when I got home.
Friday I went, regrettably, to another medical meeting. I say regrettably because it was probably the worst medical meeting I’ve ever gone to. It was entitled “Journey Through the Circle of Life; A Perinatal Loss Conference.” With that title one would expect that it would be a conference studying the causes and prevention of pregnancy loss. But it was, instead, eight hours of “touchy-feely” lectures about what the various speakers thought about the topic. Very little data was presented. It was supposed to “raise our awareness” of the topic! Please! When you have nurses and docs at that type of conference, you can be absolutely certain that we are, indeed, “aware” of the problem. One lecturer suggested we all light candles at 7:00 PM this Thursday night to help raise our awareness. That kind of bullsh*t has no place at all at a “scientific” meeting. Oh well, I guess it beat working for the day.
We have been having an absolutely spectacular Fall here in the Rocky Mountain area. Our days have been sunny, in the 70s, and the mountains have been getting some snow. They look so beautiful and white against the bright blue skies. And all our famous aspen trees, the ones I curse at when they try to sprout in my grass, are now a brilliant yellow, adding to the beauty. We’ve had a few days of rain, not enough to break the drought, but every bit helps. It is actually a little late in the year for us not to have had any snow here in Denver. Generally we start in September some time. It will come soon enough, however.
I have mentioned several times that I frequent on-line auctions from time to time. Well, with my extra time on my hands I’ve decided to become an entrepreneur as well. I’m now selling (a very few) things on eBay! I have collected a number of old coins during my years of collecting and have a lot of extras. I decided to try to see if I can sell them. The answer is that you can sell anything on eBay. I started out small, auctioning off three coins and getting over $300. That doesn’t really mean I MADE $300 though. I lost $50 on one coin, made $40 on another and I forgot what I paid for the third one several years ago. But it‘s fun to do. If this goes well, I’ll sell some more after I’m over my next round of “fuzzies.” I’m not at all sure what the tax implications of all this are, however. I don’t want the IRS (steueramt) to come after me looking for unpaid taxes!
I think my brother Douglas, the professor out in Rock Hill, South Carolina, may be right after all. At least to some extent. I do seem to be getting fat. The weight I gained hasn’t all melted away like it’s supposed to during the past couple of weeks. I’m down to about 178 or so, but still about 4-5 pounds more than my usual weight. That means I’ll likely be over 190 when I get the next course of treatment! My hair is starting to fall out again; it’s been almost four weeks since the last round. It doesn’t fall out by the handful, like some people experience. It’s more like a dog shedding in the Summer. It just falls out faster than normal. You still can’t really tell by looking, except that the part in my hair is a bit thinner. You mostly can tell by feel. Kathy and I can tell, but most folks generally don’t run their fingers through my hair, so they don’t know. We’ll see what it looks like at the end. I’m only halfway through this stuff, you know.
Let me mention a couple of other things I got for my birthday. A couple of days after the date we received a registered letter from Germany containing coupons for flowers at any FTD/Teleflora shop. It had been sent by our dear friends, the Galla relatives. The accompanying card had five bears wishing me a great birthday, in German, of course. And they had written that the five “Galla bears” sent their greeting. Well, at the FTD shop, the clerk looked at the coupons and said she had she had worked there for 24 years or something, and had never seen such a coupon. So she called the central office in downtown Denver, and they weren’t sure what to do with them or how to exchange them. So she called someone in Dallas, or somewhere in Texas, and found out how to make the exchange. While she was doing all the phone calls we were looking at their displays and found what we thought was the perfect flower arrangement. They had a “Happy Bearday” basket with a stuffed bear in a “Happy Birthday“ shirt, so we opted for that as my gift. It was perfect.
And our friends the Henefelds, hearing about my need for spicy food, bought me a couple of different bottles of “Dave’s Gourmet Insanity Hot Sauce.” The instructions warn that
you should use the product only one drop at a time! They also picked up a T-shirt from the company with “Dave’s” on the back. To add to my collection of reading material, they presented me with a book of writings by Baxter Black, the “Cowboy Poet.” Now I have even more stuff to read at bedtime and to keep Kathy awake as I laugh while reading. Funny stories!
Last Tuesday morning, the day I went to the breast cancer meeting, we had to get up quite early as I had to be downtown before 8:00 AM. Kathy got up, too, to get breakfast, and was going down the stairs in the dark when she missed a step. She ended up on the floor with a badly sprained left ankle. I didn’t know about it until I came downstairs after my bath. She had a huge knot on the side of her ankle about the size of an egg! I had to leave shortly, so I ran up the stairs to find a wrap for her ankle, got it wrapped up securely, gave her some ibuprofen and we put ice on it. Then I had to leave my crippled wife all alone. I took the cell phone with me and called a couple of times during the day to make sure she was okay, and she was. She’s doing well now; her ankle is a bit sore and swollen, and has turned a lovely shade of blue and yellow with green “highlights” but is not bothering her too much at this point.
Since it’s now five days since I started this, and have been delayed in sending it out by the virus scare, I think I’ll just hit the send button and get it on its way. I’m doing day three of my fourth round of the chemo and I’ll tell you about how that’s going, and more, soon. Though, I might have to wait until I’m past my “fuzzies” which I think are already sneaking up on me.
Until later,
Dave
Chapter 3, Verse 4
October 12, 2002
Things are looking good...
Hello again. It’s been about ten days since my last “verse” went out...the longest I think I’ve gone without putting out an update. The reason is that I’ve actually been quite busy since the last edition. I have been feeling quite well, overall, and have been very active, perhaps too active.
Last week I went to see the nose doc again. She showed me the CT scan films and told me what’s going on. It turns out that I have a partially obstructed right maxillary sinus and that’s causing my problems. She said it’s not a big deal, but that we could do surgery on it if I was interested. It wouldn’t be a big surgery, but still I’m not in the mood to have surgery at the present. In addition, she’s not too interested in operating on my sinuses when my white count is down in the 2,000 range. So we agreed that I’d keep treating myself with decongestants and intermittent antibiotics for now, and consider the surgery after I have finished my chemotherapy and my immune system is in better shape. So, Sudafed has become one of my major food groups as I try to keep the sinus from getting congested and causing pain, which then often triggers a migraine headache!
Last weekend I was feeling so normal that I went out to the prairie for “new moon.” New moon is, of course, when the moon is dark and that is the best time to do astronomy. So I drove the 110 miles (170 km) out to the Pawnee Grasslands, a federally protected area about thirty miles east of Fort Collins. Way out there, we are able to get away from the light pollution of Denver and its suburbs. I was able to put my telescope together without help, though it was a bit of a struggle. The tube (11 inch diameter) weighs about 46 pounds ( 20 kg) and I have to lift it off the ground and mount it on a four foot tripod. This is not generally a problem, but I’m somewhat weaker than usual these days. Nevertheless, I got it set up and calibrated and was able to look at a number of fascinating galaxies and nebulae during the course of the evening. There were no planets to see at this time of the year; they’ll be visible later in the Fall. I tired faster than usual (no surprise there) and took everything apart and left for home about 10:30, instead of my usual 1:00 AM or so.
The next morning I was tired and overslept, so we didn’t make it to church. I did get up in time to watch football. My guys were playing the previously undefeated San Diego Chargers and did a good job of keeping their offense in check, handing them their first defeat. I found that I was quite sore on Sunday; my muscles were protesting their abuse the previous night out on the prairie. Not only were my arms sore from manhandling the ‘scope around, but my neck and back were sore from all the stooping and bending I had done in looking into the eyepiece all night. When you do astronomy you assume some unusual postures during the course of the evening.
During this week I have been working and attending medical meetings. I have been needing to get some medical education meetings completed as I need them for my medical license. Our organization put on a very good all-day meeting last Tuesday on the subject of breast cancer. We had excellent lectures on the causes, detection and treatment of this disease. Unfortunately, at this meeting I learned that one of my colleagues is now terminally ill with breast cancer. I mentioned last July that a colleague who had had chemotherapy for breast cancer told me I might feel “fuzzy.” This colleague was actually working in my place in our clinic for several weeks last July through October to help while I was absent. We just found out that Laurel’s breast cancer has spread to her liver and lungs.
This is very sad. Laurel had married a little on the late side, and then was unable to have children. While going about treatments to try to get pregnant, she found she had the breast cancer. But she went through surgery and radiation and was thought to have been cured, so she adopted a little boy and girl. Then the cancer came back, and now it has spread beyond treatment. Very sad.
I worked in the clinic two days this week, Wednesday and Thursday, and was able to see a large number of patients. I was really tired at the end of the day each time, but it was nice once again to be with my partners and the staff in the clinic for a couple of days. I was even frisky enough for a while to get into a water gun fight with a couple of our nurses. But, I paid the price. I was very tired when I got home.
Friday I went, regrettably, to another medical meeting. I say regrettably because it was probably the worst medical meeting I’ve ever gone to. It was entitled “Journey Through the Circle of Life; A Perinatal Loss Conference.” With that title one would expect that it would be a conference studying the causes and prevention of pregnancy loss. But it was, instead, eight hours of “touchy-feely” lectures about what the various speakers thought about the topic. Very little data was presented. It was supposed to “raise our awareness” of the topic! Please! When you have nurses and docs at that type of conference, you can be absolutely certain that we are, indeed, “aware” of the problem. One lecturer suggested we all light candles at 7:00 PM this Thursday night to help raise our awareness. That kind of bullsh*t has no place at all at a “scientific” meeting. Oh well, I guess it beat working for the day.
We have been having an absolutely spectacular Fall here in the Rocky Mountain area. Our days have been sunny, in the 70s, and the mountains have been getting some snow. They look so beautiful and white against the bright blue skies. And all our famous aspen trees, the ones I curse at when they try to sprout in my grass, are now a brilliant yellow, adding to the beauty. We’ve had a few days of rain, not enough to break the drought, but every bit helps. It is actually a little late in the year for us not to have had any snow here in Denver. Generally we start in September some time. It will come soon enough, however.
I have mentioned several times that I frequent on-line auctions from time to time. Well, with my extra time on my hands I’ve decided to become an entrepreneur as well. I’m now selling (a very few) things on eBay! I have collected a number of old coins during my years of collecting and have a lot of extras. I decided to try to see if I can sell them. The answer is that you can sell anything on eBay. I started out small, auctioning off three coins and getting over $300. That doesn’t really mean I MADE $300 though. I lost $50 on one coin, made $40 on another and I forgot what I paid for the third one several years ago. But it‘s fun to do. If this goes well, I’ll sell some more after I’m over my next round of “fuzzies.” I’m not at all sure what the tax implications of all this are, however. I don’t want the IRS (steueramt) to come after me looking for unpaid taxes!
I think my brother Douglas, the professor out in Rock Hill, South Carolina, may be right after all. At least to some extent. I do seem to be getting fat. The weight I gained hasn’t all melted away like it’s supposed to during the past couple of weeks. I’m down to about 178 or so, but still about 4-5 pounds more than my usual weight. That means I’ll likely be over 190 when I get the next course of treatment! My hair is starting to fall out again; it’s been almost four weeks since the last round. It doesn’t fall out by the handful, like some people experience. It’s more like a dog shedding in the Summer. It just falls out faster than normal. You still can’t really tell by looking, except that the part in my hair is a bit thinner. You mostly can tell by feel. Kathy and I can tell, but most folks generally don’t run their fingers through my hair, so they don’t know. We’ll see what it looks like at the end. I’m only halfway through this stuff, you know.
Let me mention a couple of other things I got for my birthday. A couple of days after the date we received a registered letter from Germany containing coupons for flowers at any FTD/Teleflora shop. It had been sent by our dear friends, the Galla relatives. The accompanying card had five bears wishing me a great birthday, in German, of course. And they had written that the five “Galla bears” sent their greeting. Well, at the FTD shop, the clerk looked at the coupons and said she had she had worked there for 24 years or something, and had never seen such a coupon. So she called the central office in downtown Denver, and they weren’t sure what to do with them or how to exchange them. So she called someone in Dallas, or somewhere in Texas, and found out how to make the exchange. While she was doing all the phone calls we were looking at their displays and found what we thought was the perfect flower arrangement. They had a “Happy Bearday” basket with a stuffed bear in a “Happy Birthday“ shirt, so we opted for that as my gift. It was perfect.
And our friends the Henefelds, hearing about my need for spicy food, bought me a couple of different bottles of “Dave’s Gourmet Insanity Hot Sauce.” The instructions warn that
you should use the product only one drop at a time! They also picked up a T-shirt from the company with “Dave’s” on the back. To add to my collection of reading material, they presented me with a book of writings by Baxter Black, the “Cowboy Poet.” Now I have even more stuff to read at bedtime and to keep Kathy awake as I laugh while reading. Funny stories!
Last Tuesday morning, the day I went to the breast cancer meeting, we had to get up quite early as I had to be downtown before 8:00 AM. Kathy got up, too, to get breakfast, and was going down the stairs in the dark when she missed a step. She ended up on the floor with a badly sprained left ankle. I didn’t know about it until I came downstairs after my bath. She had a huge knot on the side of her ankle about the size of an egg! I had to leave shortly, so I ran up the stairs to find a wrap for her ankle, got it wrapped up securely, gave her some ibuprofen and we put ice on it. Then I had to leave my crippled wife all alone. I took the cell phone with me and called a couple of times during the day to make sure she was okay, and she was. She’s doing well now; her ankle is a bit sore and swollen, and has turned a lovely shade of blue and yellow with green “highlights” but is not bothering her too much at this point.
Since it’s now five days since I started this, and have been delayed in sending it out by the virus scare, I think I’ll just hit the send button and get it on its way. I’m doing day three of my fourth round of the chemo and I’ll tell you about how that’s going, and more, soon. Though, I might have to wait until I’m past my “fuzzies” which I think are already sneaking up on me.
Until later,
Dave
Wednesday, October 2, 2002
Recovering nicely!
Dave’s Great Adventure
Chapter 3, Verse 3
October 2, 2002
Not so bad....
Well, I’m into week three after round three of the chemotherapy. I think I’m recovering faster from this round than I did the second round, and I didn’t expect that. I think I mentioned that a friend’s mother had had Rituxan for her bowel lymphoma and seemed to be having increasing weakness with each cycle. I feel close to being back to normal already. I hope I’m not jumping to conclusions too soon, ‘cause I don’t want to be disappointed by getting sick again before the next round, which will start on October 15th.
I had my blood count done a couple of days ago and things are still going well. My white count is now down to 2,400, and my lymphocyte count is down to 500. Still, the things I need remain in the normal range; my red cell count is about 41%, my platelets are back up into the normal range and my neutrophils are still low, but in the normal range at 1000, which is the very bottom of the normal range. I think my neutrophil count is the limiting factor for getting more chemotherapy. If the neutrophils are less than 1000 when it’s time for another infusion, I think we have to wait until they’re back up to at least that number to restart the therapy. They should recover somewhat between now and the time for my next treatment.
I heard from my brother Doug in South Carolina. With all this talk about Mexican food, chicken wings, nachos, frozen custard and the like, he thinks I must be getting awfully fat. Well, yes and no. I mentioned that I do gain a lot of weight with each round of therapy, but so far it seems to melt away before the next cycle. Some of the reason I’m eating so much is that steroids can boost one’s appetite, so I feel like I NEED to eat more for a while after getting the drugs. It doesn’t last the full four weeks, however. I’m generally about 174 pounds, get up to close to 190 after the chemo, but now I’m back to about 180. We’ll see where I am when it’s time to start again on the 15th.
And my son-in-law wrote in to disabuse me of the notion that our kids thought we were asexual. He says that we gave ourselves away by sending them out with money and telling them not to come home for lunch on many occasions when I was home after a night of work. Or when we sent them to the neighbors to play for the afternoon. And we thought we were being so clever!
The last time I saw my doc, I asked him if we could collect and freeze some of my bone marrow for possible future use, if I achieved a high-grade remission. My thought was that, come next year, if things look relatively normal, we could collect the marrow to transplant back into me if/when my remission fails. He said he’d ask his “transplanters” about this possibility. There is a certain amount of circular reasoning in even thinking about this possibility. If I achieve a high-grade remission, there might be reason to think that I might be “cured” and wouldn’t ever need a transplant of bone marrow. If, on the other hand, we collect the marrow, just in case, and my remission fails, then there might be good reason to believe that the marrow would likely contain leukemic cells which we would be transplanting back into me, “reinfecting” me, if you will, with bad cells. This is a logical conclusion, but what makes it worth thinking about is that as the bone marrow is collected, it can be treated with anti-leukemic drugs, at high concentrations, to try to clean it of any residual bad cells. We’ll see what Brian’s “transplanters” say about this as we get further along in this process.
This time that I have been off work has been an interesting introduction into what it might be like to be retired. I have heard of a lot of couples who really didn’t like it at all when the husband retired and was hanging around the house all the time. But, at least in the short term, Kathy and I have had no problems at all being around each other all day every day. It’s even been fun when I wasn’t too sick to interact with her. We’ve played card games, gone to movies, gone out for lunch or dinners, and just watched TV. When I can be off, and be hopefully healthy, for longer periods of time, we plan to do some more traveling. That’s probably our favorite thing to do, other than spend time with the family.
And speaking of retirement, since I now am kinda “stuck” here (there are certainly worse places to be “stuck” than Colorado) and can’t retire, because I need the benefits, I’m going to see if I can get the bosses to let me create a “retirement job” for the last few years I work with Kaiser. I had hoped to move to New Mexico in a couple of years and get a job doing pap smears or something, but now that’s not an option. So I’m going to see if I can modify my job to less hours as the next few years go by, with less of the things that cause stress in the job, like some of the surgery, hospital rotations and such. I haven’t approached them about this yet, but will be writing them a letter in the next month or so with my requests. Hopefully I can modify my job but still be an effective worker for the department. We have a large enough group of gynecologists (about 40) that I think they should be able to accommodate my wishes and not hurt the department.
I don’t think I’ve told you about my “aviary” at my work place. Last March, shortly after I got my diagnosis, and was mired in a deep depression, a small blue glass bird appeared on my desk. Like a “bluebird of happiness.” I didn’t know who had put it there, and asked just about everybody in the clinic if they had put it there. No one confessed. It turned out that Joan had put it on my desk before leaving work the night before, but wasn’t in the office when I was asking all my questions about it. Well, all the questions I was asking got other folks in the office to thinking about birds, and slowly, one by one, more birds began appearing in my office; glass birds, plastic birds, plush birds, birds that sing, origami birds and more. So I started hanging the birds around my office. I now have about ten birds hanging from the ceiling, more on the bookcase and several on my desk. The replacement doc who’s taking my place has been a good sport about working in my “aviary,” and in fact has added to it. Last week I found that she had found a large plush flamingo to add to the collection! My office is certainly unlike any other gynecologist’s office that I’ve ever seen. But that’s okay.
I’m so glad to be doing the chemotherapy. Before I started, I felt like I was just waiting for the disease to eat me up from inside. It was depressing to keep watching my white count get ever higher every time we checked it. Now that we’re finally doing something, and it seems to be getting positive results, at least in the short term, I don’t feel so much like I did, like “yesterday I was living but now I’m dying.” Now I’m starting to think about the future again. I’m trying to make plans for more than just the next few weeks and I actually feel like I’ll be around for more than a few months to years. Kathy and I are planning to go to Maui in November, if my doc will let me travel, to attend a medical meeting. I haven’t been able to go to a medical meeting all year because of my illness and therapy, but now I think I’ll be able to do so. I need to get some educational credits to maintain my medical license and where better to do that than in Maui? And we’re starting to plan a trip to Alaska next year. We’ve always wanted to go but never made the trip. Hopefully this summer will be the time. It’s nice for me to be able to think like that again.
That’s about all that’s newsworthy for now. I’ll get this out and report back in a week or so. I’ll be working again for a couple of days next week, and will be going to a couple of all day educational meetings, so we’ll really see if I’ve recovered as much as I think I have. And that will lead up to the next round of chemo! Until then....
Dave
“To laugh often and much, to win the respect of intelligent people and the affection of children,
To earn the appreciation of honest critics and to endure the betrayal of false friends,
To appreciate beauty, to find the best in others,
To leave the world a bit better whether by healthy child, a garden patch, or a redeemed social condition,
To know even one life has breathed easier because you have lived,
This is to have succeeded.”
Ralph Waldo Emerson
(This was in the bulletin of at the funeral of Angie Smith, whom I mentioned a few weeks ago; it was “Angie’s Creed”)
Chapter 3, Verse 3
October 2, 2002
Not so bad....
Well, I’m into week three after round three of the chemotherapy. I think I’m recovering faster from this round than I did the second round, and I didn’t expect that. I think I mentioned that a friend’s mother had had Rituxan for her bowel lymphoma and seemed to be having increasing weakness with each cycle. I feel close to being back to normal already. I hope I’m not jumping to conclusions too soon, ‘cause I don’t want to be disappointed by getting sick again before the next round, which will start on October 15th.
I had my blood count done a couple of days ago and things are still going well. My white count is now down to 2,400, and my lymphocyte count is down to 500. Still, the things I need remain in the normal range; my red cell count is about 41%, my platelets are back up into the normal range and my neutrophils are still low, but in the normal range at 1000, which is the very bottom of the normal range. I think my neutrophil count is the limiting factor for getting more chemotherapy. If the neutrophils are less than 1000 when it’s time for another infusion, I think we have to wait until they’re back up to at least that number to restart the therapy. They should recover somewhat between now and the time for my next treatment.
I heard from my brother Doug in South Carolina. With all this talk about Mexican food, chicken wings, nachos, frozen custard and the like, he thinks I must be getting awfully fat. Well, yes and no. I mentioned that I do gain a lot of weight with each round of therapy, but so far it seems to melt away before the next cycle. Some of the reason I’m eating so much is that steroids can boost one’s appetite, so I feel like I NEED to eat more for a while after getting the drugs. It doesn’t last the full four weeks, however. I’m generally about 174 pounds, get up to close to 190 after the chemo, but now I’m back to about 180. We’ll see where I am when it’s time to start again on the 15th.
And my son-in-law wrote in to disabuse me of the notion that our kids thought we were asexual. He says that we gave ourselves away by sending them out with money and telling them not to come home for lunch on many occasions when I was home after a night of work. Or when we sent them to the neighbors to play for the afternoon. And we thought we were being so clever!
The last time I saw my doc, I asked him if we could collect and freeze some of my bone marrow for possible future use, if I achieved a high-grade remission. My thought was that, come next year, if things look relatively normal, we could collect the marrow to transplant back into me if/when my remission fails. He said he’d ask his “transplanters” about this possibility. There is a certain amount of circular reasoning in even thinking about this possibility. If I achieve a high-grade remission, there might be reason to think that I might be “cured” and wouldn’t ever need a transplant of bone marrow. If, on the other hand, we collect the marrow, just in case, and my remission fails, then there might be good reason to believe that the marrow would likely contain leukemic cells which we would be transplanting back into me, “reinfecting” me, if you will, with bad cells. This is a logical conclusion, but what makes it worth thinking about is that as the bone marrow is collected, it can be treated with anti-leukemic drugs, at high concentrations, to try to clean it of any residual bad cells. We’ll see what Brian’s “transplanters” say about this as we get further along in this process.
This time that I have been off work has been an interesting introduction into what it might be like to be retired. I have heard of a lot of couples who really didn’t like it at all when the husband retired and was hanging around the house all the time. But, at least in the short term, Kathy and I have had no problems at all being around each other all day every day. It’s even been fun when I wasn’t too sick to interact with her. We’ve played card games, gone to movies, gone out for lunch or dinners, and just watched TV. When I can be off, and be hopefully healthy, for longer periods of time, we plan to do some more traveling. That’s probably our favorite thing to do, other than spend time with the family.
And speaking of retirement, since I now am kinda “stuck” here (there are certainly worse places to be “stuck” than Colorado) and can’t retire, because I need the benefits, I’m going to see if I can get the bosses to let me create a “retirement job” for the last few years I work with Kaiser. I had hoped to move to New Mexico in a couple of years and get a job doing pap smears or something, but now that’s not an option. So I’m going to see if I can modify my job to less hours as the next few years go by, with less of the things that cause stress in the job, like some of the surgery, hospital rotations and such. I haven’t approached them about this yet, but will be writing them a letter in the next month or so with my requests. Hopefully I can modify my job but still be an effective worker for the department. We have a large enough group of gynecologists (about 40) that I think they should be able to accommodate my wishes and not hurt the department.
I don’t think I’ve told you about my “aviary” at my work place. Last March, shortly after I got my diagnosis, and was mired in a deep depression, a small blue glass bird appeared on my desk. Like a “bluebird of happiness.” I didn’t know who had put it there, and asked just about everybody in the clinic if they had put it there. No one confessed. It turned out that Joan had put it on my desk before leaving work the night before, but wasn’t in the office when I was asking all my questions about it. Well, all the questions I was asking got other folks in the office to thinking about birds, and slowly, one by one, more birds began appearing in my office; glass birds, plastic birds, plush birds, birds that sing, origami birds and more. So I started hanging the birds around my office. I now have about ten birds hanging from the ceiling, more on the bookcase and several on my desk. The replacement doc who’s taking my place has been a good sport about working in my “aviary,” and in fact has added to it. Last week I found that she had found a large plush flamingo to add to the collection! My office is certainly unlike any other gynecologist’s office that I’ve ever seen. But that’s okay.
I’m so glad to be doing the chemotherapy. Before I started, I felt like I was just waiting for the disease to eat me up from inside. It was depressing to keep watching my white count get ever higher every time we checked it. Now that we’re finally doing something, and it seems to be getting positive results, at least in the short term, I don’t feel so much like I did, like “yesterday I was living but now I’m dying.” Now I’m starting to think about the future again. I’m trying to make plans for more than just the next few weeks and I actually feel like I’ll be around for more than a few months to years. Kathy and I are planning to go to Maui in November, if my doc will let me travel, to attend a medical meeting. I haven’t been able to go to a medical meeting all year because of my illness and therapy, but now I think I’ll be able to do so. I need to get some educational credits to maintain my medical license and where better to do that than in Maui? And we’re starting to plan a trip to Alaska next year. We’ve always wanted to go but never made the trip. Hopefully this summer will be the time. It’s nice for me to be able to think like that again.
That’s about all that’s newsworthy for now. I’ll get this out and report back in a week or so. I’ll be working again for a couple of days next week, and will be going to a couple of all day educational meetings, so we’ll really see if I’ve recovered as much as I think I have. And that will lead up to the next round of chemo! Until then....
Dave
“To laugh often and much, to win the respect of intelligent people and the affection of children,
To earn the appreciation of honest critics and to endure the betrayal of false friends,
To appreciate beauty, to find the best in others,
To leave the world a bit better whether by healthy child, a garden patch, or a redeemed social condition,
To know even one life has breathed easier because you have lived,
This is to have succeeded.”
Ralph Waldo Emerson
(This was in the bulletin of at the funeral of Angie Smith, whom I mentioned a few weeks ago; it was “Angie’s Creed”)
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