Dave’s Great Adventure
Book Two
October 3, 2003
Okay...there’s news.
Well.
I’ve been living in a self-induced fantasy for the last many months. Like just about all cancer patients with a terminal diagnosis, I thought I’d be the exception. The treatments would cure me when they couldn’t cure anyone else. I was in such a great remission, and all. My bone marrow tests were completely normal, they couldn’t find any malignant cells at all. What else could I ask for? We were about to collect some of my own stem cells so we could use them in a transplant back into myself in the distant future, if perchance my fantastic remission were to lapse. My white counts were finally normal. Everything looked great!
So last week I had another bone marrow biopsy, just to be sure that everything was okay before we harvested some of my stem cells. How could it not be okay? It was completely normal just last February. The biopsy wasn’t too bad. Sad to say, I guess I’ve gotten used to them and don’t fear having my hip bones pierced with big needles anymore. My doc does a good job of anesthetizing the area and the drugs they put in the IV seem take the worry out of being close to sharp objects.
It took a week to get the results back. I really wasn’t too worried, but I wanted to see the “Normal” result so we could schedule a stem cell collection pretty soon. I kept surreptitiously going into my medical file on the computer to look for the findings. Kathy was in the clinic on Wednesday afternoon, doing volunteer paperwork as she often does. We were ready to go home, but I thought I’d look one more time.
This time the report was there. “Blah, blah, blah...5% malignant cells present...blah, blah, blah.” “Shit!” I couldn’t believe it. I looked completely through the report, but it didn’t change. The evil leukemic cells, which we had just a few months earlier seemingly completely eradicated, were back. And so soon.
I had imagined that I’d get at least a few years out of this remission, and, as above, fantasized about a cure. A self-induced hallucination.
I stood up and went to Kathy and held her. One of my colleagues walked in on us, saw us a bit teary-eyed, and asked if there was a problem. I told her “it” was back. As we left the clinic, we stopped by to talk to Joan, another colleague, and told her the news. We shared a few hugs and a few more tears, then Kathy and I headed for home. We weren’t very hungry, but decided that we wouldn’t go home to make Kathy cook, so went to a new Mexican food place not too far from the house.
I checked my voice mail and found a message from my doc, explaining the news I had already uncovered. He said he was going to see what options were open to us at this time. But I know what the options are, basically. The same as they were the first time. We do nothing, we try more chemotherapy, or we go for the bone marrow transplant.
The next day at work, I felt just about as I’d felt last year when I first got the news about my leukemia. I was sad, slow, depressed. I only worked half a day, then took Kathy out for a movie and dinner. I have a movie recommendation for you; if you get close to a theater showing “Lost In Translation,” I recommend you turn around and go the other way! (Some will disagree with my assessment).
I’ve been all over the web to see what other folks are doing with chronic lymphocytic leukemia. And you know what? They all do something different. There just is no “standard” treatment. That's because, just as with weight loss plans and hair restoration schemes, none works very well.
Today I got another message from my doc. He has been in contact with my ”transplanter doc,” Jeff Matous, to further look into options. They kinda boil down into what I listed above, but with some more specifics.
1) We can go right back to the treatment I just finished last October (cytoxin, fludarabine and Rituxan), as it, in the short term, worked great. But what is the point of another short term treatment?
2) We can try another chemotherapy. Long-time readers of my notes may remember last summer that I mentioned a drug called Campath. It actually is the only monoclonal antibody approved for use in my form of leukemia, CLL, so that’s an option. Its use is, however, associated with high rates of infections, as it non-selectively kills just about all the white cells it comes across.
3) We can collect some stem cells from me, try to “clean them up” with some chemotherapy while they are outside of me, then kill off all my marrow and then put back my “sanitized” stem cells and hope they turn out all right.
4) We can go right to the “mini-allo” bone marrow transplant that I’ve mentioned in the past, using an unrelated donor’s marrow to replace my own. Since my siblings weren’t born with matching marrow, I’d have to find a donor (which my doc thinks would be possible) but the death rate from this kind of transplant is 25-50%. Of course, the death rate from doing nothing is 100% Compared to that, 25-50% looks pretty good.
5) Or we can try something else. I think I want to be VERY aggressive in this next round of treatment. I’ve found a protocol that is being used at M. D. Anderson Cancer Center in Houston where they do steps (1) and (2) at the same time. If that doesn’t work, then roll all the dice and go for the “mini-allo” transplant.
But, I need to see what my doc comes up with in consultation with his colleagues. Sometime next week I’ll talk with him again, after he’s talked to Jeff, and we’ll formulate some sort of plan. I guess there is really no urgency except in my head. The small amount of residual disease, though it seems like a lot to me, is in reality far less than I had when I found I had the disease last year. I had 40% leukemic cells then, and my doc has patients with upwards of 90%. So 5% isn’t so much, at least in the short term. But, I really want to get moving on this next step. Soon.
I think Book II could be a lot more exciting than the first volume, don’t you think?
So, I’ll get this short update out, and let you know, hopefully soon, what we’re going to do next.
Dave
Friday, October 3, 2003
Wednesday, August 13, 2003
Postscript Number Four: How I Spent My Summer Vacation
Dave’s Great Adventure
Postscript #4
August 19 2003
No News Is STILL Good News
Hello again, to friends, family, co-workers and those of you receiving my writings whom I may not even have met. I’ve been getting occasional inquiries from folks who wonder what’s going on here in Colorado (with me I mean ) since I haven’t written any updates in about three months now. Fair enough. Just so no one will worry that I’m not doing well, I’ll send a report on what’s been going on with me and the leukemia over the past months.
Not much.
The last major event in my treatment and plan for the future was to try to collect some stem cells from my circulation while I was in remission. You may remember that I had to go through several appeals to get my insurance company to even approve the collection of my stem cells and allow me to bank them away for future use, only to find out that my body wasn’t even making enough stem cells for us to be able to collect them! As of my last message in May, we were waiting for my marrow to recover enough from the abuse at the hands of the chemotherapy to be able to try again to collect the cells. We’re still waiting. My “transplanter” doc, Jeff Matous, wanted my white count to get up at least to 4,000 or so before trying again. So, we’ve been doing blood counts on me monthly but have been seeing my white blood cell counts just fluctuate in the mid-3,000 range since about last April or so. And so, we’ll keep doing these counts until the collection becomes possible, hopefully sometime before the leukemia returns.
What have I been doing with my time? Well, one major thing I did was go to Alaska with Kathy in June/July. I had been mentioning starting to do more traveling with her since last year, when I got the diagnosis of leukemia, since we now know that my life expectancy is likely less than we had planned (though, who really knows what their life expectancy will be, anyway?).
So, we scheduled a trip through a great travel agency called Rainbow Mountain Adventures, run by Collette Murray. Collette put together a wonderful, beautiful, relaxing and varied trip for us. We didn’t go on a cruise, didn’t go with a group, and weren’t on anyone else’s schedule. We were able to do things largely at our own pace and weren’t constrained by a tour director, a cruise liner schedule or by the speed of the slowest person on a bus trip. It was a great time. We went whale watching with two other folks in a small boat, we cruised up fjords to watch glaciers calve icebergs into the sea, we got up close to brown bears, we flew up to and landed on a glacier and walked around on it, we watched bald eagles all day, and much more. And we spent five nights in a very friendly B&B in Juneau, The Alaska Wolfhouse, run by Phil and Clovis Dennis, very nice folks whom I’m now also pestering with my “adventures,” after having discussed my condition, the meaning of life and much more while with them. If anyone out there is considering a trip to Alaska (and I think all of you should; it’s simply grand!) I have to recommend Collette Murray and her crew (www.rainbowmtnadventures.com) for your planning. They were wonderful. And if you’re going through Juneau, stop in at the Wolfhouse, but do it soon. Phil and Clovis are moving to Washington state next year to be close to their grandkids. Kathy and I have to appreciate that motivation!
I’m still working in the clinic four days a week, with a couple of day shifts on Labor and Delivery per month, on weekends. Work is going well, but as I mentioned a few months ago, I feel tired a lot. Perhaps I know now why, after having an adventure of another sort recently.
About two weeks ago, on a day off, I was doing chores around the house, but feeling extremely fatigued. I came in to sit with Kathy after a bit, and noticed that my pulse was very erratic. My heat was skipping about every other beat. I had Kathy feel my pulse, and she immediately wanted to take me in to the clinic to have a “real” doctor check me out. I told her I’d like to “wait” a while. For what, you ask? As I have told my family many times, “waiting” means I want to wait until the condition gets better or I die, whichever comes first. Well, Kathy wasn’t happy with that, so we ended up going in to see my doc. I figured that he’d listen to my heart, do an EKG and send me home.
But NO....!
As soon as he saw the EKG and listened to my heart, they got an oxygen mask on me, put an IV in my arm and sent me by ambulance to the hospital. There, they were to do a bunch of lab tests to see if I was having a heart attack. I was sure I wasn’t and was therefore confident that I’d soon be going home. Yeah, right. Well, all the lab tests came back normal, and my heart settled down into more of a normal rhythm so I prepared to leave, when the doc in the ER said I’d have to stay overnight for some prolonged monitoring and testing. Just great!
They put me in a back room in the ER and monitored my heart all might long. I didn’t get a lot of sleep. Intermittently they came in to check my blood pressure, pulse and so on, or to draw some more blood for tests. Then, in the morning, they set me up for a “stress test” where they hooked me up to an elaborate EKG machine and then put me on a treadmill for about ten minutes, with gradually increasing speeds, to see how well my heart was functioning. Well, hell, I was stressed even before we started after not having gotten enough sleep the night before, but I’m happy to say that my heart passed the test and I was finally allowed to go home after about eighteen hours in the hospital. Later this week I’m to do a 24-hour monitoring test to see how often my heart is doing these strange things. Then, we’ll see if I need medication to make it more normal.
Another medical misadventure I experienced recently involved some dental work. About ten days before we were due to leave for Alaska one of my two remaining wisdom teeth cracked and was causing me a lot of pain. I didn’t want to be traversing Alaska with a sore tooth so I went to my dentist, who confirmed that the tooth was cracked and needed to come out. He then referred me to a local oral surgeon to get it taken out. Now, I had two of these teeth taken out years ago without any problems and I expected the same with this cracked tooth.
Say it altogether now, “But NO...”
Over the last few decades this particular tooth kinda fused with the surrounding jawbone. The oral surgeon tried to extract it intact, then he cut it in half to try to take out half at a time, then he broke off the top of the tooth and drilled and pried until he finally was able to get all the parts out of my jawbone, where the roots, in addition to fusing to the bone, had curved in towards each other. Thank God for great anesthetic injections.
But that wasn’t all. We went home, with a packing of gauze in the hole in my jaw, which I was to replace about every two hours. The first time I tried to replace it, blood began flowing, literally, from my mouth. I replaced the packing, bit down hard, and was able to stop the bleeding. But every time I tried to replace the gauze the same thing happened. I started wondering if my blood wasn’t clotting properly, as my platelets were a little low, but they should have been more than adequate, I thought, to stop most bleeding.
By nine o’clock at night I was still bleeding heavily every time I tried to take out a pack. So, we called, that is to say, Kathy called the oral surgeon (since I had to keep my mouth tightly shut on the packing) and told him of our problem. He told us to meet him at the office in about thirty minutes, which we did. I got back in the operating chair, opened my mouth so he could take a look, and he said, “Wow, that’s impressive!” Blood was still flowing heavily and rapidly.
What had happened, apparently, was that with all the digging he had to do in my jaw, he cut a small artery, but the artery had been tightly constricted by the epinephrine in the anesthetic, and so had not bled until later when the anesthetic wore off. He quickly packed the bleeding hole with some stuff we use in the OR called Surgicel, which helps make blood clot. Then he packed the hole with gauze again and I bit down hard, to see if the bleeding would stop. While I was biting down, we were discussing what our next step would be. The arteries are hard to stop; they come right out of the bone and can’t be tied off with sutures, etc. We thought maybe we’d have to go to the hospital and have a radiologist put a catheter in the arteries in my neck, then work it up to the jaw to inject stuff to block the bleeder from inside. I didn’t want to think about that possibility.
Thankfully, when I finally opened my mouth, after ten minutes of pressure on the Surgicel, the bleeding had stopped. We left the clinic and headed for Wendy’s for some food, since I hadn’t had anything to eat or drink all day. Kathy treated me to a Frosty, a milkshake dessert for those of you who may not patronize Wendy’s burger places. The food stayed down and the bleeding stayed stopped! It was a long day. The hole in my jaw hurt for weeks, but didn’t delay our Alaska adventure. I just took lots of Motrin.
You may remember that we are suffering quite a drought around here. I’ve mentioned the water use restrictions that have been imposed upon us. Well, the great blizzard of last March helped the situation a bit, and we had a relatively wet spring, but the restrictions remained, and people around here were very compliant with them. So compliant, in fact, that the water company was losing money! Think about that for a moment; what company can possibly stay in business by selling less and less of its product! So, even as they were telling us that the drought was NOT over, they began removing many or even most of the water use restrictions because they needed the income. Interesting local politics!
In other “local news,” our friendly squirrel, Stubby, the one who bit me last spring, has become a neighbor. She used to live in a large cottonwood tree about 200 yards away, but this spring, shortly after she bit me, she took over a magpie's nest in our back yard in which to raise her pups, or kits, or whatever baby squirrels are called. I hope that’s as close as she gets; we don’t want her family moving into our attic.
Going back to the leukemia, for a moment, I found a follow-up report from the M. D. Anderson Cancer Institute, in Houston, describing recent findings on the people they had used the Cytoxan/Fludarabine/Rituxan chemotherapy treatments on, the treatment protocol that my doc also used on me. Three years after the start of their study, they have found that 75% of their patients who went into remission are still in remission. That is extremely good news, as it would seem to indicate that there is a real good chance I’ll still be in remission a couple of more years from now (since I‘ve already been in remission almost a year now). Hey, that means I can plan a few more trips and spend some more money!
To close, I’ll mention the Veteran’s Administration again, as I did several months ago. They have decided that my disease may be Agent Orange related, based on my Vietnam exposure, and therefore I (and Kathy, on my demise) may be able to get a pension based on medical disability. So, I was invited to go to the local VA hospital for an evaluation recently. What they did was a complete, but fairly brief, physical examination and a few lab tests. It was done very efficiently and right on schedule but the whole process was incredibly impersonal. Most of the folks I interacted with hardly acknowledged my presence as they drew my blood, etc. But now it’s over and I’m just waiting for the paperwork to see what it all will mean to Kathy and me. I’ll pass on the news as it comes in.
And I think that's plenty of “update” for now. I’ll close this note and get in off into cyberspace.
Until later,
Dave
Postscript #4
August 19 2003
No News Is STILL Good News
Hello again, to friends, family, co-workers and those of you receiving my writings whom I may not even have met. I’ve been getting occasional inquiries from folks who wonder what’s going on here in Colorado (with me I mean ) since I haven’t written any updates in about three months now. Fair enough. Just so no one will worry that I’m not doing well, I’ll send a report on what’s been going on with me and the leukemia over the past months.
Not much.
The last major event in my treatment and plan for the future was to try to collect some stem cells from my circulation while I was in remission. You may remember that I had to go through several appeals to get my insurance company to even approve the collection of my stem cells and allow me to bank them away for future use, only to find out that my body wasn’t even making enough stem cells for us to be able to collect them! As of my last message in May, we were waiting for my marrow to recover enough from the abuse at the hands of the chemotherapy to be able to try again to collect the cells. We’re still waiting. My “transplanter” doc, Jeff Matous, wanted my white count to get up at least to 4,000 or so before trying again. So, we’ve been doing blood counts on me monthly but have been seeing my white blood cell counts just fluctuate in the mid-3,000 range since about last April or so. And so, we’ll keep doing these counts until the collection becomes possible, hopefully sometime before the leukemia returns.
What have I been doing with my time? Well, one major thing I did was go to Alaska with Kathy in June/July. I had been mentioning starting to do more traveling with her since last year, when I got the diagnosis of leukemia, since we now know that my life expectancy is likely less than we had planned (though, who really knows what their life expectancy will be, anyway?).
So, we scheduled a trip through a great travel agency called Rainbow Mountain Adventures, run by Collette Murray. Collette put together a wonderful, beautiful, relaxing and varied trip for us. We didn’t go on a cruise, didn’t go with a group, and weren’t on anyone else’s schedule. We were able to do things largely at our own pace and weren’t constrained by a tour director, a cruise liner schedule or by the speed of the slowest person on a bus trip. It was a great time. We went whale watching with two other folks in a small boat, we cruised up fjords to watch glaciers calve icebergs into the sea, we got up close to brown bears, we flew up to and landed on a glacier and walked around on it, we watched bald eagles all day, and much more. And we spent five nights in a very friendly B&B in Juneau, The Alaska Wolfhouse, run by Phil and Clovis Dennis, very nice folks whom I’m now also pestering with my “adventures,” after having discussed my condition, the meaning of life and much more while with them. If anyone out there is considering a trip to Alaska (and I think all of you should; it’s simply grand!) I have to recommend Collette Murray and her crew (www.rainbowmtnadventures.com) for your planning. They were wonderful. And if you’re going through Juneau, stop in at the Wolfhouse, but do it soon. Phil and Clovis are moving to Washington state next year to be close to their grandkids. Kathy and I have to appreciate that motivation!
I’m still working in the clinic four days a week, with a couple of day shifts on Labor and Delivery per month, on weekends. Work is going well, but as I mentioned a few months ago, I feel tired a lot. Perhaps I know now why, after having an adventure of another sort recently.
About two weeks ago, on a day off, I was doing chores around the house, but feeling extremely fatigued. I came in to sit with Kathy after a bit, and noticed that my pulse was very erratic. My heat was skipping about every other beat. I had Kathy feel my pulse, and she immediately wanted to take me in to the clinic to have a “real” doctor check me out. I told her I’d like to “wait” a while. For what, you ask? As I have told my family many times, “waiting” means I want to wait until the condition gets better or I die, whichever comes first. Well, Kathy wasn’t happy with that, so we ended up going in to see my doc. I figured that he’d listen to my heart, do an EKG and send me home.
But NO....!
As soon as he saw the EKG and listened to my heart, they got an oxygen mask on me, put an IV in my arm and sent me by ambulance to the hospital. There, they were to do a bunch of lab tests to see if I was having a heart attack. I was sure I wasn’t and was therefore confident that I’d soon be going home. Yeah, right. Well, all the lab tests came back normal, and my heart settled down into more of a normal rhythm so I prepared to leave, when the doc in the ER said I’d have to stay overnight for some prolonged monitoring and testing. Just great!
They put me in a back room in the ER and monitored my heart all might long. I didn’t get a lot of sleep. Intermittently they came in to check my blood pressure, pulse and so on, or to draw some more blood for tests. Then, in the morning, they set me up for a “stress test” where they hooked me up to an elaborate EKG machine and then put me on a treadmill for about ten minutes, with gradually increasing speeds, to see how well my heart was functioning. Well, hell, I was stressed even before we started after not having gotten enough sleep the night before, but I’m happy to say that my heart passed the test and I was finally allowed to go home after about eighteen hours in the hospital. Later this week I’m to do a 24-hour monitoring test to see how often my heart is doing these strange things. Then, we’ll see if I need medication to make it more normal.
Another medical misadventure I experienced recently involved some dental work. About ten days before we were due to leave for Alaska one of my two remaining wisdom teeth cracked and was causing me a lot of pain. I didn’t want to be traversing Alaska with a sore tooth so I went to my dentist, who confirmed that the tooth was cracked and needed to come out. He then referred me to a local oral surgeon to get it taken out. Now, I had two of these teeth taken out years ago without any problems and I expected the same with this cracked tooth.
Say it altogether now, “But NO...”
Over the last few decades this particular tooth kinda fused with the surrounding jawbone. The oral surgeon tried to extract it intact, then he cut it in half to try to take out half at a time, then he broke off the top of the tooth and drilled and pried until he finally was able to get all the parts out of my jawbone, where the roots, in addition to fusing to the bone, had curved in towards each other. Thank God for great anesthetic injections.
But that wasn’t all. We went home, with a packing of gauze in the hole in my jaw, which I was to replace about every two hours. The first time I tried to replace it, blood began flowing, literally, from my mouth. I replaced the packing, bit down hard, and was able to stop the bleeding. But every time I tried to replace the gauze the same thing happened. I started wondering if my blood wasn’t clotting properly, as my platelets were a little low, but they should have been more than adequate, I thought, to stop most bleeding.
By nine o’clock at night I was still bleeding heavily every time I tried to take out a pack. So, we called, that is to say, Kathy called the oral surgeon (since I had to keep my mouth tightly shut on the packing) and told him of our problem. He told us to meet him at the office in about thirty minutes, which we did. I got back in the operating chair, opened my mouth so he could take a look, and he said, “Wow, that’s impressive!” Blood was still flowing heavily and rapidly.
What had happened, apparently, was that with all the digging he had to do in my jaw, he cut a small artery, but the artery had been tightly constricted by the epinephrine in the anesthetic, and so had not bled until later when the anesthetic wore off. He quickly packed the bleeding hole with some stuff we use in the OR called Surgicel, which helps make blood clot. Then he packed the hole with gauze again and I bit down hard, to see if the bleeding would stop. While I was biting down, we were discussing what our next step would be. The arteries are hard to stop; they come right out of the bone and can’t be tied off with sutures, etc. We thought maybe we’d have to go to the hospital and have a radiologist put a catheter in the arteries in my neck, then work it up to the jaw to inject stuff to block the bleeder from inside. I didn’t want to think about that possibility.
Thankfully, when I finally opened my mouth, after ten minutes of pressure on the Surgicel, the bleeding had stopped. We left the clinic and headed for Wendy’s for some food, since I hadn’t had anything to eat or drink all day. Kathy treated me to a Frosty, a milkshake dessert for those of you who may not patronize Wendy’s burger places. The food stayed down and the bleeding stayed stopped! It was a long day. The hole in my jaw hurt for weeks, but didn’t delay our Alaska adventure. I just took lots of Motrin.
You may remember that we are suffering quite a drought around here. I’ve mentioned the water use restrictions that have been imposed upon us. Well, the great blizzard of last March helped the situation a bit, and we had a relatively wet spring, but the restrictions remained, and people around here were very compliant with them. So compliant, in fact, that the water company was losing money! Think about that for a moment; what company can possibly stay in business by selling less and less of its product! So, even as they were telling us that the drought was NOT over, they began removing many or even most of the water use restrictions because they needed the income. Interesting local politics!
In other “local news,” our friendly squirrel, Stubby, the one who bit me last spring, has become a neighbor. She used to live in a large cottonwood tree about 200 yards away, but this spring, shortly after she bit me, she took over a magpie's nest in our back yard in which to raise her pups, or kits, or whatever baby squirrels are called. I hope that’s as close as she gets; we don’t want her family moving into our attic.
Going back to the leukemia, for a moment, I found a follow-up report from the M. D. Anderson Cancer Institute, in Houston, describing recent findings on the people they had used the Cytoxan/Fludarabine/Rituxan chemotherapy treatments on, the treatment protocol that my doc also used on me. Three years after the start of their study, they have found that 75% of their patients who went into remission are still in remission. That is extremely good news, as it would seem to indicate that there is a real good chance I’ll still be in remission a couple of more years from now (since I‘ve already been in remission almost a year now). Hey, that means I can plan a few more trips and spend some more money!
To close, I’ll mention the Veteran’s Administration again, as I did several months ago. They have decided that my disease may be Agent Orange related, based on my Vietnam exposure, and therefore I (and Kathy, on my demise) may be able to get a pension based on medical disability. So, I was invited to go to the local VA hospital for an evaluation recently. What they did was a complete, but fairly brief, physical examination and a few lab tests. It was done very efficiently and right on schedule but the whole process was incredibly impersonal. Most of the folks I interacted with hardly acknowledged my presence as they drew my blood, etc. But now it’s over and I’m just waiting for the paperwork to see what it all will mean to Kathy and me. I’ll pass on the news as it comes in.
And I think that's plenty of “update” for now. I’ll close this note and get in off into cyberspace.
Until later,
Dave
Tuesday, August 5, 2003
An Adventure of a Different Kind
It's amazing how sometimes things just snowball out of control and one leads to another. Soon you're somewhere you didn't want to be.
Yesterday was my day off. I got up, about 8:00 or so. I felt a little tired, but nothing too unusual. Since it was a day off, after having worked on Labor and Delivery over the weekend, I had a list of things to do. Most were yard things, so I started getting things done. Nothing too strenuous, just spreading some fertilizer, pulling weeds, replacing a couple of sprinkler heads. That kind of stuff. My new mower is not working, so I took it in to Sears for some work too. I was REALLY tired when I got back.
Kathy wanted to go out for breakfast, so we headed out to try a new place in Littleton, but it was closed. So we went to old reliable, El Tejado. Got the usual, huevos rancheros and chilequiles.
After we got back from breakfast, about noon ( a late breakfast, it turned out to be) I went out to do more yardwork. After about an hour I came back in and was exhausted. I sat next to Kathy and said "Feel my pulse." It was very erratic with a lot of skipped beats. She asked what we should do and I, characteristically said we should wait (which means, usually, wait until it gets better or I die, whichever comes first).
But it didn't get better, and I said that I guessed if I had a patient with this I'd send her to internal medicine to get checked out. So, Kathy loaded me up and off to the clinic we went. Without even an appointment! But I figured my doc could work me in, would do an EKG and tell me it was nothing to worry about and tell me to get out of there
I was right about doing the EKG, but I had the second part wrong. He looked at the EKG, asked a bunch of questions, and the next thing I knew they were loading me up in an ambulance and taking me to the ER. Uh, I hadn't planned on that part at all.
So, we got to the ER. There they did another EKG, drew some blood for lab tests, asked me all the same questions, poked on me for a little while and then left us alone, with me hooked up to a bunch of monitors and with oxygen tubes up my nose. Kathy had been able to ride in the ambulance with us, but had to leave the car at the clinic.
Nothing happened for a while, and I was feeling better, ready to go home, though my heartbeat was still a little irregular.
After about 30 minutes they said my labs looked okay and my EKG was showing nothing serious. But to be sure, they ran some medicine in my IV. It was magnesium sulfate. Epsom salts, to many of you. We use it a lot in OB to stop premature labor and to prevent seizures in women with toxemia in pregnancy. It's also a laxative, if taken orally. I didn't know they used it also for irregular heart beats! Made me feel crappy. Now I know what my patients feel like when I give it to them.
So, the medicine worked, my heart rate straightened out, and now I was even more ready to get out of there. Well, the resident, who had been taking care of me turned my care over to the staff doc, who came in to talk to me. She told me all my labs were normal and that my EKG has straightened out. But, I couldn't go home.
She wanted me to spend the night in the "Obs" (observation unit) area so they could watch me for the night, and to draw more blood. So off we went.
The Obs unit is actually in the ER, not on some quiet ward away from the crowds that appear all night long. I did have a room (fortunately) that had a door that closed. A lot of folks I saw were in open bays with just curtains. It was a scary place with a lot of strange looking folks there. Kathy stayed with me until about 10:30, but there really was no place for her to sleep, so we sent her home (with friends who were there also), and I tried to get to sleep. But it was not easy. They came in periodically to draw blood, to get vital signs (pulse, blood pressure, etc.) and to replace heart monitor leads that fell off as I tossed and turned. I finally fell asleep in the early morning hours, only to have them come back in at 5:30 to wake me up! They drew some more blood, did another EKG and took more vital signs. I decided to get up, put my contacts back in and see about breakfast, since I couldn't sleep anyway.
Breakfast!! Well, they wanted me to have stress test, done on a treadmill later in the morning, so, no breakfast for me. They did bring me a tray of "Clears," you know, the jello, chicken broth and juice tray.
Kathy appeared in the room again before seven. She must have really left home early! We turned on a TV they had brought in to me so we could get some news. But we kept falling asleep.
About 9:00 or so they came in to get me for the stress test. I was wheeled up to the fourth floor where the treadmills are and parked in the hallway. They wouldn't let me walk up there. Strange, I thought, since in a few moments they were going to put me on a treadmill and really give me a workout. But I waited, quietly.
Soon they took me into the room, made me sign a permit that said I might die during the testing process, and hooked me up for yet another EKG, which was still showing a number of irregular beats, but not quite as many as the day before. We started the treadmill, I walked, faster and faster. The doc wanted to get my heart rate up to at least 138, to get a good test. I was able to get it up to about 156 which gave her even more info, all of it good. No chest pain, no EKG abnormalities at all!
So I was finally cleared, after all that testing. Twenty four hours later, after I told Kathy my heart was acting funny, we were back home and competely tired out. My heart is still skipping beats, but not nearly as many as it was yesterday. I'll see my doc again and he'll probably do a 24 hour monitoring just to see what it shows.
And I've learned not to mention an irregular heartbeat unless I'm having chest pain with it...it's just too much trouble!
Dave
Yesterday was my day off. I got up, about 8:00 or so. I felt a little tired, but nothing too unusual. Since it was a day off, after having worked on Labor and Delivery over the weekend, I had a list of things to do. Most were yard things, so I started getting things done. Nothing too strenuous, just spreading some fertilizer, pulling weeds, replacing a couple of sprinkler heads. That kind of stuff. My new mower is not working, so I took it in to Sears for some work too. I was REALLY tired when I got back.
Kathy wanted to go out for breakfast, so we headed out to try a new place in Littleton, but it was closed. So we went to old reliable, El Tejado. Got the usual, huevos rancheros and chilequiles.
After we got back from breakfast, about noon ( a late breakfast, it turned out to be) I went out to do more yardwork. After about an hour I came back in and was exhausted. I sat next to Kathy and said "Feel my pulse." It was very erratic with a lot of skipped beats. She asked what we should do and I, characteristically said we should wait (which means, usually, wait until it gets better or I die, whichever comes first).
But it didn't get better, and I said that I guessed if I had a patient with this I'd send her to internal medicine to get checked out. So, Kathy loaded me up and off to the clinic we went. Without even an appointment! But I figured my doc could work me in, would do an EKG and tell me it was nothing to worry about and tell me to get out of there
I was right about doing the EKG, but I had the second part wrong. He looked at the EKG, asked a bunch of questions, and the next thing I knew they were loading me up in an ambulance and taking me to the ER. Uh, I hadn't planned on that part at all.
So, we got to the ER. There they did another EKG, drew some blood for lab tests, asked me all the same questions, poked on me for a little while and then left us alone, with me hooked up to a bunch of monitors and with oxygen tubes up my nose. Kathy had been able to ride in the ambulance with us, but had to leave the car at the clinic.
Nothing happened for a while, and I was feeling better, ready to go home, though my heartbeat was still a little irregular.
After about 30 minutes they said my labs looked okay and my EKG was showing nothing serious. But to be sure, they ran some medicine in my IV. It was magnesium sulfate. Epsom salts, to many of you. We use it a lot in OB to stop premature labor and to prevent seizures in women with toxemia in pregnancy. It's also a laxative, if taken orally. I didn't know they used it also for irregular heart beats! Made me feel crappy. Now I know what my patients feel like when I give it to them.
So, the medicine worked, my heart rate straightened out, and now I was even more ready to get out of there. Well, the resident, who had been taking care of me turned my care over to the staff doc, who came in to talk to me. She told me all my labs were normal and that my EKG has straightened out. But, I couldn't go home.
She wanted me to spend the night in the "Obs" (observation unit) area so they could watch me for the night, and to draw more blood. So off we went.
The Obs unit is actually in the ER, not on some quiet ward away from the crowds that appear all night long. I did have a room (fortunately) that had a door that closed. A lot of folks I saw were in open bays with just curtains. It was a scary place with a lot of strange looking folks there. Kathy stayed with me until about 10:30, but there really was no place for her to sleep, so we sent her home (with friends who were there also), and I tried to get to sleep. But it was not easy. They came in periodically to draw blood, to get vital signs (pulse, blood pressure, etc.) and to replace heart monitor leads that fell off as I tossed and turned. I finally fell asleep in the early morning hours, only to have them come back in at 5:30 to wake me up! They drew some more blood, did another EKG and took more vital signs. I decided to get up, put my contacts back in and see about breakfast, since I couldn't sleep anyway.
Breakfast!! Well, they wanted me to have stress test, done on a treadmill later in the morning, so, no breakfast for me. They did bring me a tray of "Clears," you know, the jello, chicken broth and juice tray.
Kathy appeared in the room again before seven. She must have really left home early! We turned on a TV they had brought in to me so we could get some news. But we kept falling asleep.
About 9:00 or so they came in to get me for the stress test. I was wheeled up to the fourth floor where the treadmills are and parked in the hallway. They wouldn't let me walk up there. Strange, I thought, since in a few moments they were going to put me on a treadmill and really give me a workout. But I waited, quietly.
Soon they took me into the room, made me sign a permit that said I might die during the testing process, and hooked me up for yet another EKG, which was still showing a number of irregular beats, but not quite as many as the day before. We started the treadmill, I walked, faster and faster. The doc wanted to get my heart rate up to at least 138, to get a good test. I was able to get it up to about 156 which gave her even more info, all of it good. No chest pain, no EKG abnormalities at all!
So I was finally cleared, after all that testing. Twenty four hours later, after I told Kathy my heart was acting funny, we were back home and competely tired out. My heart is still skipping beats, but not nearly as many as it was yesterday. I'll see my doc again and he'll probably do a 24 hour monitoring just to see what it shows.
And I've learned not to mention an irregular heartbeat unless I'm having chest pain with it...it's just too much trouble!
Dave
Tuesday, May 6, 2003
Postscript Number Three; The Squirrel Bite, the Snowstorm, and Some Sad News.
Dave’s Great Adventure
Postscript #3
May 6, 2003
No News Is Good News
Hello again, to my friends who may have been wondering what has happened to me in the last couple of months, in My Adventures With Leukemia. Well, the good news is that there isn’t really too much news to report.
The last time I wrote it was to tell you that we had tried and failed to collect stem cells from my peripheral circulation, while I was in remission. I’m happy to report that I’m still in complete remission and overall doing pretty well, but we still haven’t been able to collect any stem cells, cells which would be used to transplant back into me at some time in the future when I relapse. As nice as my remission is, my docs expect a relapse at some point in my future.
My white count has been very, very slow to recover. In February, when I last reported on my adventures, it was about 2,600 or so (normal is about 4,000- 10,000). That was four months after we had finished my chemotherapy. Now, seven months after the completion of my therapy, my white count has only recovered to 3,300 as of the end of April. That is still too low to collect stem cells. My “transplanter” doc, Jeff Matous, would like to see my counts in the 6,000 range, but would be willing to try to collect some cells if I can get up to the 4,500 level some time in the near future. He wants to get a collection done before my leukemia rears its ugly head again. He still tells me, however, that he expects “a good, long remission.” As before, though, when I ask him to quantity “good long remission” in terms of months or years, he just smiles. Truly, since my therapy was based on a study of only 130 people, and was only completed a year and a half before we started my treatments, nobody really has any long-term data on what to expect. So, I guess it’s unfair of me to try to pin Jeff down and give me a number of months/years my remission should last.
I continue to be amazed at how few infections I’ve had during and since my chemotherapy. With my white count so critically low, and having been that way through the cold and flu seasons, I’ve done incredibly well. I’ve had the one short cold I mentioned to you last January, I believe it was, but nothing else. It is true that I’ve been much more careful around crowds, and I’ve assiduously avoided people with obvious colds ever since we started this “adventure.” And I still wash my hands compulsively, keep my hands away from my face and eyes and try not to bite my fingernails. I have been worried that I’d be getting skin infections, lung infections, and so on. My doc still has me taking some antibiotics a couple times a week to help prevent pneumonia that I might be susceptible to.
The only infection I’ve had was one that surprised me. About two months ago my eye started bothering me one night, while I was sleeping. It felt like there was something in it. It seemed to be better by the morning, so I went about my business, but my eye was watering most of the day. I ignored it, though. This went on for a couple of more days, until I took a really good look at my eye. I had examined it a day or two before and had seen nothing. But this time I saw what was essentially a pimple on my cornea! I had visions (no irony intended) of going blind. I hurried in to see my buddy, the eye doc, who examined me, diagnosed an infiltrate, or really “pus” in my eye, and started me on antibiotic eye drops every four hours. He also told me to stop wearing my contacts, which I had already done. Happily, the infection resolved over about five days and I suffered no permanent effects.
Something else happened that I was sure was going to cause me a serious infection. I think I’ve mentioned our “pet” squirrel (Eichhoernchen) which has been coming up on our deck in the back yard for a few years. She’s relatively tame and eats out of our hands. She even will climb up on my lap when I’m in the back yard and eat off my lap. Well, our friend (whom we call “Stubby “ since she lost the end of her tail to a coyote or something) is pregnant again, as she seems to be every year at this time. Yes, I hear you asking how do I know she’s pregnant. Well, I’m an obstetrician, it’s my job to know these things! Really, what happens each year when she gets pregnant is that her nipples get very large. What also happens is that she gets very hungry. You know how we say that a pregnant woman is “eating for two?” Well, Stubby is eating for about eight or so. She become ravenous (heisshungrig).
Last week, before I went to work, I saw Stubby out there, scavenging through some bird seed which we had put out for our feathered friends. I thought I’d give her some peanuts, since they’d be more nourishing for a poor pregnant squirrel than bird seed. I got a handful of roasted peanuts, in the shell, and walked out on the deck, approaching Stubby. She saw me coming, and as I reached toward her with my handful of peanuts, she lunged at me, so anxious was she to get to the peanuts! What she got, however, was not the peanuts. The closest thing to her, and looking something like a peanut, was the end of my fourth finger. Stubby bit hard and deep!!!! I yelled and jumped back, Stubby scrambled away as fast as she could, and I headed back into the house.
I inspected the damage. I had two very deep cuts, a half inch each, one on each side of the fourth finger of my right hand (my examination hand, if you know what I mean), right where the blood vessels are. The cuts were bleeding profusely. I went to the sink to wash the wounds and let them bleed for a long time to wash out the bacteria. I was wondering, “What kinds of germs do squirrels carry? Do they carry rabies (Tollwut)?” I was thinking that we’d have to kill Stubby to see if she had rabies or else I’d have to get the rabies shots, injections which I hear are not at all pleasant.
But a more immediate problem presented itself. I couldn’t get the wounds to stop bleeding. I kept paper towels on the cuts, but every time I removed them, the bleeding continued briskly. I couldn’t even get it slowed enough to apply a Band-Aid. Finally I tightly wrapped a paper towel around the finger and drove to work with my left hand, thinking that I’d need help to get the thing treated properly. And of course, I did. The staff in the emergency area, after snickering over my description of how I received my wounds, tried to dress them. But the bleeding would not stop for them either. Finally, the doc put a tourniquet (Aderpresse) around my finger, irrigated it with a solution, and then put adhesive strips across the incisions to close them before removing the tourniquet. That worked. They then applied a bulky pressure dressing to the finger, and off to work I went.
So, all day long I was answering the question, “You did what?!”
The doc gave me some pretty powerful antibiotics since we didn’t know what germs squirrels carry around with them. And he didn’t seem at all concerned about rabies, since the squirrel wasn’t acting abnormally, so Stubby’s life was spared. I still feed her, but now I’m much more careful about letting my fingers get close to her mouth. I’m very lucky that she didn’t bite my second or third fingers, my “exam fingers.” With the pressure dressing I had to wear, I wouldn’t have been able to do any gynecological exams and would have been out of business for a couple of days. And I remain amazed that the wounds didn’t get infected. Animal bites are probably among the most contaminated wounds you can get.
So how am I doing? Overall quite well. I’m still working four days a week in our clinic and doing a couple of daytime shifts each month on Labor and Delivery on weekend days. I feel tired a lot. I’m not sure what that’s all about. I get short of breath more than I think I should, but I get through the days okay. If this keeps up I may have to go back to my Internist to see if anything else is going on.
But my outlook is much better than it was for so long. I don’t worry about my disease every day like I used to. I’ve even started making longer term plans again. I think I’ve mentioned to most of you that I was thinking about taking a trip to Antarctica next January. Well, we’ve made the reservations. And I’ll be taking Kathy to Alaska in June/July for a 12 day vacation, seeing things we’ve talked about and wanted to do for many years. I’ve now passed the first anniversary of the date I got my diagnosis and I look forward to the first anniversary of my remission in a few months. So far, so good!
Hey, I found out something interesting recently, about one of my chemotherapy drugs. One of the drugs which I’ve mentioned is Fludara, or fludarabine. It’s very active against lymphocytes and is commonly used in treating leukemia. But how it was developed is, I think, interesting. It seems that when doctors were studying patients with severe combined immunodeficiency (Immunitaet-los?) syndrome (people like the “Bubble Boy), they found that they had an abnormal chemical in their circulation which destroyed white cells. They were able to isolate the chemical and then synthesize it, and it became a new drug in the treatment of leukemia, Fludara!
I also found out something else about my disease. The last time I had a bone marrow biopsy done, Jeff ordered a chromosome study done on the cells. It seems there are different chromosomal aberrations seen in chronic lymphocytic leukemia, and they all are essentially different diseases, yet they all manifest the disease in the same way, with an elevated white count. Probably they should all be treated differently, as they can act differently, but this is a brand new finding and the clinicians (those who treat the disease) haven’t caught up with the researchers on this yet, and so they don’t know how to treat the different chromosome patterns. It turns out that my chromosome pattern was a normal 46 XY pattern. That may be good news, as folks with a normal pattern have a life expectancy of about 10+ years, as opposed to the six or so years that the average life expectancy is. Some of the abnormal patterns result in a life expectancy of only two or three years. Anyway, I say that MAY be good news, as my chromosomes were studied at a time when they really couldn’t find any leukemic cells in my marrow anyway. So it may not have been an accurate representation of the cells of my disease. We’ll probably have to repeat the chromosome study again when/if my disease relapses.
I think I had mentioned previously that we are in quite a drought here in Colorado. Our dry summer last year, with all the forest fires, was followed by a pretty dry and warm winter. That is, until March! On March 17th, our son Jeremy and his girlfriend Marisa flew into Denver for Spring Break. They wanted to see Colorado during their vacation from the college grind. That night it started to snow. And it kept snowing for days. By the time it stopped snowing we had three to four feet of snow on our driveway and there were places in the mountains where they had over eight feet of snow. Many, many roofs collapsed in the Denver area from the weight of the snow. The snow was so deep in our neighborhood that I could not get out to go to work. for three days. Finally I had to hike out of the neighborhood to a main street so I could be picked up to go to work. Thankfully, later that day, a snow plow came through and cleared a path out for us. Only then did Jeremy and Marisa get to get out of the house and see just a little of Denver. They never did get to see the mountains. What a great Spring Break! Actually we were glad to have them here. We had someone to play card games with while we were housebound and someone to help us shovel the snow off our driveways and sidewalks.
The huge snowstorm has alleviated a bit of our drought and has replenished our water supplies in the area to some extent, but we’re still under drought water restrictions for the coming summer months, some of which, make no real sense. I understand why they want us to restrict the amount of water we use to wash cars and water our lawns with, but there are other water laws that seem silly. The law says we have the right to use our water one time only. In other words, we can’t take a bath in the tub and then water our plants with the tub water. Or we can’t cool our drinks with ice cubes and then put the cubes in the watering can to do the same. I think that’s wise water conservation. The water authority wants us to put the water back in the drain so they can reuse it. However, I don’t think there are enough police in Denver to track down all the scofflaws who reuse some of their water to water their plants or flush their toilets with bath water.
I would like to finish up this message with some sad news. First, last month Kathy’s mom died, rather suddenly, of a stroke (Hirnschlag). She had been in relatively poor health for a number of years but this was still a surprise and shock to all of us. She was 84 years old. We gathered together in Stillwater, Oklahoma last month for her funeral and to help Kathy’s 92 year-old father get her affairs in order. He’s a lost soul right now. They had been married for 62 years!
Also, the week before Kathy’s mom died, my colleague, Laurel Harkness, who had been fighting breast cancer for a number of years died also. I have mentioned Laurel in my letters from time to time. She helped out in my clinic last year when I was out with my chemotherapy. In fact, we saw each other in the chemotherapy rooms and one day we even sat side by side getting our infusions. But her chemotherapy finally stopped being effective and she developed many metastases to her liver last December. She died at home a few weeks ago at the age of 44, I believe.
And that’s all the news from the Denver suburbs for now. I’ll let you know if there are any changes if/when there is anything to report.
Dave
Postscript #3
May 6, 2003
No News Is Good News
Hello again, to my friends who may have been wondering what has happened to me in the last couple of months, in My Adventures With Leukemia. Well, the good news is that there isn’t really too much news to report.
The last time I wrote it was to tell you that we had tried and failed to collect stem cells from my peripheral circulation, while I was in remission. I’m happy to report that I’m still in complete remission and overall doing pretty well, but we still haven’t been able to collect any stem cells, cells which would be used to transplant back into me at some time in the future when I relapse. As nice as my remission is, my docs expect a relapse at some point in my future.
My white count has been very, very slow to recover. In February, when I last reported on my adventures, it was about 2,600 or so (normal is about 4,000- 10,000). That was four months after we had finished my chemotherapy. Now, seven months after the completion of my therapy, my white count has only recovered to 3,300 as of the end of April. That is still too low to collect stem cells. My “transplanter” doc, Jeff Matous, would like to see my counts in the 6,000 range, but would be willing to try to collect some cells if I can get up to the 4,500 level some time in the near future. He wants to get a collection done before my leukemia rears its ugly head again. He still tells me, however, that he expects “a good, long remission.” As before, though, when I ask him to quantity “good long remission” in terms of months or years, he just smiles. Truly, since my therapy was based on a study of only 130 people, and was only completed a year and a half before we started my treatments, nobody really has any long-term data on what to expect. So, I guess it’s unfair of me to try to pin Jeff down and give me a number of months/years my remission should last.
I continue to be amazed at how few infections I’ve had during and since my chemotherapy. With my white count so critically low, and having been that way through the cold and flu seasons, I’ve done incredibly well. I’ve had the one short cold I mentioned to you last January, I believe it was, but nothing else. It is true that I’ve been much more careful around crowds, and I’ve assiduously avoided people with obvious colds ever since we started this “adventure.” And I still wash my hands compulsively, keep my hands away from my face and eyes and try not to bite my fingernails. I have been worried that I’d be getting skin infections, lung infections, and so on. My doc still has me taking some antibiotics a couple times a week to help prevent pneumonia that I might be susceptible to.
The only infection I’ve had was one that surprised me. About two months ago my eye started bothering me one night, while I was sleeping. It felt like there was something in it. It seemed to be better by the morning, so I went about my business, but my eye was watering most of the day. I ignored it, though. This went on for a couple of more days, until I took a really good look at my eye. I had examined it a day or two before and had seen nothing. But this time I saw what was essentially a pimple on my cornea! I had visions (no irony intended) of going blind. I hurried in to see my buddy, the eye doc, who examined me, diagnosed an infiltrate, or really “pus” in my eye, and started me on antibiotic eye drops every four hours. He also told me to stop wearing my contacts, which I had already done. Happily, the infection resolved over about five days and I suffered no permanent effects.
Something else happened that I was sure was going to cause me a serious infection. I think I’ve mentioned our “pet” squirrel (Eichhoernchen) which has been coming up on our deck in the back yard for a few years. She’s relatively tame and eats out of our hands. She even will climb up on my lap when I’m in the back yard and eat off my lap. Well, our friend (whom we call “Stubby “ since she lost the end of her tail to a coyote or something) is pregnant again, as she seems to be every year at this time. Yes, I hear you asking how do I know she’s pregnant. Well, I’m an obstetrician, it’s my job to know these things! Really, what happens each year when she gets pregnant is that her nipples get very large. What also happens is that she gets very hungry. You know how we say that a pregnant woman is “eating for two?” Well, Stubby is eating for about eight or so. She become ravenous (heisshungrig).
Last week, before I went to work, I saw Stubby out there, scavenging through some bird seed which we had put out for our feathered friends. I thought I’d give her some peanuts, since they’d be more nourishing for a poor pregnant squirrel than bird seed. I got a handful of roasted peanuts, in the shell, and walked out on the deck, approaching Stubby. She saw me coming, and as I reached toward her with my handful of peanuts, she lunged at me, so anxious was she to get to the peanuts! What she got, however, was not the peanuts. The closest thing to her, and looking something like a peanut, was the end of my fourth finger. Stubby bit hard and deep!!!! I yelled and jumped back, Stubby scrambled away as fast as she could, and I headed back into the house.
I inspected the damage. I had two very deep cuts, a half inch each, one on each side of the fourth finger of my right hand (my examination hand, if you know what I mean), right where the blood vessels are. The cuts were bleeding profusely. I went to the sink to wash the wounds and let them bleed for a long time to wash out the bacteria. I was wondering, “What kinds of germs do squirrels carry? Do they carry rabies (Tollwut)?” I was thinking that we’d have to kill Stubby to see if she had rabies or else I’d have to get the rabies shots, injections which I hear are not at all pleasant.
But a more immediate problem presented itself. I couldn’t get the wounds to stop bleeding. I kept paper towels on the cuts, but every time I removed them, the bleeding continued briskly. I couldn’t even get it slowed enough to apply a Band-Aid. Finally I tightly wrapped a paper towel around the finger and drove to work with my left hand, thinking that I’d need help to get the thing treated properly. And of course, I did. The staff in the emergency area, after snickering over my description of how I received my wounds, tried to dress them. But the bleeding would not stop for them either. Finally, the doc put a tourniquet (Aderpresse) around my finger, irrigated it with a solution, and then put adhesive strips across the incisions to close them before removing the tourniquet. That worked. They then applied a bulky pressure dressing to the finger, and off to work I went.
So, all day long I was answering the question, “You did what?!”
The doc gave me some pretty powerful antibiotics since we didn’t know what germs squirrels carry around with them. And he didn’t seem at all concerned about rabies, since the squirrel wasn’t acting abnormally, so Stubby’s life was spared. I still feed her, but now I’m much more careful about letting my fingers get close to her mouth. I’m very lucky that she didn’t bite my second or third fingers, my “exam fingers.” With the pressure dressing I had to wear, I wouldn’t have been able to do any gynecological exams and would have been out of business for a couple of days. And I remain amazed that the wounds didn’t get infected. Animal bites are probably among the most contaminated wounds you can get.
So how am I doing? Overall quite well. I’m still working four days a week in our clinic and doing a couple of daytime shifts each month on Labor and Delivery on weekend days. I feel tired a lot. I’m not sure what that’s all about. I get short of breath more than I think I should, but I get through the days okay. If this keeps up I may have to go back to my Internist to see if anything else is going on.
But my outlook is much better than it was for so long. I don’t worry about my disease every day like I used to. I’ve even started making longer term plans again. I think I’ve mentioned to most of you that I was thinking about taking a trip to Antarctica next January. Well, we’ve made the reservations. And I’ll be taking Kathy to Alaska in June/July for a 12 day vacation, seeing things we’ve talked about and wanted to do for many years. I’ve now passed the first anniversary of the date I got my diagnosis and I look forward to the first anniversary of my remission in a few months. So far, so good!
Hey, I found out something interesting recently, about one of my chemotherapy drugs. One of the drugs which I’ve mentioned is Fludara, or fludarabine. It’s very active against lymphocytes and is commonly used in treating leukemia. But how it was developed is, I think, interesting. It seems that when doctors were studying patients with severe combined immunodeficiency (Immunitaet-los?) syndrome (people like the “Bubble Boy), they found that they had an abnormal chemical in their circulation which destroyed white cells. They were able to isolate the chemical and then synthesize it, and it became a new drug in the treatment of leukemia, Fludara!
I also found out something else about my disease. The last time I had a bone marrow biopsy done, Jeff ordered a chromosome study done on the cells. It seems there are different chromosomal aberrations seen in chronic lymphocytic leukemia, and they all are essentially different diseases, yet they all manifest the disease in the same way, with an elevated white count. Probably they should all be treated differently, as they can act differently, but this is a brand new finding and the clinicians (those who treat the disease) haven’t caught up with the researchers on this yet, and so they don’t know how to treat the different chromosome patterns. It turns out that my chromosome pattern was a normal 46 XY pattern. That may be good news, as folks with a normal pattern have a life expectancy of about 10+ years, as opposed to the six or so years that the average life expectancy is. Some of the abnormal patterns result in a life expectancy of only two or three years. Anyway, I say that MAY be good news, as my chromosomes were studied at a time when they really couldn’t find any leukemic cells in my marrow anyway. So it may not have been an accurate representation of the cells of my disease. We’ll probably have to repeat the chromosome study again when/if my disease relapses.
I think I had mentioned previously that we are in quite a drought here in Colorado. Our dry summer last year, with all the forest fires, was followed by a pretty dry and warm winter. That is, until March! On March 17th, our son Jeremy and his girlfriend Marisa flew into Denver for Spring Break. They wanted to see Colorado during their vacation from the college grind. That night it started to snow. And it kept snowing for days. By the time it stopped snowing we had three to four feet of snow on our driveway and there were places in the mountains where they had over eight feet of snow. Many, many roofs collapsed in the Denver area from the weight of the snow. The snow was so deep in our neighborhood that I could not get out to go to work. for three days. Finally I had to hike out of the neighborhood to a main street so I could be picked up to go to work. Thankfully, later that day, a snow plow came through and cleared a path out for us. Only then did Jeremy and Marisa get to get out of the house and see just a little of Denver. They never did get to see the mountains. What a great Spring Break! Actually we were glad to have them here. We had someone to play card games with while we were housebound and someone to help us shovel the snow off our driveways and sidewalks.
The huge snowstorm has alleviated a bit of our drought and has replenished our water supplies in the area to some extent, but we’re still under drought water restrictions for the coming summer months, some of which, make no real sense. I understand why they want us to restrict the amount of water we use to wash cars and water our lawns with, but there are other water laws that seem silly. The law says we have the right to use our water one time only. In other words, we can’t take a bath in the tub and then water our plants with the tub water. Or we can’t cool our drinks with ice cubes and then put the cubes in the watering can to do the same. I think that’s wise water conservation. The water authority wants us to put the water back in the drain so they can reuse it. However, I don’t think there are enough police in Denver to track down all the scofflaws who reuse some of their water to water their plants or flush their toilets with bath water.
I would like to finish up this message with some sad news. First, last month Kathy’s mom died, rather suddenly, of a stroke (Hirnschlag). She had been in relatively poor health for a number of years but this was still a surprise and shock to all of us. She was 84 years old. We gathered together in Stillwater, Oklahoma last month for her funeral and to help Kathy’s 92 year-old father get her affairs in order. He’s a lost soul right now. They had been married for 62 years!
Also, the week before Kathy’s mom died, my colleague, Laurel Harkness, who had been fighting breast cancer for a number of years died also. I have mentioned Laurel in my letters from time to time. She helped out in my clinic last year when I was out with my chemotherapy. In fact, we saw each other in the chemotherapy rooms and one day we even sat side by side getting our infusions. But her chemotherapy finally stopped being effective and she developed many metastases to her liver last December. She died at home a few weeks ago at the age of 44, I believe.
And that’s all the news from the Denver suburbs for now. I’ll let you know if there are any changes if/when there is anything to report.
Dave
Friday, February 21, 2003
Postscript Number Two; Searching for Stem Cells!
Dave’s Great Adventure
February 21, 2003
Postscript #2
Stem Cells???
Hello again to all my friends around the world who may be interested in reading about my adventures with leukemia. A few things of interest have happened over the past few weeks so I thought I’d send out an update on our activities.
First, at the end of my last message I mentioned that I had gotten a cold, despite my extreme precautions at avoiding crowds, sick folks, doorknobs and money handling. I feared that it might develop into something worse than a common cold, like bronchitis or pneumonia, since my antibody producing cells had, for the most part, been severely damaged by the months of chemotherapy. Well, I’m happy to be able to report back to you that the cold wasn’t all that bad. It lasted about seven days, no more than a usual cold. During that time I was taking a lot of vitamin C, echinacea, the new cold medicine Zicam and zinc, for whatever they’re worth, but they seem to have helped. I’m becoming a believer in some of these homeopathic remedies.
I told you last time that we were trying to collect some of my stem cells while I was in my “fantastic remission” for use in a possible future transplant. Now, my employer/ insurance company denied my doc’s request to have this procedure set up, citing the fact that they didn’t feel it was an “evidence based” treatment. That led to a lot of things happening.
I was called by a person who worked on my request, the very same person who signed the letter denying the treatment, and she suggested that I appeal the decision immediately! I found this to be a bit curious and asked her why she recommended this. She said that “given my circumstances” that it might be reversed. She didn’t explain what she meant by that and didn’t say the decision would, in fact, be overturned, but it gave me the definite impression that if I pushed the issue, the company was willing to give in. So I immediately appealed the decision and proceeded with plans for harvesting my stem cells. The plans, unfortunately included getting another bone marrow biopsy and a whole bunch of blood tests. I didn’t count on another bone marrow biopsy!
But I got the blood drawn for all the tests and endured yet another bone marrow biopsy, which this time will include testing the chromosomes on my marrow cells. We set up the “apheresis” to collect the stem cells for last Monday through about Wednesday of this week, all the time expecting that the insurance company was going to come through for me. I also had to start giving myself more shots of Neupogen, the same stuff I was injecting last October when my white count dropped to 1,000. This time, however, I had to give myself three times as much each day.. The five day course of the medication cost about $4,000! It is used to force stem cells out of my marrow into the bloodstream where they can be collected by the “apheresis” machine, basically a centrifuge which sorts cells by their size and weight.
While we were doing all this I got a long letter from the company explaining, again, why they were turning down our request. That was an unexpected surprise, as I really thought they were going to help me. In addition, by now I found out that my guess that the procedure would cost about $6,000 or so was way off. In fact, it’s more like $16,000! The letter explained that I had one more appeal that I could use if I wanted to. Well, I wanted to! Otherwise I told Kathy that I’d have to put her out on the street selling muffins and lemonade to help pay for the collection. I’ll get back to that last appeal later.
I started giving myself the Neupogen last week and immediately noticed that the side effects were much more noticeable than with the smaller dose I had used earlier. There was a lot of weakness, fatigue, and bone pain as the marrow started cranking out lots of white cells and, hopefully, stem cells. My bones actually throbbed in pain when I moved around very much. There’s always something new, isn’t there? I was, however, able to work through the side effects for the most part. They didn’t really get bad until almost a week into the therapy. By then I was starting the apheresis.
I had decided that I was going to get the stem cells collected whether the company paid for it or not. I needed to collect them now, not later when my blood was again filled with leukemic cells. So, we went ahead with the plans for the apheresis, at $4,000 a day. Yes, $4,000 a day! I was scheduled to start last Monday.
At about 6:45 in the morning we showed up at the hospital across the street from where I work; it’s called Presbyterian-Saint Luke’s Hospital. We went to the apheresis room where this contraption is located. The machine is about four feet tall, four feet wide and about three feet deep. It’s an impressive bit of equipment. The medical techs drew some blood for various tests and then began hooking me up to the tubing. Now, this is nothing to be taken lightly! They put in two very large intravenous needles, one in each of my arms. One to take blood out and send it to the machine, the other to put the processed blood, from which the stem cells had been extracted, back in my other arm. Since they had bare needles in my arms, not the plastic “intracath” tubing that I’m used to, I could not move my arms very much at all. If I did, the tip of the needle could move and penetrate my vein! The procedure takes about four hours!
So, I was relatively immobile. The problem was, they had told me to drink a lot of fluids before the procedure so they could get the access lines in my veins. Well, what happens after you drink a lot? I have had experience with this during my chemotherapy sessions, and perhaps you have had experience with this after too much beer or lemonade. Of course, after drinking a lot of fluids, I had to “excrete” a lot of fluids. But my hands were not available to help myself with this problem. And I couldn’t move around very much. And the folks running the machine were not nurses but medical techs. What to do? Well, they said they would step out while Kathy helped me with this “problem.” So Kathy got to “play nurse” with me, undoing my pants and helping me point “Rover” in the right direction. We did okay with this process, but I’d hydrated myself so well that an hour later I needed to do it again! So Kathy again came to my aid.
I’d been on the machine about three and a half hours when one of the techs came in and said we’d have to stop the collection. It seems that one of the tests we had done that morning showed that my stem cell count was too low to be collecting them! There is a test which I’d never heard of before, called a CD-34 assay, which measures the level of stem cells in one’s blood. The level should be about 10 or greater to be doing the collection efficiently. My stem cells were only at 3. Much too low. The doc who was running the show that day ( my doc was skiing that morning; there was great fresh snow in the mountains!) said I should keep giving myself the Neupogen shots and we would try again the next day, but we would get the CD-34 test results back before we put the machinery in action. That would keep us from using up $4,000 of machine time for nothing. The Rocky Mountain Cancer Center, where the “transplanters” like my doc, Jeff Matous work, gave me another day’s worth of Neupogen (about $1,000 worth) for free and we went home, disappointed.
The next day we again showed up at about 6:45 but instead of going straight to the apheresis machine we did a CD-34 assay. It takes about three hours to get the test back so we didn’t find out until after ten that it had gone up, but only to 5. My doc, who had returned from skiing, was encouraged by the rise and said we should keep giving the Neupogen in hopes of getting up to 10. So they gave me another $1,000 worth of Neupogen and we went home again. I decided that if I wasn’t going to be on the machine I might as well be working. I went by the my clinic and asked if they needed any help and of course they did, so I added myself into the afternoon schedule, then went home to change clothes and take a nap.
I slept for just a short time, but when I awoke to go to work for the afternoon, I felt just awful. The Neupogen effects were really kicking in. My bones, especially my breastbone, were hurting much more, and I felt extremely tired. But I went in to work, and though we had a full clinic, I managed to get through it. But I was exhausted when I got home.
The next day was a big day. We were to be at the hospital at the usual time, while it was still dark. We had to get the blood drawn and then wait the usual three hours to find out the results. Meanwhile, a committee that was going to evaluate my final appeal on whether the company would help pay for the collection was meeting a couple of hours later, across town. I had written a couple of letters to the committee explaining why I thought they should pay for it, but I had been told I could also attend the meeting if I wanted to. I really didn’t want to. I was feeling bad and didn’t want to answer questions at a committee meeting, not knowing if they’d be hostile or friendly, but I figured I should be there so I could defend my position as to why I thought the company should pay.
So after giving up another blood sample, we drove across town with my letters and some medical literature in support of the collection. I went to the clerk's office and explained that I really didn’t feel well, but I thought it would be best for me to at least be there when the meeting was held. She agreed and told Kathy and me where to sit, near the conference room. A few minutes later she invited me into the room to meet the committee. I didn’t know any of the folks there, but I recognized their names as two Kaiser Permanente doctors and an administrator. I was prepared to answer questions, but was taken by surprise when they told me to make my “presentation.” I hadn’t planned on making a presentation.
But I started talking, telling them what I had learned about leukemia, what the possible treatments were, why there was no real “standard” treatment, and why I thought collecting my stem cells now was as reasonable a plan of treatment as any other. It didn’t hurt my case at all that I seemed to know a whole lot more about leukemia and its treatment than they did. I made my case as best I could and then answered their questions. They told me that they would have an answer for me in about five days. I left, not knowing what they would decide, but I thought that they seemed open to the possibility of doing the stem cell collection. We went back across town, back to the hospital to check on my blood test. It had gone up again, but only to 6. They said to keep going. I got another $1,000 worth of Neupogen and went home and went to bed.
The next day, Thursday, Kathy and I again went to the hospital, which is in downtown Denver, to get my CD-34 test again. By then my doc had decided that if it went up at all we’d start collecting again, so Kathy and I waited around the hospital until the results were back, expecting that I‘d be on the machine before long. Bad news. It went down! To just 3 again.
My doc now decided that my bone marrow was just too beat up to make stem cells right now, even though it had been four months since my last chemotherapy, so we’d have to postpone the collection for a couple of months or so. Man, that was a disappointment for several reasons. First, I’d wasted four days hoping to get the cells collected. Secondly, though I hadn’t yet had to pay anything, we had used up about $7,000 worth of Neupogen, $4,000 of apheresis machine time, plus we’d been doing blood tests every day which I hadn’t yet paid for and I had heard I was probably going to have to pay for the bone marrow biopsy too. We could potentially be out thousands of dollars and we hadn’t really accomplished anything except gathering the very few cells we had gotten on the first day. What helped a lot, however, was that the docs said they would waive their fees for me, the hospital told me that since I didn’t have insurance for this they would “only” charge me $2,000 a day for the apheresis procedure, and that the clinic had given me three doses of the Neupogen for free, about $3,000 worth. I didn’t know what all the blood tests would cost, however.
That brings us up to today. I went back to work today, still feeling pretty tired from all the Neupogen I’d been giving myself. We had a relatively light day so I did okay despite my fatigue. The phone rang at about 10:30. It was the clerk from the appeals committee. She said that the committee had approved my request to have the company pay for the stem cell collection after all! That was great news. However, the bad news is that I don’t have any stem cells to collect right now.
So, I have been in contact with the transplant clinic again. We plan to try the apheresis again in two or three months, when my marrow will presumably have more stem cells. But we have to start from the beginning. I’ll have to have another bone marrow biopsy, all the lab tests will need to be done again, and I’ll have to start injecting another $4,000 worth of Neupogen. It’s just incredible to think that each injection is almost $1,000.
But now we have a plan in place, and I’ll have help in paying for the process. I don’t mind the wait too much, as long I don’t somehow relapse during that time. And that is not expected to happen. We’ll keep checking my white count each month until the next time we try to harvest the cells to see what they do. Oh yeah, I mentioned in my last letter that my white count had dropped down some more, unexpectedly, to around 2,200 or so. Well, after seven days, and $7,000 worth of Neupogen, my white count is up to 27,000! (Normal is up to about 10,000 or a bit more) I guess I’m not at too much risk of infection right now.
Well, that’s our latest adventure. And it’s plenty long enough so I’ll close while I still have a few readers who haven't drifted off to sleep. But, as Arnold Schwartzenegger says, in the movie “The Terminator,” “I’ll be back!”
Until later,
Dave
February 21, 2003
Postscript #2
Stem Cells???
Hello again to all my friends around the world who may be interested in reading about my adventures with leukemia. A few things of interest have happened over the past few weeks so I thought I’d send out an update on our activities.
First, at the end of my last message I mentioned that I had gotten a cold, despite my extreme precautions at avoiding crowds, sick folks, doorknobs and money handling. I feared that it might develop into something worse than a common cold, like bronchitis or pneumonia, since my antibody producing cells had, for the most part, been severely damaged by the months of chemotherapy. Well, I’m happy to be able to report back to you that the cold wasn’t all that bad. It lasted about seven days, no more than a usual cold. During that time I was taking a lot of vitamin C, echinacea, the new cold medicine Zicam and zinc, for whatever they’re worth, but they seem to have helped. I’m becoming a believer in some of these homeopathic remedies.
I told you last time that we were trying to collect some of my stem cells while I was in my “fantastic remission” for use in a possible future transplant. Now, my employer/ insurance company denied my doc’s request to have this procedure set up, citing the fact that they didn’t feel it was an “evidence based” treatment. That led to a lot of things happening.
I was called by a person who worked on my request, the very same person who signed the letter denying the treatment, and she suggested that I appeal the decision immediately! I found this to be a bit curious and asked her why she recommended this. She said that “given my circumstances” that it might be reversed. She didn’t explain what she meant by that and didn’t say the decision would, in fact, be overturned, but it gave me the definite impression that if I pushed the issue, the company was willing to give in. So I immediately appealed the decision and proceeded with plans for harvesting my stem cells. The plans, unfortunately included getting another bone marrow biopsy and a whole bunch of blood tests. I didn’t count on another bone marrow biopsy!
But I got the blood drawn for all the tests and endured yet another bone marrow biopsy, which this time will include testing the chromosomes on my marrow cells. We set up the “apheresis” to collect the stem cells for last Monday through about Wednesday of this week, all the time expecting that the insurance company was going to come through for me. I also had to start giving myself more shots of Neupogen, the same stuff I was injecting last October when my white count dropped to 1,000. This time, however, I had to give myself three times as much each day.. The five day course of the medication cost about $4,000! It is used to force stem cells out of my marrow into the bloodstream where they can be collected by the “apheresis” machine, basically a centrifuge which sorts cells by their size and weight.
While we were doing all this I got a long letter from the company explaining, again, why they were turning down our request. That was an unexpected surprise, as I really thought they were going to help me. In addition, by now I found out that my guess that the procedure would cost about $6,000 or so was way off. In fact, it’s more like $16,000! The letter explained that I had one more appeal that I could use if I wanted to. Well, I wanted to! Otherwise I told Kathy that I’d have to put her out on the street selling muffins and lemonade to help pay for the collection. I’ll get back to that last appeal later.
I started giving myself the Neupogen last week and immediately noticed that the side effects were much more noticeable than with the smaller dose I had used earlier. There was a lot of weakness, fatigue, and bone pain as the marrow started cranking out lots of white cells and, hopefully, stem cells. My bones actually throbbed in pain when I moved around very much. There’s always something new, isn’t there? I was, however, able to work through the side effects for the most part. They didn’t really get bad until almost a week into the therapy. By then I was starting the apheresis.
I had decided that I was going to get the stem cells collected whether the company paid for it or not. I needed to collect them now, not later when my blood was again filled with leukemic cells. So, we went ahead with the plans for the apheresis, at $4,000 a day. Yes, $4,000 a day! I was scheduled to start last Monday.
At about 6:45 in the morning we showed up at the hospital across the street from where I work; it’s called Presbyterian-Saint Luke’s Hospital. We went to the apheresis room where this contraption is located. The machine is about four feet tall, four feet wide and about three feet deep. It’s an impressive bit of equipment. The medical techs drew some blood for various tests and then began hooking me up to the tubing. Now, this is nothing to be taken lightly! They put in two very large intravenous needles, one in each of my arms. One to take blood out and send it to the machine, the other to put the processed blood, from which the stem cells had been extracted, back in my other arm. Since they had bare needles in my arms, not the plastic “intracath” tubing that I’m used to, I could not move my arms very much at all. If I did, the tip of the needle could move and penetrate my vein! The procedure takes about four hours!
So, I was relatively immobile. The problem was, they had told me to drink a lot of fluids before the procedure so they could get the access lines in my veins. Well, what happens after you drink a lot? I have had experience with this during my chemotherapy sessions, and perhaps you have had experience with this after too much beer or lemonade. Of course, after drinking a lot of fluids, I had to “excrete” a lot of fluids. But my hands were not available to help myself with this problem. And I couldn’t move around very much. And the folks running the machine were not nurses but medical techs. What to do? Well, they said they would step out while Kathy helped me with this “problem.” So Kathy got to “play nurse” with me, undoing my pants and helping me point “Rover” in the right direction. We did okay with this process, but I’d hydrated myself so well that an hour later I needed to do it again! So Kathy again came to my aid.
I’d been on the machine about three and a half hours when one of the techs came in and said we’d have to stop the collection. It seems that one of the tests we had done that morning showed that my stem cell count was too low to be collecting them! There is a test which I’d never heard of before, called a CD-34 assay, which measures the level of stem cells in one’s blood. The level should be about 10 or greater to be doing the collection efficiently. My stem cells were only at 3. Much too low. The doc who was running the show that day ( my doc was skiing that morning; there was great fresh snow in the mountains!) said I should keep giving myself the Neupogen shots and we would try again the next day, but we would get the CD-34 test results back before we put the machinery in action. That would keep us from using up $4,000 of machine time for nothing. The Rocky Mountain Cancer Center, where the “transplanters” like my doc, Jeff Matous work, gave me another day’s worth of Neupogen (about $1,000 worth) for free and we went home, disappointed.
The next day we again showed up at about 6:45 but instead of going straight to the apheresis machine we did a CD-34 assay. It takes about three hours to get the test back so we didn’t find out until after ten that it had gone up, but only to 5. My doc, who had returned from skiing, was encouraged by the rise and said we should keep giving the Neupogen in hopes of getting up to 10. So they gave me another $1,000 worth of Neupogen and we went home again. I decided that if I wasn’t going to be on the machine I might as well be working. I went by the my clinic and asked if they needed any help and of course they did, so I added myself into the afternoon schedule, then went home to change clothes and take a nap.
I slept for just a short time, but when I awoke to go to work for the afternoon, I felt just awful. The Neupogen effects were really kicking in. My bones, especially my breastbone, were hurting much more, and I felt extremely tired. But I went in to work, and though we had a full clinic, I managed to get through it. But I was exhausted when I got home.
The next day was a big day. We were to be at the hospital at the usual time, while it was still dark. We had to get the blood drawn and then wait the usual three hours to find out the results. Meanwhile, a committee that was going to evaluate my final appeal on whether the company would help pay for the collection was meeting a couple of hours later, across town. I had written a couple of letters to the committee explaining why I thought they should pay for it, but I had been told I could also attend the meeting if I wanted to. I really didn’t want to. I was feeling bad and didn’t want to answer questions at a committee meeting, not knowing if they’d be hostile or friendly, but I figured I should be there so I could defend my position as to why I thought the company should pay.
So after giving up another blood sample, we drove across town with my letters and some medical literature in support of the collection. I went to the clerk's office and explained that I really didn’t feel well, but I thought it would be best for me to at least be there when the meeting was held. She agreed and told Kathy and me where to sit, near the conference room. A few minutes later she invited me into the room to meet the committee. I didn’t know any of the folks there, but I recognized their names as two Kaiser Permanente doctors and an administrator. I was prepared to answer questions, but was taken by surprise when they told me to make my “presentation.” I hadn’t planned on making a presentation.
But I started talking, telling them what I had learned about leukemia, what the possible treatments were, why there was no real “standard” treatment, and why I thought collecting my stem cells now was as reasonable a plan of treatment as any other. It didn’t hurt my case at all that I seemed to know a whole lot more about leukemia and its treatment than they did. I made my case as best I could and then answered their questions. They told me that they would have an answer for me in about five days. I left, not knowing what they would decide, but I thought that they seemed open to the possibility of doing the stem cell collection. We went back across town, back to the hospital to check on my blood test. It had gone up again, but only to 6. They said to keep going. I got another $1,000 worth of Neupogen and went home and went to bed.
The next day, Thursday, Kathy and I again went to the hospital, which is in downtown Denver, to get my CD-34 test again. By then my doc had decided that if it went up at all we’d start collecting again, so Kathy and I waited around the hospital until the results were back, expecting that I‘d be on the machine before long. Bad news. It went down! To just 3 again.
My doc now decided that my bone marrow was just too beat up to make stem cells right now, even though it had been four months since my last chemotherapy, so we’d have to postpone the collection for a couple of months or so. Man, that was a disappointment for several reasons. First, I’d wasted four days hoping to get the cells collected. Secondly, though I hadn’t yet had to pay anything, we had used up about $7,000 worth of Neupogen, $4,000 of apheresis machine time, plus we’d been doing blood tests every day which I hadn’t yet paid for and I had heard I was probably going to have to pay for the bone marrow biopsy too. We could potentially be out thousands of dollars and we hadn’t really accomplished anything except gathering the very few cells we had gotten on the first day. What helped a lot, however, was that the docs said they would waive their fees for me, the hospital told me that since I didn’t have insurance for this they would “only” charge me $2,000 a day for the apheresis procedure, and that the clinic had given me three doses of the Neupogen for free, about $3,000 worth. I didn’t know what all the blood tests would cost, however.
That brings us up to today. I went back to work today, still feeling pretty tired from all the Neupogen I’d been giving myself. We had a relatively light day so I did okay despite my fatigue. The phone rang at about 10:30. It was the clerk from the appeals committee. She said that the committee had approved my request to have the company pay for the stem cell collection after all! That was great news. However, the bad news is that I don’t have any stem cells to collect right now.
So, I have been in contact with the transplant clinic again. We plan to try the apheresis again in two or three months, when my marrow will presumably have more stem cells. But we have to start from the beginning. I’ll have to have another bone marrow biopsy, all the lab tests will need to be done again, and I’ll have to start injecting another $4,000 worth of Neupogen. It’s just incredible to think that each injection is almost $1,000.
But now we have a plan in place, and I’ll have help in paying for the process. I don’t mind the wait too much, as long I don’t somehow relapse during that time. And that is not expected to happen. We’ll keep checking my white count each month until the next time we try to harvest the cells to see what they do. Oh yeah, I mentioned in my last letter that my white count had dropped down some more, unexpectedly, to around 2,200 or so. Well, after seven days, and $7,000 worth of Neupogen, my white count is up to 27,000! (Normal is up to about 10,000 or a bit more) I guess I’m not at too much risk of infection right now.
Well, that’s our latest adventure. And it’s plenty long enough so I’ll close while I still have a few readers who haven't drifted off to sleep. But, as Arnold Schwartzenegger says, in the movie “The Terminator,” “I’ll be back!”
Until later,
Dave
Sunday, February 2, 2003
Postscript Number One; Stem Cell Collection?
Dave’s Great Adventure
February 2, 2003
Postscript #1
Happy New Year! Yeah, I know, it’s a very late greeting for this year, but in the last letter in this long journal series I wished you Merry Christmas, just after I found out that my bone marrow biopsy was completely normal. For weeks I’ve been wanting to get another letter out to all my friends who have been following my progress, but I’ve just been too busy to sit down and write. I have a lot of news to pass on to you however, so here goes.
First, I am doing extremely well. I have recovered just about all my strength since my last round of chemotherapy in October. I get tired when I’m too active, but I’m not sure whether it’s a residual chemotherapy effect, the fact that I’m out of shape from my months of inactivity, or just that I’ve gotten lazy over the past six months. I also have gotten over just about all of the mental “fuzzies” from which I was suffering for so long. That’s a good thing, since I’m going back to work, and in fact have been working part time throughout January.
I had a blood count done a couple of weeks ago, and was quite surprised to find that my white count had dropped again. It had been three months since my last round of chemotherapy so I expected my counts to be slowly rising, so the drop, to 2,200, caught me quite by surprise. My doc tells me that my count may “bounce around a bit” for several months. I’ll be getting another count in about ten more days. We’ll see what the count does by then. Fortunately my red cell and platelet counts are remaining pretty much in the normal range.
I mentioned in my last letter that we were investigating the possibility of collecting some of my own “stem cells” now that I’m in complete remission, to be frozen and kept for a possible transplant in the future when I might need it. Stem cells are the cells we have in our marrow, and in small numbers in our bloodstream, which produce all of the cells in our blood; the red cells, lymphocytes, neutrophils, platelets and all the others. I met with a cancer specialist, a “transplanter” named Jeff Matous, who spent a lot of time with me talking about my disease and possible plans for the future. He kept talking about my “fantastic” remission (good words to hear, to be sure) but that we had no long term data on how long it might last. He said he thought it would last a long time. I asked, “How long; three months, a year, three years, six years?” He smiled and said “Yeah.” He said that the disease is considered incurable and a relapse is expected, but we can’t predict when. He also went into incredible details of the disease, discussing the origins of the disease at the level of the chromosomes, things I didn’t know despite the fact that I’m a doc (albeit a simple gynecologist), and have read lots of material on leukemia since I found out I have it. He also went into the possible treatments. There is no consensus on how to treat this disease. The treatment seems to vary from one part of the country to another. And it also changes from year to year. The treatment, Jeff said, is “a moving target.”
He said that the “current “ therapy changes so fast that if I relapse in three months, he would know what to do, but if it happened in two or three years, he didn’t know what they would be doing. That brought up the subject of stem cell transplants. They are not commonly done for chronic lymphocytic leukemia, the kind I have, though they’re done for certain lymphomas and other cancers. But, they have been done, and he recommended that we collect the cells while I am in this “fantastic remission” (while my marrow would be made up almost entirely of normal cells and not the leukemic cells which made up 40% of the marrow cells before we stated the chemotherapy).
The problem now is that, as I said, there is no consensus of what should be the standard treatment for the disease. So when my doc, Brian Koester, approached my insurance company (the company for which I also work!) about this therapy they turned down the request. The treatment, they said, is not “evidence based.” In other words, it’s considered experimental, and therefore not covered by the health insurance. Brian called around the country to other transplant centers to get advice, but really couldn’t get a lot of support for the process at the present, as most centers are doing the mini-bone marrow transplants with donor marrow these days (I described this process a long time ago in my early letters).
So, what to do? Well, when you have a lethal disease like I do, you don’t want to close any doors that might be helpful to you in the future, even if the current thought on the matter is that it’s not one of the best treatments. Remember, the treatment seems to change from year to year, and who knows what they will be doing in two or three years. So, I’m thinking about paying for the stem cell harvesting and storage myself. I haven’t gotten a firm fix on the price of collecting the cells, but I think it’s in the range of $6,000-8,000. Now, that would be the easy, “cheap” part. If/when I might need the transplant, the question remains, would my insurance fund the transplant? That would be more in the range of $100,000 or more. But hey, what are savings accounts for, anyway? If you have a choice between dying or retiring, well, there really is no question about what you would do, is there?
I mentioned that I’d been working part time in January, a day or two per week, as I regain my strength. I’ve done pretty well. I found that the female anatomy hadn’t evolved very much over the last six months and I pretty much recognized all the parts. And since my “fuzzies” are gone, I didn’t prescribe any WD-40 for vaginal infections! I start working four days a week on Monday, with a couple of day shifts on Labor and Delivery (als Geburtshilfer) each month, on weekends. Since I found out I had leukemia, I stopped doing nights shifts, as members of our group are permitted to do if they are over 55 years of age. And, I wrote to the chiefs of our department asking if I could reduce my scope of practice, and they agreed to let me work primarily in the clinic for the remainder of my time with the group. I’m going to stop doing surgeries (except for caesarean sections [Kaiserschnitt]) and I’ll no longer work emergency room duty. Narrowing my practice down will simplify my life as I close in on a retirement at some time in the fairly near future.
When I went back to work recently, I had some interesting news. I’m getting sued for medical negligence. Just the kind of news I needed to hear right about now! I really can’t say much, but a patient claims I removed her uterus (Gebaermutter) without her permission! Yeah, right! I suppose getting this resolved will take many months to a few years, as slow as the legal system works here in America.
I have some sad news, also. A few months ago I mentioned a friend of the family, Cindy, who, with her brother Bobby, grew up as friends of our kids in El Paso. Cindy had written to say that since I had to “excrete” so much and so often during my chemotherapy that I should have more sympathy for her now. She’s the girl whom I said had the “teeny, weeny bladder,” who had to stop for bathroom breaks every thirty minutes when we were traveling through Europe during her visits with us there. Well, the very week that I got the wonderful news about my bone marrow biopsy being completely normal, Cindy and Bob got word that their dad, an orthopedic surgeon in Abilene, Texas, had lymphoma! When I heard about this, Cindy and I exchanged some e-mails and I told her I thought her dad would probably get the same medicine I had gotten, the Rituxan, over a few months, and then probably be back to work after his therapy. I was stunned to find out that his lymphoma was so aggressive that it began shutting down his organ systems very rapidly. After several surgeries, chemotherapy and dialysis, he died last week! That was just five or six weeks after he was diagnosed! I just feel so bad for those kids. They lost their mom to breast cancer a few years ago, and now they’ve lost their father. He was sixty, just getting to the age where he could think about retiring and enjoying life, and now he’s gone. It happened so incredibly fast.
Along the same line, my boss was out horseback riding a couple of weeks ago when he heard another horse galloping up from behind, with the rider yelling “Whoa!” He turned around to see the horse throw the rider, who landed on his face. The man suffered severe head injuries and is essentially brain dead. He had just retired from a major investing firm here in Denver, and now he’s gone. He’ll never enjoy the retirement he was looking forward to.
Life is so incredibly fragile and unpredictable. We all think we know where we are going in life, but there are unexpected surprises around every corner. Like I remember hearing a few months ago, “If you want to make God laugh, tell him your plans.” We all know we’re going to die, but we really don’t believe it. We see death on the distant horizon, but as we walk slowly toward that horizon, we never think we’ll reach it, as it always seems so far away.
I think God has kindly given me a two minute warning, if I can use a football analogy. I now know that my horizon is approaching faster that I thought, and so I can make different plans than I originally might have. I can plan my life now to more fully enjoy the time I have left; to work less and spend more time with my family and friends. My time now means so much more to me than any money I might be making. As we hear so often, on one’s deathbed nobody ever wishes they had spent more time at the office.
This knowledge also makes me live my life a bit differently. The week I got the great news about my normal bone marrow biopsy we went out to eat a fancy dinner with our friends Lou and Joan. On the way home it was snowing a bit and the highway was slushy. I was driving like I usually do (probably too fast) when it occurred to me that it would be too ironic if I were to beat the cancer only to kill myself in a careless auto accident. So I slowed down for the drive home. Though I must admit that I haven’t stopped treating our interstate highways like the beloved autobahns of Germany when conditions permit. On the way back from Oklahoma last week we spent a fair amount of time at 90 MPH (about 140 KPH) when the traffic was light and the visibility good. Though that’s not really fast by autobahn standards.
One reason I’ve been too busy to get this letter written is that we just returned from two back-to-back visits to Oklahoma where we helped Kathy’s parents move from their home into an apartment complex which provides around the clock help. On the return trip, after our second trip in a week, I was reading a newspaper and found a very interesting article. It seems that the Veteran’s Administration has found a connection between the exposure to the notorious herbicide, Agent Orange, which was widely used in Vietnam, and the development of chronic lymphocytic leukemia. The stuff was used so much that all Vietnam veterans are presumed to have been exposed. In fact, my unit, the Americal Division, was using this herbicide long after it was supposed to have been banned. What this new finding means is that I will be eligible for medical care at the VA hospitals for this disease, if I need it, and I will probably be eligible for some disability compensation. The regulations covering this are being written now, but won’t be ready for about a year yet. If I were to get a disability payment, it might make it easier to retire a little sooner than I presently would be able to do. We’ll see how this develops.
As I was getting my thoughts together for this letter, I was going to mention that I happily hadn’t gotten a cold yet this winter. I have been very careful about washing my hands, avoiding sick people, and staying away from crowds. This was especially important since my white count is still so low. Well, I can’t tell you that now. After working in the clinic last Tuesday, I woke up Wednesday feeling a little ill, and over the last few days it has developed into a real cold. I feel miserable. But more than how I feel, I worry what it might develop into. We have just completed the destruction of most of my B lymphocytes, the ones that create antibodies, so it may be very difficult for me to get over what generally would be a very minor problem. I’m now into day four of this illness and it’s slowly getting worse. This will be a new experience for me. I hadn’t been sick since we started the chemotherapy (except from the chemotherapy itself).
I think I’ve rambled on long enough for now. I want to thank you folks out there for thinking about me. My thanks to my German friends for the custom calendar and CD, to Kent in Lubbock for the CDs of his favorite music, to the Finleys for the jokes and messages, and to everyone else I’ve been hearing from. I really appreciate your thoughts. I’ll close for now but I’ll get another update out when anything else of interest happens.
Until later,
Dave
February 2, 2003
Postscript #1
Happy New Year! Yeah, I know, it’s a very late greeting for this year, but in the last letter in this long journal series I wished you Merry Christmas, just after I found out that my bone marrow biopsy was completely normal. For weeks I’ve been wanting to get another letter out to all my friends who have been following my progress, but I’ve just been too busy to sit down and write. I have a lot of news to pass on to you however, so here goes.
First, I am doing extremely well. I have recovered just about all my strength since my last round of chemotherapy in October. I get tired when I’m too active, but I’m not sure whether it’s a residual chemotherapy effect, the fact that I’m out of shape from my months of inactivity, or just that I’ve gotten lazy over the past six months. I also have gotten over just about all of the mental “fuzzies” from which I was suffering for so long. That’s a good thing, since I’m going back to work, and in fact have been working part time throughout January.
I had a blood count done a couple of weeks ago, and was quite surprised to find that my white count had dropped again. It had been three months since my last round of chemotherapy so I expected my counts to be slowly rising, so the drop, to 2,200, caught me quite by surprise. My doc tells me that my count may “bounce around a bit” for several months. I’ll be getting another count in about ten more days. We’ll see what the count does by then. Fortunately my red cell and platelet counts are remaining pretty much in the normal range.
I mentioned in my last letter that we were investigating the possibility of collecting some of my own “stem cells” now that I’m in complete remission, to be frozen and kept for a possible transplant in the future when I might need it. Stem cells are the cells we have in our marrow, and in small numbers in our bloodstream, which produce all of the cells in our blood; the red cells, lymphocytes, neutrophils, platelets and all the others. I met with a cancer specialist, a “transplanter” named Jeff Matous, who spent a lot of time with me talking about my disease and possible plans for the future. He kept talking about my “fantastic” remission (good words to hear, to be sure) but that we had no long term data on how long it might last. He said he thought it would last a long time. I asked, “How long; three months, a year, three years, six years?” He smiled and said “Yeah.” He said that the disease is considered incurable and a relapse is expected, but we can’t predict when. He also went into incredible details of the disease, discussing the origins of the disease at the level of the chromosomes, things I didn’t know despite the fact that I’m a doc (albeit a simple gynecologist), and have read lots of material on leukemia since I found out I have it. He also went into the possible treatments. There is no consensus on how to treat this disease. The treatment seems to vary from one part of the country to another. And it also changes from year to year. The treatment, Jeff said, is “a moving target.”
He said that the “current “ therapy changes so fast that if I relapse in three months, he would know what to do, but if it happened in two or three years, he didn’t know what they would be doing. That brought up the subject of stem cell transplants. They are not commonly done for chronic lymphocytic leukemia, the kind I have, though they’re done for certain lymphomas and other cancers. But, they have been done, and he recommended that we collect the cells while I am in this “fantastic remission” (while my marrow would be made up almost entirely of normal cells and not the leukemic cells which made up 40% of the marrow cells before we stated the chemotherapy).
The problem now is that, as I said, there is no consensus of what should be the standard treatment for the disease. So when my doc, Brian Koester, approached my insurance company (the company for which I also work!) about this therapy they turned down the request. The treatment, they said, is not “evidence based.” In other words, it’s considered experimental, and therefore not covered by the health insurance. Brian called around the country to other transplant centers to get advice, but really couldn’t get a lot of support for the process at the present, as most centers are doing the mini-bone marrow transplants with donor marrow these days (I described this process a long time ago in my early letters).
So, what to do? Well, when you have a lethal disease like I do, you don’t want to close any doors that might be helpful to you in the future, even if the current thought on the matter is that it’s not one of the best treatments. Remember, the treatment seems to change from year to year, and who knows what they will be doing in two or three years. So, I’m thinking about paying for the stem cell harvesting and storage myself. I haven’t gotten a firm fix on the price of collecting the cells, but I think it’s in the range of $6,000-8,000. Now, that would be the easy, “cheap” part. If/when I might need the transplant, the question remains, would my insurance fund the transplant? That would be more in the range of $100,000 or more. But hey, what are savings accounts for, anyway? If you have a choice between dying or retiring, well, there really is no question about what you would do, is there?
I mentioned that I’d been working part time in January, a day or two per week, as I regain my strength. I’ve done pretty well. I found that the female anatomy hadn’t evolved very much over the last six months and I pretty much recognized all the parts. And since my “fuzzies” are gone, I didn’t prescribe any WD-40 for vaginal infections! I start working four days a week on Monday, with a couple of day shifts on Labor and Delivery (als Geburtshilfer) each month, on weekends. Since I found out I had leukemia, I stopped doing nights shifts, as members of our group are permitted to do if they are over 55 years of age. And, I wrote to the chiefs of our department asking if I could reduce my scope of practice, and they agreed to let me work primarily in the clinic for the remainder of my time with the group. I’m going to stop doing surgeries (except for caesarean sections [Kaiserschnitt]) and I’ll no longer work emergency room duty. Narrowing my practice down will simplify my life as I close in on a retirement at some time in the fairly near future.
When I went back to work recently, I had some interesting news. I’m getting sued for medical negligence. Just the kind of news I needed to hear right about now! I really can’t say much, but a patient claims I removed her uterus (Gebaermutter) without her permission! Yeah, right! I suppose getting this resolved will take many months to a few years, as slow as the legal system works here in America.
I have some sad news, also. A few months ago I mentioned a friend of the family, Cindy, who, with her brother Bobby, grew up as friends of our kids in El Paso. Cindy had written to say that since I had to “excrete” so much and so often during my chemotherapy that I should have more sympathy for her now. She’s the girl whom I said had the “teeny, weeny bladder,” who had to stop for bathroom breaks every thirty minutes when we were traveling through Europe during her visits with us there. Well, the very week that I got the wonderful news about my bone marrow biopsy being completely normal, Cindy and Bob got word that their dad, an orthopedic surgeon in Abilene, Texas, had lymphoma! When I heard about this, Cindy and I exchanged some e-mails and I told her I thought her dad would probably get the same medicine I had gotten, the Rituxan, over a few months, and then probably be back to work after his therapy. I was stunned to find out that his lymphoma was so aggressive that it began shutting down his organ systems very rapidly. After several surgeries, chemotherapy and dialysis, he died last week! That was just five or six weeks after he was diagnosed! I just feel so bad for those kids. They lost their mom to breast cancer a few years ago, and now they’ve lost their father. He was sixty, just getting to the age where he could think about retiring and enjoying life, and now he’s gone. It happened so incredibly fast.
Along the same line, my boss was out horseback riding a couple of weeks ago when he heard another horse galloping up from behind, with the rider yelling “Whoa!” He turned around to see the horse throw the rider, who landed on his face. The man suffered severe head injuries and is essentially brain dead. He had just retired from a major investing firm here in Denver, and now he’s gone. He’ll never enjoy the retirement he was looking forward to.
Life is so incredibly fragile and unpredictable. We all think we know where we are going in life, but there are unexpected surprises around every corner. Like I remember hearing a few months ago, “If you want to make God laugh, tell him your plans.” We all know we’re going to die, but we really don’t believe it. We see death on the distant horizon, but as we walk slowly toward that horizon, we never think we’ll reach it, as it always seems so far away.
I think God has kindly given me a two minute warning, if I can use a football analogy. I now know that my horizon is approaching faster that I thought, and so I can make different plans than I originally might have. I can plan my life now to more fully enjoy the time I have left; to work less and spend more time with my family and friends. My time now means so much more to me than any money I might be making. As we hear so often, on one’s deathbed nobody ever wishes they had spent more time at the office.
This knowledge also makes me live my life a bit differently. The week I got the great news about my normal bone marrow biopsy we went out to eat a fancy dinner with our friends Lou and Joan. On the way home it was snowing a bit and the highway was slushy. I was driving like I usually do (probably too fast) when it occurred to me that it would be too ironic if I were to beat the cancer only to kill myself in a careless auto accident. So I slowed down for the drive home. Though I must admit that I haven’t stopped treating our interstate highways like the beloved autobahns of Germany when conditions permit. On the way back from Oklahoma last week we spent a fair amount of time at 90 MPH (about 140 KPH) when the traffic was light and the visibility good. Though that’s not really fast by autobahn standards.
One reason I’ve been too busy to get this letter written is that we just returned from two back-to-back visits to Oklahoma where we helped Kathy’s parents move from their home into an apartment complex which provides around the clock help. On the return trip, after our second trip in a week, I was reading a newspaper and found a very interesting article. It seems that the Veteran’s Administration has found a connection between the exposure to the notorious herbicide, Agent Orange, which was widely used in Vietnam, and the development of chronic lymphocytic leukemia. The stuff was used so much that all Vietnam veterans are presumed to have been exposed. In fact, my unit, the Americal Division, was using this herbicide long after it was supposed to have been banned. What this new finding means is that I will be eligible for medical care at the VA hospitals for this disease, if I need it, and I will probably be eligible for some disability compensation. The regulations covering this are being written now, but won’t be ready for about a year yet. If I were to get a disability payment, it might make it easier to retire a little sooner than I presently would be able to do. We’ll see how this develops.
As I was getting my thoughts together for this letter, I was going to mention that I happily hadn’t gotten a cold yet this winter. I have been very careful about washing my hands, avoiding sick people, and staying away from crowds. This was especially important since my white count is still so low. Well, I can’t tell you that now. After working in the clinic last Tuesday, I woke up Wednesday feeling a little ill, and over the last few days it has developed into a real cold. I feel miserable. But more than how I feel, I worry what it might develop into. We have just completed the destruction of most of my B lymphocytes, the ones that create antibodies, so it may be very difficult for me to get over what generally would be a very minor problem. I’m now into day four of this illness and it’s slowly getting worse. This will be a new experience for me. I hadn’t been sick since we started the chemotherapy (except from the chemotherapy itself).
I think I’ve rambled on long enough for now. I want to thank you folks out there for thinking about me. My thanks to my German friends for the custom calendar and CD, to Kent in Lubbock for the CDs of his favorite music, to the Finleys for the jokes and messages, and to everyone else I’ve been hearing from. I really appreciate your thoughts. I’ll close for now but I’ll get another update out when anything else of interest happens.
Until later,
Dave
Thursday, December 19, 2002
Complete Remission!
Dave’s Great Adventure
Chapter 5, Verse 5
December 18, 2002
Merry Christmas!!!
What a wonderful, wonderful Christmas present! I just got a phone call which had great news, news as good as anyone could hope for. My doc called and told me that my bone marrow biopsy was normal. They did a couple of tests on the marrow sample, and in neither could they find any leukemic cells! That’s really all the more amazing as just six months ago my marrow was comprised of 40% leukemic cells. Now there are none they can find. They also looked for telltale antigens on the cells and couldn’t find evidence of abnormal cells. That’s just excellent news!!
I couldn’t have asked for any more out of the therapy that we did on me over the past six months. I’m so grateful that the new medication (the Rituxan) was available and that my doc was willing to try the new combination therapy on me. Remember, I was the very first patient he tried it on. I also have to be grateful that my marrow responded so well, and so rapidly. At first I was disappointed when we had to stop the therapy after only four cycles (out of six planned) but four cycles were obviously all my marrow needed, at least for now.
So now we wait. I’m in a complete remission. Remember, however, remission doesn’t mean “cure,“ but rather means “no evidence of disease.“ I’ll be getting blood counts every month for at least the next six months to a year and will be seeing my doc about every three months for the next year. As long as my blood counts remain normal I’ll be in remission. How long will that last? Well, as my doc said last summer when we started the therapy, “We don’t know because we’re ‘writing the book’ right now.” In other words, there is no long term follow-up on this therapy to see how long the remissions last, or if, perhaps they are permanent. If they are permanent, that could be the “C” word (I hate to say “cure” because there really isn’t one yet, but this new stuff may be the answer...time will tell). I’m one of the pioneers, if you will, of this new therapy. And a very happy pioneer to be sure! There can’t be any better Christmas present than to be told that your cancer is gone!
Since I’m feeling better all the time, the only problems that remain are my suppressed immune system and my slowly improving memory problems. I’ll be on antibiotics for another nine months or so against certain bacteria (pneumocystis carinii, I believe they’re called) which can cause pneumonia in immunocompromised patients, I’ll also be at risk for viruses like the flu and colds, etc., for about that length of time. I’m going to continue to try to avoid anyone who is obviously sick and will continue to wash my hands compulsively throughout the day. I did get a flu immunization, but there is question about whether or not my immune system will be able to create antibodies (antikoerper) against the flu virus, as it has been so battered by the chemotherapy and will remain less than completely effective for many months.
I’ll be going back to work for a few days next month and then probably will be back full time in February. The nurses who put patients in the rooms for me will try to make sure that I am not going to see anyone who is obviously ill with a cough or cold since I will be at risk of infections for a long time.
One other step we’re still working on is to see if it would be reasonable to collect my stem cells at this time, for use later if/when I relapse. If we’re going to do it at all, this is an excellent time, as my marrow seems clean of malignant cells. As Brian said today when I talked with him, “It looks like we’ve got a pretty clean product now.“ Product? I guess that’s how oncologists talk about marrow. Anyway, Brian is in contact with the “transplanters” to get their opinions about an “autotransplant,” or a possible transplant using my own stem cells at some time in the future. It has been done many times in the past and the advantage is that there is no risk of the “graft versus host” reaction (in which the antibodies of the normal, immunocompetent transplanted cells attack the weakened, immunocompromised cells of the patient). This reaction is what causes much of the 25% death rate with marrow transplants. If we’re going to collect them, I’d like to get it scheduled before I start back to work. I really would like to collect the cells...it would be like having an insurance policy against a relapse. And it only costs about $200 a year to store them. Of course, the collection costs would be much greater.
So, what are we doing now, other than celebrating our good fortune? Our son Jonathan, who lives in El Paso, recently visited us with his girlfriend, Natalie, whom you heard about in our report from Las Vegas last August. She hadn’t been to Colorado before so we took her to the mountains to visit the snow and did a few other “Colorado“ things. Jon wanted to visit the new football stadium where the Broncos play so we also took a tour of the new “Invesco Field at Mile High,” a name only someone who works at Invesco (an investment firm) could like, as it’s named after a financial firm rather than any sports team or sports person!
And next week we’re going to have all our kids and grandkids here for Christmas! What a great way to celebrate this wonderful news! We really look forward to having all the family here.
And now for the bad news...remember when I first started my chemotherapy and the instructions I was given to get more calories, more fats in my diets, more gravies, more of every thing? Remember when I would go out for frozen custard every day? Well, now I have to go back on a diet and start watching my cholesterol again!! When I had active leukemia I really didn’t care about my cholesterol level, since it was so much less important than the leukemia. That’s no longer the case. You know, if it’s not one thing, it’s another. Of course, I’d much rather be watching my cholesterol than my leukemia!
December 19, 2002
We went out last night to have a celebratory dinner with our friends, Lou and Joan, to mark the occasion of getting evidence of my total remission. So, I didn’t get this letter out. But I’ll finish it up and get it on its way to you.
Last night Joan, who has faithfully been sending cards to me just about every day since I started the chemotherapy, said she guesses she’ll stop mailing the cards now. I guess that’s fair. What I’m going to do is start mailing cards to one of my colleagues. Those of you who have been getting my “journal” since the beginning may remember that I mentioned a colleague who was battling a recurrence of her breast cancer. She’s the one who warned me about the “fuzzies” I would get after each round, when I wouldn’t be able to think clearly. She also worked in my place in the clinic last August while I was out of the office. Well, she has gotten some more bad news. She has a large number of metastases of breast cancer in her liver. That is extremely bad news. She is considering going to M. D. Anderson Cancer Center in Houston for some radical therapy. I feel it’s my turn to be sending cards now, and I’ll be sending them to Laurel. If anyone that gets my letters would like to send her a “thinking of you” card also, her address is:
Dr. Laurel Harkness
9192 South Buffalo Drive
Littleton, Colorado 80127
Our friend Jane Forte, who winters in Florida and summers in Iowa, wrote to tell me she doesn’t think my memory problems and other lapses are necessarily the result of “chemo brain.” She says as one gets “older” (she didn’t say “old“) these things happen. Jane’s a bit older than me and says she knows from first hand experience that you don’t have to have chemotherapy to start forgetting things and saying things that you didn’t mean or expect to say. Yeah, Jane, but I’d rather blame it on the chemo than my age!
I’m trying to see if I can get my responsibilities at work changed to some extent, to eliminate some of the things I really don’t like doing. Though this remission is extremely encouraging, the average life expectancy for my disease is still only six years from diagnosis to death. And I’ve already used up one of those years! I’d like to plan a relatively relaxing time at work for the next few years and not have to do the things that cause me the greatest stress. For example, as I get older I enjoy surgery less and less. As you gain experience, you realize all the things that can go wrong in the operating room. I’d like not to do surgery and things like that for my last few years with the group. I’ve written a letter to the chief, to see if I could become primarily a clinic, daytime doc, but the initial response was to deny my request. So I’ve written another letter. We’ll see what happens, and what my options are.
I think that’s about enough for now. I’ll add a couple of post scripts from time to time, when there is any news to report, but otherwise this will just about wrap up Book One of the adventure. I hope that there isn’t the start of Book Two for many years. Thanks for all your comments, notes, prayers and interest in my progress. We’ll keep you up to date about any significant changes in what’s going on here.
Until later,
Dave
Chapter 5, Verse 5
December 18, 2002
Merry Christmas!!!
What a wonderful, wonderful Christmas present! I just got a phone call which had great news, news as good as anyone could hope for. My doc called and told me that my bone marrow biopsy was normal. They did a couple of tests on the marrow sample, and in neither could they find any leukemic cells! That’s really all the more amazing as just six months ago my marrow was comprised of 40% leukemic cells. Now there are none they can find. They also looked for telltale antigens on the cells and couldn’t find evidence of abnormal cells. That’s just excellent news!!
I couldn’t have asked for any more out of the therapy that we did on me over the past six months. I’m so grateful that the new medication (the Rituxan) was available and that my doc was willing to try the new combination therapy on me. Remember, I was the very first patient he tried it on. I also have to be grateful that my marrow responded so well, and so rapidly. At first I was disappointed when we had to stop the therapy after only four cycles (out of six planned) but four cycles were obviously all my marrow needed, at least for now.
So now we wait. I’m in a complete remission. Remember, however, remission doesn’t mean “cure,“ but rather means “no evidence of disease.“ I’ll be getting blood counts every month for at least the next six months to a year and will be seeing my doc about every three months for the next year. As long as my blood counts remain normal I’ll be in remission. How long will that last? Well, as my doc said last summer when we started the therapy, “We don’t know because we’re ‘writing the book’ right now.” In other words, there is no long term follow-up on this therapy to see how long the remissions last, or if, perhaps they are permanent. If they are permanent, that could be the “C” word (I hate to say “cure” because there really isn’t one yet, but this new stuff may be the answer...time will tell). I’m one of the pioneers, if you will, of this new therapy. And a very happy pioneer to be sure! There can’t be any better Christmas present than to be told that your cancer is gone!
Since I’m feeling better all the time, the only problems that remain are my suppressed immune system and my slowly improving memory problems. I’ll be on antibiotics for another nine months or so against certain bacteria (pneumocystis carinii, I believe they’re called) which can cause pneumonia in immunocompromised patients, I’ll also be at risk for viruses like the flu and colds, etc., for about that length of time. I’m going to continue to try to avoid anyone who is obviously sick and will continue to wash my hands compulsively throughout the day. I did get a flu immunization, but there is question about whether or not my immune system will be able to create antibodies (antikoerper) against the flu virus, as it has been so battered by the chemotherapy and will remain less than completely effective for many months.
I’ll be going back to work for a few days next month and then probably will be back full time in February. The nurses who put patients in the rooms for me will try to make sure that I am not going to see anyone who is obviously ill with a cough or cold since I will be at risk of infections for a long time.
One other step we’re still working on is to see if it would be reasonable to collect my stem cells at this time, for use later if/when I relapse. If we’re going to do it at all, this is an excellent time, as my marrow seems clean of malignant cells. As Brian said today when I talked with him, “It looks like we’ve got a pretty clean product now.“ Product? I guess that’s how oncologists talk about marrow. Anyway, Brian is in contact with the “transplanters” to get their opinions about an “autotransplant,” or a possible transplant using my own stem cells at some time in the future. It has been done many times in the past and the advantage is that there is no risk of the “graft versus host” reaction (in which the antibodies of the normal, immunocompetent transplanted cells attack the weakened, immunocompromised cells of the patient). This reaction is what causes much of the 25% death rate with marrow transplants. If we’re going to collect them, I’d like to get it scheduled before I start back to work. I really would like to collect the cells...it would be like having an insurance policy against a relapse. And it only costs about $200 a year to store them. Of course, the collection costs would be much greater.
So, what are we doing now, other than celebrating our good fortune? Our son Jonathan, who lives in El Paso, recently visited us with his girlfriend, Natalie, whom you heard about in our report from Las Vegas last August. She hadn’t been to Colorado before so we took her to the mountains to visit the snow and did a few other “Colorado“ things. Jon wanted to visit the new football stadium where the Broncos play so we also took a tour of the new “Invesco Field at Mile High,” a name only someone who works at Invesco (an investment firm) could like, as it’s named after a financial firm rather than any sports team or sports person!
And next week we’re going to have all our kids and grandkids here for Christmas! What a great way to celebrate this wonderful news! We really look forward to having all the family here.
And now for the bad news...remember when I first started my chemotherapy and the instructions I was given to get more calories, more fats in my diets, more gravies, more of every thing? Remember when I would go out for frozen custard every day? Well, now I have to go back on a diet and start watching my cholesterol again!! When I had active leukemia I really didn’t care about my cholesterol level, since it was so much less important than the leukemia. That’s no longer the case. You know, if it’s not one thing, it’s another. Of course, I’d much rather be watching my cholesterol than my leukemia!
December 19, 2002
We went out last night to have a celebratory dinner with our friends, Lou and Joan, to mark the occasion of getting evidence of my total remission. So, I didn’t get this letter out. But I’ll finish it up and get it on its way to you.
Last night Joan, who has faithfully been sending cards to me just about every day since I started the chemotherapy, said she guesses she’ll stop mailing the cards now. I guess that’s fair. What I’m going to do is start mailing cards to one of my colleagues. Those of you who have been getting my “journal” since the beginning may remember that I mentioned a colleague who was battling a recurrence of her breast cancer. She’s the one who warned me about the “fuzzies” I would get after each round, when I wouldn’t be able to think clearly. She also worked in my place in the clinic last August while I was out of the office. Well, she has gotten some more bad news. She has a large number of metastases of breast cancer in her liver. That is extremely bad news. She is considering going to M. D. Anderson Cancer Center in Houston for some radical therapy. I feel it’s my turn to be sending cards now, and I’ll be sending them to Laurel. If anyone that gets my letters would like to send her a “thinking of you” card also, her address is:
Dr. Laurel Harkness
9192 South Buffalo Drive
Littleton, Colorado 80127
Our friend Jane Forte, who winters in Florida and summers in Iowa, wrote to tell me she doesn’t think my memory problems and other lapses are necessarily the result of “chemo brain.” She says as one gets “older” (she didn’t say “old“) these things happen. Jane’s a bit older than me and says she knows from first hand experience that you don’t have to have chemotherapy to start forgetting things and saying things that you didn’t mean or expect to say. Yeah, Jane, but I’d rather blame it on the chemo than my age!
I’m trying to see if I can get my responsibilities at work changed to some extent, to eliminate some of the things I really don’t like doing. Though this remission is extremely encouraging, the average life expectancy for my disease is still only six years from diagnosis to death. And I’ve already used up one of those years! I’d like to plan a relatively relaxing time at work for the next few years and not have to do the things that cause me the greatest stress. For example, as I get older I enjoy surgery less and less. As you gain experience, you realize all the things that can go wrong in the operating room. I’d like not to do surgery and things like that for my last few years with the group. I’ve written a letter to the chief, to see if I could become primarily a clinic, daytime doc, but the initial response was to deny my request. So I’ve written another letter. We’ll see what happens, and what my options are.
I think that’s about enough for now. I’ll add a couple of post scripts from time to time, when there is any news to report, but otherwise this will just about wrap up Book One of the adventure. I hope that there isn’t the start of Book Two for many years. Thanks for all your comments, notes, prayers and interest in my progress. We’ll keep you up to date about any significant changes in what’s going on here.
Until later,
Dave
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