Dave’s Great Adventure, Book Two
Postscript One
March 25, 2004
Juneau, And Wonderful News
Our approach to Juneau last week was awesome.
As we took off from Seattle, our pilot reported to us that it was 32 degrees (0 C) and snowing in Juneau. We hadn’t expected to hear that, as the weather reports we’d been seeing showed highs most days in the low 40s or so. So we flew, mostly over clouds, until we neared Juneau. The we dropped below the cloud cover.
As the pilot guided the plane toward Juneau’s one runway airport, we followed the Gastineau Channel into town, flying between the Coastal Range mountains on the right and the mountains of Douglas Island on the left. We were below mountain top levels. It was snowing lightly. The mountain tops were pure white with fresh snow, while below them the sides were darkened with the green-black of the Sitka spruce, which struggled up mountainsides, smaller numbers of them with advancing elevation. The large forests of spruce were raggedly divided into sections by slashes of white, frozen streams which awaited the coming spring to be released to continue their downward journeys. The white slashes led down to the valleys, each of which was which were filled with clouds. It was a beautiful reintroduction to Alaska.
The trip itself, proved to be much tougher on me than I had anticipated. I hadn’t been doing much of anything around the house during the therapy, so didn’t realize how weakened I was. Plus, I was still feeling some residual effects of the Neupogen injections I had been giving myself, which make you feel a bit like you’re coming down with the flu. So, walking through airports, standing in long security lines, sitting in hard airport and airliner seats, and hauling luggage around, even for short distances, exhausted me. Having to go through security again when we changed terminals in Seattle was particularly long and onerous. I was very glad to get to Juneau. Our rental car was delivered to the airport, after a little confusion on the part of the agency, who didn’t expect us until we called, but we got the car and we were off to the Alaska Wolfhouse Bed and Breakfast, to visit with Phil and Clovis Dennis, just a few miles away. It was nice to be “home.” We talked to Phil and Clovis a while, then checked into our room and took a prolonged nap.
Phil and Clovis treated us just royally, even though we were just renting a room from them. We consider them good friends, after having met them last July when we first stayed in their lovely B&B on our trip up the inside passage (which I heartily recommend, but NOT on a cruise liner!). We had many great conversations with them during our first stay, but I realized as we were on our way back that we'd actually only had about six or so actual hours of “face time” with them, but that was enough to get to be great friends. And we’ve been e-mailing back and forth since. And, of course, trading experiences with technology and our frustrations.
And they cared for us as they would have old friends, or perhaps relatives. The first night, when we were so extremely tired, they invited us up to have dinner with them, a tasty Italian dinner with spaghetti and meat balls. A couple of nights later they had us up for a Mexican food dinner. Clovis spent a lot of time in Helotes, Texas teaching, and knows Tex-Mex! And we even went out for dinner with them a couple of times, once on Phil’s birthday, on Saint Patty’s Day. I wore my Irish hat which my sister Diane sent to me, for that occasion. How many of you have gone out to dinner with your B&B hosts?
We didn’t do an awful lot while we were in Juneau, but that was the plan. We were there to heal and rest. We didn’t have any day trips, serious hikes, or excursions planned. Each day we would drive the two miles into Juneau, walk around a bit, check e-mail at the library, and then, routinely, went back to the Wolfhouse in the afternoon to sleep. I usually “hit the wall” about two or three in the afternoon. When not sleeping in the afternoons, I did a lot of cross-stitching. Kathy and I are still working on a baby quilt for our second granddaughter, who will be two soon. We hope to have it finished before she graduates from high school.
If you’ve never been to Juneau, you should plan a visit. It’s a wonderful and very interesting little town. It is, of course, the capital of Alaska, which is our largest state. But Juneau is only about 30,000 inhabitants in size, probably not much bigger than Muscatine, Iowa, the small town where my Mom lives. It is, additionally, completely land locked. There are no roads into or out of Juneau. One arrives in Juneau either by air or by sea. The town itself has an abundance of old, Victorian style homes perched on the mountainsides around the narrow strip of coastal flatlands. It looks a bit like a miniature San Francisco. It is surrounded by forests, sea channels, glaciers and islands. There is arctic wildlife in abundance all around town. In fact, there is a bear den in the hill above the Wolfhouse, and the sow and her cubs walk around the neighborhood with regularity. Bald eagles are seen commonly. In the nearby waterways one can see humpback whales, Orcas, sea lions, and sea otters.
And it’s simply beautiful everywhere you go. One day we took the short drive over to Douglas Island, and headed the ten miles or so to the end of the road. There, at the northern end of the island there is a stand of old growth forests. We first encountered old growth forests near Gustavus, Alaska last July, when we went to Glacier Bay. Before you enter any of the forests, or start out on any trails, there are always signs warning you of the danger of bears. You are warned to make a lot of noise and talk loudly as you walk through the forests. Also, the signs routinely instruct you, that if you come upon a bear, you should “Identify yourself to the bear as human.” I never knew what this meant. Do you say, “Excuse me Yogi, but I’m a human and you shouldn't eat me?” I still don’t know what it means.
But, regardless of our instructions and intentions, once we entered the old growth forests, we were instantly awestruck! We would walk slowly among the hundred-foot tall pines and spruce, with light filtering down from above. It felt like a holy place, almost more so than in church. We were absolutely silent as we walked. The ground was covered with a thick drapery of insulating moss which grew up the tree trunks and covered all but the largest rocks. Mosses hung from the tree branches. Small pools of brownish water collected among the tree roots and rocks. The primeval splendor was so captivating that we felt transported to another place and time. But, then we realized we weren’t talking loudly, so as to scare off bears. We would do so, and the spell would be broken.
We didn't need to worry about bears this time, however, so as we set off on the short path towards the shoreline, we were able to be lost in our silent thoughts as we walked quietly along the log and packed earth path. I took pictures, of course, but never do my pictures do justice to the beauty and magnificence of these forests.
A short walk brings you to the shore. On the way down the path we encountered a group of teens coming back up. Some were in short sleeved shirts. One girl said to us, “It gets cold down there” even though we were dressed more warmly than they were. Perhaps they could tell we were out-of-towners, tourists. It had been calm, and not unpleasant at the road, just a quarter mile from the shore.
But then we stepped out of the forest and beheld the sea. The seasons changed from spring-like to stormy. It was a beautiful day.
Now, it wasn’t a beautiful day as in, you step out into the backyard and feel 75 degree temperatures with a gentle breeze and see partly cloudy skies and say to yourself “What a beautiful day.” This was a different kind of beauty. Phil Dennis describes places like this as being “severely beautiful.“
It was overcast with low hanging gray clouds. The wind was blowing down the shoreline about thirty miles an hour, and it was about 35 degrees. The grey-green breakers, two to three feet tall, were crashing on the boulders-rocks-gravel-sand beach. With each crash of waves, sea foam was whipped down the beach. I stood on the boulders on the shore. The wind tried to push me off. To my left, as I looked down the shoreline, the forest swayed with the winds. Kathy stayed within the trees for shelter from the wind. To the right, whitecaps extended into the distance. A lone bald eagle swooped, hovered and soared above the waves about a hundred feet off shore, vainly looking for a fish. About thirty yards behind me, a bluff extended about fifty feet straight down into the water. A solitary spruce about fifteen feet tall struggled to grow out of the side of the bluff at a 45 degree angle, destined to fail and die, as there is not enough soil to support its growth much longer. The teens were right. I had on a long sleeved shirt, sweatshirt, warm jacket and my Antarctic parka all on, and I was cold. My eyes were watering and my nose was running. But it was captivating. I stayed there for about twenty minutes, just taking in the wild beauty of the place, listening to and feeling the wind, seeing and hearing the waves and looking at the eagles and gulls high overhead. Then we walked slowly back to the car.
We flew back to Denver the next day, Sunday. I had an appointment with my Doc, Jeff Matous on Tuesday. Jeff was of course very pleased with the collection numbers, but what I wanted to hear was the results of the flow cytometry, the test which would tell us if we had collected normal or abnormal cells. Jeff had nothing but great news. The flow testing showed that 99.95% of the cells were normal. Only 0.05% leukemic cells, which was great news indeed. It was better than we had expected or hoped for. That means that if/when I need a transplant with these cells, I’ll theoretically get a greater percentage of cells that are normal than those I had when we first started my treatments a couple of years ago. And there remains the possibility that in the interim the technology will advance to the point where we can treat the collected cells to eliminate those remaining leukemic cells.
I got some other news that I also thought was very good, but not about me. When I finished my stem cell collection, I still had about $3,000 worth of Neupogen left over in my refrigerator, and about $120 worth of Anzemet. I didn't need these medications, but no pharmacy will take back meds once they’ve been out of their control, no matter how much they’re worth. But I was loathe to throw so much money’s worth of medication in the trash. So I inquired at the Rocky Mountain Cancer Center to see if they might have any use for the meds, and would it be legal for them to take them. Indeed, they could. They have a program for indigent persons who have trouble paying for their insurance and/or medications. They took the meds for this program, where someone will be able to benefit from them. I’m very glad I found a good home for these medications.
One last thing before I close this postscript. I have long wanted to see some northern lights, the auroras. Last summer when we were in Alaska it was only dark for a few hours a day, and the dark hours were so late that Kathy and I were never awake when it was dark. So, on this trip to the north, we went out a couple of times to sit in the car on the coast of Douglas Island and look for auroras, which form on most nights. I’m happy to say that we did indeed see the greenish glow of the northern lights creeping along the sky on our last night in Alaska, hanging over the Mendenhall glacier. Not too spectacular by some standards, but now I’ve seen the real thing.
I’ve surely written more than enough, so I’ll close this postscript and get it on its way. I still plan to go back to work next week, starting on April Fools Day. The joke will be on my patients who will find that their doctor suddenly (to them) looks like Yul Brynner. If anything of great interest happens, I’ll release another edition of this never-ending series.
Until then....
Dave
“Why me, oh Lord, why me?” he asked.
“Why NOT you, Bub” came the answer.
(philosophy from Phil Dennis)
IF I SHOULD FALL BEHIND
We said we'd walk together baby come what may
That come the twilight should we lose our way
If as we're walkin’ a hand should slip free
I'll wait for you
And should I fall behind
Wait for me
We swore we'd travel darlin' side by side
We'd help each other stay in stride
But each lover's steps fall so differently
But I'll wait for you
And if I should fall behind
Wait for me
Now everyone dreams of a love lasting and true
But you and I know what this world can do
So let's make our steps clear that the other may see
And I'll wait for you
If I should fall behind
Wait for me
Now there's a beautiful river in the valley ahead
There 'neath the oak's bough soon we will be wed
Should we lose each other in the shadow of the evening trees
I'll wait for you
And should I fall behind
Wait for me
Darlin' I'll wait for you
Should I fall behind
Wait for me
----Bruce Springsteen
(We first heard this song on a videotape while staying at the Wolfhouse. If you’ve never heard it, as we hadn’t, try to borrow a CD or cassette and listen to it. I don’t particularly like Springsteen, but this song is just lovely.)
Thursday, March 25, 2004
Monday, March 15, 2004
Collecting Stem Cells
Dave’s Great Adventure, Book Two
Chapter 2, Verse 11
March 15, 2004
The light at the end of the tunnel.
They say that you should beware of the light at the end of the tunnel. Often, it is just the headlight of a train, about to run you down yet again. I have seen that light several times recently. But, I guess, eventually the trains stop running and you actually get to the other end of the tunnel.
The last time I wrote, I had just completed the accidental extraction of a large bore tube that entered my chest and wound down into my heart. When it was placed, it had been sutured into my skin with a couple of non-dissolving sutures. They really bothered me. They hurt, pulled, irritated my skin, and eventually looked like they were getting inflamed. I asked the nurses if we could take them out. They asked my doc. Jeff said we should leave them in, that sometimes if the stitches were taken out, the catheters might accidentally be pulled out. I was thinking at that time, “You’d really have to be some kind of dumb ass to accidentally pull out your catheter.” But, I kept pestering the nurses, and they took them out, one at a time until, three days before I yanked mine out, I had none left.
And you know what happened. “Dumb ass!”
So, I went back to the clinic to see what we would do about my lack of large bore access to my blood. They sent me up to the apheresis room at Presbyterian-St. Luke’s, which is where the stem cells are collected, by a procedure called, what else, “apheresis.” That’s a way to get the stem cells out of circulating blood rather than having to suction them out of one's bone marrow, which was done until recently. There, they were to evaluate my veins as to adequacy for apheresis by large IV needles, rather than by another central line. We met Mary Kay, one of the techs. She inspected my veins and pronounced them adequate “for multiple days of collection.” That’s what I wanted to hear, no need for another central line. While we were there, we also got the great news that my white count had finally gone up, from the 0.3 (or 300) that it had been for days, up to 1,000.
Now, 1,000 white cells is still a very low count, by most normal standards. In fact, it’s lower than my count ever got when I went through my first rounds of therapy back in 2002. But, in this circumstance, it meant that my marrow was rebounding, and that we could expect that there were stem cells being pushed out into my blood. Ergo, we could start the collection process. We were told to report back to the apheresis room at PSL at 0700 on Friday.
By the way, while we were at the clinic, I spoke with Jeff for a while. I knew that this procedure was at least relatively new for leukemic patients, being done primarily on folks with lymphomas. I asked Jeff how often he’d done this on leukemics like myself. “Never, you're the first. It’ll be interesting to see how it works out.” How about that? I was the first patient my other doc had done the FCR regimen of chemotherapy on, and now I’m the first to get this type of stem cells collected. I’m turning into a very expensive guinea pig.
We arrived there promptly as instructed. We’re never late, not with MY wife getting us around. Mary Kay wasn’t there. Angie was. Angie took a different view of my veins. She agreed that they looked pretty good, but she wasn’t at all thrilled with having to try to put two large IVs in my arms and keeping them there, functioning, for the five hour process. But she was willing to try. What else could she do, I had no central line in place. So, she expertly stuck a couple large IV needles into me, taped them in place, and away we went. Things went pretty well at first, but (and I had this problem last year too when we tried this) I soon had to pee. They tell us to “hydrate well” before coming in, so our veins will be full and offer easier access. But, all that fluid has to go somewhere, and that means peeing. But, with both arms relatively immobilized by having the IVs in place, I needed help. Just like last year, my patient wife was called upon to become a nurse’s aide and help me get Rover going into the right direction, into the urinal bottle. But, just getting up was a problem. One really can’t go from a reclining position to an upright one without some motion, and when you have two large, bare needles in your arms, motion translates into damage to the walls of the veins. And that damage compromises the collection process.
By the time I had gotten up twice to pee, over about four hours or so, the access line was kaput. They replaced it further out to a vein on the side of my arm, but it didn’t do as well as they wanted. After the completion of the five hours of collection, they had only passed my total blood volume through the machine four times. They wanted six passes of my blood through the machine. By now it was about 2 PM. We had been there seven hours, hadn’t had lunch, and were very tired from having gotten up at 5:30 that morning. I heard phone calls being made. They returned with a verdict. I needed to have the great big central line replaced before they would collect more stem cells. I had an appointment back in the cardiovascular lab at 3:00 PM. Meanwhile, we heard that my white count had now risen to 4,000. Still rising nicely.
So, we waited until the given time, went downstairs, and there, in about twenty minutes, with a little local anesthetic, another line was put in, a little bit different from the first. This line was called a Quentin Catheter, and didn’t tunnel up under my chest, but went almost directly into my internal jugular vein, down THROUGH the upper right chamber of my heart and into my inferior vena cava (the large vein in the abdomen). This line wasn’t designed to stay in more than a few days, but we didn’t expect to need it more than a few more days. It hurt a little bit, but not too badly. We were told to report back to the apheresis room again the next morning, at 7:30. Alright! We could sleep in a little bit. But sleeping with a big tube in one’s neck wasn’t at all easy.
The next day we got up. There was something else going on now. I was seriously molting! My hair was falling out by the handsful. I decided this was the big fall we’d been waiting for. It was time for the haircut! But, we had to go back to the collection room first.
We were back there at 7:30, as instructed. Mary Kay was there to take care of me. I was the only patient there; they had opened up the whole place just for me! She drew labs, like they always do, hooked my Quentin catheter to the pump and away we went again. This time, with the central line in, it went much faster, and I have to admit, I was much, much more comfortable. I wasn’t restricted nearly so much in my movements, as there were no needles to potentially dislodge. We got my white count back. Now up to 10,000! But my platelets were down to 50,000, as a result of having been skimmed off with the stem cells the previous day, normal being 200,000 to 400,000, but anything over about 20,000 being considered okay for clotting functions. We also heard that we had collected about 2,500,000 stem cells the previous day. That was exceedingly good, no, GREAT news. The minimum number of cells we wanted to collect was 2 million. We hoped to collect about 5 million. We were on track for a great collection.
I stayed on the machine for the full five hours and they got my total blood volume to go through the machine’s innards six full times. I think that is amazing. The collection went off without a flaw, but just as we were about to finish, I began to feel weird. I was starting to tingle all over. That is a complication of the process, in that it takes off my serum calcium too. They gave me some Tums to chew, no better. They gave me an injection of calcium in the IV, no better. Another shot, still no better. They called the doc, he ordered a third shot in the IVs. I started to feel better, but slowly. It took so long because, I , being a doc, had ignored the tingling feeling for an hour or so until it got so bad I couldn’t ignore it. Eventually, the tingling, and the danger of seizures, went away.
At this point, we didn’t know whether I’d need to be “collected” again the next day or not. Mary Kay said she’d call us when the labs were back with the day’s count, but that wouldn’t be until five in the afternoon or so. So we left, but on the way home, we stopped by my barber shop, where the gal that cuts my hair was able to work me in for a buzz cut. Kathy was taking pictures the whole time. Hey, we did a Mohawk, got some pictures of that, and then took the rest off.
Then we went home and then out to get some late lunch/dinner. The call about the stem cells came right at five. We had gotten another 4 1/2 million stem cells! We were finished! With the previous day’s collection, we had over seven million of the little guys who were someday going to be called upon to save/prolong my life if things weren't going well. Plus, as a little bonus, we had a quarter million more cells from last year’s collection. But I had some unfinished business. I still had the tube sticking in my neck. What the heck do you do on a Saturday night when you want a tube taken out of your neck.
I went to my clinic, the local Kaiser clinic, and checked in. “What can we do for you, sir?” “I’m having a problem with my central line,” I answered. “Okay, take a seat and we’ll be right with you.” We waited a few minutes, the nurse came out. “What’s the problem with your line, sir?” she asked. “I want it out, I don't need it anymore.” She was a little taken aback. “We can’t do that here sir, you’ll have to go to the hospital.” But I explained that it was a simple line, the removal was simple, and that I had, in fact, recently removed a similar line in the shower. “Well sir, we still can’t do that here.” So I pulled the trump card. “Who’s working here tonight?” She began telling me names of the docs who were there. The first was a Dr. Boyer. Well, I know Dr. Boyer, actually helped with her recent pregnancy, and asked if I could speak to “Sarah.” She asked if I knew Dr. Boyer and I told her I did. Sarah came out. She knew what I wanted, and was willing to pull the thing but wasn’t really too anxious to do so, not knowing if I’d bleed or not. I told her all my blood counts, all adequate, at least according to the books. “Will you clot for me if I take it out?” “Well, in theory I will,” I answered. We went back to the procedure room, took it out, and all went well. Now I could sleep!
The next morning we got up and went to church. I was feeling itchy. I realized that all the remaining 1/16 inch stubble on my head was still falling out and was all over and in my clothes, making me feel like I’d just come out of the barber shop again. We met one of my patients after church. We joked about my new “do.” She introduced me to her husband, whom I hadn’t seen since she was pregnant about eight years ago. “Hey, you look good in eyebrows,” he remarked. I guess he liked my new hairdo.
We went back home, I got in the bathtub and got out a fresh razor and started shaving the rest of my hair off. Went through two fresh razors. Got a lot of cuts on my scalp, too. But, now it’s all off.
And I'm all done. The treatments are all done, I’m not on any more drugs, and all I have to do now is recover. Kathy and I leave in the morning for Alaska for the R&R I mentioned a few weeks ago. We’ll be staying with the lovely Clovis and curmudgeonly Phil at the Alaska Wolfhouse B&B in Juneau for a few days as I rest up, and Kathy will be able to rest as well, as she won’t be “on duty” the whole time, and will be cared for as well. She deserves a rest too.
It’s a bit surprising that, as long as it took to get there, and with all the complications and problems we had along the way, once we got on with the collection process, it was over in a flash. And I think that will be the end of Book Two, except that there will likely be a postscript or two over the next few weeks. For example, we haven't gotten back the lab tests that will determine if we can actually use the stem cells we collected. If there are too many leukemic cells in the batch, we might, in theory, toss out the whole thing and it will all have been for naught. But we're not going to think that. I’ll pass that information on when we get it. Until then, though, this will be the end of Book Two, and I hope not to start Book Three for a long time.
Bye for now,
Dave
“Frisbeetarianism (n.), The belief that, when you die, your soul goes up on the roof and gets stuck there.”
Work like you don't need the money.
Love like you've never been hurt.
Chapter 2, Verse 11
March 15, 2004
The light at the end of the tunnel.
They say that you should beware of the light at the end of the tunnel. Often, it is just the headlight of a train, about to run you down yet again. I have seen that light several times recently. But, I guess, eventually the trains stop running and you actually get to the other end of the tunnel.
The last time I wrote, I had just completed the accidental extraction of a large bore tube that entered my chest and wound down into my heart. When it was placed, it had been sutured into my skin with a couple of non-dissolving sutures. They really bothered me. They hurt, pulled, irritated my skin, and eventually looked like they were getting inflamed. I asked the nurses if we could take them out. They asked my doc. Jeff said we should leave them in, that sometimes if the stitches were taken out, the catheters might accidentally be pulled out. I was thinking at that time, “You’d really have to be some kind of dumb ass to accidentally pull out your catheter.” But, I kept pestering the nurses, and they took them out, one at a time until, three days before I yanked mine out, I had none left.
And you know what happened. “Dumb ass!”
So, I went back to the clinic to see what we would do about my lack of large bore access to my blood. They sent me up to the apheresis room at Presbyterian-St. Luke’s, which is where the stem cells are collected, by a procedure called, what else, “apheresis.” That’s a way to get the stem cells out of circulating blood rather than having to suction them out of one's bone marrow, which was done until recently. There, they were to evaluate my veins as to adequacy for apheresis by large IV needles, rather than by another central line. We met Mary Kay, one of the techs. She inspected my veins and pronounced them adequate “for multiple days of collection.” That’s what I wanted to hear, no need for another central line. While we were there, we also got the great news that my white count had finally gone up, from the 0.3 (or 300) that it had been for days, up to 1,000.
Now, 1,000 white cells is still a very low count, by most normal standards. In fact, it’s lower than my count ever got when I went through my first rounds of therapy back in 2002. But, in this circumstance, it meant that my marrow was rebounding, and that we could expect that there were stem cells being pushed out into my blood. Ergo, we could start the collection process. We were told to report back to the apheresis room at PSL at 0700 on Friday.
By the way, while we were at the clinic, I spoke with Jeff for a while. I knew that this procedure was at least relatively new for leukemic patients, being done primarily on folks with lymphomas. I asked Jeff how often he’d done this on leukemics like myself. “Never, you're the first. It’ll be interesting to see how it works out.” How about that? I was the first patient my other doc had done the FCR regimen of chemotherapy on, and now I’m the first to get this type of stem cells collected. I’m turning into a very expensive guinea pig.
We arrived there promptly as instructed. We’re never late, not with MY wife getting us around. Mary Kay wasn’t there. Angie was. Angie took a different view of my veins. She agreed that they looked pretty good, but she wasn’t at all thrilled with having to try to put two large IVs in my arms and keeping them there, functioning, for the five hour process. But she was willing to try. What else could she do, I had no central line in place. So, she expertly stuck a couple large IV needles into me, taped them in place, and away we went. Things went pretty well at first, but (and I had this problem last year too when we tried this) I soon had to pee. They tell us to “hydrate well” before coming in, so our veins will be full and offer easier access. But, all that fluid has to go somewhere, and that means peeing. But, with both arms relatively immobilized by having the IVs in place, I needed help. Just like last year, my patient wife was called upon to become a nurse’s aide and help me get Rover going into the right direction, into the urinal bottle. But, just getting up was a problem. One really can’t go from a reclining position to an upright one without some motion, and when you have two large, bare needles in your arms, motion translates into damage to the walls of the veins. And that damage compromises the collection process.
By the time I had gotten up twice to pee, over about four hours or so, the access line was kaput. They replaced it further out to a vein on the side of my arm, but it didn’t do as well as they wanted. After the completion of the five hours of collection, they had only passed my total blood volume through the machine four times. They wanted six passes of my blood through the machine. By now it was about 2 PM. We had been there seven hours, hadn’t had lunch, and were very tired from having gotten up at 5:30 that morning. I heard phone calls being made. They returned with a verdict. I needed to have the great big central line replaced before they would collect more stem cells. I had an appointment back in the cardiovascular lab at 3:00 PM. Meanwhile, we heard that my white count had now risen to 4,000. Still rising nicely.
So, we waited until the given time, went downstairs, and there, in about twenty minutes, with a little local anesthetic, another line was put in, a little bit different from the first. This line was called a Quentin Catheter, and didn’t tunnel up under my chest, but went almost directly into my internal jugular vein, down THROUGH the upper right chamber of my heart and into my inferior vena cava (the large vein in the abdomen). This line wasn’t designed to stay in more than a few days, but we didn’t expect to need it more than a few more days. It hurt a little bit, but not too badly. We were told to report back to the apheresis room again the next morning, at 7:30. Alright! We could sleep in a little bit. But sleeping with a big tube in one’s neck wasn’t at all easy.
The next day we got up. There was something else going on now. I was seriously molting! My hair was falling out by the handsful. I decided this was the big fall we’d been waiting for. It was time for the haircut! But, we had to go back to the collection room first.
We were back there at 7:30, as instructed. Mary Kay was there to take care of me. I was the only patient there; they had opened up the whole place just for me! She drew labs, like they always do, hooked my Quentin catheter to the pump and away we went again. This time, with the central line in, it went much faster, and I have to admit, I was much, much more comfortable. I wasn’t restricted nearly so much in my movements, as there were no needles to potentially dislodge. We got my white count back. Now up to 10,000! But my platelets were down to 50,000, as a result of having been skimmed off with the stem cells the previous day, normal being 200,000 to 400,000, but anything over about 20,000 being considered okay for clotting functions. We also heard that we had collected about 2,500,000 stem cells the previous day. That was exceedingly good, no, GREAT news. The minimum number of cells we wanted to collect was 2 million. We hoped to collect about 5 million. We were on track for a great collection.
I stayed on the machine for the full five hours and they got my total blood volume to go through the machine’s innards six full times. I think that is amazing. The collection went off without a flaw, but just as we were about to finish, I began to feel weird. I was starting to tingle all over. That is a complication of the process, in that it takes off my serum calcium too. They gave me some Tums to chew, no better. They gave me an injection of calcium in the IV, no better. Another shot, still no better. They called the doc, he ordered a third shot in the IVs. I started to feel better, but slowly. It took so long because, I , being a doc, had ignored the tingling feeling for an hour or so until it got so bad I couldn’t ignore it. Eventually, the tingling, and the danger of seizures, went away.
At this point, we didn’t know whether I’d need to be “collected” again the next day or not. Mary Kay said she’d call us when the labs were back with the day’s count, but that wouldn’t be until five in the afternoon or so. So we left, but on the way home, we stopped by my barber shop, where the gal that cuts my hair was able to work me in for a buzz cut. Kathy was taking pictures the whole time. Hey, we did a Mohawk, got some pictures of that, and then took the rest off.
Then we went home and then out to get some late lunch/dinner. The call about the stem cells came right at five. We had gotten another 4 1/2 million stem cells! We were finished! With the previous day’s collection, we had over seven million of the little guys who were someday going to be called upon to save/prolong my life if things weren't going well. Plus, as a little bonus, we had a quarter million more cells from last year’s collection. But I had some unfinished business. I still had the tube sticking in my neck. What the heck do you do on a Saturday night when you want a tube taken out of your neck.
I went to my clinic, the local Kaiser clinic, and checked in. “What can we do for you, sir?” “I’m having a problem with my central line,” I answered. “Okay, take a seat and we’ll be right with you.” We waited a few minutes, the nurse came out. “What’s the problem with your line, sir?” she asked. “I want it out, I don't need it anymore.” She was a little taken aback. “We can’t do that here sir, you’ll have to go to the hospital.” But I explained that it was a simple line, the removal was simple, and that I had, in fact, recently removed a similar line in the shower. “Well sir, we still can’t do that here.” So I pulled the trump card. “Who’s working here tonight?” She began telling me names of the docs who were there. The first was a Dr. Boyer. Well, I know Dr. Boyer, actually helped with her recent pregnancy, and asked if I could speak to “Sarah.” She asked if I knew Dr. Boyer and I told her I did. Sarah came out. She knew what I wanted, and was willing to pull the thing but wasn’t really too anxious to do so, not knowing if I’d bleed or not. I told her all my blood counts, all adequate, at least according to the books. “Will you clot for me if I take it out?” “Well, in theory I will,” I answered. We went back to the procedure room, took it out, and all went well. Now I could sleep!
The next morning we got up and went to church. I was feeling itchy. I realized that all the remaining 1/16 inch stubble on my head was still falling out and was all over and in my clothes, making me feel like I’d just come out of the barber shop again. We met one of my patients after church. We joked about my new “do.” She introduced me to her husband, whom I hadn’t seen since she was pregnant about eight years ago. “Hey, you look good in eyebrows,” he remarked. I guess he liked my new hairdo.
We went back home, I got in the bathtub and got out a fresh razor and started shaving the rest of my hair off. Went through two fresh razors. Got a lot of cuts on my scalp, too. But, now it’s all off.
And I'm all done. The treatments are all done, I’m not on any more drugs, and all I have to do now is recover. Kathy and I leave in the morning for Alaska for the R&R I mentioned a few weeks ago. We’ll be staying with the lovely Clovis and curmudgeonly Phil at the Alaska Wolfhouse B&B in Juneau for a few days as I rest up, and Kathy will be able to rest as well, as she won’t be “on duty” the whole time, and will be cared for as well. She deserves a rest too.
It’s a bit surprising that, as long as it took to get there, and with all the complications and problems we had along the way, once we got on with the collection process, it was over in a flash. And I think that will be the end of Book Two, except that there will likely be a postscript or two over the next few weeks. For example, we haven't gotten back the lab tests that will determine if we can actually use the stem cells we collected. If there are too many leukemic cells in the batch, we might, in theory, toss out the whole thing and it will all have been for naught. But we're not going to think that. I’ll pass that information on when we get it. Until then, though, this will be the end of Book Two, and I hope not to start Book Three for a long time.
Bye for now,
Dave
“Frisbeetarianism (n.), The belief that, when you die, your soul goes up on the roof and gets stuck there.”
Work like you don't need the money.
Love like you've never been hurt.
Thursday, March 11, 2004
The DGA Special Humor Edition
Dave’s Great Adventure, Book 2
Chapter 2, Verse 10
March 11, 2004
Special Humor Edition
Hey, if you don’t think there’s anything funny about dying on a cross while you sing songs, well, I‘ve got more stuff for you.
Today I, as my kids would say, "screwed the pooch."
I was in the shower getting ready to go to the lab, early as usual, to get blood drawn. As I was washing up with the washcloth, the tail end of the cloth apparently wrapped around the Optiflow and, that easily, yanked it out of my chest! It was a bit of a flail at the time, as I had soap in my eyes, shampoo in my hair and couldn't see well, but suddenly the catheter was sliding down my chest into the tub, with a stream of blood hot on its heels.
Now, the wound is so high up on my chest that I can't see it without a mirror, so I clawed around madly, trying to see through soap blurred eyes, trying to cover the "exit wound" with one hand to stop the bleeding while I tried to rinse off my head and body with the other, all the time wondering, "Do I put pressure on the skin wound, or on my jugular where the 22 caliber hole is?" I guess my platelets are doing okay. By the time I rinsed off, the bleeding had completely stopped. I walked down to see Kathy with the catheter in my hand, and was met with a gasp. Now, we'll need the damn thing any day now (with luck, if my white count will ever go up) so I called the clinic, with great trepidation, to confess my sin. What they'll have to do is replace it with another, different kind of catheter, before we can collect any stem cells! Dammit! Details to follow.
My white count as of today is exactly, precisely what it has been since we started doing the blood counts. That's not what I wanted to hear. Every day that it stays low delays the start of our collection process. Tomorrow I go downtown for my blood tests and they'll do some more specialized testing of my white cells. Likely more expensive tests, to boot.
I was talking to Joan today. She asked, "What, didn't you have enough material for your DGAs?" Hay Man Ray, up in Montana, said he thought I was catching his “clumsies.” His dad used to say to him that he “was as clumsy as a bear cub masturbating with boxing gloves.” Now, that’s an interesting visual.
See, I thought you’d think that was funny.
I have another short exchange that I’d like to send along to you, an e-mail exchange that had us laughing loudly at the descriptions of two technophobes that some of you know. We’ve been corresponding with Clovis and Phil Dennis up in Juneau since last summer when we stayed in their B&B for a while. Clovis responded to a recent “Adventure” letter, setting off a series of messages. See if this stuff makes you laugh too. Caution: mild profanity ensues!
You guys don’t know Phil, but he and I are both curmudgeonly, anachronistic stick-in-the-muds. We don’t do well with change or new technology.
Last Monday Clovis wrote the following in response to my letter, in which I mentioned getting the new and improved seventeen inch monitor
“As soon as your pop quiz hit my screen, I printed it out, then took it. Did very well too, only missed a couple but finding the answers!! Zowee! I print out everything you send because unlike some people I know, we only have an old 12/13 inch monitor. The letters on our old black keyboard have worn off too, and since Phil types with “two fingers looking,” I painted crude letters on the keys with paint and the sharp point of a pencil. Talk about high tech! We do not want to miss a thing you write and appreciate very much your sharing, so keep those cards and letters coming.... I have a different take on money than most. There is always another dollar to be made and if you have it, use it for what is meaningful to you. And I know your life is meaningful to you and Kathy and a whole lot of other people, so do what you can to keep it viable!”
I responded: “Hey, are you giving me permission to get the $6000 plasma TV, or what?"
I type with two fingers too. I haven't worn off the letters, yet, but I have ruined more than one keyboard by slamming a fist into it when the computer wouldn't do what I thought it was supposed to do. So I get new keyboards frequently! I actually broke the desk one time. I guess I need anger management classes. I get frustrated with technology that (seemingly) gets in the way, rather than helping. Of course, it's really my fault, most of the time.”
Then Phil wrote:
“Morning David: I smile (broadly) at your mention of intemperate behavior vis a vis technology. As a college freshmen and aspiring writer, I therefore assumed I needed to know how to type. How could I become the next Ernie Hemingway in longhand? Then I ran into the GD machine, AND a school marm anal retentive control freak instructor. One fine day when she was castrating us in singsong fashion by subtracting 10 words per mistake, I swept up the dang typewriter in my strong male arms and in one fell rebellious swoop pitched it out the open window. It helped the fall and impact being’s how we were on the building’s third floor! Of course that ended my typing class and mayhaps my writing career. And cost me all the shekels in my jeans. But to this very moment, I have no regrets. So, I identify with you my friend. It's basically a Japanese conspiracy to destroy what little remains of our masculinity and mental health.
And, yes by all means buy the dang plasma TV. Cheers, Phil “
That led to my thoughts on the matter:
“Hi Phil,
I had to laugh out loud while reading your descriptions of the typing class. You had the balls to do what I have always wanted to do. I have felt on so many occasions that it would give me tremendous satisfaction to take the f-ing computer and toss it off our second floor deck. Unfortunately, we have grass below so it wouldn't give a very satisfying "crash" unlike your third floor impact.
At work we went from traditional hand written charts to fully computerized charts about four years ago. Not a good time of my life. "Piece of sh*t!" emanated from my office doors on a regular, almost hourly basis. The fact that I can't type without looking at the keyboard didn't help, as I'd laboriously type (I really mean "peck out" with my forefingers) a long complex patient note, only to look up and find that caps lock had unexpectedly been on the whole, or part of the time, or that I had unexpectedly hit some other key which stopped the note from even being entered, and the note resultantly looked like hell. "Piece of sh*t!" Slam, bang!
The company replaced a couple of keyboards and a few mice, at first. Then I got the word that any more would be at my own expense. They sent someone out to help me learn the computer system. I thought she was a computer geek. She spent hours with me, showing me shortcuts, tricks to make it easier, etc. Only later did I find that she was a shrink sent out as sort of a damage control manager, trying to make me take it easier on the company equipment. Hey, they thought I was crazy or something! "Piece of sh*t!"
Clovis responded:
“Hi David,
Now I know what Kathy has put up with all long years because you sound JUST like Phil!! I'm sure she is like me and doesn't get excited when you rant and rave about technology, but if there is anyone else around, they are certainly taken aback. Even the dogs run and hide when Phil starts yelling to the gods. "Piece of sh*t!" How many times have I heard that! We too laughed out loud at your last descriptions. Wonderful writing. Makes us appreciate even more the effort you have taken to communicate with us. A labor of love really, thank you again.”
And with that, I’ll close. I think this is by far the shortest DGA I’ve sent out since I first got the fuzzies. Enjoy the respite.
Later,
Dave
Chapter 2, Verse 10
March 11, 2004
Special Humor Edition
Hey, if you don’t think there’s anything funny about dying on a cross while you sing songs, well, I‘ve got more stuff for you.
Today I, as my kids would say, "screwed the pooch."
I was in the shower getting ready to go to the lab, early as usual, to get blood drawn. As I was washing up with the washcloth, the tail end of the cloth apparently wrapped around the Optiflow and, that easily, yanked it out of my chest! It was a bit of a flail at the time, as I had soap in my eyes, shampoo in my hair and couldn't see well, but suddenly the catheter was sliding down my chest into the tub, with a stream of blood hot on its heels.
Now, the wound is so high up on my chest that I can't see it without a mirror, so I clawed around madly, trying to see through soap blurred eyes, trying to cover the "exit wound" with one hand to stop the bleeding while I tried to rinse off my head and body with the other, all the time wondering, "Do I put pressure on the skin wound, or on my jugular where the 22 caliber hole is?" I guess my platelets are doing okay. By the time I rinsed off, the bleeding had completely stopped. I walked down to see Kathy with the catheter in my hand, and was met with a gasp. Now, we'll need the damn thing any day now (with luck, if my white count will ever go up) so I called the clinic, with great trepidation, to confess my sin. What they'll have to do is replace it with another, different kind of catheter, before we can collect any stem cells! Dammit! Details to follow.
My white count as of today is exactly, precisely what it has been since we started doing the blood counts. That's not what I wanted to hear. Every day that it stays low delays the start of our collection process. Tomorrow I go downtown for my blood tests and they'll do some more specialized testing of my white cells. Likely more expensive tests, to boot.
I was talking to Joan today. She asked, "What, didn't you have enough material for your DGAs?" Hay Man Ray, up in Montana, said he thought I was catching his “clumsies.” His dad used to say to him that he “was as clumsy as a bear cub masturbating with boxing gloves.” Now, that’s an interesting visual.
See, I thought you’d think that was funny.
I have another short exchange that I’d like to send along to you, an e-mail exchange that had us laughing loudly at the descriptions of two technophobes that some of you know. We’ve been corresponding with Clovis and Phil Dennis up in Juneau since last summer when we stayed in their B&B for a while. Clovis responded to a recent “Adventure” letter, setting off a series of messages. See if this stuff makes you laugh too. Caution: mild profanity ensues!
You guys don’t know Phil, but he and I are both curmudgeonly, anachronistic stick-in-the-muds. We don’t do well with change or new technology.
Last Monday Clovis wrote the following in response to my letter, in which I mentioned getting the new and improved seventeen inch monitor
“As soon as your pop quiz hit my screen, I printed it out, then took it. Did very well too, only missed a couple but finding the answers!! Zowee! I print out everything you send because unlike some people I know, we only have an old 12/13 inch monitor. The letters on our old black keyboard have worn off too, and since Phil types with “two fingers looking,” I painted crude letters on the keys with paint and the sharp point of a pencil. Talk about high tech! We do not want to miss a thing you write and appreciate very much your sharing, so keep those cards and letters coming.... I have a different take on money than most. There is always another dollar to be made and if you have it, use it for what is meaningful to you. And I know your life is meaningful to you and Kathy and a whole lot of other people, so do what you can to keep it viable!”
I responded: “Hey, are you giving me permission to get the $6000 plasma TV, or what?"
I type with two fingers too. I haven't worn off the letters, yet, but I have ruined more than one keyboard by slamming a fist into it when the computer wouldn't do what I thought it was supposed to do. So I get new keyboards frequently! I actually broke the desk one time. I guess I need anger management classes. I get frustrated with technology that (seemingly) gets in the way, rather than helping. Of course, it's really my fault, most of the time.”
Then Phil wrote:
“Morning David: I smile (broadly) at your mention of intemperate behavior vis a vis technology. As a college freshmen and aspiring writer, I therefore assumed I needed to know how to type. How could I become the next Ernie Hemingway in longhand? Then I ran into the GD machine, AND a school marm anal retentive control freak instructor. One fine day when she was castrating us in singsong fashion by subtracting 10 words per mistake, I swept up the dang typewriter in my strong male arms and in one fell rebellious swoop pitched it out the open window. It helped the fall and impact being’s how we were on the building’s third floor! Of course that ended my typing class and mayhaps my writing career. And cost me all the shekels in my jeans. But to this very moment, I have no regrets. So, I identify with you my friend. It's basically a Japanese conspiracy to destroy what little remains of our masculinity and mental health.
And, yes by all means buy the dang plasma TV. Cheers, Phil “
That led to my thoughts on the matter:
“Hi Phil,
I had to laugh out loud while reading your descriptions of the typing class. You had the balls to do what I have always wanted to do. I have felt on so many occasions that it would give me tremendous satisfaction to take the f-ing computer and toss it off our second floor deck. Unfortunately, we have grass below so it wouldn't give a very satisfying "crash" unlike your third floor impact.
At work we went from traditional hand written charts to fully computerized charts about four years ago. Not a good time of my life. "Piece of sh*t!" emanated from my office doors on a regular, almost hourly basis. The fact that I can't type without looking at the keyboard didn't help, as I'd laboriously type (I really mean "peck out" with my forefingers) a long complex patient note, only to look up and find that caps lock had unexpectedly been on the whole, or part of the time, or that I had unexpectedly hit some other key which stopped the note from even being entered, and the note resultantly looked like hell. "Piece of sh*t!" Slam, bang!
The company replaced a couple of keyboards and a few mice, at first. Then I got the word that any more would be at my own expense. They sent someone out to help me learn the computer system. I thought she was a computer geek. She spent hours with me, showing me shortcuts, tricks to make it easier, etc. Only later did I find that she was a shrink sent out as sort of a damage control manager, trying to make me take it easier on the company equipment. Hey, they thought I was crazy or something! "Piece of sh*t!"
Clovis responded:
“Hi David,
Now I know what Kathy has put up with all long years because you sound JUST like Phil!! I'm sure she is like me and doesn't get excited when you rant and rave about technology, but if there is anyone else around, they are certainly taken aback. Even the dogs run and hide when Phil starts yelling to the gods. "Piece of sh*t!" How many times have I heard that! We too laughed out loud at your last descriptions. Wonderful writing. Makes us appreciate even more the effort you have taken to communicate with us. A labor of love really, thank you again.”
And with that, I’ll close. I think this is by far the shortest DGA I’ve sent out since I first got the fuzzies. Enjoy the respite.
Later,
Dave
Wednesday, March 10, 2004
How Low Can Your White Count Go?
Dave’s Great Adventure, Book Two
Chapter 2, Verse 9
March 10, 2004
It’s Limbo Time...again!
About sixteen months ago I used this phrase to describe the fact that my white counts were extremely low. You remember, don’t you? “How low can you go?“ At that time my white counts, after four rounds of chemotherapy, with the previously noted Rituxan Fludara and Cytoxan (FCR for short), were down to 1,100 (normal is about 6,000 to 12,000 for most folks). Some of you may actually recall that event. Well, it turns out I hadn’t seen anything. My white counts are now so low, the lab would call the numbers “panic” values, meaning they would hurriedly call the doctor who was treating the patient with the news that he/she was in critical danger as indicated by the numbers.
But more about that in a moment.
I’m going to send this letter out to the whole mail-list again, as I know at least a few of my correspondents are out of town, and others may have not checked their e-mail from recent days yet, and so don‘t know about my request for a response. Our friends in Castle Rock are in fact in Mexico at this moment, a buddy from here in town is, I know, in San Francisco (what's that town's nickname...?) teaching computer stuff, and I suspect others may be on spring break, etc. So that’s why all of you are still getting this communication, for the moment. But I won’t keep pestering all of you too much longer.
I got a number of comments on the “pop test” that I sent out recently. If anyone out there didn’t look at it because they thought I was seriously sending out a test, look again. I hope you would get a giggle out of it. My wonderful colleague Joan, whose fault it is that there was a test at all (damn, gave away an answer!) wrote “Are you sure somebody didn’t put some LSD in your tubes? I laughed so hard I had tears in my eyes...I’m to blame for all this?”
Atlanta Kathy, who works in a real estate office said, ”I laughed so hard some of the brokers here wanted to read the test. Anyway keep me on the list. I sometimes forget you’re fighting a disease. You make things so funny... only YOU, Dave, could come up with a Pop Test.”
Our friend Cindy in El Paso said she was “worried” about me. Regarding the pop quiz she said: “You know you haven't been going through this round too long yet. I was really worried about you before, but now....now, I'm really worried. This stuff is really getting to you this time. You thought the throwing up was bad; I'm concerned that this side effect might even be worse!! :) And hey, how did you find out about my hooking job??? That's confidential information! :) You still make me laugh!” Actually, Cindy really isn’t a hooker, not that I know of for sure....
My cousin/step-brother Tom, also out in the Hotlanta area, said, “Someone has way too much time on his hands.” Well, that’s true. I’m not working, and I can’t get out of the house much. Hey, what else can I do except dream up pop tests? By the way, Tom didn’t report his score. Could it be that he didn’t do well? What about it, Tom?
Our brother-in-law, the Hay Man Ray (he’s an agronomist at Montana State, in Bozeman, specializing in feed grasses[is that right, Ray?]) said, “I enjoyed your quiz. A different way to keep folks up to date, but a lot of work, I suspect.” Actually it wasn’t a lot of work, just a lot of fun. I didn’t really have to try to make the test tricky like HE does to his students!
Now, my sister, Deb, out in Sacramento (which is near “The City,” hint, hint), hasn’t even taken the test yet. She’ll have to get docked a few points for tardiness. And former colleague, patient and great friend Marcia, from the lovely city of Heidelberg, Germany, said “I loved your pop test and think I did well, only missing three (you caught me on the Mensa thing; wasn’t reading it right, as I know you did that on purpose.” What, me try to trick you guys, my gentle readers, on a pop quiz?
Now, curiously, almost all the folks who wrote back about the “quiz” and actually admitted taking it, reported that they passed with flying colors. I wonder if they really checked their answers against the key. The only honest folks in the bunch were Kathy's sister Carol and husband Frank, down in “Duke City” (hey, that could be another test question...”Where is Duke City, and what is it’s legal name?”). They reported “failing miserably.” But really, how many of you REALLY knew that “The City” on the quiz wasn’t here in Colorado. Probably just my li’l sis who lives in nearby Sacramento (which is “Sacto” in Calspeak).
And my good buddy, former colleague and former boss, Cesar, out in Florida, wrote, “Frankly, I do not know whether - when and if faced with the challenges you are facing- I will be able to keep the even keel and humor that you impart on your notes.”
Well you know, you just can’t take yourself too seriously.
The night before I was to get the Cytoxan, and expecting to become very ill soon after, I lay awake in bed. But what was going through my mind? Worries about the risks, the side effects, the possible fatal outcome (unlikely, but possible)? Not at all. I was thinking about jokes about my therapy. (See, I really am a manic-depressive.) You know, I never heard of hypergraphia before that article from the paper that I recently mentioned (oops, there goes another test answer), but I’m beginning to believe in it!
The next morning the first two hours of the treatment were just hydration through my chest tubes, without any drugs to make me feel goofy. So I spent that time writing down the things I had been thinking about the night before. We’re all going to go through something like this, unless we’re (un)lucky (take your pick) enough to have a sudden massive fatal heart attack, car wreck, or something. Hey, you have to roll with it. You can only do what you can do. Don’t worry about the rest, the things beyond your control.
Now, hold that thought while I go back to the report on my labs, technical stuff in which I’m sure you all will be very interested. I went in for the first of my daily complete blood counts (CBC) Monday. Now that we’re done with all the chemotherapy we need to see how my counts do, and when/if they rebound enough to start the stem cell collection. Man, I’m really anxious to get on with that process, if only to get the tube taken out of my chest. It’s really hard to sleep on the thing, always worrying about pulling on it, feeling the plastic hubs against my skin when I try to sleep on my chest, and just generally being aware of the foreign structure attached to my body.
As an “insider,” I had arranged to sneak in the lab before it opened, avoiding the early morning wait, but more importantly, avoiding the crowds of sick folks, as I expected my white count, the infection fighting cells, to be low. I really don’t want to pick up any infections now, after what I just went through with the RSV (...and what’s that stand for...and how do you spell it? Just checking up on you guys). So we got there at about a quarter ‘til eight, snuck in, got the blood drawn and then left just as the sick hoards were arriving. Then we waited for the call with the results.
Our friend, Christine, who works in the OB clinic and has access to the computer information, was looking for the results for us. They finally showed up by about two in the afternoon. I was amazed! The test showed that my red cells were normal, and my clotting cells, the platelets, were down to about a third normal, but still adequate to make me clot okay, but my white counts! Normal white counts vary from about 3,000 to about 12,000 for most folks, with an average number bring probably 6,000-10,000 white cells per CC of blood. But my white count was 300. That’s not missing a zero. And the count of my bacterial fighting white cells was zero. It was reported as 0.0. There were no detectable “neutrophils” in my blood.
Now, I’ve never, in my medical career, seen numbers that low. Of course, I have rarely worked with leukemic patients on chemotherapy. I would have thought that numbers that low would be incompatible with life. Those numbers are, to be quite frank, scary to a gynecologist! We all have bacteria all over and inside our bodies, and all that’s keeping them from killing us are the white cells, and the antibodies our lymphocytes produce. Right now I know I have deadly bacteria in my sinuses, my gut, my lungs, and on my skin. What I don’t quite understand is why I feel so (relatively) normal. Why am I not sick?
I guess my transplanter doc, Jeff, expected these numbers. I didn’t even get a call advising me of how low they were. He has me on antibiotics, which, in the short term, will help keep many of the bacteria at bay. Meanwhile, I’m washing my hands compulsively, keeping my hands away from my eyes and mouth and hoping that these numbers rebound rapidly before something bad happens. I’m not even brushing my teeth or flossing too vigorously, because each time each of us brushes, we introduce bacteria into our bloodstreams. Normally it’s not a problem; now it could be, for me.
So I snuck into the lab again Tuesday morning, to get another CBC done. Then we went home to be shut-ins again for the rest of the day. We got another call from Christine about mid-afternoon. My numbers hadn’t improved at all. That worried me a bit, so I called the folks at the RMCC and talked to them a bit. It turns out that they expect such numbers on a regular basis after the kind of treatment I’ve gotten. But, they thought I might have rebounded at least a bit. However, since there was no rebound, we won’t start the collection yet. I’ll keep getting my blood counts at my clinic for now and when they finally start up, I’ll be going downtown to the RMCC for labs and, eventually, the big procedure.
In old news, I was talking to our daughter in Dallas. She asked why I was so excited about the new monitor screen, the 17” one that I bought quite by surprise while chemo-brained. She couldn’t understand my enthusiasm. It turns out that she, as a computer geek of sorts at Sprint (don’t call her with any complaints, she just does software applications) has nineteen and twenty-one inch monitors!! She obviously doesn't understand what it’s like to be an amateur on the PC at home!
And through all this, my hair continues to “gently” fall out. It’s noticeably thin now, and I expect a massive fallout soon. And there is no longer any hair on my chest. No, wait...there never was any hair on my chest, sorry. Meanwhile, my beard has essentially stopped growing. Ah, yes, THERE’S the silver lining...I don’t have to expend time and resources on shaving for a while.
And to close, let me go back to not taking one's self too seriously. There’s a little song I’d like to share with you. It’s the ending theme from that wondrously irreverent movie, “The Life of Brian,” done by the Monty Python troupe a number of years ago, as they hung on crosses awaiting execution at the hands of the Romans. If you’d like to listen to it, and see the complete lyrics, you can go to: http://thebards.net/music/lyrics/A_Faire_To_Remember/Bright_Side_Of_Life.shtml
“...always look on the bright side of life
Always look on the light side of life.
For life is quite absurd
and death’s the final word
You must always face the curtain with a bow
Forget about your sin--give the audience a grin
Enjoy it--it’s your last chance anyhow.
So… always look on the bright side of death
Just before you draw your terminal breath.
Life’s a piece of sh*t
When you look at it
Life’s a laugh and death’s a joke it’s true
You’ll see it’s all a show
Keep ‘em laughing as you go
Just remember that the last laugh is on you.
And, always look on the bright side of life
Always look on the right side of life...
...I mean, what have you got to lose? You know, you
come from nothing-- you’re going back to nothing. What have you lost--
Nothing!”
And with that, I’ll ask again, if you haven’t responded, letting me know that you’d like to be kept on this list, just send me a quick “Reply” and I’ll add you to the updated list. My brother, Dan, down Texas way jokes that this is just a cheap way to troll for e-mail. But like I said in the last letter, I truly don’t want to be continually spamming folks who have grown weary of this tale. I suspect most of them will never see the message anyway and will sort of be dropped off without any hurt feelings on either side. I must admit, though, that my request has generated a number of very nice e-mails from friends, just as Dan suspected. I always appreciate hearing from you guys. So, until the inevitable next verse....
Dave
“Life’s a laugh and death’s a joke it’s true
Just remember that the last laugh is on you”
Chapter 2, Verse 9
March 10, 2004
It’s Limbo Time...again!
About sixteen months ago I used this phrase to describe the fact that my white counts were extremely low. You remember, don’t you? “How low can you go?“ At that time my white counts, after four rounds of chemotherapy, with the previously noted Rituxan Fludara and Cytoxan (FCR for short), were down to 1,100 (normal is about 6,000 to 12,000 for most folks). Some of you may actually recall that event. Well, it turns out I hadn’t seen anything. My white counts are now so low, the lab would call the numbers “panic” values, meaning they would hurriedly call the doctor who was treating the patient with the news that he/she was in critical danger as indicated by the numbers.
But more about that in a moment.
I’m going to send this letter out to the whole mail-list again, as I know at least a few of my correspondents are out of town, and others may have not checked their e-mail from recent days yet, and so don‘t know about my request for a response. Our friends in Castle Rock are in fact in Mexico at this moment, a buddy from here in town is, I know, in San Francisco (what's that town's nickname...?) teaching computer stuff, and I suspect others may be on spring break, etc. So that’s why all of you are still getting this communication, for the moment. But I won’t keep pestering all of you too much longer.
I got a number of comments on the “pop test” that I sent out recently. If anyone out there didn’t look at it because they thought I was seriously sending out a test, look again. I hope you would get a giggle out of it. My wonderful colleague Joan, whose fault it is that there was a test at all (damn, gave away an answer!) wrote “Are you sure somebody didn’t put some LSD in your tubes? I laughed so hard I had tears in my eyes...I’m to blame for all this?”
Atlanta Kathy, who works in a real estate office said, ”I laughed so hard some of the brokers here wanted to read the test. Anyway keep me on the list. I sometimes forget you’re fighting a disease. You make things so funny... only YOU, Dave, could come up with a Pop Test.”
Our friend Cindy in El Paso said she was “worried” about me. Regarding the pop quiz she said: “You know you haven't been going through this round too long yet. I was really worried about you before, but now....now, I'm really worried. This stuff is really getting to you this time. You thought the throwing up was bad; I'm concerned that this side effect might even be worse!! :) And hey, how did you find out about my hooking job??? That's confidential information! :) You still make me laugh!” Actually, Cindy really isn’t a hooker, not that I know of for sure....
My cousin/step-brother Tom, also out in the Hotlanta area, said, “Someone has way too much time on his hands.” Well, that’s true. I’m not working, and I can’t get out of the house much. Hey, what else can I do except dream up pop tests? By the way, Tom didn’t report his score. Could it be that he didn’t do well? What about it, Tom?
Our brother-in-law, the Hay Man Ray (he’s an agronomist at Montana State, in Bozeman, specializing in feed grasses[is that right, Ray?]) said, “I enjoyed your quiz. A different way to keep folks up to date, but a lot of work, I suspect.” Actually it wasn’t a lot of work, just a lot of fun. I didn’t really have to try to make the test tricky like HE does to his students!
Now, my sister, Deb, out in Sacramento (which is near “The City,” hint, hint), hasn’t even taken the test yet. She’ll have to get docked a few points for tardiness. And former colleague, patient and great friend Marcia, from the lovely city of Heidelberg, Germany, said “I loved your pop test and think I did well, only missing three (you caught me on the Mensa thing; wasn’t reading it right, as I know you did that on purpose.” What, me try to trick you guys, my gentle readers, on a pop quiz?
Now, curiously, almost all the folks who wrote back about the “quiz” and actually admitted taking it, reported that they passed with flying colors. I wonder if they really checked their answers against the key. The only honest folks in the bunch were Kathy's sister Carol and husband Frank, down in “Duke City” (hey, that could be another test question...”Where is Duke City, and what is it’s legal name?”). They reported “failing miserably.” But really, how many of you REALLY knew that “The City” on the quiz wasn’t here in Colorado. Probably just my li’l sis who lives in nearby Sacramento (which is “Sacto” in Calspeak).
And my good buddy, former colleague and former boss, Cesar, out in Florida, wrote, “Frankly, I do not know whether - when and if faced with the challenges you are facing- I will be able to keep the even keel and humor that you impart on your notes.”
Well you know, you just can’t take yourself too seriously.
The night before I was to get the Cytoxan, and expecting to become very ill soon after, I lay awake in bed. But what was going through my mind? Worries about the risks, the side effects, the possible fatal outcome (unlikely, but possible)? Not at all. I was thinking about jokes about my therapy. (See, I really am a manic-depressive.) You know, I never heard of hypergraphia before that article from the paper that I recently mentioned (oops, there goes another test answer), but I’m beginning to believe in it!
The next morning the first two hours of the treatment were just hydration through my chest tubes, without any drugs to make me feel goofy. So I spent that time writing down the things I had been thinking about the night before. We’re all going to go through something like this, unless we’re (un)lucky (take your pick) enough to have a sudden massive fatal heart attack, car wreck, or something. Hey, you have to roll with it. You can only do what you can do. Don’t worry about the rest, the things beyond your control.
Now, hold that thought while I go back to the report on my labs, technical stuff in which I’m sure you all will be very interested. I went in for the first of my daily complete blood counts (CBC) Monday. Now that we’re done with all the chemotherapy we need to see how my counts do, and when/if they rebound enough to start the stem cell collection. Man, I’m really anxious to get on with that process, if only to get the tube taken out of my chest. It’s really hard to sleep on the thing, always worrying about pulling on it, feeling the plastic hubs against my skin when I try to sleep on my chest, and just generally being aware of the foreign structure attached to my body.
As an “insider,” I had arranged to sneak in the lab before it opened, avoiding the early morning wait, but more importantly, avoiding the crowds of sick folks, as I expected my white count, the infection fighting cells, to be low. I really don’t want to pick up any infections now, after what I just went through with the RSV (...and what’s that stand for...and how do you spell it? Just checking up on you guys). So we got there at about a quarter ‘til eight, snuck in, got the blood drawn and then left just as the sick hoards were arriving. Then we waited for the call with the results.
Our friend, Christine, who works in the OB clinic and has access to the computer information, was looking for the results for us. They finally showed up by about two in the afternoon. I was amazed! The test showed that my red cells were normal, and my clotting cells, the platelets, were down to about a third normal, but still adequate to make me clot okay, but my white counts! Normal white counts vary from about 3,000 to about 12,000 for most folks, with an average number bring probably 6,000-10,000 white cells per CC of blood. But my white count was 300. That’s not missing a zero. And the count of my bacterial fighting white cells was zero. It was reported as 0.0. There were no detectable “neutrophils” in my blood.
Now, I’ve never, in my medical career, seen numbers that low. Of course, I have rarely worked with leukemic patients on chemotherapy. I would have thought that numbers that low would be incompatible with life. Those numbers are, to be quite frank, scary to a gynecologist! We all have bacteria all over and inside our bodies, and all that’s keeping them from killing us are the white cells, and the antibodies our lymphocytes produce. Right now I know I have deadly bacteria in my sinuses, my gut, my lungs, and on my skin. What I don’t quite understand is why I feel so (relatively) normal. Why am I not sick?
I guess my transplanter doc, Jeff, expected these numbers. I didn’t even get a call advising me of how low they were. He has me on antibiotics, which, in the short term, will help keep many of the bacteria at bay. Meanwhile, I’m washing my hands compulsively, keeping my hands away from my eyes and mouth and hoping that these numbers rebound rapidly before something bad happens. I’m not even brushing my teeth or flossing too vigorously, because each time each of us brushes, we introduce bacteria into our bloodstreams. Normally it’s not a problem; now it could be, for me.
So I snuck into the lab again Tuesday morning, to get another CBC done. Then we went home to be shut-ins again for the rest of the day. We got another call from Christine about mid-afternoon. My numbers hadn’t improved at all. That worried me a bit, so I called the folks at the RMCC and talked to them a bit. It turns out that they expect such numbers on a regular basis after the kind of treatment I’ve gotten. But, they thought I might have rebounded at least a bit. However, since there was no rebound, we won’t start the collection yet. I’ll keep getting my blood counts at my clinic for now and when they finally start up, I’ll be going downtown to the RMCC for labs and, eventually, the big procedure.
In old news, I was talking to our daughter in Dallas. She asked why I was so excited about the new monitor screen, the 17” one that I bought quite by surprise while chemo-brained. She couldn’t understand my enthusiasm. It turns out that she, as a computer geek of sorts at Sprint (don’t call her with any complaints, she just does software applications) has nineteen and twenty-one inch monitors!! She obviously doesn't understand what it’s like to be an amateur on the PC at home!
And through all this, my hair continues to “gently” fall out. It’s noticeably thin now, and I expect a massive fallout soon. And there is no longer any hair on my chest. No, wait...there never was any hair on my chest, sorry. Meanwhile, my beard has essentially stopped growing. Ah, yes, THERE’S the silver lining...I don’t have to expend time and resources on shaving for a while.
And to close, let me go back to not taking one's self too seriously. There’s a little song I’d like to share with you. It’s the ending theme from that wondrously irreverent movie, “The Life of Brian,” done by the Monty Python troupe a number of years ago, as they hung on crosses awaiting execution at the hands of the Romans. If you’d like to listen to it, and see the complete lyrics, you can go to: http://thebards.net/music/lyrics/A_Faire_To_Remember/Bright_Side_Of_Life.shtml
“...always look on the bright side of life
Always look on the light side of life.
For life is quite absurd
and death’s the final word
You must always face the curtain with a bow
Forget about your sin--give the audience a grin
Enjoy it--it’s your last chance anyhow.
So… always look on the bright side of death
Just before you draw your terminal breath.
Life’s a piece of sh*t
When you look at it
Life’s a laugh and death’s a joke it’s true
You’ll see it’s all a show
Keep ‘em laughing as you go
Just remember that the last laugh is on you.
And, always look on the bright side of life
Always look on the right side of life...
...I mean, what have you got to lose? You know, you
come from nothing-- you’re going back to nothing. What have you lost--
Nothing!”
And with that, I’ll ask again, if you haven’t responded, letting me know that you’d like to be kept on this list, just send me a quick “Reply” and I’ll add you to the updated list. My brother, Dan, down Texas way jokes that this is just a cheap way to troll for e-mail. But like I said in the last letter, I truly don’t want to be continually spamming folks who have grown weary of this tale. I suspect most of them will never see the message anyway and will sort of be dropped off without any hurt feelings on either side. I must admit, though, that my request has generated a number of very nice e-mails from friends, just as Dan suspected. I always appreciate hearing from you guys. So, until the inevitable next verse....
Dave
“Life’s a laugh and death’s a joke it’s true
Just remember that the last laugh is on you”
Monday, March 8, 2004
Cytoxan, Rituxan, Random Stuff and My Hair Is Falling Out!
Dave’s Great Adventure, Book Two
Chapter 2, Verse 8
March 8, 2004
Steady progress, I guess....
It snowed, gently, Thursday night.
It was still dark when we got up. Kathy and I had to be up early again, by our standards (and I know there are plenty of you who have no sympathy for us, but we have no kids in the house). We had to be back at the Rocky Mountain Cancer Center by eight or so for my last round of Rituxan. That means getting up before six to get ready to leave and for the almost hour long drive. Plus, getting ready to go anywhere in the morning takes longer than it used to. No longer is it just the shower, teeth, shave and deodorant routine. Now I get to dress the “exit wound” on my chest, cleaning it and scrubbing the area with antibacterial stuff, then covering it. I usually tape the tubing to my chest to try to minimize the chance of ripping it out accidentally. Then I clean and flush the tubing every morning with heparin syringes. Then, I get out two vials of Neupogen, pick out appropriate syringes and alcohol swabs, and pick a site in which to inject myself (at about $1000 a shot), rotating the place each morning. Then, I can get dressed.
I came down to eat a quick breakfast that Kathy always has prepared for me. By then the sun was up, and I saw the scene behind our home, the scene left by the spring snowfall. Every branch and every needle on the Austrian pine behind the house was whitened with the weight of its new color. The aspens, still skeletal this time of year, were coated as well, but perhaps not as beautiful. Just across our back fence, all of 20 feet or so from the house, the prairie had been dusted as well. Each stem of prairie grass and each branch of scrub brush and yucca in the green belt leaned under its transient pure color, hiding its autumn colors. A heavier coating than we sometimes see when hoarfrost covers the remaining natural grasses to our north in colder times, certainly, and just as wonderful to behold. We see photographs of such scenes in galleries and on restaurant walls, and always think they are so lovely, so beautiful, and think to ourselves thoughts that compliment the photographer/artist. But the person manning the camera is not the artist. That person merely freezes the visual poetry for others to enjoy. It’s God’s natural beauty that we are gifted with in so many ways, on a regular ever-changing schedule. And it’s all around us, in the trees, like the snow we were seeing, in the faces of our children and grandchildren and spouses, in the orange and blue Bronco sunsets we have over the Rocky Mountains. We just have to see what we’re looking at. Pictures are nice, but we can get the genuine item through our window panes.
We drove downtown to the RMCC. Got there a little early...as usual. We checked in and went to the back, where they were a little surprised to see us for some reason. So we went into a room, I got on the bed and Kathy took the chair, awaiting whatever nurse was to care for me that day. Generally someone is there within a couple of minutes. One young nurse came in; “Are you here for a bone marrow biopsy?“ she asked. I declined the invitation. We waited, waited, waited. I napped. The Cytoxan has again been causing me simultaneous fatigue and insomnia. I’d forgotten about that particular effect. I seem to be tired all the time, but have problems sleeping. After close to an hour Kelly, who had helped us before showed up and got right on things with the infusions, premeds (more than I needed, again) and flushing of lines, etc. She liked me better now that I didn’t require having an IV put in. We gathered from her comments that she didn’t realize that we were to be there early and wasn‘t scheduled to be there until later as she had stayed late the evening before to help with a procedure. But she was great, got things going and very soon we were underway with the last of the four doses of Rituxan that I’ll have to have during this treatment. We were done by noon, despite that late start.
Some of you guys may remember (I say this a lot) that when I had Cytoxan before, ‘way back in “aught 2,” I had unusual cravings, generally for spicy stuff. The cravings hit yesterday while I was getting the Rituxan, and so I got a fix of hot wings on the way home from the clinic. I guess I’m getting to the phase where I can't get fresh stuff for a while (loaded with germs, you know) so hot wings are a good thing.
When we got back to the house, the day had warmed and the spell in the prairie was broken, but now there were birds on the deck pecking through the snow at the birdseed we put out there for them and our friendly squirrel neighbor, Stubby, was back for a handout. Remember? She’s the one that bit me last spring. I can’t tell yet if she’s pregnant again, but she generally is this time of year.
I mentioned not too long ago about the run of things that had been going “aglay” around the house, with the roof, water heater etc. I could have, but didn’t at the time, mention that the power steering pump on the “Ow-di” is also going south. Now, our friend Kent, down in the westerly part of Texas, has an old Taurus with gazillions of miles on it. His power steering pump recently bit the west Texas dust, but he replaced it himself for about $30 or so. I used to enjoy working on my cars by myself, not just for the savings, but for the satisfaction. But now, I can’t fix much of anything on my cars. I can’t even get TO the power steering pump. Our local Audi dealer wants $800+ plus for a new pump. Ow-ch!
And then just a couple of days ago I was on-line looking at some reservations for Dallas to see the kids and grandkids, when the computer monitor blew. Just a little “peep” and it went dark! Now, as I mentioned to others, I don’t know why we can have a television that’s more than a decade old, doing just fine, but the damned computer monitors, just another kind of cathode ray tube, can’t last more than a couple years, even when you get a decent brand.
Like many Americans these days, we’re completely dependent on the bleeping thing. It’s especially bad when we’re housebound, but we use it everyday for lots and lots of things, communication primarily, but ordering stuff, record keeping, making reservations and more. So, we had to go out and get another monitor. Right now! I was a couple days post-Cytoxan and not feeling well, but it wasn't going to get any better. I didn’t want to go out really, but it was late in the evening so we didn’t expect crowds. We could have ordered from Office Max, since they deliver...but of course we couldn’t order on-line...no monitor.
Office Max is less than a mile from home. We went there and looked at their selection. Imagine...they were out of monitors except for some 17 inch CRTs, and we only have space on our desk for a fifteen inch CRT. Out of monitors? Man! So we went further. Circuit City wasn’t too awfully far away.
I have a problem shopping when I’m tired. This has manifested itself over the years when I’ve gone out to buy things after being up for a 24 hour shift at the hospital. I didn’t often make good decisions. I just react. Being on chemo is the same. I don’t process things just exactly right!
We got to Circuit City, went to the monitor section and looked around. Cool! Lots of neat stuff! I bought a 17 inch flat screen monitor! I even bought a four year warranty. I never buy those cheesy worthless warranties. But I didn’t even think about it much. Oh yeah, threw in a DVD of “Apocalypse Now,” too. So now I have to get a $6000 plasma TV so I can watch my DVDs the way they were supposed to be seen (hey, it’s just the chemo talking!). We went home, plugged the monitor in, and installed it despite being somewhat chemo-addled.
WOW!!!
I think back and wonder, how in the hell did we ever survive with that 13 inch B&W monitor back in years past? Speaking of which, how did we manage at all with those old computers? We had a Commodore 64, with all of 40 megs on its hard drive and, what, eight of RAM? Moving from the more recent 15 to the new 17 inch screen was a wondrous thing. Hey, you all should do it, it’ll change your life. Well, maybe. What a nice view we have now, even with a relatively cheap brand (ever heard of LiquidVideo?). Chemo brain worked out well this time.
The Cytoxan effects are very slowly abating, fortunately. No more nausea, the other end of the GI tract has slowed down (too much, actually), and although I’m still tired, I think I’m getting better. But now my hair is falling out, “gently.” Nothing in wads yet, but more and more seems to be dropping out daily. I’m debating getting it all cut off now, versus waiting for the big “fall.” I need a haircut. But I don’t want to get a haircut now and then go back in a week to have my head shaved. What to do? The next thing I have to do is to start getting blood tests every day, starting Monday morning, to see if/when we can start collecting the stem cells.
I’m finding that the costs of this treatment are increasingly expensive, far more than I realized. When I first applied for it about a year ago, and went through the appeals process with my insurer/employer to get the approval, I had estimated the cost to be about $12,000. That was a little low, it turned out. We blew that and more on trying to collect some stem cells in February 2003 but my marrow was too beat up from the previous chemotherapy to produce enough of the little guys. So we waited until the marrow recovered, so we could try again. But by then, the bad guys were back too. So, we had to try some new stuff, a procedure that is used for folks with lymphomas. It’s an “in vivo purge,” which means we’re trying to eliminate most of the bad guys with chemotherapy and then trying to force the stem cells out into circulation so we can catch a few.
This is a much more expensive procedure. I was estimating about $30,000 for this, but the cost keeps going up. It’s costing almost $10,000 a day for my Rituxan treatments alone. I had no idea! It looks like this process is going to end up costing upwards of $60,000!
Now, if that’s not bad enough, consider something that I really haven’t mentioned so far. There really is no guarantee that we’ll even get enough good stem cells. We hope to, and we expect to, but we could be drilling a dry hole with all this stuff. I find it kind of embarrassing that we’re pouring so much money into my veins. Just like you do too, I’m sure, we get letters daily saying something to the effect that, “Your $1.50 will feed this family of four for a week in Uganda,” or something. I’m starting to think, “My God, we could feed the whole freaking village for a year, maybe the whole county, with what I’m using up.” I’m not trying to affect any false modesty, or anything, for I have plenty to be modest about, but this cost just seems incredible. Especially if you go back to my “What’s the point...” letter of a couple of weeks ago. This won’t cure me, it’ll just keep alive longer so I can use up yet more resources.
I guess I’ve used up more than enough of your time, if you’ve followed this stuff all the way to the end. This brings me to something that I’ve been wanting to add to my letters for quite a while. I have to suspect that my “mail list” has grown out of proportion to the number of folks who really have any interest in this interminable tale of woe. I suspect that a number of folks have gotten on the list for some reason or another... they’re a friend, relative, a friend of a friend, or whatever, but have long since lost interest. And I think this is perfectly okay. But I have no desire to continually “spam” folks who don’t care to get uninvited e-mails every few days to every few weeks.
So, if you’ve gotten this far into this letter and still want me to assault you with my stories, just hit the “reply” button or send me a message to the effect that you want to be on the list. If I don’t hear from you, I won’t take any offense at all. I’ll just stop bothering you, okay? And I won’t assume anything about anybody, so this means I want to hear from you too, Mom! If you want to get the letters, of course.
Until I hear from you....
Dave
For those of you who were wondering about the “pop test....” Remember, I’m not working and, “An idle mind is the devil’s workshop.”
Chapter 2, Verse 8
March 8, 2004
Steady progress, I guess....
It snowed, gently, Thursday night.
It was still dark when we got up. Kathy and I had to be up early again, by our standards (and I know there are plenty of you who have no sympathy for us, but we have no kids in the house). We had to be back at the Rocky Mountain Cancer Center by eight or so for my last round of Rituxan. That means getting up before six to get ready to leave and for the almost hour long drive. Plus, getting ready to go anywhere in the morning takes longer than it used to. No longer is it just the shower, teeth, shave and deodorant routine. Now I get to dress the “exit wound” on my chest, cleaning it and scrubbing the area with antibacterial stuff, then covering it. I usually tape the tubing to my chest to try to minimize the chance of ripping it out accidentally. Then I clean and flush the tubing every morning with heparin syringes. Then, I get out two vials of Neupogen, pick out appropriate syringes and alcohol swabs, and pick a site in which to inject myself (at about $1000 a shot), rotating the place each morning. Then, I can get dressed.
I came down to eat a quick breakfast that Kathy always has prepared for me. By then the sun was up, and I saw the scene behind our home, the scene left by the spring snowfall. Every branch and every needle on the Austrian pine behind the house was whitened with the weight of its new color. The aspens, still skeletal this time of year, were coated as well, but perhaps not as beautiful. Just across our back fence, all of 20 feet or so from the house, the prairie had been dusted as well. Each stem of prairie grass and each branch of scrub brush and yucca in the green belt leaned under its transient pure color, hiding its autumn colors. A heavier coating than we sometimes see when hoarfrost covers the remaining natural grasses to our north in colder times, certainly, and just as wonderful to behold. We see photographs of such scenes in galleries and on restaurant walls, and always think they are so lovely, so beautiful, and think to ourselves thoughts that compliment the photographer/artist. But the person manning the camera is not the artist. That person merely freezes the visual poetry for others to enjoy. It’s God’s natural beauty that we are gifted with in so many ways, on a regular ever-changing schedule. And it’s all around us, in the trees, like the snow we were seeing, in the faces of our children and grandchildren and spouses, in the orange and blue Bronco sunsets we have over the Rocky Mountains. We just have to see what we’re looking at. Pictures are nice, but we can get the genuine item through our window panes.
We drove downtown to the RMCC. Got there a little early...as usual. We checked in and went to the back, where they were a little surprised to see us for some reason. So we went into a room, I got on the bed and Kathy took the chair, awaiting whatever nurse was to care for me that day. Generally someone is there within a couple of minutes. One young nurse came in; “Are you here for a bone marrow biopsy?“ she asked. I declined the invitation. We waited, waited, waited. I napped. The Cytoxan has again been causing me simultaneous fatigue and insomnia. I’d forgotten about that particular effect. I seem to be tired all the time, but have problems sleeping. After close to an hour Kelly, who had helped us before showed up and got right on things with the infusions, premeds (more than I needed, again) and flushing of lines, etc. She liked me better now that I didn’t require having an IV put in. We gathered from her comments that she didn’t realize that we were to be there early and wasn‘t scheduled to be there until later as she had stayed late the evening before to help with a procedure. But she was great, got things going and very soon we were underway with the last of the four doses of Rituxan that I’ll have to have during this treatment. We were done by noon, despite that late start.
Some of you guys may remember (I say this a lot) that when I had Cytoxan before, ‘way back in “aught 2,” I had unusual cravings, generally for spicy stuff. The cravings hit yesterday while I was getting the Rituxan, and so I got a fix of hot wings on the way home from the clinic. I guess I’m getting to the phase where I can't get fresh stuff for a while (loaded with germs, you know) so hot wings are a good thing.
When we got back to the house, the day had warmed and the spell in the prairie was broken, but now there were birds on the deck pecking through the snow at the birdseed we put out there for them and our friendly squirrel neighbor, Stubby, was back for a handout. Remember? She’s the one that bit me last spring. I can’t tell yet if she’s pregnant again, but she generally is this time of year.
I mentioned not too long ago about the run of things that had been going “aglay” around the house, with the roof, water heater etc. I could have, but didn’t at the time, mention that the power steering pump on the “Ow-di” is also going south. Now, our friend Kent, down in the westerly part of Texas, has an old Taurus with gazillions of miles on it. His power steering pump recently bit the west Texas dust, but he replaced it himself for about $30 or so. I used to enjoy working on my cars by myself, not just for the savings, but for the satisfaction. But now, I can’t fix much of anything on my cars. I can’t even get TO the power steering pump. Our local Audi dealer wants $800+ plus for a new pump. Ow-ch!
And then just a couple of days ago I was on-line looking at some reservations for Dallas to see the kids and grandkids, when the computer monitor blew. Just a little “peep” and it went dark! Now, as I mentioned to others, I don’t know why we can have a television that’s more than a decade old, doing just fine, but the damned computer monitors, just another kind of cathode ray tube, can’t last more than a couple years, even when you get a decent brand.
Like many Americans these days, we’re completely dependent on the bleeping thing. It’s especially bad when we’re housebound, but we use it everyday for lots and lots of things, communication primarily, but ordering stuff, record keeping, making reservations and more. So, we had to go out and get another monitor. Right now! I was a couple days post-Cytoxan and not feeling well, but it wasn't going to get any better. I didn’t want to go out really, but it was late in the evening so we didn’t expect crowds. We could have ordered from Office Max, since they deliver...but of course we couldn’t order on-line...no monitor.
Office Max is less than a mile from home. We went there and looked at their selection. Imagine...they were out of monitors except for some 17 inch CRTs, and we only have space on our desk for a fifteen inch CRT. Out of monitors? Man! So we went further. Circuit City wasn’t too awfully far away.
I have a problem shopping when I’m tired. This has manifested itself over the years when I’ve gone out to buy things after being up for a 24 hour shift at the hospital. I didn’t often make good decisions. I just react. Being on chemo is the same. I don’t process things just exactly right!
We got to Circuit City, went to the monitor section and looked around. Cool! Lots of neat stuff! I bought a 17 inch flat screen monitor! I even bought a four year warranty. I never buy those cheesy worthless warranties. But I didn’t even think about it much. Oh yeah, threw in a DVD of “Apocalypse Now,” too. So now I have to get a $6000 plasma TV so I can watch my DVDs the way they were supposed to be seen (hey, it’s just the chemo talking!). We went home, plugged the monitor in, and installed it despite being somewhat chemo-addled.
WOW!!!
I think back and wonder, how in the hell did we ever survive with that 13 inch B&W monitor back in years past? Speaking of which, how did we manage at all with those old computers? We had a Commodore 64, with all of 40 megs on its hard drive and, what, eight of RAM? Moving from the more recent 15 to the new 17 inch screen was a wondrous thing. Hey, you all should do it, it’ll change your life. Well, maybe. What a nice view we have now, even with a relatively cheap brand (ever heard of LiquidVideo?). Chemo brain worked out well this time.
The Cytoxan effects are very slowly abating, fortunately. No more nausea, the other end of the GI tract has slowed down (too much, actually), and although I’m still tired, I think I’m getting better. But now my hair is falling out, “gently.” Nothing in wads yet, but more and more seems to be dropping out daily. I’m debating getting it all cut off now, versus waiting for the big “fall.” I need a haircut. But I don’t want to get a haircut now and then go back in a week to have my head shaved. What to do? The next thing I have to do is to start getting blood tests every day, starting Monday morning, to see if/when we can start collecting the stem cells.
I’m finding that the costs of this treatment are increasingly expensive, far more than I realized. When I first applied for it about a year ago, and went through the appeals process with my insurer/employer to get the approval, I had estimated the cost to be about $12,000. That was a little low, it turned out. We blew that and more on trying to collect some stem cells in February 2003 but my marrow was too beat up from the previous chemotherapy to produce enough of the little guys. So we waited until the marrow recovered, so we could try again. But by then, the bad guys were back too. So, we had to try some new stuff, a procedure that is used for folks with lymphomas. It’s an “in vivo purge,” which means we’re trying to eliminate most of the bad guys with chemotherapy and then trying to force the stem cells out into circulation so we can catch a few.
This is a much more expensive procedure. I was estimating about $30,000 for this, but the cost keeps going up. It’s costing almost $10,000 a day for my Rituxan treatments alone. I had no idea! It looks like this process is going to end up costing upwards of $60,000!
Now, if that’s not bad enough, consider something that I really haven’t mentioned so far. There really is no guarantee that we’ll even get enough good stem cells. We hope to, and we expect to, but we could be drilling a dry hole with all this stuff. I find it kind of embarrassing that we’re pouring so much money into my veins. Just like you do too, I’m sure, we get letters daily saying something to the effect that, “Your $1.50 will feed this family of four for a week in Uganda,” or something. I’m starting to think, “My God, we could feed the whole freaking village for a year, maybe the whole county, with what I’m using up.” I’m not trying to affect any false modesty, or anything, for I have plenty to be modest about, but this cost just seems incredible. Especially if you go back to my “What’s the point...” letter of a couple of weeks ago. This won’t cure me, it’ll just keep alive longer so I can use up yet more resources.
I guess I’ve used up more than enough of your time, if you’ve followed this stuff all the way to the end. This brings me to something that I’ve been wanting to add to my letters for quite a while. I have to suspect that my “mail list” has grown out of proportion to the number of folks who really have any interest in this interminable tale of woe. I suspect that a number of folks have gotten on the list for some reason or another... they’re a friend, relative, a friend of a friend, or whatever, but have long since lost interest. And I think this is perfectly okay. But I have no desire to continually “spam” folks who don’t care to get uninvited e-mails every few days to every few weeks.
So, if you’ve gotten this far into this letter and still want me to assault you with my stories, just hit the “reply” button or send me a message to the effect that you want to be on the list. If I don’t hear from you, I won’t take any offense at all. I’ll just stop bothering you, okay? And I won’t assume anything about anybody, so this means I want to hear from you too, Mom! If you want to get the letters, of course.
Until I hear from you....
Dave
For those of you who were wondering about the “pop test....” Remember, I’m not working and, “An idle mind is the devil’s workshop.”
Friday, March 5, 2004
The DGA Pop Quiz
Dave’s Great Adventure, Book 2
Special Continuing Education Edition
Pop Quiz
March 5, 2004
Alright class, put away all those detailed, copious, carefully printed out notes. Now’s the time to see if you’ve been paying attention. Yeah, you in the back...I know I didn’t announce that there would be a pop test. If I had, it wouldn’t be a pop test, now would it? Sit down! You have thirty minutes. Time starts now!
1.) The tube in my chest is:
a) Too big
b) Too small
c) Just right
d) The size of a Burger King soda straw
e) a and d
2.) The phrase “gang aft aglay” refers to:
a) Mutineers playing at the back of the ship.
b) German for “I went back to town.”
c) The Jets and the Sharks (you know, the gangs...in West Side Story...remember?) are at it again.
d) The fact that the plans of both humanoids and murine species often go awry.
3.) When you hear “murine,” you think:
a) “Gets the red out!”
b) Somebody can’t say Marine correctly.
c) Ships and water
d) Of a small species of mammal whose plans gang aft aglay.
4.) Complete the sentence: “Omigod, that’s not _____________!
a) Ollie North
b) an Osterizer
c) an Optimizer
d) an Optiflow
5.) RSV stands for:
a) Respondez S’il Vous (Plait)
b) Really strong vermin!
c) Respiratory Something-or-other Virus
d) Revised Standard Version
6.) The things in life that we have always with us are:
a) Death
b) Taxes
c) Home Maintenance
d) Milk going bad in the fridge
e) Most of the above
7.) The chair junkyard is:
a) a place in Africa where old chairs go to die.
b) American Furniture Warehouse
c) where ever our youngest happens to live
d) a corner of our basement
8.) The essay “Death in the Open” by Lewis Thomas, MD, first appeared in:
a) Sniper Magazine
b) Guns and Ammo
c) The American Coroner Magazine
d) New England Journal of Medicine
9.) DGA stands for:
a) Damned Good Ale
b) Deaf Golf Association
c) Dave Gets Antibodies
d) Some guy’s Adventures With Leukemia
10.) RSV is usually found in:
a) murine species
b) young children
c) penguins
d) middle aged male doctors
11.) Robert Burns:
a) The Garbage In The Backyard Instead Of At The Dump!
b) works at RMCC
c) has RSV
d) was a Scottish poet who never learned to write in proper English
12.) Rituximab:
a) is slang for “The right Tuxedo, maybe” in parts of New York
b) Latin for “Two cheeseburgers to go.”
c) is in the lyrics of “Innagaddavida, baby”
d) is a murine monoclonal antibody, whatever that is!
13.) Doc Jamboz said to me, “Don’t cough when...”
a) I’m checking your prostate
b) I’m checking your hernia
c) I’m going for your jugular
d) you’re trying to pee or you'll get your pants wet!
e) all of the above at the same time
14.) El Tejado:
a) means “Red Tile Roof”
b) sells great cheeseburgers and fries
c) has wonderful chilaquiles
d) all of the above
15.) What’s the point...
a) the grass will just grow again!
b) my hair will still need to be cut again next month anyway
c) the laundry hamper will be full again in a week, won’t it?
d) all of the above
16.) Lewis Carroll was such a good writer because:
a) he got hit in the head with a large rock and suffered brain damage as a child
b) one pill made him larger, and one pill made him small, and the pills that mother gave him, didn’t do anything at all
c) Go ask Alice, when she was just small....
d) he had epilepsy and resultant hypergraphia, one presumes
17.) The person most to blame for this test is:
a) the boy who hit me in the head with a large rock when I was eight and caused my hypergraphia
b) the doc who put me on all those migraine medications and gave me hypergraphia
c) the doctor who delivered me and caused my birth injury, making me a manic depressive
d) Joan, who suggested I keep a journal of this adventure
18.) The condition known as hypergraphia:
a) refers to engineers who are always plotting X and Y on that funny lined paper
b) people who sign really big autographs
c) very large etchings done with an Etch-A-Sketch
d) a made-up medical condition describing people who write compulsively, so that other people will realize that I, I mean they, really have a problem and they really aren’t crazy, and people should treat them with sympathy instead of with disdain, because they can’t help it. And it was caused by that kid who hit me in the head with a big rock when I was just eight! It’s not my fault!
19.) The tube hanging out of my chest is:
a) a pain in the neck
b) a pain in the chest
c) a pain in the ass
d) all of the above
20.) Stem cells are:
a) small groups of Al Quaida members who are dyslexic baseball fans and spell “Mets” backwards, because they got hit in the head with a rock when they were eight years old!
b) amoeboid cells found in pipe stems that, when inhaled, cause hypergraphia
c) jails for bad stems
d) Big Momma blood cells that grow all the other blood cells
21.) Which famous philosopher asked the question, “Why does God cause things like tornadoes...and train wrecks?”
a) Immanuel Kant
b) Timothy Leary
c) Diogenes
d) Crash Test Dummies
22.) What is Mesna?
a) a bunch of smarty pants folks who think they’re smarter than the rest of us just ‘cause they’ve got high IQs
b) Mars Explorer Sends News Aloft
c) a drug to protect against the cytological grim reaper
d) an ingredient in Big Mac’s special sauce
23.) A Kaiserschnitt is:
a) a cold cut like a piece of bologna
b) a long roll for a sub sandwich
c)a German word for C-section
d) a bit of Kaiser excrement
24.) The warranty on our water heater was:
a) 20 years
b) 12 years
c) 16 years
d) six months less than the time it took to rust out
25.) The City Grille:
a) has burgers with guacamole-picante-cilantro blue cheese spread
b) is well-known for its gorgonzola wine cheese sauce
c) is in “The City”
d) has plain ole burgers
e) c and d
26.) Health is:
a) the absence of disease
b) a good thing
c) merely the slowest possible way that one can die
d) all the above
27.) Cytoxan side-effects include all except:
a) pancytopenia
b) hemorrhagic cystitis
c) alopecia
d) an intense itching in the armpits which really tickles when you try to wash there in the morning
28.) “We are too soon old, and too late _______:”
a) wealthy
b) wise
c) wrinkled
d) pregnant
29.) The tube hanging out of my chest looks like a(n) inverted:
a) Y
b) M
c) C
d) A
e) they have everything for you men to enjoy, you can hang out with all the boys ....
30.) More than anything else, I hate:
a) having my back scratched
b) eating frozen custard at the place called CJ’s
c) vomiting
d) holding Kathy’s hand
EXTRA CREDIT: Without looking at your notes, or doing a Google search, correctly spell what RSV stands for:___________ .
Now, I have applied to The Health Institute Science Inquiry Service for Certifying Really Awful Posttests and I’m proud to say that THIS IS CRAP has certified the DGA series for 3 minutes and 16 seconds of Continuing Medical Education, or 0.05 units of Continuing Nursing Education. It has also been approved for 4 seconds of Continuing Legal Education. If you are an engineer, professor, hooker, journalist, teacher, real estate agent, do nails for a living or you run a B&B, apply to your local licensing board for approval for your continuing education. All costs are completely tax deductible, if you (please) send me any money.
This will be a self-graded exercise (because I trust you all).
ANSWERS:
1) e 6) e 11) d 16) d 21) d 26) d
2) d 7) d 12) d 17) d 22) c 27) d
3) d 8) d 13) c 18) d 23) c 28) b
4) d 9) d 14) d 19) d 24) d 29) a
5) c 10)b 15) d 20) d 25) d 30) c
Extra Credit Answer: Respiratory Syncytial Virus
Special Continuing Education Edition
Pop Quiz
March 5, 2004
Alright class, put away all those detailed, copious, carefully printed out notes. Now’s the time to see if you’ve been paying attention. Yeah, you in the back...I know I didn’t announce that there would be a pop test. If I had, it wouldn’t be a pop test, now would it? Sit down! You have thirty minutes. Time starts now!
1.) The tube in my chest is:
a) Too big
b) Too small
c) Just right
d) The size of a Burger King soda straw
e) a and d
2.) The phrase “gang aft aglay” refers to:
a) Mutineers playing at the back of the ship.
b) German for “I went back to town.”
c) The Jets and the Sharks (you know, the gangs...in West Side Story...remember?) are at it again.
d) The fact that the plans of both humanoids and murine species often go awry.
3.) When you hear “murine,” you think:
a) “Gets the red out!”
b) Somebody can’t say Marine correctly.
c) Ships and water
d) Of a small species of mammal whose plans gang aft aglay.
4.) Complete the sentence: “Omigod, that’s not _____________!
a) Ollie North
b) an Osterizer
c) an Optimizer
d) an Optiflow
5.) RSV stands for:
a) Respondez S’il Vous (Plait)
b) Really strong vermin!
c) Respiratory Something-or-other Virus
d) Revised Standard Version
6.) The things in life that we have always with us are:
a) Death
b) Taxes
c) Home Maintenance
d) Milk going bad in the fridge
e) Most of the above
7.) The chair junkyard is:
a) a place in Africa where old chairs go to die.
b) American Furniture Warehouse
c) where ever our youngest happens to live
d) a corner of our basement
8.) The essay “Death in the Open” by Lewis Thomas, MD, first appeared in:
a) Sniper Magazine
b) Guns and Ammo
c) The American Coroner Magazine
d) New England Journal of Medicine
9.) DGA stands for:
a) Damned Good Ale
b) Deaf Golf Association
c) Dave Gets Antibodies
d) Some guy’s Adventures With Leukemia
10.) RSV is usually found in:
a) murine species
b) young children
c) penguins
d) middle aged male doctors
11.) Robert Burns:
a) The Garbage In The Backyard Instead Of At The Dump!
b) works at RMCC
c) has RSV
d) was a Scottish poet who never learned to write in proper English
12.) Rituximab:
a) is slang for “The right Tuxedo, maybe” in parts of New York
b) Latin for “Two cheeseburgers to go.”
c) is in the lyrics of “Innagaddavida, baby”
d) is a murine monoclonal antibody, whatever that is!
13.) Doc Jamboz said to me, “Don’t cough when...”
a) I’m checking your prostate
b) I’m checking your hernia
c) I’m going for your jugular
d) you’re trying to pee or you'll get your pants wet!
e) all of the above at the same time
14.) El Tejado:
a) means “Red Tile Roof”
b) sells great cheeseburgers and fries
c) has wonderful chilaquiles
d) all of the above
15.) What’s the point...
a) the grass will just grow again!
b) my hair will still need to be cut again next month anyway
c) the laundry hamper will be full again in a week, won’t it?
d) all of the above
16.) Lewis Carroll was such a good writer because:
a) he got hit in the head with a large rock and suffered brain damage as a child
b) one pill made him larger, and one pill made him small, and the pills that mother gave him, didn’t do anything at all
c) Go ask Alice, when she was just small....
d) he had epilepsy and resultant hypergraphia, one presumes
17.) The person most to blame for this test is:
a) the boy who hit me in the head with a large rock when I was eight and caused my hypergraphia
b) the doc who put me on all those migraine medications and gave me hypergraphia
c) the doctor who delivered me and caused my birth injury, making me a manic depressive
d) Joan, who suggested I keep a journal of this adventure
18.) The condition known as hypergraphia:
a) refers to engineers who are always plotting X and Y on that funny lined paper
b) people who sign really big autographs
c) very large etchings done with an Etch-A-Sketch
d) a made-up medical condition describing people who write compulsively, so that other people will realize that I, I mean they, really have a problem and they really aren’t crazy, and people should treat them with sympathy instead of with disdain, because they can’t help it. And it was caused by that kid who hit me in the head with a big rock when I was just eight! It’s not my fault!
19.) The tube hanging out of my chest is:
a) a pain in the neck
b) a pain in the chest
c) a pain in the ass
d) all of the above
20.) Stem cells are:
a) small groups of Al Quaida members who are dyslexic baseball fans and spell “Mets” backwards, because they got hit in the head with a rock when they were eight years old!
b) amoeboid cells found in pipe stems that, when inhaled, cause hypergraphia
c) jails for bad stems
d) Big Momma blood cells that grow all the other blood cells
21.) Which famous philosopher asked the question, “Why does God cause things like tornadoes...and train wrecks?”
a) Immanuel Kant
b) Timothy Leary
c) Diogenes
d) Crash Test Dummies
22.) What is Mesna?
a) a bunch of smarty pants folks who think they’re smarter than the rest of us just ‘cause they’ve got high IQs
b) Mars Explorer Sends News Aloft
c) a drug to protect against the cytological grim reaper
d) an ingredient in Big Mac’s special sauce
23.) A Kaiserschnitt is:
a) a cold cut like a piece of bologna
b) a long roll for a sub sandwich
c)a German word for C-section
d) a bit of Kaiser excrement
24.) The warranty on our water heater was:
a) 20 years
b) 12 years
c) 16 years
d) six months less than the time it took to rust out
25.) The City Grille:
a) has burgers with guacamole-picante-cilantro blue cheese spread
b) is well-known for its gorgonzola wine cheese sauce
c) is in “The City”
d) has plain ole burgers
e) c and d
26.) Health is:
a) the absence of disease
b) a good thing
c) merely the slowest possible way that one can die
d) all the above
27.) Cytoxan side-effects include all except:
a) pancytopenia
b) hemorrhagic cystitis
c) alopecia
d) an intense itching in the armpits which really tickles when you try to wash there in the morning
28.) “We are too soon old, and too late _______:”
a) wealthy
b) wise
c) wrinkled
d) pregnant
29.) The tube hanging out of my chest looks like a(n) inverted:
a) Y
b) M
c) C
d) A
e) they have everything for you men to enjoy, you can hang out with all the boys ....
30.) More than anything else, I hate:
a) having my back scratched
b) eating frozen custard at the place called CJ’s
c) vomiting
d) holding Kathy’s hand
EXTRA CREDIT: Without looking at your notes, or doing a Google search, correctly spell what RSV stands for:___________ .
Now, I have applied to The Health Institute Science Inquiry Service for Certifying Really Awful Posttests and I’m proud to say that THIS IS CRAP has certified the DGA series for 3 minutes and 16 seconds of Continuing Medical Education, or 0.05 units of Continuing Nursing Education. It has also been approved for 4 seconds of Continuing Legal Education. If you are an engineer, professor, hooker, journalist, teacher, real estate agent, do nails for a living or you run a B&B, apply to your local licensing board for approval for your continuing education. All costs are completely tax deductible, if you (please) send me any money.
This will be a self-graded exercise (because I trust you all).
ANSWERS:
1) e 6) e 11) d 16) d 21) d 26) d
2) d 7) d 12) d 17) d 22) c 27) d
3) d 8) d 13) c 18) d 23) c 28) b
4) d 9) d 14) d 19) d 24) d 29) a
5) c 10)b 15) d 20) d 25) d 30) c
Extra Credit Answer: Respiratory Syncytial Virus
Wednesday, March 3, 2004
Finally, the Cytoxan and Associated Adventures!
Dave’s Great Adventure, Book 2
Chapter 2, Verse 7
March 3, 2004
Cytoxan, ... finally.
March 1st came around, and we went back to the clinic. My chest was feeling fine. It was the day I’d been anxiously awaiting and at the same time, in some ways, dreading. I needed to get past this date to get anything done, but I expected some bad days after they give me the Cytoxan. Remember what that is? Cytoxan = “Cyto”= cell and “toxin”= poison. They’re going to give me cell killer! As our daughter asked, “Why are you so anxious to get that stuff that’s going to make you feel like crap?”
Kathy I went in, early, of course, and checked in. At least we didn’t beat the staff in this time. Our nurse was Poppy, a real nice gal in her early thirties who exuded the air of someone who knew exactly what she was doing. I appreciated that. She didn’t even wait for the doc to come around and check me out, so well was I doing as compared to the previous Friday when we had met and I was still coughing and wheezing. She told me what we were going to do, gave me a list of Cytoxan side effects to look over (sinus congestion, nausea and vomiting, delayed nausea and vomiting, esophagitis, diarrhea, alopecia [baldness], pancytopenia [loss of adequate blood cells off all types, needing transfusions, etc.], hemorrhagic cystitis [bloody urine], cardiotoxicity which may decrease the heart's ability to pump blood, reproductive dysfunction [no longer a worry around these parts], and pulmonary fibrosis, which is a disease which has killed two of my cousins on my Mom's side. Yee Hah! Let the good times roll!) and started.
Let me spend a moment telling you about how much Cytoxan they’re giving me this time. Long time readers of this series may remember that I have had this drug before, when I was getting my first rounds of chemotherapy from July to October 2002, and that I was wiped out for days with “the fuzzies,” etc., when I couldn‘t think, do much, and just lay (or lie?) around the house for days. Well, back then, they were giving me 750mg (3/4 of a gram) a day, for three days in a row, with a couple of other meds too. Now they're giving me almost 6 grams of the stuff all at once, about eight times as much as I have ever gotten in a day, and about three times as much as I’ve ever gotten in any one week before. Man, they’re really going to pound away at my marrow this time!
But before they started it, they gave me another drug that I hadn’t had before. They infused some Mesna, a “cytoprotective” drug. I don’t know how it works, but it’s supposed to protect my vital organs from the Cytoxan somehow. That could be a good thing, protecting my vital organs before we loose the Cytological Grim Reaper, swinging a very large scythe, cutting down the good and bad guys all at once.
Then it started. It’s looks so benign. Many of the poisons we give to people have nasty, ominous colors. Yellows, reds, off-colors. Cytoxan, just like the Rituxan, the saline, the steroids and the Anzemet, were all just clear fluids. You couldn’t tell one from the other in the various tubes which were draining into my chest. The infusion took two hours. I was feeling bad before it was over...”woozy,” I told Kathy. I was unsteady when I got up to go to the bathroom and I couldn’t focus well. But, I didn’t feel at all nauseated. I was happy about that because I HATE to throw up! I was getting a headache, though, supposedly from the Anzemet (the antinausea medication). After the infusion came two more hours of hydration to help keep my kidneys flushed and minimize damage to them.
Now, initially, I was told I would be admitted to the hospital overnight to continue the hydration for 24 hours. Then, that was changed to having a home health nurse come out to manage IV’s for me at home. Then, that was changed to me going home with what is actually a backpack with a pump, batteries, and bags of fluids to use at home. Hey, don’t you love HMOs? However, I have to admit that I liked the backpack idea better than going to the hospital or having a nurse come to the house. The latter would have required a major house cleaning!
So they hooked me up to this backpack, which also has a handle so you can carry it like a briefcase if you want to, which I did, and put in the biggest bag of IV fluids I think I’ve ever seen, 2 1/2 liters. It looked more like an enema bag or something. And that was just the first of two IV bags we took home with us. The pump inside pumped the fluids out of the bag and into the tubing and then up under my shirt into my chest. A bit awkward, but manageable. The backpack also had another little pump, a little round spring loaded pump about the size of a Big Mac which contained more Mesna, to keep an infusion of it going during the night too. I liked that too, but wondered, “What if the spring breaks, or gets jammed, or something?”
We got home okay, and I headed straight for the couch. Kathy fixed a small meal, but I couldn’t each much, not from nausea but just from fatigue. I finally went upstairs to try to get some sleep at about nine. I wasn’t being much fun anyway!
Sleeping presented a problem. I was attached to a backpack by about five feet of tubing which was attached to the right side of my chest. We decided my best bet was to try to sleep in the recliner for the night. That would also put me much closer to the bathroom if I were to have problems during the night. So I did. But soon, the pump started beeping at me. Some kind of code I didn’t understand. “Beep, Beep Beep.” Then, “Beep Beep, Beep.” Then, “Beep Beep Beep, Beep.” I dragged myself into the bathroom, turned on the light, opened the backpack and looked for error messages or something. I couldn’t find a problem, so I put the damned thing back together (really an awkward thing to do when you're tired and inexperienced with the mechanism). I crawled back in the recliner and tried to get my headache to go away. I didn't know what medications I could safely take with the Cytoxan on board so I was being more cautious with meds than I usually am.
Things really broke loose at about midnight! The pump began making alarming beeps continuously. I again got up, went into the bathroom and turned on the light. I sat on the floor and disassembled the backpack to get at the pump. This time it said the battery was low. Well, they had provided about a half dozen more batteries with the pack, so I proceeded to replace the bad one, not too much of a problem. But when I got it replaced, the pump then said my fluids were low. Sure enough, the huge 2 1/2 liter bag was down to about 50cc. Problem! The replacement bag was downstairs and I had the backpack and tubing all in pieces. I called to Kathy, several times, actually, as she was sound asleep. But when she woke, she saw me in the bathroom with pump and bag parts scattered all round me and thought disaster had struck and she came running. I told her nothing serious was happening, but I needed the second bag brought up. We were then sitting on the floor, trying to figure out how to get the second bag threaded through the pump when the next problem hit.
I had to throw up. Suddenly, without warning, in less time than it has taken you to read this, I had to throw up. But, I had the replacement bag of fluids in my hand, the bag was opened with the pump on the floor, still attached to my chest by my tubing, and the backpack was in front of me, all of it interconnected. And all this stuff was between me and the toilet! I madly clambered over all the bags, tubing and equipment, towards the toilet, dragging all the stuff by my chest tubing. Ouch! I almost made it. Actually I made it for most of the event, but I couldn’t crawl fast enough to reach the toilet for the first “burst,” if you will. And, there, I vomited from my toes. And this kept on, until there was nothing left. (I’ll spare you any more vomit details)
When it was over, Kathy helped me clean up, both myself and the floor, but we still hadn’t replaced the bag of fluids. With a little effort, through chemo impaired and sleep deprived minds, we finally got it figured out and got me back into the recliner. The rest of the night was, thankfully, uneventful. Not restful, but uneventful, as Kathy and I both kept listening for the quiet “grunch-grunch” sound of the pump every couple of seconds, to make sure it was working, and to make sure we didn’t sleep through any frantic beeping!
We had to be back at the clinic the next morning by nine, so we got up, very slowly, at seven. On the way back downtown the battery needed to be replaced again; no problem this time. When I got there, Poppy looked at me and said, “Bad night, huh?” She could tell. I was weighed, and had gained nine pounds overnight; the effect of steroids and continuous fluid infusions. They put me in a room, gave me some Ativan (the sleep stuff) and I took a nap for an hour or so. Meanwhile they disconnected all the tubing, flushed my lines and cleaned up the insertion site. After a while, we went home and Kathy and I both took a nap. I’m happy to tell you that there has been no more nausea, though the other end of my digestive tract has begun to act up, as I was warned it might. I’ve been hitting the Pepto and Imodium quite a bit.
And now it’s Wednesday. I’m extremely tired. And this is supposed to be a “good” day. I’m not supposed to get wiped out, according to my nurses, until the next day or two. Last night, though I wasn’t drinking anything during the night, I had to get up every couple of hours to pee, still getting rid of all the fluids I had accumulated during the previous couple of days. So this morning, I got up, ate breakfast, and went back to the couch to lay or lie down for the rest of the morning. (Our friend Kent, from Lubbock provided me with this rule about laying and lying: “For the record: I (do) lie down; I lay down; l have/had lain down. I (do) lay the frammis on the portico; I laid the frammis on the portico; I have/had laid the frammis on the portico. Your usage in your e-mail was correct. Thus spake Zarathustra, the arbiter of all English usage.” The “frammis” is an old, long running joke about an imaginary home-building part).
After the Cytoxan, a lot of things are going to happen to me, and I’m not likely to be a happy person for a while. When I had the Cytoxan in the past, many of you may remember me writing about having the “fuzzies,” times when I really couldn’t think well, read, type, etc. All I wanted to do, for days at a time, was lie around the house and sleep. Since I’m going to be getting a big walloping dose this time, it’s likely to be worse and last longer. Plus, I was lucky enough to escape nausea last time. I wasn’t so lucky this time. My doc said I may not even have any nausea, and then gave me enough nausea pills, at $10 each for three weeks! Now, what’s that telling you?
Then, the drugs are going to severely depress my white cell counts, hopefully taking all the “bad guys” with them. But, that’s going to make me very susceptible to infections, even from the germs within my body. I’ll have to be on antibiotics again for at least a couple of weeks or so. During that time, Kathy and I are going to “hibernate” within the house. I’ll not be going out where I might be exposed to anyone who might be sick, and Kathy, likewise, will be staying in so as not to bring any new germs into the house. Kathy stocked up the pantry just a few days ago so she wouldn’t have to go out much during that time.
And, as if that's not enough, I’ll have to start giving myself shots of a drug, the Neupogen some of you may remember, to stimulate the growth of my white cells again. I’ll have to do that everyday. I did that last year when we first tried to collect my stem cells, and the side effects weren’t too bad. I did have chest pain, in my sternum, and felt weakened, but not too extremely so. But, now that I presumably have some stem cells that can replicate, I will likely get the side effects, which can be bone pain, flu-like feelings, low grade fever, etc.
So, I’m likely to simultaneously have nausea, bone pain, weakness, “the fuzzies,” loss of appetite, and a significantly depressed immune system which will be susceptible to lots of other infections for a week or so. Does that sound like a good time? Of course, it’s not supposed to be a good time, and lots of you out there, and millions of other folks in the world have gone through much worse times, for longer periods of times, too.
I’ve decided that after we’ve finished the stem cell collection and it’s safe for me to get out, and I get some strength back, I’m going to take Kathy to a B&B for some R&R for a few days. We could rest in the house, to be sure, but that wouldn’t be a rest for Kathy, who would still be waiting on me and taking care of all the chores. She never lets me do much of anything while I’m recovering from chemotherapy. She spoils me! If I’m strong enough to travel, we’re planning to go back to the wonderful Alaska Wolfhouse B&B in Juneau for a few days, the place where we stayed last summer, with Phil and Clovis Dennis (who write that they have had their own interesting experiences with leaking water heaters). They are wonderful and hospitable folks and we had hoped to be able to visit with them again in the future, but they’re retiring from the business next summer. So, we need to go sooner rather than later. And this will provide a perfect reason, presuming I’m strong enough and my white cells are adequate for me to travel. Phil is a retired psychologist and is a lot of fun to talk to. He says a lot of folks tell him that a stay in the Wolfhouse provides Bed, Breakfast and Counseling! Another sub-text to this trip is that I want to see the Northern Lights at some time in my life. I wasn’t able to see any Southern Lights during our recent sojourn into the Antarctic, but March is supposed to be a good time in the northern hemisphere. Maybe we’ll be able to see some interesting things in the sky.
That's more than enough for now. I’ll close this edition, but let you know that something special is coming next time, whenever that is (depends on my mental state!).
Until then,
Dave
Chapter 2, Verse 7
March 3, 2004
Cytoxan, ... finally.
March 1st came around, and we went back to the clinic. My chest was feeling fine. It was the day I’d been anxiously awaiting and at the same time, in some ways, dreading. I needed to get past this date to get anything done, but I expected some bad days after they give me the Cytoxan. Remember what that is? Cytoxan = “Cyto”= cell and “toxin”= poison. They’re going to give me cell killer! As our daughter asked, “Why are you so anxious to get that stuff that’s going to make you feel like crap?”
Kathy I went in, early, of course, and checked in. At least we didn’t beat the staff in this time. Our nurse was Poppy, a real nice gal in her early thirties who exuded the air of someone who knew exactly what she was doing. I appreciated that. She didn’t even wait for the doc to come around and check me out, so well was I doing as compared to the previous Friday when we had met and I was still coughing and wheezing. She told me what we were going to do, gave me a list of Cytoxan side effects to look over (sinus congestion, nausea and vomiting, delayed nausea and vomiting, esophagitis, diarrhea, alopecia [baldness], pancytopenia [loss of adequate blood cells off all types, needing transfusions, etc.], hemorrhagic cystitis [bloody urine], cardiotoxicity which may decrease the heart's ability to pump blood, reproductive dysfunction [no longer a worry around these parts], and pulmonary fibrosis, which is a disease which has killed two of my cousins on my Mom's side. Yee Hah! Let the good times roll!) and started.
Let me spend a moment telling you about how much Cytoxan they’re giving me this time. Long time readers of this series may remember that I have had this drug before, when I was getting my first rounds of chemotherapy from July to October 2002, and that I was wiped out for days with “the fuzzies,” etc., when I couldn‘t think, do much, and just lay (or lie?) around the house for days. Well, back then, they were giving me 750mg (3/4 of a gram) a day, for three days in a row, with a couple of other meds too. Now they're giving me almost 6 grams of the stuff all at once, about eight times as much as I have ever gotten in a day, and about three times as much as I’ve ever gotten in any one week before. Man, they’re really going to pound away at my marrow this time!
But before they started it, they gave me another drug that I hadn’t had before. They infused some Mesna, a “cytoprotective” drug. I don’t know how it works, but it’s supposed to protect my vital organs from the Cytoxan somehow. That could be a good thing, protecting my vital organs before we loose the Cytological Grim Reaper, swinging a very large scythe, cutting down the good and bad guys all at once.
Then it started. It’s looks so benign. Many of the poisons we give to people have nasty, ominous colors. Yellows, reds, off-colors. Cytoxan, just like the Rituxan, the saline, the steroids and the Anzemet, were all just clear fluids. You couldn’t tell one from the other in the various tubes which were draining into my chest. The infusion took two hours. I was feeling bad before it was over...”woozy,” I told Kathy. I was unsteady when I got up to go to the bathroom and I couldn’t focus well. But, I didn’t feel at all nauseated. I was happy about that because I HATE to throw up! I was getting a headache, though, supposedly from the Anzemet (the antinausea medication). After the infusion came two more hours of hydration to help keep my kidneys flushed and minimize damage to them.
Now, initially, I was told I would be admitted to the hospital overnight to continue the hydration for 24 hours. Then, that was changed to having a home health nurse come out to manage IV’s for me at home. Then, that was changed to me going home with what is actually a backpack with a pump, batteries, and bags of fluids to use at home. Hey, don’t you love HMOs? However, I have to admit that I liked the backpack idea better than going to the hospital or having a nurse come to the house. The latter would have required a major house cleaning!
So they hooked me up to this backpack, which also has a handle so you can carry it like a briefcase if you want to, which I did, and put in the biggest bag of IV fluids I think I’ve ever seen, 2 1/2 liters. It looked more like an enema bag or something. And that was just the first of two IV bags we took home with us. The pump inside pumped the fluids out of the bag and into the tubing and then up under my shirt into my chest. A bit awkward, but manageable. The backpack also had another little pump, a little round spring loaded pump about the size of a Big Mac which contained more Mesna, to keep an infusion of it going during the night too. I liked that too, but wondered, “What if the spring breaks, or gets jammed, or something?”
We got home okay, and I headed straight for the couch. Kathy fixed a small meal, but I couldn’t each much, not from nausea but just from fatigue. I finally went upstairs to try to get some sleep at about nine. I wasn’t being much fun anyway!
Sleeping presented a problem. I was attached to a backpack by about five feet of tubing which was attached to the right side of my chest. We decided my best bet was to try to sleep in the recliner for the night. That would also put me much closer to the bathroom if I were to have problems during the night. So I did. But soon, the pump started beeping at me. Some kind of code I didn’t understand. “Beep, Beep Beep.” Then, “Beep Beep, Beep.” Then, “Beep Beep Beep, Beep.” I dragged myself into the bathroom, turned on the light, opened the backpack and looked for error messages or something. I couldn’t find a problem, so I put the damned thing back together (really an awkward thing to do when you're tired and inexperienced with the mechanism). I crawled back in the recliner and tried to get my headache to go away. I didn't know what medications I could safely take with the Cytoxan on board so I was being more cautious with meds than I usually am.
Things really broke loose at about midnight! The pump began making alarming beeps continuously. I again got up, went into the bathroom and turned on the light. I sat on the floor and disassembled the backpack to get at the pump. This time it said the battery was low. Well, they had provided about a half dozen more batteries with the pack, so I proceeded to replace the bad one, not too much of a problem. But when I got it replaced, the pump then said my fluids were low. Sure enough, the huge 2 1/2 liter bag was down to about 50cc. Problem! The replacement bag was downstairs and I had the backpack and tubing all in pieces. I called to Kathy, several times, actually, as she was sound asleep. But when she woke, she saw me in the bathroom with pump and bag parts scattered all round me and thought disaster had struck and she came running. I told her nothing serious was happening, but I needed the second bag brought up. We were then sitting on the floor, trying to figure out how to get the second bag threaded through the pump when the next problem hit.
I had to throw up. Suddenly, without warning, in less time than it has taken you to read this, I had to throw up. But, I had the replacement bag of fluids in my hand, the bag was opened with the pump on the floor, still attached to my chest by my tubing, and the backpack was in front of me, all of it interconnected. And all this stuff was between me and the toilet! I madly clambered over all the bags, tubing and equipment, towards the toilet, dragging all the stuff by my chest tubing. Ouch! I almost made it. Actually I made it for most of the event, but I couldn’t crawl fast enough to reach the toilet for the first “burst,” if you will. And, there, I vomited from my toes. And this kept on, until there was nothing left. (I’ll spare you any more vomit details)
When it was over, Kathy helped me clean up, both myself and the floor, but we still hadn’t replaced the bag of fluids. With a little effort, through chemo impaired and sleep deprived minds, we finally got it figured out and got me back into the recliner. The rest of the night was, thankfully, uneventful. Not restful, but uneventful, as Kathy and I both kept listening for the quiet “grunch-grunch” sound of the pump every couple of seconds, to make sure it was working, and to make sure we didn’t sleep through any frantic beeping!
We had to be back at the clinic the next morning by nine, so we got up, very slowly, at seven. On the way back downtown the battery needed to be replaced again; no problem this time. When I got there, Poppy looked at me and said, “Bad night, huh?” She could tell. I was weighed, and had gained nine pounds overnight; the effect of steroids and continuous fluid infusions. They put me in a room, gave me some Ativan (the sleep stuff) and I took a nap for an hour or so. Meanwhile they disconnected all the tubing, flushed my lines and cleaned up the insertion site. After a while, we went home and Kathy and I both took a nap. I’m happy to tell you that there has been no more nausea, though the other end of my digestive tract has begun to act up, as I was warned it might. I’ve been hitting the Pepto and Imodium quite a bit.
And now it’s Wednesday. I’m extremely tired. And this is supposed to be a “good” day. I’m not supposed to get wiped out, according to my nurses, until the next day or two. Last night, though I wasn’t drinking anything during the night, I had to get up every couple of hours to pee, still getting rid of all the fluids I had accumulated during the previous couple of days. So this morning, I got up, ate breakfast, and went back to the couch to lay or lie down for the rest of the morning. (Our friend Kent, from Lubbock provided me with this rule about laying and lying: “For the record: I (do) lie down; I lay down; l have/had lain down. I (do) lay the frammis on the portico; I laid the frammis on the portico; I have/had laid the frammis on the portico. Your usage in your e-mail was correct. Thus spake Zarathustra, the arbiter of all English usage.” The “frammis” is an old, long running joke about an imaginary home-building part).
After the Cytoxan, a lot of things are going to happen to me, and I’m not likely to be a happy person for a while. When I had the Cytoxan in the past, many of you may remember me writing about having the “fuzzies,” times when I really couldn’t think well, read, type, etc. All I wanted to do, for days at a time, was lie around the house and sleep. Since I’m going to be getting a big walloping dose this time, it’s likely to be worse and last longer. Plus, I was lucky enough to escape nausea last time. I wasn’t so lucky this time. My doc said I may not even have any nausea, and then gave me enough nausea pills, at $10 each for three weeks! Now, what’s that telling you?
Then, the drugs are going to severely depress my white cell counts, hopefully taking all the “bad guys” with them. But, that’s going to make me very susceptible to infections, even from the germs within my body. I’ll have to be on antibiotics again for at least a couple of weeks or so. During that time, Kathy and I are going to “hibernate” within the house. I’ll not be going out where I might be exposed to anyone who might be sick, and Kathy, likewise, will be staying in so as not to bring any new germs into the house. Kathy stocked up the pantry just a few days ago so she wouldn’t have to go out much during that time.
And, as if that's not enough, I’ll have to start giving myself shots of a drug, the Neupogen some of you may remember, to stimulate the growth of my white cells again. I’ll have to do that everyday. I did that last year when we first tried to collect my stem cells, and the side effects weren’t too bad. I did have chest pain, in my sternum, and felt weakened, but not too extremely so. But, now that I presumably have some stem cells that can replicate, I will likely get the side effects, which can be bone pain, flu-like feelings, low grade fever, etc.
So, I’m likely to simultaneously have nausea, bone pain, weakness, “the fuzzies,” loss of appetite, and a significantly depressed immune system which will be susceptible to lots of other infections for a week or so. Does that sound like a good time? Of course, it’s not supposed to be a good time, and lots of you out there, and millions of other folks in the world have gone through much worse times, for longer periods of times, too.
I’ve decided that after we’ve finished the stem cell collection and it’s safe for me to get out, and I get some strength back, I’m going to take Kathy to a B&B for some R&R for a few days. We could rest in the house, to be sure, but that wouldn’t be a rest for Kathy, who would still be waiting on me and taking care of all the chores. She never lets me do much of anything while I’m recovering from chemotherapy. She spoils me! If I’m strong enough to travel, we’re planning to go back to the wonderful Alaska Wolfhouse B&B in Juneau for a few days, the place where we stayed last summer, with Phil and Clovis Dennis (who write that they have had their own interesting experiences with leaking water heaters). They are wonderful and hospitable folks and we had hoped to be able to visit with them again in the future, but they’re retiring from the business next summer. So, we need to go sooner rather than later. And this will provide a perfect reason, presuming I’m strong enough and my white cells are adequate for me to travel. Phil is a retired psychologist and is a lot of fun to talk to. He says a lot of folks tell him that a stay in the Wolfhouse provides Bed, Breakfast and Counseling! Another sub-text to this trip is that I want to see the Northern Lights at some time in my life. I wasn’t able to see any Southern Lights during our recent sojourn into the Antarctic, but March is supposed to be a good time in the northern hemisphere. Maybe we’ll be able to see some interesting things in the sky.
That's more than enough for now. I’ll close this edition, but let you know that something special is coming next time, whenever that is (depends on my mental state!).
Until then,
Dave
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