Dave’s Great Adventure, Book 2
Postscript 5
October 7, 2004
Around every curve….
Well, we made it to Germany and back. And we did well, never got sick, and though we, and especially I, were/was tired a lot, we had, as expected, a wonderful time. It had been almost three years since our last trip to Germany. I had almost forgotten how much I love that country. In some ways, it is, to me, like a huge theme park, like being in a mega-Disney World. I love just about everything about it. I love the little towns, I love the food, I love the sounds of tires and wheels on cobblestones, I love the old half-timbered (commonly called Tudor style in America) buildings which date back many hundreds of years, I love the smells of the little towns in the mornings, where one can smell hardwood burning in the cook stoves, I love the little non-chain stores, I love the language, I love the roads….
I really love the roads, but I’ll bet you already have the wrong idea. Truly, I love the autobahns, as you’re probably thinking. They are incredibly well engineered, are wide, and are multi-laned, and there are long stretches which have no speed limits whatever. I drove fast on occasions during this trip, but I probably did no more than 110mph (about 180kph). Some of you who haven’t been to Germany may think that is fast, but when I lived in Germany and drove Porsches and BMWs, I routinely drove 125-140mph on a daily basis. Hey, roads are made to get you places quickly. Cars are designed to do the same.
But I like all the roads. The autobahns are the “A” roads, but they have great “B” roads, which are the federal roads, like Highway 66, and they have “C” roads, which are the state roads. At this level, the roads are getting narrower and more curving and twisty. But then there’s the local county roads. I’ve come to love them almost as much, or maybe a little more than the autobahns. I have been known to go out of my way to take an indirect route from one town to the next, just to be able to drive these little county roads.
The roads I’m talking about are but one broad lane wide, with absolutely no shoulders, and not even a center line. They are never straight. The edges of the road are carefully painted with white stripes to let you know, with certainty, where the edge is. When you meet oncoming traffic, you’d best be on the white line or your mirrors may kiss each other. Trucks don’t drive these roads, so narrow are they. These roads are routinely very winding and follow the topography, not cutting straight through hills and slopes as more modern roads do. They follow paths laid out centuries ago by animals, knights and stage coaches. They tend to be lined by heavy growth of bushes and trees, and the trees frequently meet overhead so that you have the impression of driving through a brushy green tunnel. There are leaves on the road that fly up behind you. On the uphill sides of these meandering roads the bank of the hills are usually reinforced with old red sandstone blocks, which are green with the moss that grows down their sides. The foliage opens up as you approach each ancient village, as the towns on these roads tend to be old indeed. And as you leave one town, you can usually see the red tiled roofs of the next village just a few kilometers further down the road. Entering again the green tunnel, you never can see too far ahead. The twists of the road are such that as you round one curve in the road, you are approaching another curve with more surprises in store. Wonderful.
So we got to Germany safely, but very tired. That was to be expected, even flying in those wonderful business class seats. Everyone suffers from jet lag when you fly to Europe. We checked into a 500 year-old hotel in Miltenberg, a place we’ve stayed many times, and spent a few days there to rest up and get used to the time change. I’ll probably describe the trip itself in some sort of DGA Travelogue for anyone interested, so I’ll not go into too much detail here.
On the third day of our trip we checked out and headed to Heidelberg. It also is a favorite town, and is a place I lived with my family in the 1950s when I was a naughty little boy. But now, our friends the Bakers live there. We’ve known each other for a couple of decades, since our days in El Paso in the ‘80s. Brian is a doc at the American hospital there, and our plan was for him to order a blood test for me, to make sure that my white count wasn’t falling any further. I had promised my doc here in town that I would do that before he let me go on the trip. (What we would have done if I was actually getting critically ill during the trip is a matter of conjecture)
But, we were able to get me entered into the local computer system which enabled Brian to order the complete blood count. It was still “critically low” but no worse that when we left Denver. Since I was still feeling well, we continued the trip and I didn’t feel the need to bother my doc back here in Denver with the news.
Staying with the Bakers is always a wonderful experience that I wish all of you could experience. Hey, maybe I could invite ALL of you over to their house for dinner some night! They are wonderful hosts and feed you very, very well. I’ll tell you more about that in the travelogue to follow sometime soon. We were able to catch up on current events and spend a little time in downtown Heidelberg doing some Christmas shopping.
Our next stop was Dettenheim, where the granddaughter of the poor woman who had to take care of me when I was the previously mentioned naughty little boy in the 1950s, now lives. Marta Galla was my nanny. She was a jewel of a person and just a lot of fun to be around. Her daughters also helped care for my siblings and me. Marta unfortunately died of a sarcoma a few years ago, but we have been able to keep in touch with her family. Her granddaughter, Claudia (who had a baby just about eleven months ago) arranged to have the whole Galla clan over for dinner so we could see everyone again. She and husband Michael are very nice folks, and have seen more of America’s national parks than we have. Her family brought along a couple of wonderful homemade German pastries, just like Marta always had for me when I visited her; a cheesecake and a plum kuchen, with every slice of plum laid out perfectly on the pastry base.
It was just wonderful to see everyone again, but I was somewhat embarrassed at how much German I had forgotten. I haven’t spoken much German in years, and no longer can think in German. Therefore, my German was halting at best. But, they spoke some English, and we got along well.
We continued on from Dettenheim to visit an aircraft museum, a medieval copper mine, a Celtic ring fort, the oldest town in Germany, Trier, which was founded by the Romans, and then we continued up the Moselle Valley. The trip was wonderful every day, and despite the many years we lived in Germany, and despite the many times we have been back to visit, we always find new things to see and enjoy.
We got back to town on a Monday afternoon, September 27th. Our plane was diverted around some nasty looking thunderstorms that we could see off to the west as we were coming back into Denver. But we landed safely and retrieved our luggage. As we approached Highlands Ranch it started to rain. Then, when we got into Highlands Ranch, I said to Kathy, “Hey, look at the snow on the ground!” There was white stuff all over the grass and the roads as we drove closer and closer to home. But she replied, “That can’t be snow, it’s 52 degrees (about 12C).” And indeed, the car thermometer said it was too warm to be snow. Only then did we notice that the trees were shredded and there were leaves all over the streets. HAIL!! We had just missed a big hail storm. Home was just a few blocks away. There were literally drifts of hail around the house and lots of pieces of broken shingles. Great! But the house was otherwise intact with no broken windows.
We couldn’t sleep much that night since now we were jet lagging again But we had to get some sleep, because the next morning I had another blood test and bone marrow biopsy scheduled. I also had an echocardiogram set up as a follow-up to the workup my internist was doing to look for a cause for my unrelenting fatigue. Getting up for the tests wasn’t a problem, because when you’ve just returned from Europe, your body not too gently awakens you at about 2AM. And you cannot will yourself back to sleep.
We got up in plenty of time and got through the tests without incident. The bone marrow biopsy hurt again, as usual, but they really aren’t intolerable. I don’t fear them anymore. Kathy and I even had Mexican food at El Tejado between the two tests. I was anxious to see what my blood tests and biopsy results showed so the next day I went to work and got into the computer to see what I could find out. The only result that was back was my blood test, which was completely normal. My white count, which had been “critically low” for weeks, was now completely normal!
“Now ain’t that the sh*ts!” as my step-dad might say. With this result, we didn’t even need to have done the bone marrow biopsy at all! After having been “critically low for weeks, suddenly my white cell count was back to normal. Who can explain these things?
A couple of days later I checked the computer again to see if the biopsy was back. It was, and it too, was completely normal. I’m back to where I was in December 2002 with normal bone marrow that has no detectable traces of leukemia, even with very sensitive tests! I’m not as ecstatic about these results as I was last time, however. Then I thought it was some kind of miracle, that maybe I had been, against all odds, cured. Now I know better, and I know that it is likely to come back again, but we just don’t know when. I have to be very grateful, however, that the treatments work so well, and that my particular strain of the disease seems to be very sensitive to the drugs we’re using. The fact that so many of my friends are praying for me has to be having a great effect on all this as well.
But just like those wonderful German county roads, around every curve is another curve and more unexpected surprises. After looking at the bone marrow results, I looked to see if my echocardiogram had been read. It had. The results said, in brief: “…moderate to severe mitral regurgitation with an atrial septal aneurysm with a patent foramen ovale or atrial septal defect, and mild tricuspid regurgitation…needs further evaluation depending upon whether or not he’s a surgical candidate.” And there was more, about mild myxomatous degeneration, leaky aortic valve, and stuff like that. For you non-medical types who might be reading this, it says my heart valves are leaking badly and I might need heart surgery.
Man, I didn’t see that coming. I’ve been feeling tired for months now, but blamed it on the leukemia, the chemotherapy, the depression, or a combination of these things. I’ve had a little mitral valve prolapse (the strongest of the heart valves, on the left side of then heart where the pumping of blood to the body takes place) for years, even with a little regurgitation (blood leaking past the valve when the heart pumps) for a while, but it never has been a problem. But I guess I should have expected it. My mom had the same problem and ended up having her valve replaced when she was about 77 years old. Unfortunately, they waited until she was in heart failure before they did the surgery and she had a very difficult time; she almost didn’t survive the surgery. If I need to have the surgery, I suppose I’d rather get it done sooner rather than later. I need to plan any surgery, and recovery too, around my other main attraction, the leukemia, as I have to be in a prolonged remission to be able to have the surgery. Also, if I’m going to retire in the next year or so, I’d like to get the surgery done before I leave this place rather than going someplace new and looking for a doc to open my heart!
This is ironic. My dad had multiple diseases; diabetes, gout, hypertension and leukemia. I got his leukemia. My mom has always been pretty healthy other than needing her mitral valve replaced a few years ago. And she gave me her bad mitral valve. Actually, when I was talking to her about this she said she didn’t give me the bad mitral valve, rather I “took it.”
Last month I celebrated my birthday, while we were in the Moselle Valley, near Cochem. Kathy gave me some great cards and our German friends in Dettenheim had given me several gifts as well (it’s an interesting and curious thing to note that the word “gift” in German means “poison”). We stopped at a small shop and had tasty kuchen for a midafternoon snack and wished me a happy birthday as we finished touring a local museum. This was my third birthday to celebrate after having gotten my diagnosis of leukemia, and I’m currently doing well (if one doesn’t consider the need for heart surgery). I have to think that I might exceed that “six year average longevity” that I was quoted three years ago, three long years that seems decades ago now. My bone marrow is currently completely normal, so I’m back to square one, as it were.
So that’s all our news. I’ve written plenty for this edition. I’ll write again, perhaps in the format of the previously mentioned travelogue for those of you who might be interested. I’ll also go over some of the many comments I received about my “poodle cut” hair and reactions to my visit with the massage therapist!
Until then,
Dave
“Those who pray for an uneventful journey have missed the purpose of the trip.” --Unknown
"Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well - preserved body, but rather to skid in sideways, champagne in one hand - strawberries in the other, body thoroughly used up, totally worn out and screaming, "WOO HOO - What a Ride!" --Unknown
Thursday, October 7, 2004
Sunday, September 12, 2004
Off to Germany--A Very Brief Update
Dave's Great Adventure, Book 2
Postscript 4
September 12, 2004
We're off!
I wanted to send out a brief message to all my friends to let all you know that we're going to be able to go to Germany despite my white counts being low. I was afraid we would have to cancel all our reservations.
I repeated my blood counts again after my last message and found that my white cell count, and especially the neutrophil counts, had dropped yet again. I discussed this with my doc, and he said we could go on the trip, but that he wants to do another bone marrow biopsy was soon as I get back. And, he gave me a bottle of new and improved antibiotics, a kind I'd not heard of, just in case I were to get ill during the trip.Has anyone out there heard of moxifloxacin? I guess they're pretty powerful.
On this trip Kathy will be keeping me as far as possible from crowds, sick folks, door knobs and coins. She's just great at protecting me from the bad things out there. Being on an airplane is a worry, of course, but we won't be back in steerage. Since we'll be in business class, there will be a lot of room between us and the people around us.And, I have a whole pack of masks I can put on if we detect any danger nearby. Wish us luck!
And, I'm to get another blood count during our trip. One of the first places we'll be going is not too far from Heidelberg and I'm going to stop in at the American military hospital there to get a count done.One of our friends, Dr. Brian Baker, works there part time and is going to help arrange this before we go on to their home. I delivered Brian and his wife Marcia's first child a long time ago. And, do you know that to this day they blame ME for all their child's problems, since I was the first person to lay hands on him. Now is that fair? It's been a couple of decades, after all!
It's a little worrisome being so far from home with a low white cell count and therefore a compromised immune system, but if we have any problems, I can go to the military hospitals in either Heidelberg or Landstuhl, both of which my father worked in years ago when he was in the Army. It's nice to have that care available while we're so far from home.
And so, off we go. We'll be in touch when we get back, probably after we get the bone marrow results back.
Until then,
Dave
Postscript 4
September 12, 2004
We're off!
I wanted to send out a brief message to all my friends to let all you know that we're going to be able to go to Germany despite my white counts being low. I was afraid we would have to cancel all our reservations.
I repeated my blood counts again after my last message and found that my white cell count, and especially the neutrophil counts, had dropped yet again. I discussed this with my doc, and he said we could go on the trip, but that he wants to do another bone marrow biopsy was soon as I get back. And, he gave me a bottle of new and improved antibiotics, a kind I'd not heard of, just in case I were to get ill during the trip.Has anyone out there heard of moxifloxacin? I guess they're pretty powerful.
On this trip Kathy will be keeping me as far as possible from crowds, sick folks, door knobs and coins. She's just great at protecting me from the bad things out there. Being on an airplane is a worry, of course, but we won't be back in steerage. Since we'll be in business class, there will be a lot of room between us and the people around us.And, I have a whole pack of masks I can put on if we detect any danger nearby. Wish us luck!
And, I'm to get another blood count during our trip. One of the first places we'll be going is not too far from Heidelberg and I'm going to stop in at the American military hospital there to get a count done.One of our friends, Dr. Brian Baker, works there part time and is going to help arrange this before we go on to their home. I delivered Brian and his wife Marcia's first child a long time ago. And, do you know that to this day they blame ME for all their child's problems, since I was the first person to lay hands on him. Now is that fair? It's been a couple of decades, after all!
It's a little worrisome being so far from home with a low white cell count and therefore a compromised immune system, but if we have any problems, I can go to the military hospitals in either Heidelberg or Landstuhl, both of which my father worked in years ago when he was in the Army. It's nice to have that care available while we're so far from home.
And so, off we go. We'll be in touch when we get back, probably after we get the bone marrow results back.
Until then,
Dave
Wednesday, September 1, 2004
Depression,Curly Hair and the Massage Therapist!
Dave’s Great Adventure, Book Two
Postscript 3
September 1, 2004
No news is good news.
We’ve had a wonderfully mild spring, summer and early fall here in the Rocky Mountain west. It’s generally been cool (too cool sometimes, like when we were wearing sweatshirts in the house in July, because the heat had been turned off) and we’ve had more moisture than the last several years. The reservoirs are filling up a bit, the bureaucrats are dropping watering restrictions, and we’ve only had to use the sprinklers a few times the whole summer. And, even though it’s technically still summer, in the Rockies it is already early fall. We’re getting snow in the mountains, and it will be here soon. Our first September here it was 90 degrees one day and then we had ten inches of snow the next. Crazy!
I’ve been getting occasional inquiries about my health from friends and family, since it’s now been about five months since I distributed any of my stories. It is rather unlike me to be silent for so long. But there are two reasons for this extended period of silence.
First, there has been very little to report. I have been getting blood tests monthly, and they have been relatively normal, with no immediate evidence of return of the “bad guys.” In fact, if anything, my white count is unusually low, which worries me about the coming flu season. I wonder if it’ll be okay for me to be in a clinic where sick folks come to cough and throw up, when my white count, and therefore my immunity, may not be as good as they should be.
I’ve been doing well, overall. My hair has returned (more about that later) and I’m still working three to four days a week. But I continue to be tired most days, almost lethargic at times. I’m in the middle of a workup by my internist to see if anything else is going on. I’m going to do another cardiac stress test in a few weeks, and will have an echocardiogram of my heart as well.
The other, and probably the main reason I haven’t written sooner, is because of my medications. Now, I’ve been depressed to some extent ever since I found I had leukemia. I’ve had good days, and I’ve had some very bad days. But in general, I’ve been depressed. You kind folks know that; you’ve been exposed to my stories for a couple of years now and the depression is, at times, hard to miss. I’ve been encouraged by friends, family and colleagues to consider antidepressant medications for many months, but I resisted. I felt I should be able to battle through this with my own inner strengths.
Finally, last April, I think it was, I asked my internist if he’d give me some drugs, Prozac, in particular. I was feeling so slow, tired and sad, that I just wanted something to give me a bit of a lift. I figured Prozac might do it. So I started on it. And almost immediately, it seems, my desire to write went away. I was reminded of the story I told you about, probably last March, about the doctor who had hypergraphia, an overwhelming desire to write. She mentioned in her story that all the depressives in her support group were keeping journals. Well, it seems that I was too. Of course, you all are part of this journal. But as soon as I started the Prozac, I had no desire to write. I was thinking of things that I wanted to write down, and really have been thinking of getting out this update for months, but couldn’t find the energy or interest in sitting down at the keyboard to do it.
About six weeks ago, I decided that the medication really didn’t seem to be helping me with my energy levels or initiative. I just felt “flat” most of the time. So, I started weaning myself off the Prozac. Sure enough, my desire to write stuff down returned almost immediately, just in time for me to write some ill-advised political commentary to my family and some friends. Well, I went back on for a while, but am now weaning myself off again. We’ll see how I do.
Now, the last time I wrote to you kind folks it was in April, I believe, and I was completely bald. I even included pictures for those of you who can get them. If fact, there were three bald heads in the family, as our two sons also shaved their heads at the same time. Well, my hair has come in very thick in the last four months, and it is extremely curly. I’ve never had curly hair before, it always having been very fine and straight. But now I look like a poodle. I really can’t do anything with it. I wash it, try to comb it, but mostly I just dry it with a towel after my bath and it goes, “Sproing” and does whatever it wants to do. Kathy loves playing with my little curls! People tell me they’d pay a lot of money for curls like mine. I tell them that Kaiser paid $60,000 for those curls. They didn’t come cheap. Some folks say that my hair may straighten out to what it used to be like in a year or two, but whatever happens is okay. The hair is the least of my worries. I’ll try to remember to attach a picture when I send this out. I have a haircut scheduled for this weekend. I have no idea at all what to tell my barber about how I want my hair cut!
It’s now been two and a half years since I was diagnosed with leukemia, at which time my doc told me the average longevity was about six years from diagnosis. That, in theory anyway, would leave me with about three and half more years to go before the “terminal event.” But there’s cause for optimism. Folks with my disease have varying life spans, from a few months to a couple of decades or more. Those unfortunate folks who have very aggressive disease and die within a couple of years bring down the “average” life expectancy. So, having survived the first couple of years, relatively intact, I have to think that maybe I’m going to fall in the somewhat longer-lived group of patients. Of course, I don’t want to get too hopeful too soon, but, so far, so good.
Kathy and I have some great news to report to you. Three weeks ago we went to El Paso, Texas to attend the wedding of our son, Jon, to Natalie Campos, on August 7th. We had a wonderful time with them and many of our family members who were able to be there with us. It was great meeting Natalie’s family as well. They are just real nice folks. The nuptial couple celebrated their honeymoon in Paris and reportedly had a very interesting and culturally enlightening experience, when they weren’t succumbing to jet lag.
And just last week, Kathy and I celebrated our 35th wedding anniversary. Our kids treated us to a first class dinner at a local bistro. They even remembered to order us a vase of white daisies, like the ones in Kathy’s wedding bouquet so many years ago. I gave her a diamond pendant for having tolerated me for the last three and half decades. She gave me a cool high-power eyepiece for my telescope.
And while I’m mentioning such things, I should also mention that my step-dad, Lloyd Lee, celebrated his 90th birthday last June. We were able to go to Iowa to help mark the event which attracted over a hundred of his friends and relatives. Lloyd is still going strong and golfs most weeks during the summer.
I had a very interesting experience while we were in El Paso for the wedding! I had been having back spasms for a couple of weeks, that were waking me at night in pain. Nothing I could do in terms of stretching or exercising was making a difference in the way my back and upper neck felt. When we checked into the hotel in El Paso, Kathy noticed that they advertised the fact that they had a registered massage therapist “on site.” Kathy asked if I thought a massage would help. I was willing to try anything, so bothersome was the pain and interrupted sleep. So I made an appointment.
But then I began to get nervous. I’d never had a massage before. What was going to happen? Would the therapist be a guy or a gal, would I be embarrassed, would this be a legitimate massage or one of those kinds of things where they offer “special services.” “Would you go with me?” I asked Kathy. “Are you serious?” she answered, telling me how she felt about going along.
At 2:00, the phone rang. It was my therapist, waiting for me in the lobby. I went to meet her. She was Martina, a German lady about 35 years old, from Flensburg in northern Germany. “Good,” I thought, “I’ll have something to talk about.” She took me up to the massage room. I expected it to be rather clinical, with one of those massage chairs that I could sit in and bend over on, so she could work on my back. Wrong! It was about ten by eight feet, dark, with scented candles, Enya on the CD player, lacy curtains along the walls and a padded table in the middle of the room. Yikes!
Martina asked me what problems I was having and I told her that I was having the aforementioned back and neck pains. She actually took a short medical history and then asked me to get ready. I took off my shirt. I figured, she’s going to work on my back, right?
“Would you be uncomfortable taking all your clothes off,” she asked. “Uhh, yeah,” I answered. “Would you do it anyway,” she then asked, rather commandingly. “Uhh… okay,” I replied. She stepped out so I could undress and cover with a small towel. I took everything off except my underwear. I figured that, she’s going to work on my back. It should be okay to leave my underwear on, right? I covered my middle with the towel and lay down on my back, as she had told me.
Martina came back in and started to work. She started on my scalp, then went to my face, my chest, my upper arms. “When the heck is she going to get to my back,” I wondered. Then she went down to my feet, working up to my ankles, my calves and then my inner thighs, getting awfully close to Mr. Happy! Yikes again!!!
But then she asked me to roll over on my stomach. As I did, she saw that I had left my underwear on. “You naughty boy, you still have on your undies,” she said. “Uhh, yeah, uhh… I didn’t think you’d want me to take them off too, did you?” I pleaded. “Well, would you mind taking them off?” she again asked. She said she wouldn’t look.
I struggled to stay under the little white towel while trying to slip my underwear down. It was impossible to stay covered, but I managed to get them off.
(As an aside, while telling our daughter about this incident, she was beside herself with laughter about me, who sees naked women everyday in my work, being so shy about getting naked in front a woman.)
So, I got turned over and more or less covered again, and Martina went back to work. She started at my feet and worked up again, eventually (thank God!) getting to my back. I was glad she got away from my thighs. She worked me over, found all the sore spots, and stretched the sore area. She did a good job and eventually, it felt good, but unfortunately, it didn’t last. I was sore again by the next day.
Which brings me to the next part of the story. I was having so much pain, and was having tingling going down my left arm, so I decided to see a chiropractor. Now, even though I am an osteopath, and have training in manipulation (more commonly known as “bone cracking”) I have been leery of chiropractors because of things I hear from patients occasionally. Like getting “liver purges,” or high colonics, or multiple expensive x-rays, etc. But my health care organization, Kaiser Permanente, has a couple of chiropractors on staff. I figured they should be legitimate, so I gave them a try. And I have to say that I was very pleasantly surprised. After two treatments my problem was 95% gone. I guess I’ll be going back when I have these kinds of problems.
Kathy and I are in the very preliminary stages of planning a move to Texas, where all the kids live. We’re thinking we might move around the end of next year, but I’m trying to plan any move around my health, and would like to get through my next relapse and recovery before we move. Of course, when that might be is completely unpredictable, but will likely happen within the next year or so. So we’re starting to check out retirement communities and health care facilities in Texas, plus the health insurance coverage that we’ll have when we get there, trying to make sure it’ll be adequate.
Knowing that we’ll be leaving Colorado in the fairly near future, we’re also taking short trips around the state to many of the wonderful places we’ve been hearing about but haven’t been to see in person. Over the last couple of years I’ve taken Kathy to Antarctica, Alaska, Mexico and lots of other places, but we haven’t spent enough time closer to home. So we’ve been up to Steamboat Springs, down to Durango, into the Mesa Verde National Park to see the Indian ruins, into the ghost town of Gothic, to the rim of the Black Canyon of the Gunnison, and lots of other smaller out of the way places. This state really has a tremendous number of things to see. And we’re going to try to get to as many of them as we can in the time we have left here.
But of course, we’re not going to go just to places in Colorado. We haven’t visited our friends and relatives in Germany in quite a while now. We’ve been collecting frequent flyer miles for a couple of years, and decided to cash them in on a trip to Germany later this month, if my doc will let me go. We are supposed to leave on September 13th and will be there for a couple of weeks. We’re flying business class! Thanks to all those frequent flyer miles. I couldn’t afford to pay for business class for an overseas trip.
Speaking of my doc letting me go, while I’ve been putting this together over the last couple of days there’s been an interesting development in my condition. I had a blood count done last week, and it came back with a critically low white cell count, the lowest it’s been since I was actually undergoing chemotherapy. And I haven’t had any chemotherapy in about six months. A couple of years ago, my white count dropped to 1,000 with a neutrophil (remember the bacteria fighters?) of only 100 during my first round of drugs (normal is about 3,500 to about 10,000 or so). Well, at the moment, my white count is only 1,700 with 400 neutrophils. That’s very low indeed. I’m to repeat the count (for the third time in a week) and if it doesn’t go up significantly, my doc wants to “marrow” me, in other words, do another bone marrow biopsy. Oh boy!
So, it’s a good news/bad news story…. The good news is that at least my white count isn’t going too fast. But the bad news is, my white count isn’t going up too fast!
So, just in time for this issue of the never-ending DGA, there is, in fact, some news. I’ll keep you updated, of course.
That’s all the news that’s fit to print, at least for now. Until later….
Dave
“Life is like wrestling a gorilla; you don’t stop when you get tired, you stop when the gorilla gets tired.” --from my brother-in-law and good buddy, Ray, up in Montana.
Postscript 3
September 1, 2004
No news is good news.
We’ve had a wonderfully mild spring, summer and early fall here in the Rocky Mountain west. It’s generally been cool (too cool sometimes, like when we were wearing sweatshirts in the house in July, because the heat had been turned off) and we’ve had more moisture than the last several years. The reservoirs are filling up a bit, the bureaucrats are dropping watering restrictions, and we’ve only had to use the sprinklers a few times the whole summer. And, even though it’s technically still summer, in the Rockies it is already early fall. We’re getting snow in the mountains, and it will be here soon. Our first September here it was 90 degrees one day and then we had ten inches of snow the next. Crazy!
I’ve been getting occasional inquiries about my health from friends and family, since it’s now been about five months since I distributed any of my stories. It is rather unlike me to be silent for so long. But there are two reasons for this extended period of silence.
First, there has been very little to report. I have been getting blood tests monthly, and they have been relatively normal, with no immediate evidence of return of the “bad guys.” In fact, if anything, my white count is unusually low, which worries me about the coming flu season. I wonder if it’ll be okay for me to be in a clinic where sick folks come to cough and throw up, when my white count, and therefore my immunity, may not be as good as they should be.
I’ve been doing well, overall. My hair has returned (more about that later) and I’m still working three to four days a week. But I continue to be tired most days, almost lethargic at times. I’m in the middle of a workup by my internist to see if anything else is going on. I’m going to do another cardiac stress test in a few weeks, and will have an echocardiogram of my heart as well.
The other, and probably the main reason I haven’t written sooner, is because of my medications. Now, I’ve been depressed to some extent ever since I found I had leukemia. I’ve had good days, and I’ve had some very bad days. But in general, I’ve been depressed. You kind folks know that; you’ve been exposed to my stories for a couple of years now and the depression is, at times, hard to miss. I’ve been encouraged by friends, family and colleagues to consider antidepressant medications for many months, but I resisted. I felt I should be able to battle through this with my own inner strengths.
Finally, last April, I think it was, I asked my internist if he’d give me some drugs, Prozac, in particular. I was feeling so slow, tired and sad, that I just wanted something to give me a bit of a lift. I figured Prozac might do it. So I started on it. And almost immediately, it seems, my desire to write went away. I was reminded of the story I told you about, probably last March, about the doctor who had hypergraphia, an overwhelming desire to write. She mentioned in her story that all the depressives in her support group were keeping journals. Well, it seems that I was too. Of course, you all are part of this journal. But as soon as I started the Prozac, I had no desire to write. I was thinking of things that I wanted to write down, and really have been thinking of getting out this update for months, but couldn’t find the energy or interest in sitting down at the keyboard to do it.
About six weeks ago, I decided that the medication really didn’t seem to be helping me with my energy levels or initiative. I just felt “flat” most of the time. So, I started weaning myself off the Prozac. Sure enough, my desire to write stuff down returned almost immediately, just in time for me to write some ill-advised political commentary to my family and some friends. Well, I went back on for a while, but am now weaning myself off again. We’ll see how I do.
Now, the last time I wrote to you kind folks it was in April, I believe, and I was completely bald. I even included pictures for those of you who can get them. If fact, there were three bald heads in the family, as our two sons also shaved their heads at the same time. Well, my hair has come in very thick in the last four months, and it is extremely curly. I’ve never had curly hair before, it always having been very fine and straight. But now I look like a poodle. I really can’t do anything with it. I wash it, try to comb it, but mostly I just dry it with a towel after my bath and it goes, “Sproing” and does whatever it wants to do. Kathy loves playing with my little curls! People tell me they’d pay a lot of money for curls like mine. I tell them that Kaiser paid $60,000 for those curls. They didn’t come cheap. Some folks say that my hair may straighten out to what it used to be like in a year or two, but whatever happens is okay. The hair is the least of my worries. I’ll try to remember to attach a picture when I send this out. I have a haircut scheduled for this weekend. I have no idea at all what to tell my barber about how I want my hair cut!
It’s now been two and a half years since I was diagnosed with leukemia, at which time my doc told me the average longevity was about six years from diagnosis. That, in theory anyway, would leave me with about three and half more years to go before the “terminal event.” But there’s cause for optimism. Folks with my disease have varying life spans, from a few months to a couple of decades or more. Those unfortunate folks who have very aggressive disease and die within a couple of years bring down the “average” life expectancy. So, having survived the first couple of years, relatively intact, I have to think that maybe I’m going to fall in the somewhat longer-lived group of patients. Of course, I don’t want to get too hopeful too soon, but, so far, so good.
Kathy and I have some great news to report to you. Three weeks ago we went to El Paso, Texas to attend the wedding of our son, Jon, to Natalie Campos, on August 7th. We had a wonderful time with them and many of our family members who were able to be there with us. It was great meeting Natalie’s family as well. They are just real nice folks. The nuptial couple celebrated their honeymoon in Paris and reportedly had a very interesting and culturally enlightening experience, when they weren’t succumbing to jet lag.
And just last week, Kathy and I celebrated our 35th wedding anniversary. Our kids treated us to a first class dinner at a local bistro. They even remembered to order us a vase of white daisies, like the ones in Kathy’s wedding bouquet so many years ago. I gave her a diamond pendant for having tolerated me for the last three and half decades. She gave me a cool high-power eyepiece for my telescope.
And while I’m mentioning such things, I should also mention that my step-dad, Lloyd Lee, celebrated his 90th birthday last June. We were able to go to Iowa to help mark the event which attracted over a hundred of his friends and relatives. Lloyd is still going strong and golfs most weeks during the summer.
I had a very interesting experience while we were in El Paso for the wedding! I had been having back spasms for a couple of weeks, that were waking me at night in pain. Nothing I could do in terms of stretching or exercising was making a difference in the way my back and upper neck felt. When we checked into the hotel in El Paso, Kathy noticed that they advertised the fact that they had a registered massage therapist “on site.” Kathy asked if I thought a massage would help. I was willing to try anything, so bothersome was the pain and interrupted sleep. So I made an appointment.
But then I began to get nervous. I’d never had a massage before. What was going to happen? Would the therapist be a guy or a gal, would I be embarrassed, would this be a legitimate massage or one of those kinds of things where they offer “special services.” “Would you go with me?” I asked Kathy. “Are you serious?” she answered, telling me how she felt about going along.
At 2:00, the phone rang. It was my therapist, waiting for me in the lobby. I went to meet her. She was Martina, a German lady about 35 years old, from Flensburg in northern Germany. “Good,” I thought, “I’ll have something to talk about.” She took me up to the massage room. I expected it to be rather clinical, with one of those massage chairs that I could sit in and bend over on, so she could work on my back. Wrong! It was about ten by eight feet, dark, with scented candles, Enya on the CD player, lacy curtains along the walls and a padded table in the middle of the room. Yikes!
Martina asked me what problems I was having and I told her that I was having the aforementioned back and neck pains. She actually took a short medical history and then asked me to get ready. I took off my shirt. I figured, she’s going to work on my back, right?
“Would you be uncomfortable taking all your clothes off,” she asked. “Uhh, yeah,” I answered. “Would you do it anyway,” she then asked, rather commandingly. “Uhh… okay,” I replied. She stepped out so I could undress and cover with a small towel. I took everything off except my underwear. I figured that, she’s going to work on my back. It should be okay to leave my underwear on, right? I covered my middle with the towel and lay down on my back, as she had told me.
Martina came back in and started to work. She started on my scalp, then went to my face, my chest, my upper arms. “When the heck is she going to get to my back,” I wondered. Then she went down to my feet, working up to my ankles, my calves and then my inner thighs, getting awfully close to Mr. Happy! Yikes again!!!
But then she asked me to roll over on my stomach. As I did, she saw that I had left my underwear on. “You naughty boy, you still have on your undies,” she said. “Uhh, yeah, uhh… I didn’t think you’d want me to take them off too, did you?” I pleaded. “Well, would you mind taking them off?” she again asked. She said she wouldn’t look.
I struggled to stay under the little white towel while trying to slip my underwear down. It was impossible to stay covered, but I managed to get them off.
(As an aside, while telling our daughter about this incident, she was beside herself with laughter about me, who sees naked women everyday in my work, being so shy about getting naked in front a woman.)
So, I got turned over and more or less covered again, and Martina went back to work. She started at my feet and worked up again, eventually (thank God!) getting to my back. I was glad she got away from my thighs. She worked me over, found all the sore spots, and stretched the sore area. She did a good job and eventually, it felt good, but unfortunately, it didn’t last. I was sore again by the next day.
Which brings me to the next part of the story. I was having so much pain, and was having tingling going down my left arm, so I decided to see a chiropractor. Now, even though I am an osteopath, and have training in manipulation (more commonly known as “bone cracking”) I have been leery of chiropractors because of things I hear from patients occasionally. Like getting “liver purges,” or high colonics, or multiple expensive x-rays, etc. But my health care organization, Kaiser Permanente, has a couple of chiropractors on staff. I figured they should be legitimate, so I gave them a try. And I have to say that I was very pleasantly surprised. After two treatments my problem was 95% gone. I guess I’ll be going back when I have these kinds of problems.
Kathy and I are in the very preliminary stages of planning a move to Texas, where all the kids live. We’re thinking we might move around the end of next year, but I’m trying to plan any move around my health, and would like to get through my next relapse and recovery before we move. Of course, when that might be is completely unpredictable, but will likely happen within the next year or so. So we’re starting to check out retirement communities and health care facilities in Texas, plus the health insurance coverage that we’ll have when we get there, trying to make sure it’ll be adequate.
Knowing that we’ll be leaving Colorado in the fairly near future, we’re also taking short trips around the state to many of the wonderful places we’ve been hearing about but haven’t been to see in person. Over the last couple of years I’ve taken Kathy to Antarctica, Alaska, Mexico and lots of other places, but we haven’t spent enough time closer to home. So we’ve been up to Steamboat Springs, down to Durango, into the Mesa Verde National Park to see the Indian ruins, into the ghost town of Gothic, to the rim of the Black Canyon of the Gunnison, and lots of other smaller out of the way places. This state really has a tremendous number of things to see. And we’re going to try to get to as many of them as we can in the time we have left here.
But of course, we’re not going to go just to places in Colorado. We haven’t visited our friends and relatives in Germany in quite a while now. We’ve been collecting frequent flyer miles for a couple of years, and decided to cash them in on a trip to Germany later this month, if my doc will let me go. We are supposed to leave on September 13th and will be there for a couple of weeks. We’re flying business class! Thanks to all those frequent flyer miles. I couldn’t afford to pay for business class for an overseas trip.
Speaking of my doc letting me go, while I’ve been putting this together over the last couple of days there’s been an interesting development in my condition. I had a blood count done last week, and it came back with a critically low white cell count, the lowest it’s been since I was actually undergoing chemotherapy. And I haven’t had any chemotherapy in about six months. A couple of years ago, my white count dropped to 1,000 with a neutrophil (remember the bacteria fighters?) of only 100 during my first round of drugs (normal is about 3,500 to about 10,000 or so). Well, at the moment, my white count is only 1,700 with 400 neutrophils. That’s very low indeed. I’m to repeat the count (for the third time in a week) and if it doesn’t go up significantly, my doc wants to “marrow” me, in other words, do another bone marrow biopsy. Oh boy!
So, it’s a good news/bad news story…. The good news is that at least my white count isn’t going too fast. But the bad news is, my white count isn’t going up too fast!
So, just in time for this issue of the never-ending DGA, there is, in fact, some news. I’ll keep you updated, of course.
That’s all the news that’s fit to print, at least for now. Until later….
Dave
“Life is like wrestling a gorilla; you don’t stop when you get tired, you stop when the gorilla gets tired.” --from my brother-in-law and good buddy, Ray, up in Montana.
Friday, April 2, 2004
Hair Loss, Alaska, Drugs and The Best Time To Die.
Dave’s Great Adventure, Book Two
Postscript 2
April 2, 2004
Just some follow-up
My last letter, my “postscript,” generated a number of queries about several things, things which I thought I’d address in a follow-up postscript, if you don’t mind. A lot of folks had questions or comments about similar things which I hadn’t mentioned. I really had intended to mention a few more things in that last letter, but I thought it was getting to be too long, so I didn’t. So, now you get more stuff, even though I don’t really have any new “stuff“ for you.
I had questions about my hair, or lack of it, the patterns of loss, and a couple of requests for pictures. I’ll attach a couple of pictures at the end of this letter. The hair loss started several weeks ago, as I’d previously mentioned. I got my head shaved about two and a half weeks ago, when hair began falling out by the “handsful” (spellchecker doesn’t like that word, but I’m SURE it’s right) and I began fearing I would soon look like I had mange or something. I then shaved my head with a razor, as the stubble kept falling out and going down my neck. That didn’t solve the problem, however. The stubs of the hair shafts still continued to fall out by the hundreds, mostly after the morning bath, for some reason. Every little hair shaft was complete with a tiny little bulbous end, the root which was coming out with the hair shaft.
Meanwhile, other body hair was falling out, but not nearly so dramatically. The faster the hair grows, the more it’s affected by chemotherapy. So, hair like my eyebrows and eyelashes weren’t affected much at all, since they are very slow growing, and so they still seem to be pretty much normal. The same can be said for the hair on my arms and legs. Now, the hair in my armpits and, uh, (ahem) lower areas has thinned quite a bit, but is not entirely absent. I think that if I’d had multiple doses of Cytoxan, as do many cancer patients, I would have eventually lost every bit of body hair.
One place that my hair seemingly hasn’t been affected at all is in my ears! The damned ear hair continues to grow merrily as the rest of my body sheds. Is God playing a joke on me?
It has now been exactly a month since I received the single dose of Cytoxan which was responsible for this hair loss phenomenon. My head has all but stopped shedding at this point and I am seeing the first little wisps of pale, downy, new hair growth. One has to look very closely, but it is there. Meanwhile, my beard is showing signs of renewed life. I have only been shaving every several days, but I do have a very fine stubble after that length of time. I have about one pale bristle for about every square half inch of my cheeks. My chin, for some reason, remains as soft as a baby’s butt.
For whatever reason, I really never got “the fuzzies” with this last treatment. I have to guess that was because I only got one, intense dose, and not several doses over several days, repeated every month. The only thing that I did that was weird after this last treatment happened the week after the Cytoxan. I was sitting at the dining room table. looking at old photos and labeling them. I was developing a headache and decided I needed to go upstairs to get some medication before it got too bad. So, I went upstairs, went to where the medicines are, but inexplicably picked up the watering can, mixed up some Miracle Grow in it, watered all the plants upstairs with the appropriate mixture, using several watering cans full of the mixture and then returned downstairs. When I sat down, I thought, “Man, I’ve got an awful headache.” Chemo brain!
I got a couple of messages from some friends and a cousin up in Iowa about my mention of giving my excess medications away, to be used for folks who couldn’t afford these same medications. In Iowa City, at the University hospital, a couple of nurses have been recently fired for using left-over medications that some patients didn't need, and providing them to patients who could not afford them, much like I did, apparently. There has been quite a row and lots of letters to the editor in the local papers over the firing of these nurses who were just trying to help poor people.
Now, in my last letter I did mention that I asked the Rocky Mountain Cancer Center if they could use the drugs, and if it was legal for them to take them. I’m honestly not sure that it was technically legal for them to take these meds, but I didn’t ask too many questions as I want them to get used. However, I’m not a pharmacist, and so I can’t legally dispense drugs. And the person I gave them to is not a doctor, and so can’t legally prescribe or dispense the drugs. And, the drugs have been out of a pharmacy, so if I had some evil intent, I could potentially have adulterated them and made them dangerous to others. There are lots of laws surrounding the handling of drugs, to make it difficult for people to illegally get drugs (as a doc, I can’t both prescribe and dispense drugs) or to steal or mishandle drugs. It’s just that all these laws, designed to keep your drugs safe, often get in the way of common sense when it comes to redistributing leftover drugs to others who might need them. I’m guessing that the nurses in Iowa City ran afoul of these laws, but were able to get away with it until someone, for some reason, blew the whistle on them. It’s too bad that there’s not a good, legal way to use these very expensive drugs when they're left over and not needed.
I received a number of very nice comments about my last letter, complimenting me on my descriptions of Alaska and some of the things we’d seen. My biggest fan, my Mom, wrote, “I enjoyed your letter about your trip to Alaska. It made me feel like I was there.” Sister-in-law Kristy said just about the same thing. Phil Dennis up in Juneau gave me high marks also. “Just finished reading one of your best pieces of writing. Your nature descriptions both scintillating and clean as a whistle.” His wife, Clovis suggested I start writing for the Juneau chamber of commerce. “I loved your latest piece of writing. Beautiful, just beautiful descriptions. Never seen it written better. You should be working for the Juneau Chamber of Commerce.” My friend Shara, down in Castle Rock wrote to say, “I love your vivid descriptions!” (Shara and her husband and I have known each other for years. She’s been a favorite patient, and we’ve been through a lot together; surgery, pregnancies, both good and bad, her MS and my leukemia. We know each other well. She recently wrote that we needed to get together for brunch or something, so we could spend some time talking. “The only times I ever get to see you, I’m naked!” she wrote. How many of you have THAT problem?)
Well, I really appreciate all the wonderful comments about my writing, and I have to tell you, I really enjoy doing the writing, but I suspect that for every person who thinks it’s great, there are probably three who roll their eyes when I launch into my best Bulwar-Lytton excess. But, it’s just that I think I see more detail in the things around me now, and want to record the things I see. I could have written so much more about that scene on the beach but I felt I’d probably gone on too long as it was. As I was standing on the boulders on the beach, I was noticing all the different strata in them, and all the different colors, shapes and structures of the rocks around me. And all the birds in the distance, and the island across the channel with waves crashing along its shore too. I just seem to sense more and feel more than I ever have before, probably because I now realize, only too well, that I no longer have an unlimited life span, as I once imagined I had.
I felt the same way every day at breakfast in the Wolfhouse. The breakfast area in that wonderful B&B is just about completely glassed in. You can look from your place at the table and see through the trees to the Gastineau Channel. The channel is always active with birds of many types, almost always including bald eagles, which not uncommonly fly directly over your head as you watch them. Whoever decided to glass in the room was a genius. But, beyond the Gastineau Channel is Douglas Island. I described its shore. But it has mountains, beautiful mountains. And when we were there, they were all snow capped, “the mounts vanilla atop black granite,” as Phil has described them. I’d look and look at them every day, though they were always the same. I took many, many pictures, but they just don’t capture the feeling of seeing the beauty so close. Alaska has so much natural beauty, that they don’t even name all the mountains, glaciers, sounds, etc. There are four lovely unnamed mountain peaks across the Gastineau Channel from the Wolfhouse. Since no one has taken the time to name them, Phil took it upon himself to name them Wolf, Bear, Eagle and Peregrine Peaks.
I want to tell you about something we saw on this trip to Alaska which I’ve never seen ever before, anywhere. Imagine you’ve planted some grass seed in the spring, watered the seeds, fertilized them, protected them. In a week or so, they sprout, so you have small clusters of green, thin blades of grass. Now, imagine that instead of blades of grass, you are seeing crystals of ice growing out of the ground. We saw that in multiple places along the trails on Douglas Island. The ground is beginning to thaw at this time of year, but the air temperature overnight and in protected, shady areas, is still below freezing. Small seeps of water, micro-springs if you will, rise to the surface but the water freezes on contact with the air, and the resulting crystal is pushed out by the force of the water below to grow longer and freeze more. I was amazed. I’ve never seen that in Germany or any other place we’ve lived. But the locals see it all the time and weren’t impressed.
Last weekend, Kathy and I took a very quick trip to Stillwater, Oklahoma to visit her dad. We hadn’t seen him since last summer, and wanted to see how he was doing. We had hoped to go earlier in the month, but the delays in my therapy pushed back all our plans. We actually weren't going to go at all, but United surprised us with a weekend special e-fare, so we decided to buy the tickets and then go, or cancel, depending on how I was feeling. I was feeling somewhat stronger by the time we were to go, so we went.
Kathy’s dad is 92 years old. He has always been a strong, independent man who took care of himself and the other members of his family when they needed help. He mowed his own lawn up until about two years ago. But time caught up with him and his wife of 62 years, so last year they moved into a very comfortable assisted living home. Then, his wife died suddenly of a stroke. I mentioned that event last year in these letters. It is remarkably sad how much Kathy’s dad has now declined since losing his wife eleven months ago. Functionally, physically and mentally, he is not the same person. He remembers his daughters, for the most part, but easily confuses the supporting cast, the grandchildren, sons-in-law, etc. He generally doesn’t know what time of day it is, what meal is coming up, etc. It is so sad. But, all too predictable. Statistically, I think most elderly surviving widowers die within one to two years of losing a long time spouse.
Which made me wonder, again, when is the “best” time to die? Is there a “best” time? For Kathy’s dad, it would have been when his wife died. He even said as much, that if he could have, he’d have gone with her. But we don’t generally get to make those decisions. Now, it would seem that life has no joy or meaning for him. Disabilities and infirmities will eventually affect us all. When should we go? What’s the best time?
When we left Stillwater to go back to Oklahoma City, to catch our return flight, we arrived at the airport and checked in a record three hours and twenty minutes early! As I’ve often mentioned, my wife wants to make sure we never get anywhere late. Our children would be proud.
One last thing: over the many months I’ve been writing these letters I’ve often mentioned our friend Jane who lives in Iowa most of the year, and in Florida in the winters. Jane’s son Randy turned fifty a few months ago. He promised himself that when he turned fifty he’d get a prostate check and a full exam. His prostate test, the PSA (prostate specific antigen) was abnormal. He underwent a full workup and eventually had surgery not too long ago for prostate cancer. Now he’s been found to have metastasis to a rib, which has been removed, and now he’s getting hormonal treatments. If you’re the praying kind, please remember Randy tonight. He, his wife and parents have had a rough time lately. Thanks.
And, I went to work today. I had a fairly light day, but now I am very tired. Tomorrow will be a very busy day, so I’m going to try to get to bed early tonight. So, I’ll close and I hope to remember to scan and attach a couple of “bald” pictures as requested by several folks.
Until later,
Dave
Postscript 2
April 2, 2004
Just some follow-up
My last letter, my “postscript,” generated a number of queries about several things, things which I thought I’d address in a follow-up postscript, if you don’t mind. A lot of folks had questions or comments about similar things which I hadn’t mentioned. I really had intended to mention a few more things in that last letter, but I thought it was getting to be too long, so I didn’t. So, now you get more stuff, even though I don’t really have any new “stuff“ for you.
I had questions about my hair, or lack of it, the patterns of loss, and a couple of requests for pictures. I’ll attach a couple of pictures at the end of this letter. The hair loss started several weeks ago, as I’d previously mentioned. I got my head shaved about two and a half weeks ago, when hair began falling out by the “handsful” (spellchecker doesn’t like that word, but I’m SURE it’s right) and I began fearing I would soon look like I had mange or something. I then shaved my head with a razor, as the stubble kept falling out and going down my neck. That didn’t solve the problem, however. The stubs of the hair shafts still continued to fall out by the hundreds, mostly after the morning bath, for some reason. Every little hair shaft was complete with a tiny little bulbous end, the root which was coming out with the hair shaft.
Meanwhile, other body hair was falling out, but not nearly so dramatically. The faster the hair grows, the more it’s affected by chemotherapy. So, hair like my eyebrows and eyelashes weren’t affected much at all, since they are very slow growing, and so they still seem to be pretty much normal. The same can be said for the hair on my arms and legs. Now, the hair in my armpits and, uh, (ahem) lower areas has thinned quite a bit, but is not entirely absent. I think that if I’d had multiple doses of Cytoxan, as do many cancer patients, I would have eventually lost every bit of body hair.
One place that my hair seemingly hasn’t been affected at all is in my ears! The damned ear hair continues to grow merrily as the rest of my body sheds. Is God playing a joke on me?
It has now been exactly a month since I received the single dose of Cytoxan which was responsible for this hair loss phenomenon. My head has all but stopped shedding at this point and I am seeing the first little wisps of pale, downy, new hair growth. One has to look very closely, but it is there. Meanwhile, my beard is showing signs of renewed life. I have only been shaving every several days, but I do have a very fine stubble after that length of time. I have about one pale bristle for about every square half inch of my cheeks. My chin, for some reason, remains as soft as a baby’s butt.
For whatever reason, I really never got “the fuzzies” with this last treatment. I have to guess that was because I only got one, intense dose, and not several doses over several days, repeated every month. The only thing that I did that was weird after this last treatment happened the week after the Cytoxan. I was sitting at the dining room table. looking at old photos and labeling them. I was developing a headache and decided I needed to go upstairs to get some medication before it got too bad. So, I went upstairs, went to where the medicines are, but inexplicably picked up the watering can, mixed up some Miracle Grow in it, watered all the plants upstairs with the appropriate mixture, using several watering cans full of the mixture and then returned downstairs. When I sat down, I thought, “Man, I’ve got an awful headache.” Chemo brain!
I got a couple of messages from some friends and a cousin up in Iowa about my mention of giving my excess medications away, to be used for folks who couldn’t afford these same medications. In Iowa City, at the University hospital, a couple of nurses have been recently fired for using left-over medications that some patients didn't need, and providing them to patients who could not afford them, much like I did, apparently. There has been quite a row and lots of letters to the editor in the local papers over the firing of these nurses who were just trying to help poor people.
Now, in my last letter I did mention that I asked the Rocky Mountain Cancer Center if they could use the drugs, and if it was legal for them to take them. I’m honestly not sure that it was technically legal for them to take these meds, but I didn’t ask too many questions as I want them to get used. However, I’m not a pharmacist, and so I can’t legally dispense drugs. And the person I gave them to is not a doctor, and so can’t legally prescribe or dispense the drugs. And, the drugs have been out of a pharmacy, so if I had some evil intent, I could potentially have adulterated them and made them dangerous to others. There are lots of laws surrounding the handling of drugs, to make it difficult for people to illegally get drugs (as a doc, I can’t both prescribe and dispense drugs) or to steal or mishandle drugs. It’s just that all these laws, designed to keep your drugs safe, often get in the way of common sense when it comes to redistributing leftover drugs to others who might need them. I’m guessing that the nurses in Iowa City ran afoul of these laws, but were able to get away with it until someone, for some reason, blew the whistle on them. It’s too bad that there’s not a good, legal way to use these very expensive drugs when they're left over and not needed.
I received a number of very nice comments about my last letter, complimenting me on my descriptions of Alaska and some of the things we’d seen. My biggest fan, my Mom, wrote, “I enjoyed your letter about your trip to Alaska. It made me feel like I was there.” Sister-in-law Kristy said just about the same thing. Phil Dennis up in Juneau gave me high marks also. “Just finished reading one of your best pieces of writing. Your nature descriptions both scintillating and clean as a whistle.” His wife, Clovis suggested I start writing for the Juneau chamber of commerce. “I loved your latest piece of writing. Beautiful, just beautiful descriptions. Never seen it written better. You should be working for the Juneau Chamber of Commerce.” My friend Shara, down in Castle Rock wrote to say, “I love your vivid descriptions!” (Shara and her husband and I have known each other for years. She’s been a favorite patient, and we’ve been through a lot together; surgery, pregnancies, both good and bad, her MS and my leukemia. We know each other well. She recently wrote that we needed to get together for brunch or something, so we could spend some time talking. “The only times I ever get to see you, I’m naked!” she wrote. How many of you have THAT problem?)
Well, I really appreciate all the wonderful comments about my writing, and I have to tell you, I really enjoy doing the writing, but I suspect that for every person who thinks it’s great, there are probably three who roll their eyes when I launch into my best Bulwar-Lytton excess. But, it’s just that I think I see more detail in the things around me now, and want to record the things I see. I could have written so much more about that scene on the beach but I felt I’d probably gone on too long as it was. As I was standing on the boulders on the beach, I was noticing all the different strata in them, and all the different colors, shapes and structures of the rocks around me. And all the birds in the distance, and the island across the channel with waves crashing along its shore too. I just seem to sense more and feel more than I ever have before, probably because I now realize, only too well, that I no longer have an unlimited life span, as I once imagined I had.
I felt the same way every day at breakfast in the Wolfhouse. The breakfast area in that wonderful B&B is just about completely glassed in. You can look from your place at the table and see through the trees to the Gastineau Channel. The channel is always active with birds of many types, almost always including bald eagles, which not uncommonly fly directly over your head as you watch them. Whoever decided to glass in the room was a genius. But, beyond the Gastineau Channel is Douglas Island. I described its shore. But it has mountains, beautiful mountains. And when we were there, they were all snow capped, “the mounts vanilla atop black granite,” as Phil has described them. I’d look and look at them every day, though they were always the same. I took many, many pictures, but they just don’t capture the feeling of seeing the beauty so close. Alaska has so much natural beauty, that they don’t even name all the mountains, glaciers, sounds, etc. There are four lovely unnamed mountain peaks across the Gastineau Channel from the Wolfhouse. Since no one has taken the time to name them, Phil took it upon himself to name them Wolf, Bear, Eagle and Peregrine Peaks.
I want to tell you about something we saw on this trip to Alaska which I’ve never seen ever before, anywhere. Imagine you’ve planted some grass seed in the spring, watered the seeds, fertilized them, protected them. In a week or so, they sprout, so you have small clusters of green, thin blades of grass. Now, imagine that instead of blades of grass, you are seeing crystals of ice growing out of the ground. We saw that in multiple places along the trails on Douglas Island. The ground is beginning to thaw at this time of year, but the air temperature overnight and in protected, shady areas, is still below freezing. Small seeps of water, micro-springs if you will, rise to the surface but the water freezes on contact with the air, and the resulting crystal is pushed out by the force of the water below to grow longer and freeze more. I was amazed. I’ve never seen that in Germany or any other place we’ve lived. But the locals see it all the time and weren’t impressed.
Last weekend, Kathy and I took a very quick trip to Stillwater, Oklahoma to visit her dad. We hadn’t seen him since last summer, and wanted to see how he was doing. We had hoped to go earlier in the month, but the delays in my therapy pushed back all our plans. We actually weren't going to go at all, but United surprised us with a weekend special e-fare, so we decided to buy the tickets and then go, or cancel, depending on how I was feeling. I was feeling somewhat stronger by the time we were to go, so we went.
Kathy’s dad is 92 years old. He has always been a strong, independent man who took care of himself and the other members of his family when they needed help. He mowed his own lawn up until about two years ago. But time caught up with him and his wife of 62 years, so last year they moved into a very comfortable assisted living home. Then, his wife died suddenly of a stroke. I mentioned that event last year in these letters. It is remarkably sad how much Kathy’s dad has now declined since losing his wife eleven months ago. Functionally, physically and mentally, he is not the same person. He remembers his daughters, for the most part, but easily confuses the supporting cast, the grandchildren, sons-in-law, etc. He generally doesn’t know what time of day it is, what meal is coming up, etc. It is so sad. But, all too predictable. Statistically, I think most elderly surviving widowers die within one to two years of losing a long time spouse.
Which made me wonder, again, when is the “best” time to die? Is there a “best” time? For Kathy’s dad, it would have been when his wife died. He even said as much, that if he could have, he’d have gone with her. But we don’t generally get to make those decisions. Now, it would seem that life has no joy or meaning for him. Disabilities and infirmities will eventually affect us all. When should we go? What’s the best time?
When we left Stillwater to go back to Oklahoma City, to catch our return flight, we arrived at the airport and checked in a record three hours and twenty minutes early! As I’ve often mentioned, my wife wants to make sure we never get anywhere late. Our children would be proud.
One last thing: over the many months I’ve been writing these letters I’ve often mentioned our friend Jane who lives in Iowa most of the year, and in Florida in the winters. Jane’s son Randy turned fifty a few months ago. He promised himself that when he turned fifty he’d get a prostate check and a full exam. His prostate test, the PSA (prostate specific antigen) was abnormal. He underwent a full workup and eventually had surgery not too long ago for prostate cancer. Now he’s been found to have metastasis to a rib, which has been removed, and now he’s getting hormonal treatments. If you’re the praying kind, please remember Randy tonight. He, his wife and parents have had a rough time lately. Thanks.
And, I went to work today. I had a fairly light day, but now I am very tired. Tomorrow will be a very busy day, so I’m going to try to get to bed early tonight. So, I’ll close and I hope to remember to scan and attach a couple of “bald” pictures as requested by several folks.
Until later,
Dave
Thursday, March 25, 2004
Book Two, Postscript One: Alaska, and Wonderful News
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.)
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.)
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.”
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