Dave’s Great Adventure
Postscript #3
May 6, 2003
No News Is Good News
Hello again, to my friends who may have been wondering what has happened to me in the last couple of months, in My Adventures With Leukemia. Well, the good news is that there isn’t really too much news to report.
The last time I wrote it was to tell you that we had tried and failed to collect stem cells from my peripheral circulation, while I was in remission. I’m happy to report that I’m still in complete remission and overall doing pretty well, but we still haven’t been able to collect any stem cells, cells which would be used to transplant back into me at some time in the future when I relapse. As nice as my remission is, my docs expect a relapse at some point in my future.
My white count has been very, very slow to recover. In February, when I last reported on my adventures, it was about 2,600 or so (normal is about 4,000- 10,000). That was four months after we had finished my chemotherapy. Now, seven months after the completion of my therapy, my white count has only recovered to 3,300 as of the end of April. That is still too low to collect stem cells. My “transplanter” doc, Jeff Matous, would like to see my counts in the 6,000 range, but would be willing to try to collect some cells if I can get up to the 4,500 level some time in the near future. He wants to get a collection done before my leukemia rears its ugly head again. He still tells me, however, that he expects “a good, long remission.” As before, though, when I ask him to quantity “good long remission” in terms of months or years, he just smiles. Truly, since my therapy was based on a study of only 130 people, and was only completed a year and a half before we started my treatments, nobody really has any long-term data on what to expect. So, I guess it’s unfair of me to try to pin Jeff down and give me a number of months/years my remission should last.
I continue to be amazed at how few infections I’ve had during and since my chemotherapy. With my white count so critically low, and having been that way through the cold and flu seasons, I’ve done incredibly well. I’ve had the one short cold I mentioned to you last January, I believe it was, but nothing else. It is true that I’ve been much more careful around crowds, and I’ve assiduously avoided people with obvious colds ever since we started this “adventure.” And I still wash my hands compulsively, keep my hands away from my face and eyes and try not to bite my fingernails. I have been worried that I’d be getting skin infections, lung infections, and so on. My doc still has me taking some antibiotics a couple times a week to help prevent pneumonia that I might be susceptible to.
The only infection I’ve had was one that surprised me. About two months ago my eye started bothering me one night, while I was sleeping. It felt like there was something in it. It seemed to be better by the morning, so I went about my business, but my eye was watering most of the day. I ignored it, though. This went on for a couple of more days, until I took a really good look at my eye. I had examined it a day or two before and had seen nothing. But this time I saw what was essentially a pimple on my cornea! I had visions (no irony intended) of going blind. I hurried in to see my buddy, the eye doc, who examined me, diagnosed an infiltrate, or really “pus” in my eye, and started me on antibiotic eye drops every four hours. He also told me to stop wearing my contacts, which I had already done. Happily, the infection resolved over about five days and I suffered no permanent effects.
Something else happened that I was sure was going to cause me a serious infection. I think I’ve mentioned our “pet” squirrel (Eichhoernchen) which has been coming up on our deck in the back yard for a few years. She’s relatively tame and eats out of our hands. She even will climb up on my lap when I’m in the back yard and eat off my lap. Well, our friend (whom we call “Stubby “ since she lost the end of her tail to a coyote or something) is pregnant again, as she seems to be every year at this time. Yes, I hear you asking how do I know she’s pregnant. Well, I’m an obstetrician, it’s my job to know these things! Really, what happens each year when she gets pregnant is that her nipples get very large. What also happens is that she gets very hungry. You know how we say that a pregnant woman is “eating for two?” Well, Stubby is eating for about eight or so. She become ravenous (heisshungrig).
Last week, before I went to work, I saw Stubby out there, scavenging through some bird seed which we had put out for our feathered friends. I thought I’d give her some peanuts, since they’d be more nourishing for a poor pregnant squirrel than bird seed. I got a handful of roasted peanuts, in the shell, and walked out on the deck, approaching Stubby. She saw me coming, and as I reached toward her with my handful of peanuts, she lunged at me, so anxious was she to get to the peanuts! What she got, however, was not the peanuts. The closest thing to her, and looking something like a peanut, was the end of my fourth finger. Stubby bit hard and deep!!!! I yelled and jumped back, Stubby scrambled away as fast as she could, and I headed back into the house.
I inspected the damage. I had two very deep cuts, a half inch each, one on each side of the fourth finger of my right hand (my examination hand, if you know what I mean), right where the blood vessels are. The cuts were bleeding profusely. I went to the sink to wash the wounds and let them bleed for a long time to wash out the bacteria. I was wondering, “What kinds of germs do squirrels carry? Do they carry rabies (Tollwut)?” I was thinking that we’d have to kill Stubby to see if she had rabies or else I’d have to get the rabies shots, injections which I hear are not at all pleasant.
But a more immediate problem presented itself. I couldn’t get the wounds to stop bleeding. I kept paper towels on the cuts, but every time I removed them, the bleeding continued briskly. I couldn’t even get it slowed enough to apply a Band-Aid. Finally I tightly wrapped a paper towel around the finger and drove to work with my left hand, thinking that I’d need help to get the thing treated properly. And of course, I did. The staff in the emergency area, after snickering over my description of how I received my wounds, tried to dress them. But the bleeding would not stop for them either. Finally, the doc put a tourniquet (Aderpresse) around my finger, irrigated it with a solution, and then put adhesive strips across the incisions to close them before removing the tourniquet. That worked. They then applied a bulky pressure dressing to the finger, and off to work I went.
So, all day long I was answering the question, “You did what?!”
The doc gave me some pretty powerful antibiotics since we didn’t know what germs squirrels carry around with them. And he didn’t seem at all concerned about rabies, since the squirrel wasn’t acting abnormally, so Stubby’s life was spared. I still feed her, but now I’m much more careful about letting my fingers get close to her mouth. I’m very lucky that she didn’t bite my second or third fingers, my “exam fingers.” With the pressure dressing I had to wear, I wouldn’t have been able to do any gynecological exams and would have been out of business for a couple of days. And I remain amazed that the wounds didn’t get infected. Animal bites are probably among the most contaminated wounds you can get.
So how am I doing? Overall quite well. I’m still working four days a week in our clinic and doing a couple of daytime shifts each month on Labor and Delivery on weekend days. I feel tired a lot. I’m not sure what that’s all about. I get short of breath more than I think I should, but I get through the days okay. If this keeps up I may have to go back to my Internist to see if anything else is going on.
But my outlook is much better than it was for so long. I don’t worry about my disease every day like I used to. I’ve even started making longer term plans again. I think I’ve mentioned to most of you that I was thinking about taking a trip to Antarctica next January. Well, we’ve made the reservations. And I’ll be taking Kathy to Alaska in June/July for a 12 day vacation, seeing things we’ve talked about and wanted to do for many years. I’ve now passed the first anniversary of the date I got my diagnosis and I look forward to the first anniversary of my remission in a few months. So far, so good!
Hey, I found out something interesting recently, about one of my chemotherapy drugs. One of the drugs which I’ve mentioned is Fludara, or fludarabine. It’s very active against lymphocytes and is commonly used in treating leukemia. But how it was developed is, I think, interesting. It seems that when doctors were studying patients with severe combined immunodeficiency (Immunitaet-los?) syndrome (people like the “Bubble Boy), they found that they had an abnormal chemical in their circulation which destroyed white cells. They were able to isolate the chemical and then synthesize it, and it became a new drug in the treatment of leukemia, Fludara!
I also found out something else about my disease. The last time I had a bone marrow biopsy done, Jeff ordered a chromosome study done on the cells. It seems there are different chromosomal aberrations seen in chronic lymphocytic leukemia, and they all are essentially different diseases, yet they all manifest the disease in the same way, with an elevated white count. Probably they should all be treated differently, as they can act differently, but this is a brand new finding and the clinicians (those who treat the disease) haven’t caught up with the researchers on this yet, and so they don’t know how to treat the different chromosome patterns. It turns out that my chromosome pattern was a normal 46 XY pattern. That may be good news, as folks with a normal pattern have a life expectancy of about 10+ years, as opposed to the six or so years that the average life expectancy is. Some of the abnormal patterns result in a life expectancy of only two or three years. Anyway, I say that MAY be good news, as my chromosomes were studied at a time when they really couldn’t find any leukemic cells in my marrow anyway. So it may not have been an accurate representation of the cells of my disease. We’ll probably have to repeat the chromosome study again when/if my disease relapses.
I think I had mentioned previously that we are in quite a drought here in Colorado. Our dry summer last year, with all the forest fires, was followed by a pretty dry and warm winter. That is, until March! On March 17th, our son Jeremy and his girlfriend Marisa flew into Denver for Spring Break. They wanted to see Colorado during their vacation from the college grind. That night it started to snow. And it kept snowing for days. By the time it stopped snowing we had three to four feet of snow on our driveway and there were places in the mountains where they had over eight feet of snow. Many, many roofs collapsed in the Denver area from the weight of the snow. The snow was so deep in our neighborhood that I could not get out to go to work. for three days. Finally I had to hike out of the neighborhood to a main street so I could be picked up to go to work. Thankfully, later that day, a snow plow came through and cleared a path out for us. Only then did Jeremy and Marisa get to get out of the house and see just a little of Denver. They never did get to see the mountains. What a great Spring Break! Actually we were glad to have them here. We had someone to play card games with while we were housebound and someone to help us shovel the snow off our driveways and sidewalks.
The huge snowstorm has alleviated a bit of our drought and has replenished our water supplies in the area to some extent, but we’re still under drought water restrictions for the coming summer months, some of which, make no real sense. I understand why they want us to restrict the amount of water we use to wash cars and water our lawns with, but there are other water laws that seem silly. The law says we have the right to use our water one time only. In other words, we can’t take a bath in the tub and then water our plants with the tub water. Or we can’t cool our drinks with ice cubes and then put the cubes in the watering can to do the same. I think that’s wise water conservation. The water authority wants us to put the water back in the drain so they can reuse it. However, I don’t think there are enough police in Denver to track down all the scofflaws who reuse some of their water to water their plants or flush their toilets with bath water.
I would like to finish up this message with some sad news. First, last month Kathy’s mom died, rather suddenly, of a stroke (Hirnschlag). She had been in relatively poor health for a number of years but this was still a surprise and shock to all of us. She was 84 years old. We gathered together in Stillwater, Oklahoma last month for her funeral and to help Kathy’s 92 year-old father get her affairs in order. He’s a lost soul right now. They had been married for 62 years!
Also, the week before Kathy’s mom died, my colleague, Laurel Harkness, who had been fighting breast cancer for a number of years died also. I have mentioned Laurel in my letters from time to time. She helped out in my clinic last year when I was out with my chemotherapy. In fact, we saw each other in the chemotherapy rooms and one day we even sat side by side getting our infusions. But her chemotherapy finally stopped being effective and she developed many metastases to her liver last December. She died at home a few weeks ago at the age of 44, I believe.
And that’s all the news from the Denver suburbs for now. I’ll let you know if there are any changes if/when there is anything to report.
Dave
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