Wednesday, May 28, 2008
Monday, May 19, 2008
Catching a Break
The memories of a series of disappointing news over the past couple of years are still a bit too fresh, which makes good news, even a small dose of it, very welcome. We had a nice visit with Rifkin today and reviewed my status, numbers, and discussed "the plan." The good news? I'm stable, holding my own, on a plateau, or however you want to describe numbers which don't change much, month to month. As for the plan going forward for someone in my situation, Rifkin's comment was, "there is no reason to potentially compromise the quality of life you currently have with the risks associated with a more rigorous treatment regime." Of course, no one knows how long I can maintain this plateau (can you say indefinitely?), but for now I know we are quite grateful for my current state of stability.
We also discussed the weekly roller coaster I go through with the steroids. As a result Rifkin advised that current studies support trying to reduce the toxicity of long term steroid treatment. Duh! I could've told them that, no study necessary! Rifkin thinks that I may well get the same result by spacing the steroids out over 2 days, rather than one major dose on Mondays. Does this mean I might actually get some sleep on Monday nights? We'll soon find out. Whatever the results, it will be easier on me than the current regime and for that I am also thankful. And Susan (who has to tolerate my 'roid rage and mood swings) is probably even more thankful. Maybe he's saved my marriage. (Just kidding. I'd never let Susan go.)
Julia is home for the summer, having completed her junior year at Colorado College. She is working for a Colorado vector control company that monitors and tries to control the mosquito population, primarily directed at controlling any West Nile virus. The company has many connections with the department of health and she will learn much of the groundwork used in controlling the spread of disease. This should be a good complement to her Public Health major. Besides, she gets to work alone, mostly outside, and will have her own truck (stick shift) to travel to different sites around the Denver metro area. She's excited. We think it's a stitch. Oh, and she will not be working with any pesticides.
That's the news this Monday. Next numbers will be reported on June 9.
Love,
Dan
We also discussed the weekly roller coaster I go through with the steroids. As a result Rifkin advised that current studies support trying to reduce the toxicity of long term steroid treatment. Duh! I could've told them that, no study necessary! Rifkin thinks that I may well get the same result by spacing the steroids out over 2 days, rather than one major dose on Mondays. Does this mean I might actually get some sleep on Monday nights? We'll soon find out. Whatever the results, it will be easier on me than the current regime and for that I am also thankful. And Susan (who has to tolerate my 'roid rage and mood swings) is probably even more thankful. Maybe he's saved my marriage. (Just kidding. I'd never let Susan go.)
Julia is home for the summer, having completed her junior year at Colorado College. She is working for a Colorado vector control company that monitors and tries to control the mosquito population, primarily directed at controlling any West Nile virus. The company has many connections with the department of health and she will learn much of the groundwork used in controlling the spread of disease. This should be a good complement to her Public Health major. Besides, she gets to work alone, mostly outside, and will have her own truck (stick shift) to travel to different sites around the Denver metro area. She's excited. We think it's a stitch. Oh, and she will not be working with any pesticides.
That's the news this Monday. Next numbers will be reported on June 9.
Love,
Dan
Monday, May 12, 2008
Stable Statistics Sprout a New Start
How's that for alliteration? Now, what does it mean? Numbers are about the same. Igg's up 100 points, to 1750, but nothing looks alarming. The M-protein (detects the presence of the myeloma protein) is 1.2--the same as last month. It has been as high as 2.5. If I were in remission it would be 0, but 1.2 is a good number for me. Other measures are about where they were last month, so I think it's safe to say I'm holding my own. Given that I missed one dose of chemo in the last cycle due to the flu/pneumonia, these numbers are just fine with me.
The new start refers to my resuming my swimming. I swam all last summer, when I was not on chemo, but haven't been back in the pool since restarting my chemo last September--just too tied most of the time. Feeling pretty good today, and with my white count in the normal range, I ventured back to the pool. While it felt good, it was disappointing to discover that I am a long way from the condition I was in last September. I was only able to swim 20 laps, which is about 25 to 30% of what I was swimming last August. Oh well, it'll give me something to work on. I have managed to drop 35 pounds over the winter, which should give me greater speed, don't you think? It is nice to have finally rid myself of the weight the steroids packed on me a couple of years ago. Fat boy no more! Although I'm still on the 'roids, I was deeply motivated to lose the weight---all prompted by Julia's comment last fall that I ran like a bowling ball. I'm not sure how a bowling ball runs, but the image disturbed me greatly. This makes me wonder if I swim like a bowling ball.
That's all the news here. Susan is pulling out of her bout with the crud. Julia returns from school tomorrow for the summer, and Catherine continues to keep a watchful eye on the financial markets. Have a great May and I'll probably check in with you with the next numbers in mid June, unless something exciting happens.
Love,
Dan
The new start refers to my resuming my swimming. I swam all last summer, when I was not on chemo, but haven't been back in the pool since restarting my chemo last September--just too tied most of the time. Feeling pretty good today, and with my white count in the normal range, I ventured back to the pool. While it felt good, it was disappointing to discover that I am a long way from the condition I was in last September. I was only able to swim 20 laps, which is about 25 to 30% of what I was swimming last August. Oh well, it'll give me something to work on. I have managed to drop 35 pounds over the winter, which should give me greater speed, don't you think? It is nice to have finally rid myself of the weight the steroids packed on me a couple of years ago. Fat boy no more! Although I'm still on the 'roids, I was deeply motivated to lose the weight---all prompted by Julia's comment last fall that I ran like a bowling ball. I'm not sure how a bowling ball runs, but the image disturbed me greatly. This makes me wonder if I swim like a bowling ball.
That's all the news here. Susan is pulling out of her bout with the crud. Julia returns from school tomorrow for the summer, and Catherine continues to keep a watchful eye on the financial markets. Have a great May and I'll probably check in with you with the next numbers in mid June, unless something exciting happens.
Love,
Dan
Monday, May 05, 2008
Statistics and Other Tidbits
The visit with Dr. Rifkin today was uneventful. My basic blood counts (white, red, platelets) are normal. We'll get myeloma numbers (IGGs) next week. I've still got a small amount of the crud that leveled me a few weeks ago, but it's on its way out and I feel fine. So they juiced me up with velcade and the steroids and I'm off and running for another week. After being off the 'roids for 3 weeks, I'm bracing for an all nighter tonight.
Soon after returning from Paris Susan came down with the same flu I had. She's been quite sick for the past 10 days and is finally moving about again, although still not 100%. We're tired of it!
But now for the real statistics. Every once in awhile I get a report on my blog. It has some very interesting statistics. For example, the blog has had 968 visitors since March 17. The visitors have been from 4 different continents (North America, South America, Europe and Asia) and 20 states in the U.S. with an average of 12 visitors per day. All this activity causes me to think I should make this blog more interesting. But, then when it was more "interesting" I was a lot sicker. I think we'll hope to keep it boring.
Finally, as I mentioned earlier, I've taken a position on the Executive Committee for the Leukemia and Lymphoma Society's Light the Night Walk in Denver. If you're wondering what to do with those Economic Stimulus Package checks that are coming in the mail, a donation to the Leukemia and Lymphoma Society would be a great way to stimulate our economy. I will be setting up a website as in years past. Checks can be sent to Leukemia and Lymphoma Society, Rocky Mountain Chapter, 5353 West Darmouth Ave., Suite 400, Denver, CO 80227. Please note on the check "Dan Patterson's Team". And thank you. I can't emphasize strongly enough how important the research is, for me and many others like me. In my visit today with Rifkin I asked how long he thought I could go on this velcade maintenance program. His response was he didn't know (of course). But more importantly he said, it would depend on what other drugs have cleared the clinical trials and are available. The Leukemia Society's funding of cancer research has been highly successful, including the application of Gleevec to chronic myeloid leukemia, which is estimated to have saved 20,000 lives already. Any amount of a contribution is greatly appreciated.
I'll let you know about the IGGs next week. May you all have a great week.
Love,
Dan
Soon after returning from Paris Susan came down with the same flu I had. She's been quite sick for the past 10 days and is finally moving about again, although still not 100%. We're tired of it!
But now for the real statistics. Every once in awhile I get a report on my blog. It has some very interesting statistics. For example, the blog has had 968 visitors since March 17. The visitors have been from 4 different continents (North America, South America, Europe and Asia) and 20 states in the U.S. with an average of 12 visitors per day. All this activity causes me to think I should make this blog more interesting. But, then when it was more "interesting" I was a lot sicker. I think we'll hope to keep it boring.
Finally, as I mentioned earlier, I've taken a position on the Executive Committee for the Leukemia and Lymphoma Society's Light the Night Walk in Denver. If you're wondering what to do with those Economic Stimulus Package checks that are coming in the mail, a donation to the Leukemia and Lymphoma Society would be a great way to stimulate our economy. I will be setting up a website as in years past. Checks can be sent to Leukemia and Lymphoma Society, Rocky Mountain Chapter, 5353 West Darmouth Ave., Suite 400, Denver, CO 80227. Please note on the check "Dan Patterson's Team". And thank you. I can't emphasize strongly enough how important the research is, for me and many others like me. In my visit today with Rifkin I asked how long he thought I could go on this velcade maintenance program. His response was he didn't know (of course). But more importantly he said, it would depend on what other drugs have cleared the clinical trials and are available. The Leukemia Society's funding of cancer research has been highly successful, including the application of Gleevec to chronic myeloid leukemia, which is estimated to have saved 20,000 lives already. Any amount of a contribution is greatly appreciated.
I'll let you know about the IGGs next week. May you all have a great week.
Love,
Dan
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