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
This blog was initially created in 2005 to track my progress through a stem cell transplant for my recently diagnosed multiple myeloma. Like so many things in life it has grown into so much more and is now a worldwide support network for me and my family as we travel the path of living with myeloma. Read or comment if you wish and welcome to our journey.
2 comments:
Again you wirte us great news, how wonderful to read, I am so glad for you, getting more and more significant steps towards a chronical disease instead of ....
See, I was not expecting a blog from you, after the last one, where you wrote that until June you will not write, and here we are, you gave me the opportunity to go to bed with a smile, and that is a big deal.
Thank you Dan, I will continue to check, who knows what else you might let us know.
How about some flowers in your front yard? Nothing blooming? No tulips? If yes, just sit infront of them and enjoy how beautiful they are.
Love,
I
Hey my friend! Numbers are good! News is great! Since I only swam 8 lengths and called it quits for the summer I feel that you are doing a lot better than me. Take care.
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