Tuesday, July 22, 2008

Things are relatively normal

It's been a while since I've posted, mainly because I'm feeling great and there hasn't been a lot of status to report. Also I've been busy at work for the last week and a half, working at the office full-time.

Here's a quick update on what's been happening:
  • Since the platelet transfusion the counts jumped up to 48 and have been steadily dropping since, which is expected since the lifetime of platelets is only a week or so, but they're hanging in there for the most part. On Monday after the transfusion the counts were at 48, Wednesday - 40, Friday - 28 and last Monday - 22. If they drop below 10 again we'll need to do another transfusion so I'm hoping they'll hover somewhere above that for a while.
  • Tomorrow we have a consultation with a naturopathic oncologist. I'm looking forward to this, since I think we're pretty well covered in the area of medicine and treatments but Johanna and I feel like there is a big gap with everything else we should be doing, like what kinds of food I should be eating, what types of excercise and activity we should be doing, and in general what kinds of natural things can we do that might help. For example, I read recently that eating pineapple can help stimulate the growth of platelets, and is the only food known to do so. Apart from a clinical trial there is also no known drug that can stimulate the growth of platelets which is why they're particularly hard to manage. What's interesting is that several months ago (before I was diagnosed), I rediscovered pineapple and fell in love with it, and raved about it to my friends. So maybe it's not a coincidence and my body was trying to tell me something. Anyway, the oncologist we're seeing has spent the last 10 years specializing in naturopathic cancer care and is familiar with MDS so it should be interesting to hear what he recommends. For more info, click here and read about Mark Gignac.
  • Thursday I go in for another CBC (complete blood count) test. Last week I got poked 4 times (Mon, Tue, Wed, Fri), 3 times for routine CBC checks, and once for more HLA typing for the donor search. When I go in for blood work I call it my "red shirt day", since I wear red shirts on that day to let my friends and coworkers know I'll be out for a little bit giving blood. Yesterday I had to wear one of Johanna's red shirts since I'd run out!
  • Friday we start another round of chemotherapy, this one lasting 5 days. I know what to expect this time and how to manage some of the side-effects, so it shouldn't be too bad. Though I still have the bruises on my belly from last time (the injections are subcutaneous and injected into your belly fat). I expect to look like a pincushion after the next round, heh.
  • Finally, my parents have decided to rent an apartment in Seattle, which is really great. They'll still keep their house in Albuquerque, but they'll stay up here for the next 6-9 months to be near my sister and I. What's cool is that they managed to find a huge and really nice apartment less than a mile from our house, which is "coffee distance", meaning it's close enough to stop by for coffee in the morning or after work so we're really excited about that. It's great having family close by, and I can tell they're excited too.
That's it for now. The donor search process has officially started and has mainly involved correspondence with the search coordinator and filling out consent forms and dealing with insurance coverage. I expect that once we find a donor things could move pretty quickly, so we'll see how it goes.


Liz Rodgers said...

Hi Steve (and Johanna)-

Karim forwarded a link to your blog, so I wanted to make sure to stop by and say Hi. I wasn't sure if you knew this, but during my last quarter of nursing school I did my senior internship at UWMC on their Hem/Onc and Stem Cell Transplant unit (where I assume you would go for transplant?) I would love to be a resource if you ever need it. In particular, I could give you the names of some amazing nurses that work on that unit or try to get you connected with other patients that have gone through the same treatments. You guys are definitely in our thoughts during this intense and stressful time!

obscurity said...

That's awesome that your parents are going to be up there too! Yay! More people to visit - in coffee distance - I like that concept.