I know 3 days ago I said I would fill in the remainder of the details the next day. We went to the doctor, then that night I was at Ultimate Frisbee league. Then the next night I was tired. Okay, crappy excuse. And this isn't about me anyway.
Heidi will start chemo in a few weeks. But this isn't your standard live-in the hospital, lose your hair chemo. It's stay at home and take one pill a day chemo. That will probably go on for 4 months, unless something unexpected happens. Which kind of chemo pill she takes will be determined by the genetic test ordered last week. Certain pills target certain chromosomal defects. Some defects are easier to correct than others. A defect on chromosome 5 is the easiest, so everyone put good vibes on 5.
This does not cure the MDS. It treats the symptoms by raising the red and white blood cell counts by genetically altering her bone marrow. Since it isn't a cure, the disease will still be present, but she might be able to cope and conduct normal activities. But how long is unknown. It might work for a few months or a few years or not at all.
The only cure is to get a stem cell (bone marrow) transplant. The doctor was very frank when he said we should not have this done in Tucson. He recommended either Mayo in Phoenix, City of Hope in L.A., or Fred Hutchinson in Seattle. Since we have family in Seattle, that is the natural choice. The are world renowned for stem cell transplants.
The doc thought Heidi will end up spending several months minimum in Seattle. Besides the procedure itself, they will want to monitor her before and after for months. We're not sure yet how long she will be living there and how long she will be making periodic airplane trips. Also we are not sure where I will be all this time. We'll probably both getting lots of frequent flier miles. My boss has been very accommodating about allowing me to make alternative schedules, working remotely, etc. I'm not real sure how much work I could do weeks at a time living 1000 miles away. But it's nice to know they will try to make it work for us. Raytheon is very good about taking care of its employees and treating them like people.
Conversely, Heidi is afraid to even ask what alternative schedules or workloads she could get where she works. Perhaps her type of work is just not conducive to anything but M-F 8-5. She certainly isn't acting sick lately. But since her white blood cell count is low, it's an infection risk to be mingling with the public. The doctor thought she could work at least part-time until he heard that she gets visits from Air Force residents with kids. Kids are too generous when it comes to sharing their cootie-laden fluids.
The doctor is going to refer her to Fred Hutchinson. Then her insurance company has to approve. He is also finding out from the Red Cross the procedure to get Toby and Robin HLA tested to see if they are potential stem cell donors. If anyone wants to help, go to this site and sign up to be a donor. Except Toby and Robin shouldn't sign up here yet; you will get special instructions. I've been on the donor list for 15 years and haven't gotten called yet. Some say this is further proof that I am incompatible with most people. Perhaps.
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