Last post I was pretty positive about my condition. Thinking I can tick along with medication, and it was now about managing the side effects. Thinking I can blog about other topics now. Lalalalalalala.
But no. My doctor has consulted with the experts on CML (and we have a world expert at Adelaide University) because my case isn’t a textbook case. They agree that I need a bone marrow transplant and chemo, asap. They believe the blast crisis cells will return and may not be so manageable next time, ie, the result may be fatal. More aggressive treatment means going for a cure, and my best chance of survival in the long term.
We’ve stepped up the search for a donor. I’m beginning chemotherapy in January (I could start now and feel crap for Christmas, but no). It’s Hyper-CVAD, if you want to look it up - very sobering. The process alternates delivery of chemo as an outpatient and an inpatient. I’m hoping the chemo can stream into the transplant process, rather than having to start and stop and start again. I’m hoping the whole process will fit into the calendar year. That would be neat. I now have to cancel all my commitments for next year, because although there will be times I’ll feel OK and be able to do things, I don’t know when those periods will be, and I’ll be very vulnerable to infection and need to stay away from crowds. Time to buy a thermometer to carry around with me. And more hand sanitiser.
Also, I’m changing my medication from Glivec to Dasatinib. It’s a second generation designer drug for CML, and thought to cause a deeper remission sooner. And not have the side effects of nausea and bone pain.
In the meantime, I have a sore hip. I felt quite well on Saturday and started doing some cleaning up, and I think I have sciatica. If it isn’t sciatica, well, I’ll have to get a bone scan. So I’ve been hobbling around. It’s been a bad week for housework. I haven’t bought any Christmas presents yet. Usually I’m finished by October. We’ve had lots of expenses - our little holiday, the dentist and orthodontist, servicing the car, starting high school. Good thing we have Santa transparency here. I’ve told the children their gifts will be staggered. I’ll order some books online that will probably arrive after Christmas. We are each getting a new pillow. And I want to buy the children an electronic device they can read on and use to listen to music, take photos with, and download apps for music practice. Their dad wants to avoid Apple products. He’s doing some research. They have no elctronic devices already, so we're starting from scratch. All suggestions welcome.
