The one that switches off the leukaemia. The one that costs $5000 full price. The one that is my insurance policy.
I'm sick of feeling nauseas and tired. I'm sick of bone pain. I'm sick of feeling like I can't do things and go places and enjoy myself. I feel like I'm just trudging through life. I want to feel light and happy and energetic.
I know my doctor won't be happy with my suggestion. I'll remind him he said I'm 'probably cured'. If the leukaemia returns I can return to the medication, of course. Or maybe I can try an alternate drug that does the same things with fewer side effects - it's different for each patient.
I want to return to feeling normal. Wish me luck!
Monday, February 03, 2014
Only now because the year doesn’t really begin until the kids go back to school and the weekly schedule emerges and the calendar fills once more.
It’s a bit of a shock. We’ve spent January sleeping in, going to the pool, mooching about. The jobs we didn’t do one day could just as well not be done the next. Now it’s all commitments and appointments and filling in forms and putting money into envelopes and preparing for the many activities of each day and watching the clock.
I started the term with my uni exam, which turned out to be better than I expected. I’ve spent every day since on medical stuff; three days of vaccinations and a hospital checkup. I’m reading a book that lives on the shelf of my doctor’s waiting room.
The children’s schedules are nearly complete (music, dance and drama - anyone would think I’m preparing them for the stage), but I’m still working out what I’m doing this year. I’m teaching ethics at the primary school. I’m helping to prepare the Mamapalooza festival. I’m trying to gain more energy. That means eating well, getting some exercise and getting enough rest. What more I can do this year depends on my energy levels. I have four more units and two more pracs to do to finish my degree. Normally I’d do two units and a prac each trimester. I’m not sure I’m up to that yet, so I’ll have to just see what I’m capable of doing. It’s the pracs that will require a lot of energy. I’m still having a nap every afternoon. If I can’t finish the degree this year, I may as well spread it out. I’m keen to be well enough to work. I don’t know if my recovery has plateaued and I should just work with what I have. Everybody’s tired. Tired is the new normal. And it’s not measurable. Maybe I just need to blunder through. Fake it ‘til I make it. Otherwise I might have to find a way to work from home, or reduced hours, or create something to sell, or write a popular Christmas song. I’m taking transplant medication until May, and have convinced my doctor to let me take my leukaemia medication every second day (it causes tiredness, nausea and bone pain). I’m sure I was feeling lighter before starting on the leukaemia medication. My blood counts are now good, but my specialist is keeping an eye on liver function, which means extra check-ups. Add on the normal mothering tasks of cooking, cleaning, grocery shopping and running around after children, and I really don’t think I’ll have the time and energy to study more than a minimal load. But I’m going to give it a go. I also want to factor in some fun. Card games. Singing with a choir. Seeing people. What’s the point if I don’t have some fun? The more I write the more I’m convincing myself to go slowly, where I can. We’ll see what fits.