I know a lot of you have been waiting to hear how the treatments at Anatara are going. Well, me too. The frustrating truth is that we probably won't know if all this effort has been successful until about November.
The bone marrow biopsy showed 'only' 3% cancer cells in my marrow, essentially the same as March and much lower than Kaiser expected. And, for the first 5 or 6 weeks, the cancer blasts in my blood were going down consistently every week by 1-5 points. Then, about 2 weeks ago they spiked quite high. My Anatara doctor is quite sure this is because all the anti-cancer medicine they have been pouring into my veins have dislodged these cancer cells into my blood stream, and they are being counted by the blood tests. Sounds reasonable to me, but it was a lot more fun seeing the numbers go down every week and thumbing my nose a bit at Kaiser, who had essentially written me off.
I start a new stem cell treatment this week which will go through about October. So, hopefully by November, we will have eliminated the march towards AML as well as much of the original two diseases. If we can't get rid of the MDS and myelofibrosis, then I'll just end up back where I started.
For two months, my schedule was insane. I drove into the city by 9 am every day for 7 hour IVs, four days a week. The fifth day was generally something at Kaiser, like a blood transfusion. Meanwhile, normal household chores like cooking, laundry, putting out the garbage, feeding the cat and cleaning the litter box didn't go away. I was beyond exhausted. As my psychologist pointed out, "You're trying to save your life and manage a normal adult life all by yourself." Yup. This week, my schedule begins to be significantly reduced (hence sitting down to write an update). I only have to drive in once a week for August and probably less than that in September and October.
Since I imagine that the next 3 months will be an emotional roller coaster watching the blood results, I probably won't post much. Whatever I write could be easily out of date the next week. But, please don't stop calling and visiting. I have a large deck made for social distancing.