Bad News on Thursday
It’s taken this long to be able to share this.
We learned last week that the doctors believe my leukemia is too aggressive for successful treatment. Any further chemos would do more damage to the good bone marrow cells, and still not stop the bad ones. My diagnosis grew by a couple of words: Primary Refractory Acute Myeloid Leukemia.
On Wednesday they saw my white cell count jump from 0.4 to 1.0 in a day, which is not the normal rate of growth—it should go up by tenths, over a few days. The haemotologist said he wasn’t going to make any judgements until they see the numbers from the next day’s blood sample. On Thursday morning, the liaison nurse came to tell me they saw them move from 1.0 to 1.9—in one day. The consultant doctor was going to look at the blood sample under a microscope to examine it more closely, and then he wanted to meet with Elana and me in a couple of hours.
That’s when we learned the third round of chemo, some sort of industrial-strength version, hadn’t wiped out the leukemia cells and that they were there in full force, despite the power of the treatment.
I’m not eligible for stem cell transplant unless they could have gotten my current leukemia into remission (less than 5 percent of blast cells in the bone marrow). But that hasn’t happened, and they believe they cannot get it there.
I was discharged from the hospital today, and prescribed hydroxyurea, a tablet form of chemo which is intended to slow down the generation of the immature white cells, and hopefully at least reduce them a little bit. I’m going in next on this coming Thursday, where they’ll take a blood sample and in particular make sure my platelets are okay, since that medicine’s major side-effect is reduction of platelets.
The doctor said if I’m able to stay healthy and avoid infection, we’ve got a window of up to six months—if we’re lucky. Right now, I feel fine, and will be trying to do what I enjoy and be with those I love as much as we can make possible.
I’m so sorry this is the way so many of you are learning about this, but it’s as close as I’ve been able to come to actually saying the words, particularly with any frequency or involving more than one or two people. Or even acknowledging what’s happening. Part of it is still very surreal, though I’m making progress on that.
Don’t stop your positive vibes, prayers, karma, lamb sacrifice, and ritualistic bonfires. I am still happy to accept any and all donations.
B
