Finally, another update...
Hi everyone, it’s Joanne. Sorry that I’ve been MIA for almost 2 months. First, I waited for the Stanford meetings, and then it’s been a slightly bumpy health ride the last few weeks.
I’ll keep this brief – mainly because I’m pretty tired these days, without a lot of red blood cells or hemoglobin to keep me going. And besides, who wants to read the War and Peace of day to day cancer care. Yuck.
On the positive side, I’m still handling chemo pretty well, all things considered. I finish my fourth round tomorrow, Tuesday Nov. 20. They have learned how to control most symptoms like nausea with magic pills. The one side effect they can’t really control yet is fatigue, which is compounded by my disease itself and a pulled groin muscle. (Note to self: save working out for after I’m well.) I’ve also had a few short episodes of fever and chills.
Consequently, I’m pretty much a couch potato these days, aided by blood transfusions about once a month. Today was a chemo and transfusion day which should help me feel energetic enough to represent at Thanksgiving. I’m finally starting to need assistance with grocery shopping, laundry and changing sheets so frequent house guests have been helpful.
Next week, I’ll have another bone marrow biopsy which will determine whether I need more chemo or am ready for a bone marrow transplant. The results should be available in early December. I’ll try to post something then.
The meetings at Stanford were perhaps predictably depressing. From a legal perspective, nobody there is going say something like, “You’re a great candidate. We have great hopes for your full recovery.” Instead, they just laid out, without any emotion, all the terrible risks and side effects associated with the procedure. Someday, the possible effects of the massive doses of upfront chemo, the graft/host diseases and survival rates will sound medieval – but not yet.
I just need to listen to other doctor friends who can tell me that I’m a great candidate and should do well. And, when the time comes, I will be asking all of you to send good thoughts and prayers at very strategic times.
The distilled version is that 1) a very preliminary search has turned up a couple of promising matches; 2) I will need to move down to Stanford for 3 months (assuming no complications) – about one month in the hospital and two months in a nearby apartment with a full-time caregiver and a WWI-like gas mask; and 3) the very earliest that the transplant could take place is January, although I’m assuming it will be a little later.
So, anyone who knows either a possible house sitter for Larkspur and my cat Sam or a place to stay near Palo Alto, please let me know.
But, for the moment, I am safe and secure on the couch with Sam in my beautiful little house.
One more thing: many of you have asked whether to call, when is the best time to call, etc. etc. Here’s the short answer: CALL! Whenever you want. I love hearing from you. I’ll tell you if it’s a bad time and call you back.
Love to all of you, Joanne[...]
