Monday, April 20, 2009

Day + 11 -- and a break in the cloud cover coming up!

Hello folks. Jill returned from LA (and the kids) last night and my brother Pete departed for his home in Chicago. The water brigade of friends and family that have helped out by visiting so Jill can get back to the kids every now and then has been so important to us and we are very, very appreciative!

I barely slept last night -- don't know why but I'm exhausted. The back aches, and I have lingering GI issues any time I try to eat something with so much as a gram of fiber, so I'm sticking to all the food that is bad for you. Hello pasta, my old friend -- it's time to eat you again.

My blood counts have turned the corner. White blood cells bounced up to 2.1 today -- which means I am technically probably no longer neutropenic, although I am going to continue on as though I am for another day or so. Platelets are still only 39, but that's an improvement. Their recovery is inhibited by the growth factor that I continue to receive via burning injection every day to stimulate white blood cell growth. If my white remain above 2 tomorrow (and they certainly should) then tomorrow's Neupogen shot should be the last for this cycle. My poor arms are so bruised (that's what happens when you can't clot -- a simple needle prick is an invitation for internal bleeding) that I look like a junkie, so a respite is very welcome.

Red blood counts remain low -- hemoglobin is flat at 8.4. But I have come to live with this, and realize that it will take a long time for these to recover. CRP is down today from 26 to 17 -- still a little high but to be expected given hematopoesis and the fact that it came down is a very good sign. No infections, looks like! Potassium was on the low end of normal but they gave me a take-home balloon infuser to prop it up. Magnesium is fine. Liver is still irritated from some combination of the anti-fungal meds that I stopped eight days ago and the overall protocol, but the numbers are only a little high.

Most importantly, I have a discharge appointment with BB on Monday at 10:30. I anticipate he'll give me a solid two weeks to go home and see the kids before returning here for transplant #2. This is happening none to soon -- we need to get home to see the kids for both their sake and ours. Jill will go back the day after tomorrow, assuming I am in a position to care for myself, and then I'll be here by myself for a few days before returning, hopefully, Tuesday.

Even better, I am told that my cancer markers will continue to go down -- the already low numbers are not a plateau. There's some chance that I will be in complete remission after the first transplant, and if not, it looks likely that it will be very good partial remission. The second transplant, hopefully, will get us the rest of the way.

Lastly, they have told me that I can keep my Cook catheter in place, which is good because it's two less painful procedures that I need to endure (removal, which is done without any sedation or local anesthetic, and installation of a new one upon return). I just need to flush it daily, which I've learned to do.

This is a horrible disease, and the treatment (particularly the one I chose) is not very pleasant -- but things are going as well as we could have hoped. I am absolutely confident that all of your support, prayers, positive vibes and thoughts have an impact on this -- thank you all very, very much.

More news tomorrow.