I can hardly believe it's almost been a week since I posted. The days really seem to blur lately, with weakness, bone pain, and skin discomfort keeping the pace pretty slow. Despite the slow pace, I can recognize some improvement - my nausea has certainly slowed and I think my energy between rests is a bit better than a few days ago.
As an example, I made a couple of first "limited public" appearances. Saturday Tasha and I drank lemonades at Starbucks and then I took Mom to lunch at Earl's on her birthday Sunday. It was a beautiful day and we sat on the deck and it almost felt like normal. Later that night, after a long sleep, we went to 'the boys house' for a BBQ birthday or "happy day" as Jack and Davis called it. I watched the boys entertain "Nana" for a while and was happy to go home tired for a good reason!
My visits to the hospital Monday and yesterday were fairly informative. My blood counts continue to be steady, and the doctors continue to adjust my 2 anti-rejection (immunesuppressive) medication doses based on the levels in my blood. After bloodwork, a chest X-ray, fluids and overall assessment yesterday, Dr. Brown outlined a few considerations for the coming months. It seems that I will have to be on tacrolimus, one of the anti-rejection drugs, for longer than I had expected. If I had a 100% sibling match, I would only have be on it for 60 days, but Brandon is no longer a 100% match because of transplant #2, so instead I will be on it for 180 days before they begin to taper it.
As part of the protocol for the trial, patients receive a chemotherapy drug in their spinal fluid each month for 5 months starting at 3 months post-transplant. Years ago, doctors realized that some ALL patients can end up with CNS (Central Nervous System) disease, stemming from the leukemia, and that by adding some treatments directly into the spinal fluid (intrathecal chemo), this risk was mitigated significantly. Prior to my first transplant and following my second, I received a number of these treatments. Dr. Brown is proposing that we skip the planned chemo injections and has discussed this with both the New York and Calgary teams. He again needs my decision on the matter, and once again it is a choice of which risk to take. The risk of CNS disease is higher by not proceeding with the treatments, but the potential side effects of the treatments (various neurological effects including paralysis) are daunting as well. So we'll see what gamble I'll take.
Saturday is Day +30, so tomorrow I'll have a bone marrow aspirate at the hospital. I'll have 3 more of these in the coming year, and this will show the doctors more details about the status of my marrow. I've had so many I imagine my bone looks like Swiss cheese! Regardless, it's very exciting to reach Day +30 and be so well, and I even get to drop 6 pills that I currently take each day, so that should lighten my daily "pill-load"! I may even be able to expand my "limited public" appearances in the coming weeks...
I hope all of you have a light and fun weekend, and enjoy whatever weather pattern visits you. Of course, I appreciate all the support, prayers and energy you continue to generously send me.
Cheers
