Saturday, May 30, 2009

Day 228--Another Reason to Stay Up Late

Torger has really appreciated having the routine of his weekly radio show with Randy to give some structure to his week and give him something to work on and plan for when he isn't up to anything else. So if you're up between 9-11 on a Saturday night, give 'em a listen at KRFC 88.9 (type in KRFC online and you can listen to them live via the comfort of your own computer from wherever you are on the planet). They play every type of music ever recorded...much of it bad, but much of it quite the opposite of bad. Each show has a theme. Tonight will be a little different from usual because their friend, Kip Williams, is visiting from out of town and will be guest hosting with them. Kip is bringing humorous music...so who knows what to expect. The show is always a little hard to predict since none of them really know what the others will be playing.

Now that we don't have as many daily milestones to watch for, I feel a little funny about listing the post-transplant day at the top of every blog post. But in various doctors' appointments, we still often have to tell them what day Torger's on, so it helps me to keep track. (I'm assuming we stop when we hit a year and start over again, but who knows?) They keep careful watch during the first two years post-transplant, even though the number of weekly appointments has diminished. Torger still goes in to have his blood drawn once a week and sees either Dr. Tse or Dr. Romero here in Fort Collins every couple of weeks. But except when something unusual is going on, like last month's cold, that's about all our medical routine is reduced to now. So we're trying to use the extra time to work on getting to our new "normal" here at home. Life in the hotel and hospital forced us to examine some of our routines, and we discovered we're kinda lazy! So we're making little adjustments...trying to exercise more, reading magazines and newspapers when they come in instead of letting them pile up, eating dinner at the table instead of sprawled around the living room, and actually scheduling things we want to do instead of just planning to get around to them. (In the words of my dear friend, Coleman: "If it's not on the calendar, it doesn't happen!") I think we're being subconciously influenced by all the Dear Abby columns I've read to Torger in the last year. When he was in the hospital, we got in the habit of getting the daily newspaper so I could read him his horoscope (against his will) and Dear Abby (which we both like...probably because it often makes us feel better about ourselves). We've continued this practice over the months, and now it is like I have a little advice columnist living in my head encouraging me to behave. We'll see how long it lasts!

Tuesday, May 26, 2009

And a Postscript for Today: Life Is Short and Wonderful...Never Take It for Granted

Remembering Marine Sergeant Nick Walsh--son of our friends Jerry and Maggie--who we lost in Fallujah two years ago today. This is Nick on the beach with his baby son, Tanner.

Life isn't easy, and it's often sad. But when push comes to shove, it beats the hell out of the alternative. So enjoy the sun, eat something fatty, breathe deeply, and give someone (preferably a person you know) a big, sloppy kiss. Everything can change in an instant, but the good stuff sticks with you through it all.

Day 224--Leukemia No More!

Dr. Tse just sent us the initial results from Torger's most recent bone marrow biopsy. There are no signs of leukemia, and all the previous genetic markers indicating Torger's predisposition toward leukemia are gone. This is just fantastic news. I'm posting the chart he sent showing the progress in terms of leukemia cells since his diagnosis a year ago. As recently as January, some leukemia cells were still evident, which is why they want to see Torger have some Graft Versus Host Disease...the GVHD indicates that the donor's healthy cells are really getting in there and cleaning the bad stuff out of his system. To interpret the chart, AML indicates the leukemia cells in Torger's system...100% AML in the positive column would be very, very bad. Zero percent in the positive column is just wonderful. You can see the impact of the chemotherapy, which put Torger into remission...and you can also see the bad cells trying to re-emerge right before the transplant in October.

Even though we know the disease can still come back, this is a very big, positive sign.
Click on the image to enlarge it and make it readable...it's quite interesting!

Sunday, May 24, 2009

Day 222--Comics Interruptus

After Torger's first chemo treatment last year, before he got too worn down, he spent a lot of time trying to organize the stuff in his studio because he was worried about me having to deal with it all if he died. Now, Torger still has a lot of stuff, but he really purged quite a bit at that time. He recycled stacks of papers and old magazines, gave away boxes of books, threw out a bunch of his old work that he didn't want to outlast him, etc. We ordered a set of sturdy plastic comic-book boxes to better store his much-loved collection, and actually made a will to dictate who would get what if he didn't make it. Then shortly after that, the chemo started to take its toll and he got too weak to do anything more, so his room has been sitting in that half-organized/half-chaotic-mess state for the past year. When we did our big dust purge earlier this year, we just tried to get the surfaces clean in that room and agreed he'd have to stay out of it until aspergillus was no longer as much of a concern. Well, even though he still can't be around dirt and soil and many other things, dust isn't as much of a worry now, so this weekend he started back on his room. He didn't plan to...he'd just started looking at some old comics, then started pushing a few boxes around, and then it snowballed from there. As he said, "It was all very organic." It's striking both of us as really weird to be picking up again on a project that's been sitting, untouched, for the past year, waiting to see if he would live. (He did!) I was planning to clean out our closet this weekend, but I've pretty much just been hanging out and watching him. It's exhausting! And there's still an awful lot of dust lurking there below the surfaces, so he's got to pace himself. With most activities these days, he's good for about two hours. He can do his radio show with Randy on Saturday nights, but after two hours, he's done. He can have dinner with our relatives, but after two hours, he poops out. So this project could continue for much of the summer, in two hour chunks. Which, of course, is just fine by me.