Day 248--Still Dealing With Weight

One of the real lessons I took away from our time in the hotel was how much energy I expend every day at home worrying about what I'm going to wear. Sometime in my first week of telecommuting, I had to call my stay-at-home-mom sister and ask, "How do you not just wear the same thing every day?" Because that's pretty much what I wanted to do...jeans and a shirt. And when you're telecommuting, who's going to know (or care) if it's actually a clean shirt or one you just plucked off the top of the hamper? You can't get away with that sort of trickery when you have to get up in the morning and go be in an office full of people who aren't your husband. You actually have to iron and match things and generally avoid the kind of impression you make when wearing stains from last night's spaghetti at 9 a.m.

Of course, none of this is a concern for Torger these days. While he generally likes to put on a clean shirt and clean pair of blue Sears pants, he pretty much wakes up every morning knowing that he will be donning a pair of blue Sears pants and whatever shirt rises to the top of the drawer. But when he does so now, he does it with a persistent little nag from me almost daily: "When are you gonna let me buy you some pants?" The truth is, he's lost so much weight that nothing fits him any more. He's punched new notches in his belt and he still generally has to walk with one hand free for hitching up his trousers. He looks like a 53-year-old wannabe rapper.

I've been setting aside a little money each month to take him clothes shopping, but he just won't do it. He says he's waiting for his weight to stabilize, and that is an issue. Even with all the ice cream and butter I've been feeding him, he's not gaining...to the point where I noticed this week that I can see the outline of the catheter tube poking out in his neck! (Be warned: I'm going to take a picture of this for the blog.) He doesn't look malnourished...just thin.

But I know that's not the entire reason he's refusing to buy new pants. As Jon explained in our recent phone conversation, there's a certain type of guy who feels more manly wearing old clothes. That would be Torger. Spending money on fashion is not his idea of fun. He will never "manscape." He's basically been dressing like a grandpa since he was a kid, and it suits him. When he gets creative, fashion-wise, it's by doing something like wearing a windbreaker under his suit jacket (which, remarkably, looks pretty good on him). He has his own, distinct aesthetic. But I still argue that adding in a new pair of blue Sears pants on occasion is just a matter of practicality, and it's nice to be able to walk around the block without flashing the neighbors. I'm not going to give up this fight.

Day 241--Tired. So Tired.

After not having socialized a whole lot for the past year, we've suddenly had a lot of activity these past couple of weeks, and it's really been a lot of fun. Friends Cathy, Kip, and little Sarah were in town and we were able to get together a few times, which, among other things, gave Torger a chance to show Sarah how to explode caps on the sidewalk by hitting them with a rock. My high-school pal Eric came through Fort Collins long enough to have an early breakfast two Saturdays ago, then our 14-year-old niece Claire visited for almost two weeks. (She stayed with Mom and Rich, but we claimed as much of her time as we could wrangle...we'd keep her all summer if we could! She's such a great girl and so easy to have around. Listening to her and Torger wisecrack through a cheesey horror movie last night was really entertaining.) But after all this activity (not to mention a fairly hectic time at work), we're both beat. I just need a nap, but Torger still doesn't have a lot of stamina, so he can't go and go the way he always has in the past. We talked about this with his dad, Jon, the other night, and Jon made a good point: After an illness of this magnitude, Torger might not bounce back physically to his actual age of 53, even as he gets well. The illness takes a toll, so he might feel physically about five years older than he is. That makes sense to both of us. On the other hand, Torger's always been youthful for his age, so maybe he's actually just now feeling exactly the way a 53 year old normally would. Either way, he's kinda pooped, so we're going to take it easy and try to have a quiet week or two.

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!

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!

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.

Day 216--Another Week, Another Hole in the Hip Bone

Torger had his latest bone biopsy on Friday. He lies flat on his stomach, and Dr. Tse bores into his bone to extract a big tube of blood and what looks exactly like a core sample from his marrow. My job is to sit at Torger's head holding a bucket because he's always afraid he's going to throw up. He never does, but he always feels like he could...actually, he usually jokes around with Dr. Tse and the nurse through the whole procedure. Torger is very good about demanding the blue liquid morphine he needs to get through it, although he has yet to convince them to give him "seconds." (Being Torger, he'll never quit trying.) This latest drill wasn't as bad as some of them have been in the past, but it's never a fun process, and Torg is usually sore and a little cranky for several days afterward. We won't find out the results for several days yet, but we're hoping everything is continuing to go well. The big risk right now is that the leukemia could come back, and this is where any signs of that would show up. Generally, Torger feels pretty good these days, although he's had more GVHD (graft vs. host disease) since going off the immunosuppressants. He's got a rash around both ankles that is somewhat more severe than the GVHD he's had on his skin before...but still not bad. Dr. Tse said it was just what he wanted to see, and he'd only get concerned if we see it on more than 25% of Torger's body. He also thinks that Torger might have some GVHD in his mouth, which--along with some peripheral neuropathy--would explain the trouble he has tasting food. He thought Torger's lungs still sounded a little funky, so he gave him a couple of inhalers to start using regularly, and they already seem to be helping. So now we're just waiting for biopsy results and hoping they're clear so that he won't have to get drilled for another six months!