Day 4--Red Spots and Puzzle Art

It was a relatively quiet day. Torger got some platelets in the afternoon (thank you, anonymous platelet donor!) and about a half hour afterward some red spots appeared on his forehead, ears, and neck. This is the kind of symptom they watch for carefully, so they retested the platelets remaining in the bag to make sure there was no problem. There wasn't. They gave him some Benadryl and the spots settled down. Dr. Tse stopped in just to check on things and told us a story about a former patient who laid in bed for three days then got pneumonia and died. We hear a lot of these cautionary tales, and they're actually very helpful because, while it might be easy to forget a simple instruction about spending too much time on your back in bed, it's really hard to forget the story about the athletic guy who died after spending three days lying around.

We watched an old "Jack Benny" episode and worked on the latest 1,000 piece puzzle in the solarium. We did start to wonder about the art that's on a lot of these puzzles. Does someone paint the picture first, or does the puzzle company say, "Give us kind of a lame painting so we can chop it up into a puzzle"?

The First Five Days

I had a little computer trouble, so I haven't been able to get my entries posted 'til now. So here's a rundown on what's happened over the past 5 days.

DAY 0

This was the day of Torger's transplant, which turned out to be fairly anticlimactic. We were a little anxious all morning. I got to the hospital about 6 a.m., and Torger took a shower and had a microwave pizza for breakfast. But once the procedure started, it was pretty uneventful. As this picture shows, getting a transplant is basically like getting a blood transfusion, but in this case, it's a transfusion of 170 cc's of new stem cells. (Thank you, science!) Torger looks a little pained in the picture, but actually, I just caught him in mid-sentence...he was chatting with me and the nurses and cracking jokes throughout the procedure. We started the transplant a little after 1 p.m., and it was complete by 2:05.

One of our favorite nurses, Kelly, and one of the charge nurses, Anslie, managed the whole procedure. The hospital always sounds a chorus of Brahms' Lullabye when a new baby is born, so we all speculated on what song they should play when someone gets a transplant. "I've Got You Under My Skin"? (During one of Torger's first procedures at the hospital, the surgical team put on a CD of Queen's greatest hits, and the first song that came on: "Another One Bites the Dust." He thought it was hilarious, but apparently everyone else in the operating room dove to shut off the music!)

DAY 1

The first 24 hours after transplant passed smoothly. Dr. Tse told Torger he wants him to rinse his mouth with peroxide or saline solution every 15 minutes while he's awake, to help prevent mouth sores. Mouth sores in leukemia patients are extremely painful and debilitating, and they can slow up the post-transplant treatment process. Having to break the day up into 15 minute increments actually helps the time to pass a little more quickly, and Torger feels like all the drugs he's on have left him with an attention span of only about that long anyway. He is officially sick of hospital food, and as outstanding as University Hospital is in every other way, the food is really not good. So we've stocked the floor refrigerator with things he's allowed to eat--essentially, processed frozen crap. Burritos. Pizza. Freeze-and-heat sandwiches. I did find some good little veggie and rice frozen meals that he likes, so that helps. Eating is very important for transplant patients, and it can be hard because the chemo and drugs interfere with taste. So it is part of my job to find things he'll eat and to keep him fed.

Day 2

Torger is on the following drugs right now, although this changes daily:

• Levaquin, 750 mg
• Acyclovir, 800 mg twice a day
• Posaconazole, 200 mg three times a day (anti-fungal)
• Nexium, 40 mg
• Actigall, 300 mg three times a day
• Methotrexate, 18 mg by IV on days 1, 3, 6, and 11 (helps to minimize graft vs. host disease)
• Leucovorin, 5 mg IV every 12 hours x2
• Tacrolimus, 2.3 mg. IV continuously
• Ursodiol (to help prevent gallstones)

So far, the only problem he's had are what he calls "chemical dreams"--really frightening, vivid nightmares. Apparently, this is a fairly common side-effect from the Tacrolimus, but they got so bad last night that he didn't want to go to sleep and was forcing himself to stay awake, a situation he compared to "Invasion of the Body Snatchers." His doctors were concerned enough about his lack of sleep that they prescribed an anti-psychotic medication to counter the effects of the Tacrolimus, and that seems to be helping.

Otherwise, boredom is Torger's biggest challenge. Gail, the art therapist for the oncology floor, visited today, and she and Torger always have good art talks. He's been drawing, but she left some watercolors and paper for him to play around with (and teach me a little technique). We played Scrabble in the afternoon and watched a little TV, then talked until he got tired.

Day 3

Torger wanted me to mention on here how important it is for someone in his position to have a trusted caregiver--whether a spouse, family member, or friend. The nurses and CNAs on the 11th floor BMT (bone marrow transplant) unit at University Hospital are the best. Really warm, wonderful people. But they have a job to do, and it's really important for transplant patients to have someone worrying about their less medical needs...food, comfort, sanity. This is a long, kind of boring process, with a lot of waiting and just sitting around in a very confined space, hoping that the new cells do their job. Fortunately, Torger has always been good at entertaining himself, so he's established a lot of daily routines just to get himself out of bed and moving around. He does morning exercises in his room, reads, draws, and watches life on Colfax out his window with his binoculars. Two of his buddies on the staff, Jerry and Brian, have brought in movies for him to watch, and he has a supply of his own, of course, including one about a man-eating brain ("The Brain") and the "Thunderbirds" Supermarionation series from the '60s. We all keep a communal puzzle going in the solarium down the hall, so he and I sometimes work on that, and we've been playing a lot of Scrabble. We've got his room all decorated for Halloween, and he's got an Obama sign on his door. And of course, he has to do his peroxide mouth rinse every 15 minutes! It's actually kind of pleasant to feel like our biggest challenge is just finding ways to fill his days and keep him active. Mostly, we're just grateful he's not feeling sicker. He's easily tired, but otherwise, he's feeling pretty good so far.