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!

Day 212--Wow! That Went Fast!

Torger's second hundred days post-transplant just zipped by. The first hundred days, with the long hotel stay and constant appointments, seemed so monumental, but the second hundred days passed while the calendar largely just sat in my desk drawer unmarked. Either we've really started to slack, or life is getting much closer to normal. We go down to Denver tomorrow for another bone marrow biopsy to check for any signs of the leukemia returning, and then we're hoping Torger won't have to have another biopsy for six months to even a year. He's gotten pretty sly about wheedling Dr. Tse into giving him what he wants. Each visit, Torger plots to ask for something...scaling back the infusions, reducing the number of weekly blood draws, etc. And usually, he's pretty successful at getting his way. Two weeks ago, we were able to stop his magnesium and saline infusions entirely, which is a huge step. That process has been a huge pain in the rear for both of us...mostly for Torger, who had to haul the pump and saline bag around the house for three hours a day. He still has the Hickman catheter in his chest, so I'm still flushing his lines with heparin every night, but we think they'll even be taking the catheter out soon. Torger's been a good sport, but he admits it's hard to sleep with the catheter's three lines and associated hardware all poking him in the chest. He also persuaded Dr. Tse to take him off his blood pressure medication, which they'd put him on because of all the other drugs he's taking. Torger's never needed blood pressure medication before, and Dr. Tse agreed that there's no point in keeping him on it now. In fact, they're so NOT worried about Torger's cholesterol that they've instructed him to drink whole milk instead of skim and to eat at least a couple of eggs a day! Apparently, his body needs protein and fats right now, and since he's still struggling to keep his weight up, he gets to eat all the ice cream he wants these days. Not too bad, eh?

One Year Down!

Yesterday marked exactly a year since our local doctor put us in an ambulance and sent us down to Denver because of Torger's astonishingly high white cell count. That was a terrible day, and not exactly something we want to spend a lot of time reminiscing about...but this is an important anniversary, so I'm going to reminisce just a little.

Here's where we started on May 12, 2009: Torger had been feeling sick for weeks with what felt like a flu bug that he just couldn't shake. I was actually getting irritated with him because he seemed to be napping constantly and not keeping up with things that needed doing. He was apologetic, but just kept saying that he had no energy and needed to get over his darn cold. Then he started bruising from just lying in bed. An urgent-care doctor had put him on antibiotics and sent us home, telling us to give them time to work. When I called the doctor back mid-week because the drugs didn't seem to be working, he said we just needed to give them time and scheduled us in for an appointment a week later. We spent an awful weekend during which Torger couldn't eat and spent all day and night rocking on the couch or dragging himself from one end of the house to the other because he was afraid to go to sleep. He resisted going back to the doctor, still thinking this was just a bug he could fight off if he worked at it. So I tried to go into work on Monday morning, even though I was a wreck, and my boss and friend, John Lincoln, ordered me to go home and drag Torger back to the doctor. So I did (Torger didn't require much convincing by that point). We saw another urgent-care doctor this time, Dr. Rubright, who took one look at Torger and ordered some blood tests. Then he told us to go home and wait for his call. He called an hour later and told us to get over to the hospital. Torger was feeling hungry and wanted to sleep, so I asked if we needed to go right away...and Dr. Rubright got stern and essentially said to get our butts over there. We went to the local hospital, and they had an ambulance ready to take us to Denver. While we were waiting for the transfer orders to go through, we sat in a room on the oncology floor. Beverly, the nurse on duty, was the first to intimate to us that Torger probably had leukemia...she hugged us both and told us we were going to need to gear up for a fight. Then an oncologist came in and explained that Torger's white cell count was too high to treat in Fort Collins, so they had the ambulance ready to take us to Denver and there was a room waiting for him at University Hospital. Somewhere in there I called or e-mailed my mom to let her know and to make sure she could feed our cat, who was still alive at the time.

The ambulance ride was kind of fun. Torger was alert and cracking jokes the whole time, to the astonishment of the EMTs. They showed us the different tools they had in the back of the vehicle for dealing with different kinds of crises...and they got us to Denver in record time.

We were taken immediately up to the 11th floor Bone Marrow Transplant unit. Dr. Eamon Burge, a resident, met us and explained that, even though it was late in the day by that point, he'd persuaded the apheresis team to stay and treat Torger because his white count was at such dangerous levels. Everyone seemed astonished that Torger was even conscious, much less trying to talk to people. They put a port in Torger's neck and Jessica Jones, the apheresis tech, spent most of the night with us, operating the machine that essentially sucked the excess white cells out of Torger's body. She showed me the bags of cells that she was pulling out, and they looked like pureed tomatoes...they were that thick. When your blood fills up with such a surplus of thick, pulpy cells, your heart and arteries can't pump it any more. In a short amount of time, if untreated, the pressure exerted on his optic nerve would have blinded him, but that wouldn't have been much of a problem because he would have been dead anyway.

They had to give him a couple of pheresis treatments before his cell levels were under control, but over the next couple of days, the doctors on duty--Dr. Burge and a post-doctoral fellow, Dr. Tut--confirmed with us that their biopsies showed Torger had leukemia. Dr. Tut sat down with me while Torger was having his catheter lines put in and again warned me that we were in for a long and painful treatment process that would definitely involve chemotherapy and might require a bone marrow transplant. Dr. Tse was out of town at a meeting at this point, so we didn't meet him for several more days...and we wouldn't learn for sometime that Torger was his first transplant patient since he'd arrived at University Hospital.

Torger stayed in the hospital for nearly a month after first round, going through his initial cycle of chemotherapy. Garry and Carolyn gave him binoculars so he could enjoy the view from his 11th floor window...he watched the entire Colfax marathon that way last Memorial Day. The rest of the summer went by in a blur of doctor's appointments and trips up and down I-25. By fall, we were ready for the transplant and everything it entailed.

And now, here we are looking back from the vantage point of a whole year gone by. The last month at our house has been pretty germy. Torger had some spots on his lungs that were tested and re-tested and don't seem to have been an issue. His cough cleared up, and then I got it...and a little bit of strep in the bargain. Then Torger caught a full-fledged cold...the first real test of his baby immune system (aided, of course, by a continual dose of antivirals and antibacterials). It was hard to watch him dealing with it last week. It was clear that his entire body was working on fighting the cold virus, and he was paler and sicker looking than any cold sufferer I've ever seen. But he got through!! He still has some sniffles, but he got through!! He noted that even two months ago, he doesn't think he could have beaten a bug like this one, and now he can.

That's what this whole year has been about. A year from now, looking back, this will all seem so strange and remote. Torger will sneeze, and it won't wake me in the middle of the night in a panic. He'll get a scrape on his leg, and we won't race for the topical ointments. We won't be agonizing over every pound he loses wondering why. We're not there yet, but we will be.

Thanks to all of you who have stayed connected (or in some wonderful cases, reconnected) through this blog and other means this past year. We're really, really grateful for the friendship and continued support, and we look forward to a time when we can do a lot more giving and a lot less receiving. Just another year can make all the difference.