Day 16--All Good News

I apologize for not posting this past week, but I'm pleased to report that it's because of Torger's whirlwind engraftment! (Torger says there's something about telling jokes, having a reason to live, and having a wife who really loves you and does stuff for you that seems to help. I'd add a smiley face icon here to accentuate this point, but I don't know how to do it in this blog program.) He is now fully moved in with me at the hotel, and by all accounts, he is doing remarkably well post-transplant. His nurse coordinator even told us that when they called her to tell her Torger was being released from the hospital, her response was, "Who?!? You're kidding!" Another nurse told him she'd never seen a patient get through the initial transplant process so quickly and smoothly. He's still very sick and far from living a normal life, but Dr. Myint, who heads the CU BMT unit, said, "You have engrafted beautifully." Fewer than 2% of patients get through the hospitalization portion of the recovery process without even a fever, but Torger was in that 2%. He's had a rash from graft vs. host disease on his leg, arm, and face, but it has remained at level 1, which is beneficial. He had difficulty walking all weekend because of the pain in his legs, which the doctor says is from the new, healthy donor cells trying to escape from his bones. And eating continued to be a problem for Torger until just the last day or so. But his cell counts were high enough that yesterday they released him to my care. We're required to live within 20 minutes of the hospital for the 100 days after transplant, so we're ensconced in a hotel 5 minutes away where Torger has his own bedroom and bathroom, per the doctor's recommendations. We'll have doctors appointments at least twice a week, and a home healthcare nurse coming in to the hotel daily. But it's already been a huge improvement for Torger, who was going a little stir crazy in his hospital room. He got scolded earlier this week because he was hanging out in another patient's room visiting--a temptation that's tough to resist when you're all in there for treatment for weeks at a time.

One of the best parts about getting out of the hospital for Torger is being "off the pole." Every patient on the BMT unit (probably anyone being treated for any type of cancer) gets used to being hooked up to a pole getting IVs all day and night. If you want to go to the bathroom, take a shower, sleep, walk, change clothes--anything--you have to work around the pole, which is not exactly a graceful apparatus, especially when it's laden down with eight different bags of chemicals or fluids. So Torger felt a great sense of freedom as soon as he was off the pole, and it got even better when they pulled out the picc line from his chest, which has been in place since May 13. These were connected to the tubes ("lumines," technically) that hung from his arm. He still has the Hickman catheter in his chest, but now he's back down to three tubes instead of six.

We're just starting to establish our routine at the hotel, which is going to be a bit of an adventure. Having read "Eloise" as a kid, I've always thought living in a hotel would be kind of fun, but it actually takes a little getting used to. Finding a hotel with two bedrooms and bathrooms that wasn't just outrageously expensive was a challenge in and of itself, but we were fortunate that the nicest of all the hotels we explored also offered us the best rate. HUGE thanks to my friends Sarah and Coleman, who were here this weekend and got the room organized while I was with Torger at the hospital. The room has a little kitchenette with a fridge, microwave, and a two-burner stovetop, and we brought in a toaster oven and some of my stuff from home (crockpot, rice cooker, pots and pans). I've got to cook Thanksgiving AND Christmas dinners here, so I wanted a toaster oven that was big enough to cook a little turkey breast or a very tiny roast. One of the bedrooms is Torger's, and we've got all his medical supplies, books, and art materials in there. When he walked in the door for the first time yesterday, he headed straight for his bed, fell into it, and said, "This is heaven." The other room is mine, and I've also got my work office in here. Adam from the office was kind enough to come down and help arrange a nice computer set-up so that I can telecommute for the next three months. I have files and papers strewn about the extra bed in the room, so Torger says it looks pretty much like my office at CSU now! The staff at the hotel have been very welcoming and supportive, even bringing Torger a gift basket of candy and rootbeer when he got in yesterday.

So until the end of January, our address will be: Cara Neth and Torger Hougen, Room 226, Homewood Suites-Denver International Airport, 4210 Airport Way, Denver, CO 80239.

Day 10--An Upward Trend

Thanks for the daily title, Mom! Torger is definitely on an upward trend, although he's starting to show some signs of graft versus host disease (GVHD). A little GVHD is a good thing, but too much is very dangerous. So the doctors are keeping an eye on things. So far, it's just showing up as a rash on his neck and legs. He also feels like his legs are falling asleep when he walks around, which one of his doctors said is an effect of the engrafting process. Supposedly, the more he can walk and work his legs, the better it will be for the new cells working their way into the bone marrow. So we've been doing laps around the floor as much as we can. My friends Sarah and Coleman are staying with me at the hotel this weekend and helping get it set up for our long-term stay. But the big news at the hospital Friday was a campaign visit by Hillary Clinton. It was a huge event and everybody on the floor seemed excited, but it really made parking even more of a hassle than usual. I think my concerns have become very parochial, but I was much more interested in getting Torger his Jello in a timely fashion.

Day 9--Towin' the Line

With apologies to my dear friend Lauren, Day 9 wasn't quite "divine"--but it sure beat the day before! The doctors told us that the new cells would be intensively engrafting between Days 9 and 21, and that's what's happening with Torger right now. His cell counts are starting to turn positive, and he's slowly but surely feeling a little bit better. His bones are still aching really badly, but that's from the new cells working their way in, so it's all part of the process. No more vomiting Thursday--in fact, he was able to get down a full bowl of chicken noodle soup at lunch (Dr. Tse has actually asked that he eat a lot of chicken soup), and he even ate part of a hospital dinner. He's fighting a little cold, but none of the doctors seem as worried about it as Torger is, so we're trying not to obsess over every sniffle. Torger says he's become a little worried about spontaneous human combustion, since so many of the chemicals they're pumping into him are combustible--and he's hot all the time. The nurses and I think he's just having hot flashes. His head hair and facial hair are all pretty much gone now, so he looks like a little egg. We did get a sense Thursday afternoon of why he has such a hard time napping during the day: There's a constant stream of traffic in and out of his room. The doctors, nurses and CNAs (who are all mostly nursing students at University Hospital) come in several times an hour to check his vital signs, change out infusion bags on his pole, give him medications, or check his general well-being. But then yesterday, Gail the art therapist came by for her weekly art talk, one of the off-duty CNAs came by to show Torger pictures of the pumpkins she's been carving, and CNA Brian, who was actually working on another part of the floor, came by to discuss the grade on his latest essay for his English comp class. Torger enjoys the social interaction, but he perks up so much with each visit that it's hard for him to quiet back down and take a nap! But even with the achy bones and fighting a cold, this was a good day overall. We feel like he's really making progress.

Day 8--Not So Great

Torger felt good Tuesday night and did some drawing, but by Wednesday morning, he was really feeling tired and wrung out. He threw up the Ensure he tried to get down (which may have been a reaction to the Ensure as much as a signal of an upset stomach). His potassium and magnesium have been low, so he's been getting extra doses of those, and his bones are really aching to the point where he's not altogether comfortable lying down or sitting up. He slept on and off throughout the day, but he never really perked up. Fortunately, Jan was his night nurse. He's really comfortable with her--she's smart and funny and takes no crap!

Day 7 and Didn't Go To Heaven

That was the motto for Tuesday ("Day 7-Didn't Go to Heaven"), and it seems to have worked. Despite throwing up in the morning and continued digestion problems, Torger had a better day than the one before. We're thinking that the methatrexate he gets on Days 1, 3, 6, and 11 contributed to him getting really sick on Monday, and the problems he's having with his sinuses and digestion are just part of going through the transplant process. But fortunately, he's now finished three of the four doses of methatrexate, and getting all four doses in is very important for his recovery. (If a patient gets too sick, with mouth sores etc., they have to stop the doses, which then can make the person more vulnerable to graft versus host disease later on.) I was able to get him to eat a little more, thanks to my sisters' reminders that they give their kids bananas when their stomachs are upset. I got some bananas, washed them with hospital soap and peeled them--Torger isn't allowed to touch the peels--and he ate two of them! He was also able to keep down two pieces of Wonder Bread, which I don't think he's had since he was a toddler. The infectious disease specialist came by in the afternoon to check out the lesion on Torger's tongue, and she thought his constant mouth-rinsing was really helping. Dr. Tse also popped in, and he said Torger was doing much better than he'd expected--which was a fantastic thing to hear, given his poor prognosis before the transplant. By the evening, Torger was feeling a lot better. His bones are aching from the marrow being killed off and replaced, but a little Tylenol helped with that. So all in all, not a bad day...and probably the first time I've felt really, wholeheartedly that he was going to make it through this.

Day 6--Not So Fun

Today was rough. As today's nurse Sarah said, they pretty much ran cultures of everything. Torger's having intestinal problems and is starting to get a lesion on his tongue, despite his constant mouth rinsing. He got a bloody nose mid-day, so they did a catscan of his sinuses, and just when he was starting to feel a little bit better, they came in with the largest hypodermic needle we'd ever seen and drew a full ounce of blood out with it. Then they took two more hypos of blood, just to be on the safe side. After that, Torger felt really weak all day and slept a lot. He had five or six bags of fluid and medication hanging from his pole all day, along with all the pills they were giving him orally and one shot that he's been getting daily. They switched him to a new antifungal drug as part of trying to keep all of his symptoms under control. Eating is becoming a problem because nothing tastes or feels good to him. We laughed this summer when Ilsa sent a note reminding us that at least hospitals have excellent Jello. Little did we know! Our hospital uses off-brands of a lot of things, so instead of Rice Krispies they serve "Rice Crunchin's" and instead of actual Jello, they serve "Gel Treat." Now, I'm not a huge Jello fan myself, but I can tell just by looking that Gel Treat is no Jello. So I went out and got Torger some actual store-bought Jello, and he was able to eat one of those and a small container of applesauce. But that was about it for the whole day. The nurse was going to bring in some Ensure before he falls asleep tonight to see if he can get that down. We're hoping tomorrow will be a little easier, but we're prepared for it to stay rough for awhile.

Day 5 And Still Alive!

This was Torger's slogan for Sunday ("Day 5 and still alive!"). Day 5 is typically when transplant patients really start to feel sick, and that seems to be true for Torger. His energy levels really crashed, and he had to get a platelet transfusion. Platelets--the part of your blood that helps your body heal cuts and prevent bruises--are the first things to go post-transplant, and the last to come back. (Shout out to our sister and bro-in-law, Marcy and Mark, who are long-time platelet donors. These are a precious commodity...there was one day this summer when the hospital actually ran out. If you can, donate today!)

Torger's dad, Jon Hougen, has been doing some reading and provided a nice, succinct summary of what is happening in Torger's body right now. This is pretty much as the doctors have explained it to us: "The transplanted (healthy and aggressive) white blood cells attack and kill all of Torger's remaining (few and weakened) white blood cells, thus ridding his body of every last cancerous blood cell with an efficiency that chemo, etc. can't possibly match. Graft versus host disease is when the transplanted white blood cells go on to attack some of the other kinds of cells in Torger's body, thus causing great damage to the host (Torger)." Right now, we're still in the "graft vs. leukemia" stage, where the donor's cells are wiping out Torger's blood so they can engraft and fill his system up with new, healthy blood. But graft vs. host disease will be a big worry for us over the next several months.