Day 77--I Got A Grip

Sorry about the anxious post earlier today. As usual, we talked it over and Torger put everything in perspective and helped me feel that everything will be fine. "Dr. Torger" basically diagnosed me with PTSD--post-transplant stress disorder--and reminded me that Dr. Tse won't actually LET us go home until he's confident that Torger is stable. He reminded me how much I've missed being at the office, and he also reminded me that we have a phone at home and only live a half mile from where I work, so it's not like I won't be able to rush home and help if there's a problem. Besides which, he's been in "patient mode" for more than half of 2008, and he's really looking forward to getting home and having a little of his life back. While I can work at the hotel, which has helped keep me sane, he's pretty constrained here and will eventually start to wither away if he can't get back to being a functioning, independent adult. My earlier post had a lot of "I's" in it, but I'm only half of the team who's been keeping this whole ship afloat. Torger's been handling the tough stuff, and if he's ready to handle the next stage, I am, too. The transition will be tough at first, if only because I'll be constantly worried for the first few days, but we're going through all this so we can get back to a normal life, not stay in a constant state of care-giving and -receiving. It's important for me to remember that we have all of medical science working to keep him alive, and he's probably not going to quit breathing now if I leave the house for a couple of hours.

Day 77

I've been dealing with a weird wave of sadness and fear today, when I should be happy that we're now only a few weeks away from going home. Ever since Torger got out of the hospital, I haven't been able to be apart from him for more than 15 minutes or so, which means we're together almost constantly 24-7. And I realize that I'm a little terrified at the thought of going back to a semi-normal life, where I'm at work all day and he's home by himself. What if something happens and I'm not there??? For some reason, almost all the people we've met or known who are dealing with a transplant are retired, so this isn't an issue for them. When they go home, it's a pretty smooth transition from the hotel routine to a similar routine in their own house. Even though I've been working while we've been here, our daily routine completely revolves around Torger's post-transplant care. I wake up early so I can get work done before he wakes up, because when he gets up I need to make sure he eats and gets his morning meds down without getting sick. I squeeze in work around clinic and lab appointments, and we do any errands like grocery shopping or the pharmacy or the bank during the day because we have to go together...and it's tough on him to be out in the cold at night. I make him lunch and make sure he has his 2 o'clock meds and then his magnesium infusion, which takes three hours. I'm constantly on the phone with the insurance company, or with the hospital trying to get things scheduled, or with the pharmacy that handles his magnesium delivery. Then I squeeze in more work while he rests in the afternoon. Sometimes he gets on the computer and surfs the net, and because we're in this small space he can chat at me about everything he's reading and I can hear him while I'm cooking or filing or whatever. I make him eat something for dinner, and sometimes try and get us both to get a little exercise before his nighttime meds...and frequently find myself on the computer at 11 o'clock at night finishing up what I didn't get done during the day. I feel like I've more or less been able to hold it all together as well as I can, but it helps that through it all, I always know what's going on with him almost every second. I have to remind myself that tomorrow we'll be celebrating 24 years together since our first date, and for nearly that entire time, Torger hasn't needed a babysitter. He's very capable and self-sufficient. But his recovery is still so fragile. I've always understood how important it was for his health that I be here as a full-time caregiver during the 100 days, but I'm only just now realizing how important it's been for ME. The thought of going home is really scary and I don't feel ready.

Day 76 Again

I forgot to mention in my overly lengthy post just now...as of yesterday, we're more than 3/4ths of the way there! Day 100, here we come.

Day 76--No Quick Fix

Another day, another visit to the Bone Marrow Infusion Clinic. We go in to the BIC every other day, and they typically draw three vials of blood so we can monitor all of Torger's levels...red and white cell counts, platelets, neutrophils, potassium, magnesium, and a lot of things I'd never heard of before he got sick, like bilirubin. (I found this definition of bilirubin on Wikipedia: "Bilirubin, formerly referred to as hematoidin, is the yellow breakdown product of normal heme catabolism. Heme is formed from hemoglobin, a principle component of red blood cells. Bilirubin is excreted in bile, and its levels are elevated in certain diseases.It is responsible for the yellow colour of bruises and the yellow discolouration in jaundice." This is pretty much how Dr. Tse described it to us. It's a waste product, essentially, and we have to watch it carefully because it's an indication of how well Torger's liver is functioning.) After they draw the blood, we wait in the BIC for at least an hour until the first set of results come back, just in case he needs an infusion or something is really off. During our BIC visits, the lab checks whether Torger's Tacrolimus (immunosuppressant level) is elevated...which it was for several days last week, although by Saturday it was back in the normal range. The BIC nurses also change the dressing on the catheter in Torger's chest once a week and make sure we have the magnesium supplies and equipment to do his infusions at the hotel. Often, like today, we go in for our regular BIC appointment and the nurses pass on orders for other tests Torger needs that day (today it was a chest X-ray). So really, the BIC is kind of the center of our post-transplant care, even though we have our regular Wednesday visits with Dr. Tse in the Cancer Center. The BIC nurses see Torger a lot more often, and they seem to keep a pretty close eye on their patients. On Tuesdays, the entire BMT team--doctors, nurses, social workers, administrators--meet to discuss every current patient. So when we run into staff members we haven't seen in awhile, they always know exactly what's going on with Torger...which never fails to surprise us. While our weekly appointment schedule often seems chaotic to us, it's clear that the entire operation is really a pretty well-oiled machine.

Day 73--Happy Boxing Day!

Also known as St. Stephen's Day, Boxing Day is a holiday celebrated (I think...don't quote me on this) in England, Canada, and Australia, and traditionally considered a day to offer gifts to those less fortunate than you. (Whereas, Christmas is traditionally a day when we give gifts to friends and loved ones.) I have no idea why it's called Boxing Day, but since I didn't get around to posting on Christmas, I felt like I needed to give a little nod to Boxing Day. If you prefer, it's also Kwanzaa, according to our calendar, so you can take your pick. The holiday spirit abounds!

We had about as wonderful a Christmas as we could have imagined under the circumstances, particularly since neither one of us knew last summer whether we'd get to have another Christmas together. This is the tiny fake tree we bought at Target...it looks much bigger in the picture than it actually is. In reality, it looks like just the top of a real Christmas tree if it had been lopped off and put in a pot. But it's perfect for our hotel room. I can honestly say that I've never appreciated Christmas cards more than I have this year. And we had some wonderful gifts from friends and family, including a Liberace Christmas record (with a companion copy burned onto a CD) from Carolyn and Garry. (Not sure how to describe our relationship with C&G..."in-law in-laws"? They're our brother-in-law Mark's folks, so they're family, but also good friends.) Anyway, it turns out, miraculously, that Torger had just been regretting earlier in the week that he didn't own any Liberace Christmas music. The round, red package on the left in the picture was from the hotel staff, and guess what it was? A blanket to replace the one that got stolen from our car! We thought that was really nice. And back in the fall, when we'd bought a few books and videos to enjoy during the 100 days, Torger had sneakily stashed some of them away so I forgot all about them. And they show'd up under the tree from Santa! We had a good Christmas Eve visit from Alex and Brandy, and Mom and Rich came by for a few minutes in the afternoon on Christmas Day to have some hot apple cider and wish us a Merry Christmas. They gave us our copy of the latest family calendar, which they assemble each year with pictures from the year before. Torger features prominently in this year's calendar, and we were both kind of taken aback by one picture of him taken in the late summer, when he looked so much sicker than he does now. (At the time, we thought he looked pretty good.) Later, I made a little roast for the two of us for dinner, with biscuits and mashed potatoes and veggies. Then we went over to the 11th floor at the hospital to drop off some treats for the nurses...peanut butter cookies and some toffee...and a Yachtzee game for the floor rec room, since we wound up with a spare. We saw our favorite CNA Brian, who was wearing an elf hat and told us he'd managed to pass his English class. Hooray! (I wrote about our attempts to help him with this class in one of my earlier posts.) Torger wished the whole staff a Merry Christmas, and they seemed really happy to see him, especially looking so well. We also left a little care package for a couple we've met at the hospital. The husband was diagnosed with multiple myeloma just 10 days after Torger, so we've gotten to know them as we've all been cycling through the BMT floor, lab appointments, and clinic days. Unfortunately, treatment for his illness requires not one but TWO stem cell transplants, and he went back in for his second just a couple of weeks ago. Torger and I just can't imagine going through that agonizing process twice in such a short period. It's another reminder of how lucky we've been through this whole process.

Then we came home, listened to a little Liberace, watched a DVD and went to bed. All in all, a great holiday.

Day 7-0--Only 30 More to Go

Dr. Tse called last night to say that Torger's tacrolimus levels were a little high, even though we've been gradually reducing his dosage. (Tacrolimus is the immunosuppressant.) So we got up this morning and went over to the BIC (BMT Infusion Clinic...our regular hangout) for another test. One of the other doctors is watching Torger's labs while Dr. Tse is in Europe, so we don't get to slack off. That temptation to slack is one of our biggest challenges right now, since Torger's been doing so well. Here we are in Denver, where some of our favorite people live, and where there's lots to do and plenty of tempting restaurants. But Torger tires out quickly, has to wear a mask in public, and his digestion is really sensitive, so things like shopping and museums and eating out aren't any fun for him...they actually make him feel bad. We have gotten the OK to get an occasional piece of pizza out, since it's cooked at such high temperatures. But after a couple of attempts, we haven't even been in a hurry to do that again because all the medicines have interfered with his sense of taste, so pizza seems slimy to him. And the one time we went out to look at a bookstore...when it was slow, during the middle of the day, with Torger fully masked...I got so paranoid about all the people coughing and sneezing around us that we cut it short and went home. This isn't a vacation, even though we're staying in a hotel. It's work. And every time we start to lose focus, hearing one sneeze is about the only reminder we need as to why we have to stay so isolated. So for now, a trip over to the nearby Walgreen's to buy bottled water is a big outing for us. It has made us both aware of how much frantic running around we do in our normal lives. It's actually kind of nice to have a good reason to sit still.

Day 69--No Smell of Pine

OK, that's one of my worst rhymes yet. But it applies...we got a 3-foot tall fake Christmas tree for our hotel room, and it doesn't smell like pine. But it looks very cute. (I'm going to try and take a picture of it to post on here tomorrow, so we'll see how that turns out.) Today, Torger had a CT scan and labwork, then we had our last appointment with Dr. Tse for two weeks because he's going to Europe for the holidays. He squeezed us in for an appointment today, then we'll skip next week and see him the following. We'll still have to come in every other day for labwork, but it will be nice not to have the clinic appointments, which tend to stretch into hours because of all the other tests that get scheduled around those sessions. And the latest good news is in: The recent bone marrow biopsy results came back and Torger's cells are now 98-100% donor cells, which is outstanding. And there are no leukemia cells showing up, which is even better.

Go Rams!

And "Yay!" for CSU for winning the New Mexico Bowl today!

Day 67--Yachtzee!

We're just hanging out tonight playing Yachtzee and listening to "Excursions" on KRFC (the radio show that Torger normally does with his pal Randy). Torger has really been missing the chance to do their annual Christmas show, but Randy's been doing a great job flying solo. So far he's played some Julie Andrews, Claudine Longet, James Brown, and Flaming Lips!

We're having a restful day after a pretty hectic week. On Wednesday, Torger had to have four separate biopsies so they could check different parts of his body for levels of GVHD: back, arm, inner thigh, and face. He was pretty miserable for the rest of the night after getting four shots and then having four chunks of skin cut out. But the results came back last night and the doctors are happy with his GVHD levels, so that was good news. We did learn another interesting tidbit this week: Since the transplant, Torger's developed a couple of deep, parallel ridges on each of his fingernails. One of our regular nurses, Erin, told us that's because fingernails often fall out after transplant, but apparently Torger's nails resisted it. Yikes! We're kind of glad we didn't know that one at the time.

Day 61 And Still Not Done

This has been a pretty uneventful weekend. Torger just got off the phone with his dad and is waiting for the television event of the season on the SciFi Channel: "Sharks in Venice." He is, of course, disgusted that the sharks that will apparently be the villains of the movie are great whites--and not even a kind of shark that could possibly, under some far-fetched circumstance, ever stand a chance of winding up in the Venice canals. But he plans to watch it anyway because, well, it's a killer shark movie. Set in Venice. Meanwhile, I'm making dinner (like the sharks, we're also having Italian ). I've been trying to get Christmas cards written in between going through bills and trying to keep up on the filing. My friend Jean advised me early on in Torger's treatment to start a file to keep bills and insurance statements coordinated, and keeping up with that file has been both time-consuming and essential. There are so many bills for so many different providers that it becomes really hard to keep them straight, and it would be really easy to pay something twice without this system. There's one unit of the hospital that has twice now neglected to bill our insurance and just sent us a bill for the total amount due, which I might have paid if I weren't making a point of matching all these things up. So while Torger is watching sharks, I think I'm going to enjoy a quiet evening collating.

Day 58--Just Need to Wait

Torger went in on Wednesday for his Day 57 bone marrow biopsy. We won't know the results until next week, but Dr. Tse did warn us that we have to be on the lookout now for pneumonia and fungal infections, which tend to hit hard after Day 50. Just when we thought we were almost in the clear! But we'll just wait it out. We're very much in waiting mode now as we get through the second half of the hundred days.

Torger hates the biopsies (with good reason--they hurt), but they're the only tool we have to know if any leukemia cells are coming back. Otherwise, Dr. Tse is very happy with how Torger's doing. He continues to have just the right amount of GVHD showing up on his skin, and his kidney and liver function are doing much better. We got a little bit of a laugh when Dr. Tse told us that the BMT team is "all very fond" of Torger. That's such a nice thing for a doctor to say. (Of course, Dr. Tse is also the one who, in his medical notes outlining the initial transplant protocol, described Torger as a "pleasant 52-year-old white male.") We chuckle because of Torger's well-established reputation as my Old Man Grumpus, but the truth is, he really has been a good sport through this whole thing. Of course, he's back to being grumpy today because he's sore from the hole they drilled in his hip to get the marrow out. Having watched the biopsy, I think he's more than entitled.

Day 56--Everything's Fixed

The car's all fixed now...new window, new battery, new keys, even a new pair of wiper blades. It's like Christmas for our Honda. We're doing better, too, now that we've had some time to regain our perspective. We're also pleased that the Denver police have assigned a detective to the case because we were able to get the video, so maybe they'll actually catch the guys with their car trunk full of other people's blankets, mittens, and owners' manuals. Ha! (Sandy, the hotel manager, said she thinks these kinds of car break-ins tend to pick up around the Christmas season because this is the way the thieves go shopping for their presents.) Our 5-year-old nephew, Will, assured me that they don't have robbers and burglars in his neighborhood because they're not allowed there. I think Will's on to something. We just need to start posting "No robbers allowed" signs.

Otherwise, life is back to "normal." Dr. Tse called to congratulate us on doing a good job of keeping Torger hydrated this past week. I think we do deserve congratulations on this, since it requires a little bit of work. In addition to his daily fluid infusion, he has to try and drink up to two liters of water or non-caffeinated beverages every day--but no tap water and no ice made from tap water. We've found an unsweetened, decaffeinated, bottled green tea with no preservatives that he likes, and it sounds like it's working for his liver and kidneys. Yay!

Torger's dad, Jon, called on Saturday, and he offered an interesting observation. While he's counting his own life in terms of years, Torger is counting his in terms of days. It's a good reminder to appreciate every one of those days and not let the creeps of the world spoil any of them for us. The creeps in the world are WAY out-numbered by the good guys.

Still More Day 54

Sandy the hotel manager and her assistant, Jason, were able to isolate the section of the security tapes where the guys broke into our car, and they called me to down to the office to show me. You can see a dark gray Pathfinder pull up to a red sportscar parked three slots down from us, and a young guy in a white sportscoat and jeans, with dark hair pulled back in a ponytail, hops out of the back passenger side seat. He looks in the other two cars in the lot, then meanders over to ours and glances in the window. Then he opens the back door of the Pathfinder and leans in, as if he's talking to the other people in the car--and the tape glitched out right at that second, so unfortunately, you don't see them break the window. It comes back about two minutes later, and you can see a different guy, who had been sitting in the passenger seat in the front of the Pathfinder, standing at the rear of my car. He's got a green bag in his hand, and at first it looked like he was sliding backward out from under the rear of my car. It was very weird. But we think what we're seeing him is him shutting the trunk. There are papers scattered around my car at that point almost exactly where I found them this morning--many of them sheets from notepads we've gotten from Dan Richmond, our insurance agent. (We always keep a Dan Richmond pad in the glove compartment.) Then he hustles the green bag over to the Pathfinder and hops in, and they all drive away. We couldn't see their license plate, but we think the police might be able to. The other cameras around the building caught them pulling into the parking lot and driving out, but lucky us, they only stop at our car. It all happened about 9:30 last night. 9:30!! In addition to just being pissed off about the whole thing, I'm annoyed at what they took, besides the papers from the glove box...it was all stuff that had absolutely no pawn value and is just going to wind up in a dumpster somewhere, but it's stuff we loved. The green suede gloves I've had for 10 years, the fingerless mittens my sister knitted for me last winter, and from the trunk, they took the green velour blanket that Torger's mom gave us as a wedding gift 16 years ago. It was a worn out old blanket, but really soft and Torger's favorite...he took it with him when he went in for the transplant and had it with him all through his stay in the hospital. We'd only left it in the trunk because we didn't really need it in the hotel, and last night when I unloaded groceries from the car I saw it there and thought, "I really should bring that in and wash it." I never imagined anyone would steal an old blanket. We just picture him going home to Mrs. Thief and saying, "Here honey, here's the blanket you've always wanted." She'd be totally bummed. But we'll miss it, and I think that's why this whole thing is so hard for me to wrap my brain around. It all just seems so stupid, and it makes me sad.

More on 54

I am, once again, very grateful for Torger's ability to cheer me up and help me look on the positive side. He had the idea to go out and get a "club" for the steering wheel, which we hope will at least prevent our car from getting stolen tonight if we park under a bright light right outside the hotel entrance. We taped up the window and went over to a nearby Auto Zone for the club. Then, when we went back out to the car, our battery was dead. We'd been having trouble with the starter, but now apparently our battery is about gone, too. But really, what better place to have your battery conk out than in the parking lot of an auto parts store? The Auto Zone guys jumped it for us and advised us to drive around for a little while to make sure it was charged up. So we took a little drive east on Colfax to Watkins, Colorado, which is really just outside Aurora but seems farther. By the time we got back to the hotel, none of it seemed so bad anymore. I'm now busy rearranging tomorrow's appointments with the hospital (Torger) and the dentist (me) so that we can get in and get the car fixed first thing in the morning. Torger says to write that now he's whining for his dinner, but really he gets the non-whiner award for today.

Day 54--Heavy Sigh

So, our car got broken into last night in the hotel parking lot, leaving us with a smashed rear window on the driver's side and a backseat full of broken glass. We didn't have anything of huge value in the car (apparently, they didn't want our bags of recycling), but the thief stole all the contents of our glove compartment, including, ironically, my gloves. Unfortunately, in with all the papers for our car--which I'm sure had all the information someone needs to steal my identity--was a valet key we've never used and had totally forgotten about. So now we not only have to replace the window but we also get to have the whole car re-keyed. And no one can do any of it on Sunday, so we're not sure what we're going to do tonight. The Denver police actually came by to take the report in person because we think the break-in may have been caught on the hotel's security cameras, which probably won't help us but may help them find the people responsible and prevent future break-ins. I'm just feeling violated and overwhelmed and angry right now. What's wrong with people? I know, I know...it happens at hotels and it could have been much worse. But it's just one more thing we don't really need right now.

Day 53 in the Land of the Free

Looking back years from now on our post-transplant life in the hotel, it will probably seem surreal that we were here, in our little bubble, during a time of such historic turmoil and transition. We chatted about the build-up to the election with friendly strangers in the hotel lobby or fellow patients on the 11th floor. We celebrated the election of our nation's first African American president with the kids who work the weekday nightshift at the front desk, Kelvin and Chris. We've watched the economy unravel on TV and online, only occasionally taking an anxious peek at our own retirement account (also online). This week, we've once again relied on the Internet as we've helplessly and angrily followed the announcement by Scripps that they intend to sell the oldest newspaper in Colorado, The Rocky Mountain News, and that if they can't find a buyer by sometime in January they're going to shut it down...sounding yet another death toll for the once-great tradition of the two-newspaper town. I know this hits me harder because I'm from a newspaper family and because I'm worried about my brother, Alex, who's among the many hard-working Rocky staffers who may soon be looking for work. For me, the Rocky--that good old tabloid format you can hold in one hand on the bus and the hurried smell of raw ink and cheap paper--is like family. It's the memory of great mornings sitting at Winchell's donuts with Dad when he'd let us have a donut and 7-Up for breakfast while he had his coffee and cigarette and we all read the funnies, which were really funny back then. It's the last gasp of the great newspaper battles that I took very seriously when I was little, truly believing that a Sun-Times family was in some small way just a little bit superior to a Tribune family. The demise of the Rocky isn't the war in Iraq. It's not even page 10 news in most parts of the world. It's just one more hurt in a long list of hurts created by an economy that for too long has benefitted greed and opportunism. And it's not like I'd feel any differently or be doing anything differently if Torger and I weren't living here in the hotel through it all. We wouldn't be taking to the streets in protest. But we would be talking about it with people we know, feeling somehow more engaged and connected with our own little community. Even with e-mail and letters and phone calls, there's a sense of separateness that characterizes our lives right now that sometimes is tough, even while at other times it can be almost comforting. We both felt it during the snow this week, when for the first time, we just really missed our house and being home. Even with friends keeping an eye on things, we worry about the snow getting shoveled and the gutters piling up with leaves and how our neighbors are doing and whether Mom and Rich are having trouble on the icy roads. I've had a cracked tooth that's been pretty painful, and even with a referral to a good Denver dentist, I found myself really, really..almost unreasonably...missing my own dentist in my own hometown. Living in a hotel is fun, in its way, and we're here because this is where we have to be now, at this time in our lives. And we like being together. But it's clear that by the end of our 100 days, we'll be more than ready to move out of this bubble and be back in the world.

Day 51--Huh?

Torger has been having very vivid dreams lately, although not as scary as they were when his Tacrolimus levels were too high. Last night, he dreamed that the Brady Bunch took him to Colonial Williamsburg, which had turned into a cult of people who read from right to left.

Day 50--The Halfway Point

We are now at the halfway point in our 100 days. Today, we had our weekly appointment with Dr. Tse, who officially declared Torger "boring" because of how well he's doing. He's got just the right amount of graft versus host disease, all his cell counts are heading in the right direction, and we've seen no negative complications. "Boring" is a great thing at this point in Torger's recovery.

Day 49--No Reason to Whine

Tomorrow will mark the official halfway point in Torger's first 100 days post-transplant. It's still hard to believe things have gone so smoothly this far...as yet, no infections, no bad GVHD, not even a need for any urgent transfusions. Really, at this point, we have absolutely no reason to whine. Next week, on Day 57, Dr. Tse will do another bone marrow biopsy to check for signs of leukemia and to see how well the cell engraftment is progressing. At that point, he's said he'll consider letting us reduce Torger's lab visits to twice a week, but only if he's comfortable with the results. We're really hoping this happens because right now the time we have to spend in the lab every other day feels like our greatest health risk...it's the time of year when everyone's coughing and everyone is fighting colds or the flu. Torger gets his blood drawn at the Bone Marrow Transplant Infusion Center (lovingly known as The BIC), which is a special, smaller infusion center specifically for BMT patients who are severely immune-compromised. That keeps Torger away from the larger Infusion Center, which serves a much wider range of patients with a wider range of maladies and more bountiful selection of germs. But even BMT patients, caregivers, and nurses still get colds, and yesterday it felt like we were surrounded by wheezing, rattling coughs, and juicy sneezes. We wouldn't be so paranoid except that we're usually there for a pretty long time...they draw the blood and then we sit and wait until the results come back from the lab before they'll release us (in case Torger's counts are off or he needs a transfusion). The BIC nurses are also the ones who change the dressing on his Hickman catheter, arrange for his magnesium delivery to the hotel, and tend to other regular routine business involved with his care. So it's never just a "pop in and get out" type of visit. Yesterday, Torger wore his mask for the entire time we were there, to try and keep the germs away. I didn't have a mask--although I'm going to bring one in the future--so I just kept wiping myself down with Purell. Neither one of us can afford to get sick right now. Even with all the antiviral medication Torger is taking, he's still at huge risk of infection, and pneumonia can be a very common--and lethal--complication after a transplant. Dr. Tse has said he wants to keep us out of the hospital as much as possible for this very reason, which is why I now give Torger his fluid and magnesium infusions at home. But for now, we still have to do our every-other-day visits to The BIC...so I guess I'm whining about that a little after all.

Day 45--Thanksgiving and Beyond, Plus a Little Holiday Mush

I had every intention of posting to the blog on Thanksgiving, but the time escaped me as I worked on making our little feast. Here's the secret to making a turkey in a toaster oven: buy a boneless turkey breast, prep it the way you way you normally would for roasting (herbs, butter, etc.), then smash it down as flat as you can to fit it into the oven. It worked! We actually had a lovely dinner, with our flattened turkey, mashed potatoes, cranberry sauce, stuffing, and green beans...and I am just ridiculously proud of myself for making it work. We took pictures to post on the blog, but it was after dark and the lighting wasn't good, and somehow, everything in the photos looked like big bowls of glop. But I swear it all looked quite appetizing in real life. We both ate our fill and were very thankful to be celebrating here in the hotel together...when just a few months ago we honestly didn't know if Torger would make it this far. We feel very lucky. Everything continues to be going well, and he seems to be getting a little stronger every day.

Now I'm going to get mushy, so if that sort of thing bugs you, you can quit reading here. Since Torger's diagnosis in May, we've been fortunate to have incredible support from our friends and family...not all of whom we've thanked appropriately yet. I'm still working on that, but we've been particularly helped by the experiences of several of our friends who have been through cancer themselves. I wish that none of them had reason to have the wisdom they do, because it came at a very high price. But Torger and I have been educated, soothed, and comforted by hearing about their experiences and being better prepared for what to expect as we've moved forward. So today, we want to offer a special thanks to Teresa, who even flew out to Colorado in September to pull weeds with me and share chemo tales with Torger; Judy (who makes a great chicken soup); Deb; Barb; Stacy; Paul; Anne; all the 11th floor volunteers, especially Gail; and the memory of Margaret Thompson, who reminds us that living--and living well--with cancer is very possible, because she did it for a lot of years. We're grateful for Jim and Donna Reidhead, who completed Jim's 100 days post-transplant just shortly before Torger's procedure, and whose blog has been a really important learning tool for us all along the way. And especially our friends Jean and Ted, who have shown us how possible it is to live with grace, humor, and hope, even when there seem to be far more reasons to be angry and depressed instead. More than anything (and believe me, there's been a lot that we've learned from these two...not the least of which is to up your health insurance once one of you turns 50), Jean and Ted have set the gold standard for what it means to stick together as a team and go forward with no regrets. We can never really pay them back, but we also know that Torger getting through this is the only payback they want. And we're hopeful that's one we'll be able to deliver.

It just started snowing...the first really big, fluffy snow this fall. It's nice to be here in our hotel room, feeling safe, and knowing we don't have to get up to go to the hospital in the morning. Dr. Tse is in Ohio with his family, and Torger gets the weekend off.

The Green Revolution

Just as an aside, I wanted to comment on one of the weirdest challenges we've faced living in a hotel: recycling. Our Homewood Suites is a nice place, but it doesn't have any kind of system for recycling. Now remember, Torger is only allowed to have bottled water--nothing from the tap--and so with that, and the enormous amount of plastics we go through because of his medications and infusions, we've basically become our own little Superfund site. We've been dutifully separating out our recyclables every day, and I think we've finally trained the household staff not to just throw out our recyclables when they clean the room. Once we've got a full grocery sack or boxful, we stick it in the bedroom closet or the trunk of our car. My sister Marcy and her husband, Mark, have been wonderful about taking a load of recycling with them every time they drop off another batch of bottled water (which they pick up for us at Costco). But it continues to mount. I'm actually just posting this as a warning that anyone who stops by the hotel to visit from now on might just get a bag of mixed recyclables to take home as a souvenir.

The Big 4-0: Way To Go!

It's day 40, and as Fujiyamamama noted in her recent blog comment, we're now more than a third of our way through our "life in a box." For me, the time has zipped by, but less so for Torger. I've actually been really enjoying being holed up here with my darling husband, but he's starting to go a little stir crazy. The difference is that I'm actually still working, e-mailing and talking on the phone to the office and trying to get in a full eight hours or more from our room as often as I can. I also have to pay attention to all his medical needs and make sure he gets his medicines at the right times. And since he has to avoid any potential sources of bacteria--which includes uncooked food, dirty dishes, and dirty clothes--I'm also in charge of all the cooking, clean-up, and laundry, which are actually welcome little tasks that give some rhythm and structure to my day. He, on the other hand, is having to create his own rhythm around things that involve receiving more than doing: eating, taking his medications, getting his infusions, going to the hospital for his appointments. It's frustrating for Torger, as someone who always has things he wants to do and has never been one to shirk his share of the household stuff. He doesn't have the energy to do art, but too many days spent reading and watching videos has already gotten old. He's feeling better and wants to get busy, but there's nothing for him to really get busy doing. He would so much rather be home cleaning out the gutters. But the truth is, he still doesn't have any stamina. He just has to wait it out while his immune system rebuilds. Before his transplant, we scouted a bunch of used CD stores, and he picked up a bunch of cheap disks. Now he's going through and listening to them, figuring out what he could play on his radio show with Randy once he's well enough--and that's been a helpful activity. We're also trying to be more systematic about exercise, and today we went out for a walk for a few blocks. It's the longest he's been able to go, and it really tired him out, but it was an accomplishment. Still, it's better than when he was in the hospital. He got so bored there at one point that I came in and found he had named a fly that was hanging out on his windowsill...Aloisus Delmar. It was half-dead when he found it, but he put down a little bite of food for it, and after that, it hung on for a little bit. But by the time I got there, it was ready for a "burial at sea" in the bathroom. Fortunately, the boredom hasn't gotten quite that bad here, and he's gradually trying to do more things for himself, which is good for both of us. He keeps hoping, though, that Dr. Tse will let us go home before the 100 days are up, and I just don't see that happening. They keep us close to the hospital for a reason.

Day 36--Gettin' Our Kicks

Despite the title of this post, this has been a pretty low-key day. I just couldn't think of anything else to rhyme with 36. Sicks? Picks? Tom Mix? Nothing seems appropriate. And we have had a little bit of fun, thanks to a quick visit from our friend Maggie, who stopped by the hotel lobby long enough to give me a hug and drop off a really cool little remote control helicopter for Torger to fly around the hotel room. Another good friend, Dave Z., was in town for a dentist appointment and dropped by for a quick hello with Torger (after we doused him with Purell). So I guess we've had our share of kicks for the day. Torger is able to have an occasional visitor now, as long as it's someone who doesn't have kids or work in a library, a school, or anywhere else where germs run rampant. This rules out many of our immediate family members and friends, unfortunately! But it really was good to see a couple of friendly faces this afternoon. Torger had a pretty uneventful doctor's appointment this afternoon, where Dr. Tse just reiterated how well Torger is doing. He said he guessed that Torger is probably in about the top 1% in terms of his post-transplant recovery, and there's no real explanation as to why we've been so lucky. Torger's dad, Jon, suggested good karma, and that's about as reasonable an explanation as any. We think it's Dr. Tse's good karma working on our behalf! It's hard to really communicate the level of personal interest and concern he takes in his patients, to the point where he actually calls twice a day to check in on those days when we're not at the hospital. He even called from Ohio when he was there on a personal visit. We're really grateful that he's our tour guide on this strange and winding journey.

Day 34--Couldn't Ask for More

Dr. Tse just called with the results of Torger's bone-marrow biopsy from last Wednesday. The exact word he used to describe Torger's progress was "fantastic." He said about 91% of Torger's T-cells are now the healthy donor cells, and he added, "This is very, very positive. This is an excellent number. You really couldn't expect a better number than this." He sounded as overwhelmed as we feel at hearing this great news.

(From MedicineNet.com: "T cell: A type of white blood cell that is of key importance to the immune system and is at the core of adaptive immunity, the system that tailors the body's immune response to specific pathogens. The T cells are like soldiers who search out and destroy the targeted invaders." The "T" in T-cell stands for thymus...although I like Mom's suggestion that it stands for Torger.)

Torger is continuing to surprise them...at this point post-transplant, they would expect him to have about 10-15% cell regrowth in his marrow, and he's at 50%.

We know we have to be cautious and can't let down our guard, but for the moment, we are feeling incredibly fortunate.

Chicken Soup for the Chicken Soup Hater's Soul

Among the many pieces of advice Dr. Tse dispenses on a daily basis ("Always wear sunscreen!" "Avoid construction sites!" "This is a long march!"), he has been telling us he wants Torger to eat chicken soup. Every day. Now, this is normally sound advice, since studies are starting to show that chicken soup really is good for bolstering the immune system. But Torger hates chicken soup. Like some other Hougens I could mention, he is a notoriously fussy eater. But some of the foods he used to love don't taste as good to him now, so he has been willing to try a few different things these past few months. I rejoiced when he consented to eat pot roast and didn't even seem to mind it. But chicken soup is a struggle. I've been trying to sneak chicken broth in wherever I can. ("No, really...this is potato soup.") And this weekend I'm going to try making a batch of homemade chicken soup, which I think he'll like because I can tailor it to his tastes. But if he's going to eat it every day, sometimes he's just got to choke down a can of chicken noodle. He knows there are certainly much worse treatments he could be enduring, and he's making the effort to get down all the broth instead of just picking at the noodles. It's just one of those things he has to do, whether he likes it or not. This is a long march.

Day 28--Going to Be Great

This will be a great day because we don't have to go to the hospital. The visiting nurse is coming over to teach me how to inject Torger with his saline fluid, which we're hoping will reduce the hospital visits to about three times a week. After several days off the Tacrolimus, Torger started back up on it last night at a reduced dose...and he's sleeping soundly at this moment, which is a very good sign that the reduced dose is an improvement. His liver and kidney function have stabilized thanks to the daily liter of IV fluid he's been getting. The GVHD rash on his skin has also settled down. Yesterday, we were both able to exercise a little, which felt really good. I got on the treadmill, and he worked with a weighted ball to try and get some of his muscle strength back. It's really important for him to get up and moving, even when all his body wants to do is sleep. So we're trying to make it a regularly scheduled part of our hotel routine. Even walking up and down the stairs from our room to the exercise room is a good outing for him.

On a different note, we got a card from Torger's donor! Thanks to unintentional clues dropped by several members of the hospital staff, we suspect the donor is from Baltimore. We know for certain that she's a 29-year-old woman who has never been pregnant, but that was about it until she sent this card through the bone-marrow donor registry. She's not allowed to use her name, but it's a great letter, written the night before she made the cell donation:

"Dear Friend: I address this letter to you as my friend, because though I know little about you--Chaver--friend in Hebrew--means friend but also connected. And in some way, we will soon be connected--and though it's unclear if you will now have my curly hair, love chocolate, and cycle centuries--we will always have this connection. I want you to know that it is an honor and privilege to give to you in this way. I feel very blessed. Four years ago this week, my mother, who was 52 at the time, was diagnosed with cancer. Our family journeyed through some very difficult and scary times but since then she has celebrated with us three siblings' weddings, five new grandchildren, and many holidays. Our family is permanently changed by this, but we have grown closer and stronger together. I hope this note brings you hope and strength. As I prayed for you, my friend, last week on Yom Kippur, I prayed that you and those close to you are blessed with hope, strength, and healing. My family is all rooting for you--they want you to know you are getting 'good DNA' and we are now all family. To a speedy and complete recovery. L'chaim/TO LIFE! Love, Your Friend."

Back to the Hospital

You can tell from his expression exactly how enthusiastic Torger was to be back in the hospital yet again today to get more fluids. My sister Marcy theorized at one point that being in the hospital for weeks at a time would be a lot like being stuck on an airplane--in coach--for the same amount of time. This is the best comparison I've heard so far, and it explains why going back in day after day is not a lot of fun, no matter how much we love the staff. His nurse today said, "At least you guys are patient and polite about it...some people get really angry because they're so sick of being here." (And yes, Torger's pants have a hole in the knee. They're wearing out, but we're waiting to get him some new pants until his weight stabilizes. Right now, all of his clothes are huge on him!)

And Now, For a Brief Political Commentary...

Torger's life has been saved by stem-cell research, so we were encouraged by this news today. While Torger's transplant wasn't from embryonic stem cells, we've gained a new appreciation for how important this kind of scientific research is to fully understanding diseases that kill people of all ages, including children. The methods Torger's doctors are using today weren't available even 10 years ago--only research has made his current treatment possible.

Day 26--Catching Up

It's been a tough week in a lot of ways, although Torger is doing OK. Dr. Tse has been monitoring his kidney and liver function closely and adjusting his medications on a daily basis to try and prevent any problems. Apparently, every patient is different in terms of how their bodies absorb the medications, and Torger is like a little sponge...he just takes it all in. As a result, the Tacrolimus (an immunosuppressant they're using to inhibit graft vs. host disease) builds up in his system, which can cause liver and kidney failure and potentially be life-threatening. So they've been checking his blood daily and giving him a liter of saline every day to help flush the chemicals through his system. We now fully understand why we're required to live so close to the hospital during the first 100 days, since we've had to go in every day this week (except Thursday, when Torger pretty much just slept all day recovering from the strain of the day before). Wednesday was the toughest day because the nurses tried to give Torger an infusion of saline through one of the lines on his Hickman catheter, and the line burst! The nurses were pretty surprised...apparently, none of them had seen that happen before. Torger was terrified they were going to have to replace the whole catheter (which the doctors all thought would be necessary) because in his current state of immune deficiency that would be very dangerous. But fortunately, there was a handy RN who was able to repair the line with what looks like some little pieces of plastic tubing and thread. But in the meantime, Torger wasn't allowed to eat or drink for nearly 15 hours, which was really hard on his system...and by the time we got to our late-in-the-day appointment with Dr. Tse, he was just spent. We were both completely frazzled when we got home that night, and I made the mistake of checking my e-mail only to discover that my boss at the University had resigned. After a mini-meltdown, I got ahold of some friends on campus and talked to the interim president, who reassured me that I still had a job. But neither Torger nor I slept well that night.

On Monday, Dr. Tse is making arrangements so I can start giving Torger his extra fluids at home, along with his magnesium, which will make our lives easier. One thing that has been frustrating for both of us is how slowly everything moves now. Torger says that the hospital seems to just slow time down to the point that you either go insane or quit caring about time. If you're scheduled for an hourlong appointment, it can easily take five hours. And at home, Torger himself--usually Mr. Speedy--now moves really slowly, so that getting dressed, putting on his shoes, and brushing his teeth can take the better part of an hour. He hates it because he says it makes him feel so weak, and I admit I get antsy and have to stop myself from rushing him along. He just has very limited energy, and he can't push his body in ways that have always been normal to him.

So now we're here in the hotel, getting him prepped to go back to the hospital for yet another infusion in a couple of hours, after he finishes getting his infusion of magnesium here at home. On the plus side, his digestive problems seem to be clearing up, and he is showing quite a bit of level one graft vs. host disease (GVHD) in the form of a rash on his skin. It's appeared on his face, back, legs, hands, and groin, and this is what the doctors want to see. A little bit of GVHD is necessary for Torger's recovery, but too much is very bad. They took about a dime-size patch of skin off his hip on Friday to biopsy, and so far, Dr. Tse likes what he's seeing. So we're keeping our fingers crossed that everything will just go smoothly for the next few days!

Day 21--Election Day!

Today's a great day--not just because it's the most exciting Election Day of our lifetimes but also because Torger got permission to skip his magnesium drip yesterday and reduce it today. Hoorah!! He had his regular appointment for bloodwork Monday morning, and both his potassium and magnesium were too high. He's had such a bad reaction to the magnesium infusion that this is a big relief. We understand Dr. Tse's concern about not getting too excited as Torger starts to feel healthier because that could put him at risk. But this is also a good reminder that Torger knows his own body better than anyone else, and he's had a pretty good track record so far of identifying what works for him and what doesn't. Without the magnesium, he had a good, restful day. He was able to eat, sleep, read and listen to music without feeling terrible.

We've had amazing support from family and friends throughout Torger's illness, which I'll write about in greater detail in a future post. Today, I'd just like to highlight the happy surprise we received yesterday from family friend Katie Hoh, a teacher in New Jersey. Her third graders sent us a package of handmade cards, each with a joke that truly did brighten our day. So, I'm pleased to share some of these with you now to brighten yours:

• From Hannah: "I heard the invisible man married the invisible woman. Heard their kids weren't much to look at."


• From Isaac: "How do you get a baby astronaut to go to sleep? You rock-et."


• From Cameron: "What do you call an unidentified flying cow? A MOO-f-o."


• From Lyndsay: "Why did the puppy jump into the river? He wanted to chase the catfish."


• From Nicole: "What did the prince think of Snow White? He thought she was a little flaky."


• From Dominic: "What do you call a pirate with a wooden leg? I don't know, I'm stumped."


• From Lauren: "Why did the little pig hide the soap? He heard the farmer yell, 'HOGWASH!' "


• From Guinnevere: "Knock Knock. Who's there? Emma. Emma who? Emma 'fraid of the dark!"


• From James: "What did the dirt say to the rain? 'If you keep this up, my name will be mud!' "


• Also from James: "What did the beaver say to the tree? 'It was nice gnawing you!' "


• Another from James: "What do skeletons say before they begin dining? 'Bone appetit!' "


• And still more from James (Go, James!) : "What did the rake say to the hoe? 'Hi, hoe!' "


• From Katie: "Why can't an elephant ride a bike? He doesn't have a thumb to ring the bell!"


• And another from Katie: "How do elephants earn extra money? They babysit for bluebirds on Saturday nights!" (I confess, I'm not entirely sure I get this one...but I like it.)


• From Stephanie: "What did the Invisible Man's mother say to him? 'We never see you anymore.' "


• From Storm: "Knock Knock. Who's there? Cameron. Cameron who? Cameron over here."


• From Jaclyn: "What is black and white and red all over? An angry zebra."


• From Lisa: "Knock Knock. Who's there? Howard. Howard who? Howard you like to hold the puppy?"

Now get out there and vote if you haven't already!

Day 20--Pancakes A-Plenty

We are becoming a little food-obsessed. Keeping Torger's weight up and getting food in him that will stay there is a constant challenge, and certain kinds of food are proving useful in helping him get his many pills down three times a day. For me, the obsession comes, in part, from trying to figure out creative ways to prepare healthy meals in our tiny little doll kitchen. (I've already had an unfortunate, charbroiled banana bread experience with the toaster oven.) Good old-fashioned pancakes are turning out to be one of our mainstays because 1) I can make them in one pan on the stovetop; 2) they provide enough heft to calm Torger's stomach for his morning meds; and 3) they're delicious! Here is my favorite wonderful pancake recipe for two--it makes three or four medium-sized pancakes each. If you have more than two people, just multiply. Torger just puts honey on his, but I like mine with butter and maple syrup.

In a bowl, stir together:

1/2 cup white flour
1/3 cup whole wheat flour
1 tsp. baking powder
1/8-1/4 tsp. salt (depending on how much you like)

In a separate bowl, whisk together:

1 egg
1/3 cup milk + 1/2 cup milk (I've never added the fractions to combine this into one number, and it's easy to remember because it's just like measuring out the flour. Also, I use skim milk, but I'm sure other kinds would work just fine.)
1 T. honey
2 T. canola oil
1/4 tsp. vanilla

Stir dry ingredients into the wet ingredients until just blended. Batter will be lumpy. If it seems too thick and cushiony, just add more milk to thin it to your desired consistency.

Heat a skillet until a droplet of water will dance on the surface. I use a non-stick skillet with no oil, which works perfectly. Pour batter onto skillet. If you want to add in treats here (I like to add blueberries), this is the time to do it. Just dot them onto each each pancake. Batter should bubble, and when it just stops, flip 'em over and cook until they're done.

Day 19--Oh, the Magnesium!

Well, it turns out we don't actually have a home healthcare nurse coming in daily to administer Torger's IV magnesium infusion. The nurse came by Thursday morning and taught me how to hook Torger up and run the equipment, then left us with a fridge full of IV bags, some rubber gloves and a pump. Now it's one of my jobs to make sure he gets his 6 gram dose of magnesium every day, even though he really, really hates it. When he's not getting magnesium infused, he feels energetic and good. But when he's getting the infusion, all he can do is sit around and moan. I feel like I'm torturing him every time we have to administer it--he says it makes him feel like he's burning inside and he can hardly stand it. Friday's infusion was so painful for him that we called Dr. Tse yesterday to ask whether we could reduce the dosage, since 6 grams is an awful lot and Torger's levels were all good when we went in for his bloodwork on Friday. Dr. Tse let me slow down the pump so Torger gets the dosage over the course of six hours instead of three, which has helped some. But he also told me that I have to be the bad guy now and make Torger follow his medical regimen even when it's hard on him. He reminded me that we still have a long way to go in the treatment process, and even though Torger feels good, he's far from well. Apparently, Torger's body is just chewing up magnesium and potassium right now, and Dr. Tse said if the levels get too low, the complications could be life threatening because magnesium is necessary for heart and muscle function. So we're doing as we're told, and Torger's just suffering through it.

In addition to being on the magnesium pump for six hours every day, he has to take the following medications now:

At 8 a.m. --Pantoprazole, 40 mgs, to prevent ulcers; voriconazole, 200 mgs, to prevent fungal infections; tacrolimus, 1 mg., an immunosuppressant; ursodiol, 300 mgs., to protect his liver; acyclovir, 800 mgs., to prevent viral infections; amlodipine, 10 mgs., to treat high blood pressure (from all these other medications); potassium chloride, 40mEq., to treat low potassium; benzonatate, 100 mgs., to treat his persistent cough; metronidazole, 500 mgs., to prevent diarrhea; and a multivitamin.

At 2 p.m.--Another 300 mgs. of ursodiol for his liver; another 40 mEq. of potassium; another metronidazole; and more of the cough medicine.

At 8 p.m.--Yet another 300 mgs. of ursodiol for the liver; still 2 more of the potassium pills (which are huge and have remarkably sharp edges); another 200 mgs. of voriconazole, the anti-fungal; another 800 mgs. of acyclovir, the anti-viral, another 1 mg. tacrolimus; another metronidazole; and another cough pill.

Then twice a day on Mondays and Thursdays he gets Bactrim to prevent pneumonia.

It's quite a cocktail! And it's a big adjustment for Torger, who doesn't even like to take aspirin normally. Our days are pretty well structured around administering various medications, although he did manage to have some fun on Friday. The 11th floor BMT unit had a little Halloween party, so he put on the mask he's required to wear whenever he's out, we wrapped around the rest of his face with gauze, then he donned sunglasses, a suit, gloves and a fedora to be The Invisible Man. His voice his so hoarse that he did a nice Claude Raines imitation! The nurses and other patients got a laugh out of him showing up, although they wouldn't have been able to tell who he was if I hadn't been with him! I did try to take his picture for the blog, but it didn't turn out (because he was invisible).

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.

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.