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.