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.