Day 94--MAD DOCTOR CREATES BALD ZOMBIES!

Actually, this is a shot of our wonderful Dr. Tse, checking Torger out at the Bone Marrow Infusion Clinic today. We were in there for Torger's blood draw, and he popped by. In addition to some poking and prodding, he took time to answer some of Torger's questions about brain fungus and other scary subjects. He said that recovery and avoiding problems is as much about logic and common sense as it is about medical miracles. We just have to continue doing what makes sense, based on all we know about this disease. He also told us that the molecular analysis of Torger's bone marrow showed that just before the transplant, even after all the chemo, there were still trace leukemia cells visible. But post-transplant, there are none. We didn't really need reassurance that we'd made the right choice in going forward with the transplant, but this is still really good to know. The fellow sitting in the curtain next to us, "Mike from Cleveland," told us he'd just bought a new furnace filter system for his house, for the exact same reason Torger and I are yanking out carpet. We're all trying to do what we can.

Day 93--Preparing to Live Dust-Free

Torger took the news about brain fungus pretty hard yesterday. I actually haven't seen him that upset since Dr. Tse told him he had a 70% chance of dying in the first 100 days after transplant. On both occasions, he went into the appointment feeling happy and confident and left looking like he'd been punched in the stomach. We both really appreciate that Dr. Tse is honest and straightforward with us; it's the reality of the news that is a little overwhelming at first. We have a rhythm...we take the shock, let ourselves be afraid, then set the fear aside and deal with what is. But last night, he was pretty afraid. This one is particularly hard to grapple with because we're about to leave our little bubble-world and move back home to the real world, but we actually won't be able to live in the real world for some time yet. Through most of his recovery, Torger has felt like he had some degree of control...eat the right foods, comply with doctor's orders, avoid sneezing and coughing people, take all the medications, and it will improve your changes of avoiding infection. The aspergillus risk is tougher because it's just out there in the air and on our shoes and clothes and in our hair. And Torger--with all his books, music, objets d'art, collections of odd little toys--lives in a world that collects dust. All we can do is work hard to reduce the risk. Last night, we talked at some length about how we're going to manage this next phase, and this morning, we're going to map out a plan of action and a budget. We're just going to have to bite the bullet and make some changes in our home that we'd been putting off. For the next few months, Torger will have to continue to stay out of places with plants and pets. We're going to seal off his old records in plastic and he won't work in his studio, with its beloved dust-collecting stuff, until he's off immunosuppressants. Mom and Rich have been a big help already dealing with the mice that moved into our house while we were away, and we've had a woman cleaning the house while we've been gone to keep the dust under control. Now Mom and I can deal with some additional painting and cleaning and purging. I'm trying to convince myself it'll be fun, but my big challenge is to convince Torger to stay upbeat and forward-looking. That's our only viable option.

While You're Thinking About Brain Fungus...

...here's a joke from our friend Nik to lighten things up: “What do you call a mushroom that buys everyone drinks? A fungi to be with.”

Also today, Torger observed while looking around the Cancer Center waiting room: "A whole lot of us guys here look like Joe the Plumber." It was true!

Day 92--Brain fungus

We had our weekly appointment with Dr. Tse today, who told us Torger's biopsy from last week looked good and his infection-fighting ability is getting stronger. Over the next week, we'll have a whole slew of appointments with different specialists in anticipation of being allowed to move home after Day 100. But when we get home, we have a whole new reason to be cautious and worried: brain fungus. Brain infection from aspergillus is an increasing risk for transplant patients, and apparently two CU Cancer Center patients have died from it just recently. Unfortunately, aspergillus spores are hard to avoid. They're present in dirt and dust and floating around in the air. We know a lot of the things Torger must continue to avoid, like coming in contact with dirt or live plants, construction sites, dust, and being in rooms that are being dusted and vacuumed. But now we've started worrying about things like the musty smell that we get from the crawl space at times when the air conditioner comes on...or some of Torger's old collectible, record albums that may have a patch of mildew in places on their covers from when we had a flood at our old house. We knew we needed to replace the carpet in our bedroom because it's old and dusty and covered with cat dander (not to mention other, aromatic reminders of our poor, late kitty). But now it's urgent, as is taking down the old wallpaper in our computer room. Ai yi yi. Suddenly, going home doesn't sound quite as fun for either of us. Torger is actually pretty concerned about it because he was feeling that we had things pretty well under control. But as usual, Dr. Tse finds a way to keep us on our toes and paying attention to all the things we have to do to keep Torger alive. We also found out today about another risk we hadn't foreseen: With his new blood, Torger is no longer vaccinated against anything. Measles, mumps, rubella, tetanus...all the diseases he hasn't worried about since childhood are now real risks. We are under strict orders to avoid contact with any unvaccinated people until Torger can get re-vaccinated at one-year post transplant. I'm starting to suspect that we're going to be looking back at our 100 days in the hotel as the easy part of this whole process...re-entering the real world is starting to seem a little daunting.

Day 9-0: Ten More to Go!!

Dr. Tse is recommending this book to all of his patients (see intriguing reviews at http://www.jeromegroopman.com/how-doctors-think.html). From what he's told us, it sounds like it could be an important resource for any patient or family dealing with long-term or traumatic medical challenges.