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.