Day 299--Latest Health News

We saw Dr. Tse on Friday for the first time in several weeks. Torger still goes in for lab work weekly and sees Dr. Romero at the Cancer Center here in Fort Collins every couple of weeks. But our check-ins at the hospital in Denver are becoming much more infrequent...in fact, unless there are problems, we won't have to go back until Torger's one-year anniversary in October. But it was good to meet on Friday to touch base and ask some of the questions that we've been saving up. Torger, of course, wants to know if he can get off any of the meds any time soon. Answer: Nope. Dr. Tse was very clear that he'll probably stay on this same regimen for a full two years. While it's easy for us to get fooled into thinking Torger's doing well and starting to fight off germs on his own, at this point, the drugs are still probably doing most of the work. He's still taking anti-fungals, anti-virals, and anti-bacterials, so it's tough for germs to penetrate that armor. Our next question was whether they could take the catheter out of Torger's chest. Since I'm no longer infusing him with anything, it's only used for blood-draws now, and we have to clean the lines and flush them with heparin every night. We're worried about it getting infected, and the dressing around the catheter has been irritating the already thin and sensitive skin on Torger's chest (one of the few spots he continues to have active GVHD). But Dr. Tse said he wants to wait until the October anniversary before removing the catheter. He did reduce the number of blood draws from weekly to every other week. Hooray! And he said Torger's cell counts continue to be astounding. The number he's watching most closely right now is the platelet count, and Torger's numbers are slightly above the normal range...meaning that he's got a little infection-fighting reserve now. He also confirmed that Torger will be able to get his vaccinations on his anniversary date. But he reminded us to remain cautious and remember that the first two years are still a very fragile period. In particular, he ordered us to keep Torger out of the sun. Apparently, it can trigger more aggressive GVHD, and that would require Torger to go back on immunosuppressants. For the most part, we've been pretty careful to keep him out of the sun for any length of time, but he's really craved a little bit of it here and there. We just have to keep the sunscreen handy at all times. Torger's still having a little bit of visible GVHD , and we discussed whether this would continue for the rest of Torger's life. Dr. Tse said that the hope is to reach a state of "immune tolerance," generally after two years, in which his body and the donor cells are completely comfortable with one another. We also discussed Torger's continued problems with "tongue-opathy" (Torger's term)--the ongoing inability to taste after more than a couple of bites, and the sensitivity to formerly friendly foods like tomato sauce. Dr. Tse said this was probably complicated by "dry mouth," which Torger's also had, and encouraged him to drink as much as possible when eating. But it sounds like this could go on for awhile. It's not harmful...just irritating...and we can live with that.

We spent the last part of our session with Dr. Tse talking about health-care reform. He mentioned that as a doctor, he usually has no real idea what kind of financial burden his patients face as a result of the care he's providing...and he was a little shocked when we gave him some specifics. (For example, we were billed a couple of hundred bucks when they flushed Torger's catheter lines one day at the clinic...something I can do at home for the cost of the syringes.) We've been extremely fortunate to have help from family and decent insurance coverage throughout Torger's illness and our hotel stay, and we're lucky to earn enough to be able to manage the almost daily out-of-pocket costs and co-pays and prescription costs that still easily run into thousands of dollars, over and above what insurance will cover. But again, we are VERY, VERY lucky. We don't have kids to feed or college funds to save for. We're not trying to pay off student loans. We weren't already carrying huge debts when Torger got sick. I had a large supply of sick leave and vacation time saved up that I'm still drawing on when I need an afternoon off to take him to the doctor. Under almost any other set of circumstances, this illness would force most families I know into bankruptcy. Quickly. One bottle of Torger's anti-viral medication costs more than $3,500 a month. We pay a reasonable co-pay. But if you didn't have insurance, what option would you have? For a lot of people, the most practical option is just to die. These are people who are as young as Torger, and have just as much chance for recovery, but who aren't poor enough to qualify for assistance or rich enough to afford a decent insurance plan. They're the people we've seen cancelling their clinic and treatment appointments because they couldn't afford a cab ride to the hospital, much less the cost of the appointment. We see people who are in the middle of chemo treatments and seriously ill trying to get themselves to the hospital on the bus. When Torger and I hear people hypothesizing about the theoretical horrors of government-run health care, we both get angry. The system that exists is already forcing life-and-death choices. We've just been very, very lucky.