Day 113

I finally had my long-term appointment today. What a breath of fresh air!

I can drive. Photopheresis is over. Twelve treatments is all I need. I can walk outside and in the woods without a mask (unless mowing or something like that is going on).

Friends are coming to pack us up tomorrow. Well, no, not pack us up, just load us up. My incredibly hard-working wife has gotten the whole apartment, which we've slowly moved into over the last nine months, packed up over the last week, even while driving me to appointments and staying overnight with me at the hospital.

We've home schooled three and sometimes four children here over the last school year. So packing up was no small job; just the books and home school supplies were a load.

I have a really great wife, the best and prettiest caretaker ever. That's her with our oldest two sons in the picture above.


I still have to take blood thinners for the next three months. In fact, for the next week or so, I'm on two of them. Lovenox is a shot I get in my belly morning and night. If you've not had any shots in the belly (like I hadn't until about five months ago), they don't hurt any worse than shots in the arm. Sometimes I can't feel them at all. However ...

Insulin in the belly (when I was being fed by IV in January or February) is not painful. With Lovenox, the needle isn't bad, but the injection of the Lovenox is painful for about ten minutes. What a fun thing to look forward to twice a day, especially first thing in the morning!

I also am part of a study attempting to prevent ocular (of the eye) graft-versus-host. Apparently, if you get GVHD of the eye, there is no cure. You have it for the rest of you life, they just treat it with eye drops forever. I forget what the medicine is that they're giving me ... or may not be giving me. The eye drops they gave me may be a placebo. It is a double-blind study, so even the doctor who gave me the drops doesn't get to know whether they're the medicine or the placebo.

The idea is that maybe if they give the medicine in advance, then we transplant patients won't develop ocular GVH. Apparently, about 70% of transplant patients develop ocular GVH.

The nice thing, I guess, is that the researcher told me that it's looking so far like both the placebo and the medicine help prevent ocular GVH. He's wondering whether they won't soon be telling all of us to use an over the counter eye drop to prevent GVH of the eye.

Richard and Nichola

I have to tell you this story. I write to a couple in South Africa. He came down with Blastic Plasmacytoid Dendritic Cell Neoplasm (see tab above) last year.

He got a bone marrow transplant 7 weeks ago. He's doing much better than I was doing at that time. I'm very glad for him because Nichola, his caretaker, broke her heel falling out of a tree! He's no longer just the patient, he's the caretaker, too, because she's less mobile and in more pain than he is!

I've asked for prayer for them before. Thank you for those who have prayed. Other than this one awful development, he's done incredible. You might want to pray for them again.