Back to Gilwell

Last Sunday I had dinner with my Wood Badge Patrol. The Owl patrol from C34-04. Six of the seven of us were able to get together. We have stayed in touch and gathered for dinner periodically. They all sent encouraging messages, called or visited while I was sick. The fireman, Steve, visited a couple of times in ICU. His first visit is one of the few things I remember from that time frame. I don't remember the second visit at all.

Anyway here we are. All checking in. Who is doing what in scouts? How is your troop, crew, pack? When are you going to camp and where? New district positions? Kids getting married? graduating from college? Life goes on. From left to right: John, Chris, Mark, AJ, me, Steve. Another Mark wasn't able to be there.

Wood Badge is advanced adult leader training for boy scouts. Participants in the course are divided into patrols like a large troop and the camp is named "Gilwell." Gillwell is the first boy scout camp in the world, located in England near Chingford, a short train ride from London. A friend gave it to Lord Baden-Powell and it is still used as a camp today. I have visited there several times. Ironically, I've never been to Baden-Powell's house that is right in London. Anyway, "Back to Gilwell" is the camp song, a simple ditty with clapping and hand movements that will drive you nuts. Unless of course, you're a wood badger.

I went to yoga today. It felt wonderful. I have not had a bad day this week. I am really working with my shoulders, arms and fingers, to get more flexibility in them. My hips and legs seem to be pretty good. Of course they could use a little more stretch, but my arms and hands need to get to zero. I have lost ground with them. I missed PT tuesday because I couldn't find a parking place. 20 minutes in the parking garage is 12 minutes more than I allow and there weren't any spots to be found. I was in a queue of about 12 cars who drove in and drove out.

In any case I have decided to not go to PT for a while and work with the yoga. Add a couple more classes and do some serious work here at home. I have the exercises and equipment from the PT department so I know what to do. And this way they won't have to think of new things for me.

I saw Dr. Ganguly at the clinic today. He is happy with my counts even though the platelets have dropped to 108. I have to pause and laugh. I'm fretting about 108. For 18 months my platelets were in the 6-15 range.

He says the drop is caused by graft vs. host. I am anxious for my hg to reach "normal," that is 12.0, but it stubbornly stays in the 11s.

I asked him about this graft vs. host. GVHD. What's the big picture here? Julie focused on the skin, Dr. Abhyankar on the inflammation, Abby on the pain. I need a big picture. So the big picture is: this is good. They would describe my symptoms as limited. Some thickening of the skin, some inflammation, some restricted movement. People who have limited GVHD don't get the disease again. (For this I am grateful.)

I have scar tissue everywhere. In my joints, in my organs, everywhere. I asked him if I should treat it like arthritis? He nodded. I said rheumatoid arthritis, he made a face and said "no, no, no, no. Old lady arthritis." ha ha. It will last for the forseeable future. Can it kill me? "NO." That was a good answer.

Things to do include all that I am doing. Cortizone cream, Aleve, Tylenol, Cellcept. Cellcept is an immune suppressant and I guess by suppressing the immune system it stifles the scar tissue factory or something. In any case I will keep taking it for a while.
Then they might order photo-apheresis. During this procedure my blood circulates through irradiation that "numbs" it (Ganguly's word.) This makes it settle down and quit making scar tissue. "Simmer down..." The photo-apheresis involves inserting a port in my chest that is under my skin. The procedure happens twice a week for several weeks, then gradually tapers off over a 6 month period. I'm hoping it is 10 days between treatments by the time I go to Italy. Or that the team does not order it for me.

Whether or not we do it depends on how much flexibility I can regain in my shoulders, wrists and fingers over the next month or so. Paraffin dips, stretches, pullies, spa baths. Lotsa energy going into this.

Meanwhile stay busy is my mantra. Housekeeping, working, errands. There is always something to do. The more active I am the better I feel. I am still catching up with friends I haven't seen since I was sick.
~Cathi