Thursday, October 31, 2013

For Four Hours Daily, You Can Be like Me!

Physical Therapy, Light Therapy and a repeat mammogram/ultrasound has kept me pretty busy all week. The hour of PT was intense and I'll be doing that twice a week. Light Therapy takes a minute (for now) but it's a 70 minute round trip drive. PT takes about an hour round trip. Someone suggested I need an occupational therapist to straighten my clawed hand. The Claw is my personal horror movie. No one seems to know why my hand remains permanently frozen in a useless and unnatural position. Can't I just check into a clinic and and have them treat my whole body?

Next week I have to visit the lab for bloodwork, see my oncologist, and go to PT and LT. The week after I'll have my Vidaza shots, plus PT and LT. Of course these are all in different locations. Did you know gas costs money?

Wednesday, October 23, 2013

You Will Always Be Like This

That's what my NYC oncologist Dr. Giralt said in reference to my chronic graft versus host disease. It's the price you pay for keeping leukemia away, blah, blah, blah, he added.

Not all of us successful transplantees pay extra in scarring, monthly shots, excruciating itchiness, the need to wear special lenses, secondary cancers and more. Some do, of course, and I know of at least 3.  Most transplantee can ever give up the war been fought inside us. New battles flare and we must be ready to brandish our swords at any moment. Sorry for that cliched metaphor.

Dr. Lacouture, my NYC dermatologist armed me tooth and nail with new ideas about my appalling skin. One is UVB phototherapy which is similar to a tanning bed but less lethal. He suggested using creams I already have in new ways. It takes a long time tor cream up, but if it relieves the itching it's time well spent.

Monday, October 14, 2013

My Manic/Depressive Moments

Here's what I did today. And I'm not done. I took Buck to the park. Went to a very strenuous yoga class. Trimmed back the lilac bushes Marty transplanted. Lunched. Started sifting through my To File tray and arranged papers in neat piles which I plan to file later or tomorrow. Read by the brook for 45 minutes. Vacuumed two rooms. Sat down to write this blog.

I feel a little tired but it's a physical sensation that comes from doing things. The bad kind of tired is when you feel as though you're dragging around the weight of the world which is how your mind feels, too. This was how I felt from the moment I woke up yesterday until we left to celebrate my son's birthday. Even though my husband and son were around all day, I retreated into the dark place where everything is fraught with anxiety and numbness. We went on to have a very nice evening. I was thankful my funk had lifted.

Now, 24 hours later (minus 9 hours of sleep time), I still feel energized. I'm going to attack those sneering piles of mostly medical docs, receipts and bills and get organized for tomorrow when I might be able to make some sense out of the bills.

I can blame my Ms. Jekyl/Ms. Hyde flip flops on the bossa nova, but alas, I have to blame the prednisone weaning.

Wednesday, October 9, 2013

A Dead Horse

I was so disgusted with myself for constantly complaining about shoulder pain I decided to go to a chiropractor. My neurologist couldn't figure out how to treat me, and suggested I see an orthopedist. "He's likely to inject me, right?" "Possibly," he said, "but tell him to call me first." "I'm not going," I said adamantly. "How do you feel about chiropractors?" "I know nothing about that," he claimed.

I immediately made an appointment to see a highly-recommended chiropractor not too far away. I saw her Monday, when she identified a problem in my cervical spine and a misalignment in my lower jaw. I'll see her again today, and continue for a while.

With enough doctors to staff a small medical clinic, none seem able to address some of my problems, the ones that hurt the most. I'm going where the pain isn't.

Wednesday, October 2, 2013

Tick Time

Here in the woods, ticks are as common as mouse droppings, but are a more plentiful and pernicious pest. I just picked a dead little bugger off my stomach while in the shower. I thought it was a mere scab, which on my body are as common as, as ... a simile eludes me.

I looked up tick varieties/photos/diseases online. Mine doesn't look like a deer tick; it's way too big. It wasn't engorged, because it was dead, probably from sucking my questionable blood.

I'll call my internist and ask her what I should do. Just add one more medical issue to the list.