Just the facts, ma'am

Day 41 and chugging along. The dang mucositis persists, this filmy thing in my mouth like I drank too much milk. And the sore spots on my tongue aren't healing. I even had the dry heaves the other day, right out of the blue. I was just trying to spit out this bubbly mass from my mouth. Dana implored me to 'Make it to the toilet! The sink can't handle chunks!' Caregiver AND cheerleader! It was all air, so it didn't matter. I suppose this could be gvhd and I may have to live with it for a while.

My WBCs were at 7.4 on Saturday, and absolute neutrophil at 5.49, so the marrow is rocking. I just have to avoid any infections for another 59 days and not trigger gvhd (unless I already have). I could still use a few more red cells, a little anemic, but I think the drugs are hammering my metabolism more than anything else. I am always cold. Chills run through me non-stop; there is one running up and down my spine right now. I sit on the couch with a big faux fur cover on, and a soft hat, and I am alright.

This really all starts with Prograf or FK506, which is the immunosuppressant they give me to manage acceptance of the new marrow versus infection versus gvhd. It has many bad side effects - it damages the kidneys, causes headaches, raises your blood pressure, makes you prone to infections, burns up magnesium and potassium, causes acid reflux (as if I needed help there) and generally kicks your ass.

Here are the drugs I am on now:

Prograf, 6mg / day now

Actigall, to prevent kidney damage

Acyclovir to prevent infection

Norvasc to lower blood pressure

Diflucan to fight fungal infections

Potassium

Magnesium

Nexium for acid reflux

It's no wonder I don't feel great. But hey, it's day 41 and we're chugging along.

Dana and I went to writing class last Wed., and I suffered through three hours with the hepa mask on. This time there was another male in class, and 12 women. One assignment the teacher handed out sea shells, nice ones, and told us to write something. Every woman wrote about the shells in some way. The other guy wrote about a fishing adventure with his Dad and uncle, and I wrote about giant waves that creamed us at Point Judith. Huh.

We also had this exercise of doing alpha poems, where the first letter of each line spells something, like this:

Must be an easier way,

Using my body, making this a

Cause celebre, like some

Oversexed hotel heir with bulimia.

Still I regret ever hearing of cancer.

In no way do I deserve this, this

Treatment of my body;

I am not a

Septic system.

Which of course spells mucositis.

Feeling some pain, I push the button.

Every push brings some relief, a

Narcotic surge

Takes hold of me, just for

A little while,

Not for long,

Yet

Lucidity escapes me for days.

So you crazy blog readers, you can do better than that, let's see what you can do with this alpha poemery.

Yesterday we went to see the Papua New Guinea Sculpture Garden, right here on the Stanford campus. In '94 ten sculptors from New Guinea came to visit for six months, and created this garden. Dana stumbled upon it on a long walk. Unfortunately her camera battery was dead, but I found these pics. There is actually a rock sculpture of the Gates of Hell - I'll get a pic of that when we go back.