At War With My Skin

I mentioned a few weeks ago that I had a rash caused by graft vs. host disease (GVHD). I still have the rash, off and on. It is rarely itchy, but it does lead to dry skin, all over. Very dry skin.

How dry is it?

It varies, depending on the day and how recently I have applied my various ointments.

On a bad day, I notice flakes of skin falling into my food as I eat. When I take off my shirt, the flakes swirl around me as if I were inside a snow globe. The joe-flakes settle around me on the couch in drifts.  I feel like the Peanuts character Pigpen, surrounded by a constant cloud of dead skin. It's disgusting.

To prevent these blizzards, I have a full assortment of ointments and cremes, both over-the-counter and prescription. When the rash stopped being itchy, I switched from the steroid ointments to the OTC variety. However, they weren't keeping up with the dryness, so my doctor switched me back to the topical steroids. The problem with dry skin, aside from the gross-out factor, is that the skin is a significant  barrier against germs and other microbes. If it gets so dry that it cracks, those cracks open up a whole new front in the fight against infection.

While the dry skin is gross (and dangerous), prevention is also unpleasant. The ointments are based on petroleum jelly, so they don't work into the skin like a creme or lotion. They just sit on the skin, glistening and slimy. Since the rash is all over, I need to apply the ointments all over: feet, legs, groin, arms, hands, torso, face, scalp.

If it's a sunny day, I spread a beach towel in front of the patio door and lie in the sun for a while in my running shorts, pretending I'm at the beach. This is as close as I'm going to come to sunbathing for a long time, maybe for years, due to long-term skin sensitivity for stem cell transplant patients.

Eventually, I need to put on a long-sleeved shirt and long running pants so that I can move around the house and sit on furniture without greasing it up. The clothing sticks to the ointment, leaving me feeling clammy. Yuck. But better than getting an infection because I let my skin get too dry.

Not only is my skin dry, but so is my mouth. This is also a GVHD manifestation, as the disease can attack the salivary glands. The dry mouth makes eating some foods challenging, especially bread and cookies and similar stuff. If I'm not ready with something to drink, I end up with a chewed but unswallowable mass of food in my mouth. Yum.

So, woe is me. I'm either flaky or oily, and my mouth is a dysfunctional desert. All of this makes my doctor very happy. She keeps reminding me that I had none of these symptoms after the first transplant, which did not lead to remission. GVHD indicates that my donor cells contain T-cells that treat my own skin cells as the enemy, which is bad, but which increases the probability that my donor cells will also treat any leukemia as the enemy, which is good.

(Eventually, researchers will figure out how to give a leukemia patient T-cells that only attack leukemia.)

There's no predictability to how long the GVHD will last. Days, weeks, months... who knows. As long as it's going on, I'll be lubing up and both cursing and thanking my new T-cells.