June 27, 2014 was the magic mark of 100 days after my bone marrow transplant! This means that I made it through the most difficult phase of healing from leukemia, but my doctor keeps reminding me to take it easy and go slow because I’m still building my new immune system so I’m still vulnerable.
I learned more about how sensitive I am last week when I had some very minor exposure to the sun. I was always wearing sunscreen and clothing all over my body during three incidents, and just a little sun exposure was enough to create a mild case of skin graft versus host disease.
The initial exposure was when I got a little sun through the front seat of the car as a passenger. Second, I tried driving myself 10 minutes to San Anselmo and got some sun through the car window. Third, I attended and spoke at the ribbon cutting ceremony for a pathway in Tam Valley (about 20 minutes from my home), to honor the late Supervisor Charles McGlashan, one of my personal heroes and friends. Despite carrying my SPF50 umbrella in a shady grove of trees, I still got a little too much sun. So much for the experiments with going out in the day…
The rash quickly spread over most of my body – except my face and neck – so I called Stanford Hospital to find out what to do. My doctor wanted me to be seen immediately, so on July 1, Andy and I trekked the 1-1/4 hour ride to Stanford with me in the back seat of his van, jumping from side to side to avoid the sun, and opening my sun umbrella on the way home to avoid the rays of the sun beaming into the car before dusk.
This mild case of graft versus host disease to the skin is being treated with a topical cortisone cream, and fortunately it’s getting better already. I was very glad that they did not prescribe prednisone, which has a host of negative side effects including further reducing the immune system, and swelling of the body due to fluid retention.
My nurse practitioner Tammy told me that through these trials and errors we’ve learned that sunscreen and clothing is not enough to protect me at this time. It’s really critical that I avoid the sun so that the rash doesn’t get worse, and so I don’t develop other more severe types of graft versus host disease. She said — “enjoy your home” — so that’s what I’m trying to do. I can’t go out during the day unless I have a chauffeur with a clear back seat in their car.
Staying inside during the day is quite an adjustment for me – physically, mentally and emotionally. Stanford is recommending that I completely avoid sun exposure for the next nine months. Hopefully I won’t be as sensitive to the light once I reach the one year mark after my bone marrow transplant (which will be March 19, 2015).
So, in the meantime, I’ll be at home reading, writing, doing yoga, having healthy visitors, meditating, studying and hopefully learning to play keyboards. I never thought I’d be looking forward to summer and daylight savings time ending (I used to love the sun), but now everything has changed. As the days start to get shorter, that means more time I can spend outside at dusk and at night.
Despite this sun sensitivity issue, I am doing really well. I have more energy now than last month, my stomach issues seem to have resolved, my blood counts are good, and I’m sleeping better in my own bed than I was at the Stanford townhouse. I do miss my Mom a lot, but I love being able to see my partner Andy every day and it’s wonderful to be back in my own home.
When it comes down to it, it’s truly a miracle that I’m alive, and I’m endlessly grateful to be healing so well. I’ll make the best of being inside and I’m sure I’ll discover new things about myself.