I’ve had an interesting past 10 days or so.
Exactly one week later, April 13, I started hanging out with Suzanne and her dog Prudence at various dog parks and trails around town. I applied ridiculous amounts of sunscreen because I heard chemo patients can burn like a newborn baby.
All that week I began waking up in the middle of the night scratching at my head, ears, neck, and shoulders. I figured I had dry skin and started using my old eczema cream and cooling lotions to treat the itch, but none of it worked.
Kaiser set me up with an appointment to see a primary care practitioner for April 20. This doctor thought I had a case of dermatitis, which is fancy doctor-speak for rashy skin. He suggested I may have had a food reaction to shellfish I had recently eaten and told me to use Benadryl. He was a nice doctor, but I didn’t believe he knew what he was talking about, because…
I have brain cancer! Non-neurological docs won’t touch me with a 10-foot pole because they don’t want to mess with me or interrupt my treatment. And this makes sense. This doctor didn’t want to suggest anything extreme.
I emailed my neuro-oncology nurse practitioner (in Redwood City) and she was very concerned about the rash. She felt it had to do with the amount of Lamictal in my blood now that I don’t have Dilantin to fight it off. Drug rashes can be dangerous and she needed me to get in contact with my neurologist (here at home) right away.
I talked to a neurologist (Dr. P. was unavailable) and he was also concerned. He wondered why the primary care doctor didn’t send me to see a dermatologist. He was concerned it would take a few days to get me to see this other doctor so they could evaluate my rash.
I said, “I could email you some photos.”
He said, “You can’t attach files through the Kaiser email system.”
I said, “No, but I can upload them to a photo sharing site and email you the link.”
He thought I was a genius.
Long story short: They believe I have a drug rash due to my high dosage of Lamictal. The neuro said he has never given a dose that high to someone unless they were 6’5″ and weighed over 200 lbs. Good god!
Between the neurologist and the dermatologist they realized my skin was photosensitive and that I need to wear burly sunscreen–SPF 55+ that shields from the UVA and UVB spectrum. And also, the amount of Lamictal I take will be cut in half.
All of this made sense. Everywhere I had the rash was skin that was exposed to sun while I was on my trips with Suzanne and Prudence.
Brett and I picked up my special sunscreen, I got a straw cowboy hat, and now I will be pale all summer. But there are worse things.