“I said something on the surface
Well it kind of makes me nervous
To say that you deserve this
And what kind of God would serve this
We will cure this dirty old disease
“Well, if you’ve gots the poison, I’ve gots the remedy
The remedy is the experience, this is a dangerous liaison
I says the comedy is that it’s serious
This is a strange enough new play on words
I said, the tragedy is that you’re going to spend
The rest of your nights with the light on
So shine the light on all of your friends
Well, it all amounts to nothing in the end
“I, I won’t worry my life away
I, I won’t worry my life away”
9/29/2013: Greetings and Happy Autumn! We’ve been busy decorating the house for my favorite month, October….anniversary, birthday, Halloween. Last year this time, we were preparing for surgeries – has it really been a year already?!
I had back to back appointments with University of Maryland and Johns Hopkins dermatologists on September 18th.
At University, we got the official results from Grand Rounds. The resident, Dr. Schleichter, saw us first and said there’d been a lot of discussion and disagreement at the meeting after they’d all examined me on August 27th. Some thought I might have localized scleroderma or morphea. One pondered why treat at all since it’s hidden under my shirt. I was appalled that any of them thought the issue is cosmetic! However, in the end, all were in agreement for a diagnosis of sclerotic GvHD with recommended phototherapy treatment.
While awaiting Dr. Gaspari, Michael and I simultaneously noticed a black hand print about 10 feet up from the floor on one of the walls. We looked at each other and had a good laugh as we envisioned someone literally climbing the walls, trying to escape the small, windowless examining room.
Dr. Gaspari reiterated the sclerotic GvHD diagnosis and recommended four months of PUVA therapy, thrice weekly. I told him my transplant doctor at Johns Hopkins said PUVA was only good for acute GvHD, not chronic, and said the proper treatment is extracorporeal photopheresis. (Recall that my transplant doc didn’t even acknowledge I had GvHD until after I’d been diagnosed at University, despite showing him my symptoms several times over the past two years.) Dr. Gaspari remained professional but disagreed, “My experience has shown otherwise. I’ve had very good results with PUVA.” Michael and I told Dr. Gaspari that we have a lot of faith in his experience and expertise and would like to continue seeing him but get treatments at Hopkins because I’d had my transplant and other cancer surgeries there. He was very understanding and offered to help make coordination of care as easy as possible for me. He knows Dr. Sweren, the Hopkins dermatologist, very well and will forward notes and medical records to him. Ironically, Dr. Sweren actually trained at University of Maryland. I’m to follow up with Dr. Gaspari twice a year. He said he’d be honored to keep me as a patient.
We then headed two miles crosstown to see Dr. Sweren at Johns Hopkins. He lacked the great “chairside manner” and graciousness of Dr. Gaspari but did seem very knowledgable and provided excellent technical information about the various phototherapy options. Interestingly, he too disagreed with my transplant doctor’s recommended treatment of extracorporeal photopheresis, believing either PUVA or UVA1 would be preferred in my case. We toured the phototherapy room and met a couple of the nurses. I asked if the goal is to stop the progression of the GvHD. Dr. Sweren said, “No, our goal is always try to make it better.” It will take a long time to know if the treatment is effective, and it does not provide a permanent cure. Both Drs. Gaspari and Sweren said that treatment cycles often need to be repeated periodically. Dr. Sweren reassured me that with phototherapy, a patient isn’t locked into a particular therapy – if one isn’t working out for whatever reason, it’s easy to switch. Also, it isn’t a big deal if a session is missed now and then.
So, I finally have a diagnosis of sclerotic GvHD confirmed by my transplant doctor and dermatologists at both University and Hopkins. It doesn’t appear to be limited to my back. I just didn’t suspect the other areas because I didn’t know what to look for – the pebbled skin on my abdomen and the subtle “lumpiness” on my arms and legs. I’ve also been increasingly stiff and sore all over. Both Michael and I believe that I’d not have been diagnosed at Hopkins if it weren’t for my consultation at University of Maryland with Dr. Gaspari. After hearing about the three phototherapies, those of you who know me won’t be surprised to hear I’m going for the latest and greatest technology, UVA1, more widely used in Europe than in the United States. Hopkins is one of the first US facilities to offer full body standing treatments using the futuristic looking machine pictured here. That’s Dr. Sweren on the right. I’ll write more after my first treatment tomorrow!