Two Doctors For Two Diseases Of The Skin

It might seem odd to have back-to-back appointments with two dermatologists in the same office, but it’s better than making two trips for my two diseases of the skin. I had to do it once, and it was a hassle, because the office is 90 miles from my home.

The two doctors

Dr. Jennifer Lin is in charge of the top layer of my skin. She looks for skin cancer, potential pre-cancer, and actinic keratoses that may or may not turn into cancer. She decides what to biopsy, what to freeze, and what to treat with Efudex or some other cream.

Dr. Stephanie Liu is concerned with the bottom layer – the subcutaneous fat. She’s a specialist in subcutaneous dermatology. She oversees treatment of my graft vs. host disease (GVHD) of the skin. The condition occurs after a leukemia patient like myself gets a stem cell transplant and the donor cells attack the skin.¹

Double appointments, double fun

Recently I saw Dr. Lin at 8:30 a.m. and Dr. Liu at 9 at Brigham and Women’s Dermatology in Boston. Dr. Lin identified 10 or so little squamous cells on my neck, face and arms. They were too small for her to biopsy. I used to think that these squamous cell cancers in situ – or on the skin – needed immediate removal. But now that I am an old pro, I understand that they grow slowly.

She froze them and told me to apply Efudex for three weeks. I was sitting there, red and sore, when the nurse said I had to get dressed, go across the hall, and get undressed. Luckily Dr. Liu came over to spare me that inconvenience. GVHD does many weird and unpleasant things to your skin.² Looking up the definitions, I had to close my eyes when scrolling through the images.

My symptoms include:

• Erythema – reddened skin – on my hands and in patches on my legs;
• Scleroderma – thickening and hardening of the skin;
• Rippled or cellulite-like scarring on arms, abdomen and thighs;
• Positive prayer sign – the inability to completely close gaps between opposed palms and fingers when pressing hands together in prayer position.

The beginning of GVHD

The signs of GVHD of the skin started two years ago. It was seven years after my stem cell transplant. I was surprised. They said it can happen anytime. My abdomen felt like it had a bowling ball, or maybe a baby, in it. The skin also hardened on my thighs. It is not skin cancer. But it is not pretty.

The hardening in the fascia feels like a band across the bottom of my abdomen. It pushes my stomach out. It is uncomfortable. As a bonus bummer, many of my clothes don’t fit.

Success with treatment

My skin has gotten softer, and my body more limber, thanks to a treatment called extracorporeal photopheresis (ECP) for graft vs. host of the skin. Blood is removed, treated under light, then returned. The three-hour process can be an ordeal. But I have learned to enjoy the company of the nurses and the chance to take a nap.

Dr. Liu says she’s happy that the lumps and bumps are getting softer. I am not happy that the lumps and bumps are still there. But I’m still here, and that is something.