Day +1042: Blinded by the light…

“Revved up like a deuce
Another runner in the night”

10/7/2013: It’s a beautiful (to me) rainy day here – we were long overdue. The tagline is misleading except that it popped into mind as I contemplated the two subjects of today’s post. It’s from a song with some of the funniest misheard lyrics of all times. I always heard the second line as “wrapped up like a deuce” and that’s the thought that hit me the first time I tried on my new lymphedema mask, pictured left.

Lymphedema Therapy

I had my last session with the therapist on September 11th and was measured for my custom compression mask that I picked up last Tuesday. I’m supposed to sleep in this monstrosity every night but haven’t quite yet summoned the gumption to try. The sales rep assured me that it should help with my lymphedema anytime at resting heart rate, so I’m wearing it now as I write, minus the removable eye and mouth pieces. The mask is composed of soft, stretchy material lined with varying thicknesses of dense foam, and quilted. It has an adjustable strap that closes with velcro at the top of my head with another behind my neck. There’s a large open area on the back of my head. The fit is intentionally snug. Along with this, I continue the self-massage and facial contortion exercises I described on Day +999 (“Well, we all have a face that we hide away forever….”) Fortunately, my lymphedema is not so severe that I need the mask nightly. I also should order a wedge pillow to elevate my head slightly at night – just haven’t gotten around to doing it yet. I’m very grateful to have had the mask donated jointly by the manufacturer and distributor.

Dermatology – chronic cutaneous sclerodermoid GvHD

After reading Kathy’s comment on my last post, I realized I’ve mentioned the spot on my back quite often over the past year or more but have never attempted to document the progression. For myself and for others who might have similar symptoms, I’ll try to do so now. Note that the described changes occurred gradually over months – very slowly the first year and more rapidly in the last 6 months.

The photo on the right shows the spot just before I started phototherapy last week. Sorry it’s a bit blurry. Click on the image to zoom in. This started as a small dry, scaly spot about the size of a nickel, first noticed by my physiotherapist in November 2011, 11-1/2 months after my bone marrow transplant. I called it GvHD almost from the start although my hematologist was the only one of my doctors who agreed with me. The spot gradually became larger, darker and the skin thicker. Michael and I think this is my sequence for the lesions on my back:

  1. Intermittent brief, sharp, stabbing pains before any visible change.
  2. Development of what the dermatologist calls “cigarette paper” skin (thin, fragile look)
  3. Development of striations (visible in the photo above the brown spot) – largest area currently about 5″x8″
  4. Hyperpigmentation (brown spot approximately 2″x4″) plus other isolated splotches on arms, legs, back, and abdomen
  5. Hardening/thickening of the darkened skin
  6. Development of spreading pink center starting in the same location as the original dry spot – now about 1″x2″

The large brown patch is sore, as are smaller ones up near my shoulders on both sides. My entire back feels itchy and irritated most of the time. The scattered brown patches on my arms, legs, and abdomen are not thickened and sore like the ones on my back. They appear mostly at contact points – inside upper arms, between thighs, around waist, and under breasts.

Sometime during the last year, my abdomen became very pebbled; I’m not sure exactly when as I assumed it was cellulite and didn’t pay much attention. Dr. Gaspari at University of Maryland noticed it right away, the reason he suspected sclerotic GvHD and ordered the biopsies. Also, when I stretch my arms and legs out, they look vaguely “lumpy” instead of smooth. The change is subtle, and my skin is generally rather loose, so I didn’t notice right away. My transplant doctor noticed the changes on my lower legs last visit.

I’m not sure if it’s related but I’ve felt increasingly stiff, sore, and tired over the past months. I hope I don’t sound too miserable – really, I’m not. I’m primarily concerned with stopping the progression before it becomes worse.

My doctors have all said that the presentation of my GvHD is atypical, so this information may not be useful to others. On the other hand, it might be more common than they think and simply not being diagnosed.

The hour grows late and the post long. I’ll save my discussion of the UVA1 therapy for another day.



  1. Again atypical! My dear, I know you are special but I would really like it to manifest itself in other ways. Love you.

  2. Boy Karen, this would sure mess up a good kiss good night wouldn’t it?
    Wishing you well and know you are in my prayers every day.

  3. Karen, My whole body has the cellulite look, which is GVH of the skin. My left arm will not totally straighten out either.

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