Bob update: New diagnosis

Bob and Red Kitka

I think I may have posted at some point that Bob has been dealing with some skin issues -- several years ago he had an acute skin rash that came from out of nowhere, it seemed. Back then the doctors were all scratching their head, but it was eventually diagnosed as full-body psoriasis. I had trouble wrapping my head around this, and we went to many doctors in our area, and at UPenn, for alternate opinions. Everyone was in agreement -- it's psoriasis.

Psoriasis treatments
How very lucky we are to have insurance that covers the very, very expensive treatments for psoriasis. Many people, we learned through online support groups, don't have access to these drugs. Enbrel, Humira, and similar drugs are many thousands of dollars but usually very effective.

Treatments don't work!
Oddly, 'spensive as they were, they didn't really having an effect on Bob's condition. The body rash  never really improved much, despite these state-of-the-art meds and topicals recommended on support groups. This winter it was particularly bad, and my husband grappled with constant itching, pain 'like a bad sunburn,' chills, fingertip infections, to say nothing of going through life with "dots" all over. In late January, his hair started to fall out in patches. The dermatologist did another skin biopsy, which was inconclusive but showed a particular pattern suggestive of another kind of problem. Hoping for something more definitive, he did four more biopsies.

Not psoriasis after all
This time the results came back with a conclusive diagnosis, from two different pathologists: cutaneous T-cell lymphoma. In one sense it is bad news, because the 'L' word is a scary word. In many other ways it is good news. Most importantly, the prognosis is good, but also:

• It is a chance for symptom relief -- skin issues, especially full-body skin issues, are a real blow to quality of life.
• The initial treatment is non-invasive,with few side effects.
• It can go into remission -- that's the goal.

 The first standard of treatment is light therapy, three times a week, and with any luck that'll be all that is needed. Normally, I'm all about research and a friend once chided me about my compulsion to go after  a topic and "understand it to death." I read a little about this back when Bob was diagnosed with psoriasis (apparently it is often misdiagnosed as psoriasis), and I've read a bit in the last few days. No more. Sometimes research opens you up to worries that never come to pass, and I don't want to go there right now. The doctor is upbeat, Bob is upbeat, and all the signs are good. That's enough for me...