CTCL Encourages Going with the Flow

Two weeks ago I posted my plan for all that I would do this year. In last week’s posting, I admitted throwing in the towel on that plan, deciding “to go with the flow” of my life, and letting go of trying to control life’s dailiness.

         I gave two reasons for going with the flow: Meniere’s Disease and Cutaneous T-Cell Lymphoma (CTCL). Last week I wrote about the first; this week I want to explain and explore the ramifications of the second.

         About fifteen years ago, I discovered a pink patch on my arm. A second patch appeared before I saw Dr. Hamilton, my family physician, for my yearly checkup. Noticing it, he said it was psoriasis and prescribed a cream. When it failed to change the patches, I simply forgot about the whole thing.         

         Until Meniere’s arrived in 2006, I seldom paid attention to my body and didn’t even know how to listen to it or what to listen for. And so I mostly ignored what others might call symptoms—aches, pains, patches, rashes, and so on.

         Years passed and in 2011, the patches began to spread—from my arms to my thighs to my lower legs. By now, Meniere’s had made me aware that my body could tell me things. So I made an appointment with a dermatologist. She did two biopsies that indicated I had stage one CTCL.

         She explained that stage three attacked all the inner organs and was fatal. To avoid that, she prescribed a corticosteroid cream and ultraviolent light therapy (phototherapy).

         Beginning in April 2011, I did light therapy for three times a week for nine months. By January 2012, the CTCL was in remission. It stayed in remission nine months. I did more light therapy and it went back into remission and stayed away until January 2014.

         When it reappeared I made an appointment at the clinic. In mid-February the doctor confirmed that the cancer was back and that I needed to begin the phototherapy again.

         So now I am once again using the steroidal cream and having light treatments. Thus far, I have had seven sessions. This will continue until March 27 when I’ll see the doctor again so as to determine if the phototherapy and the cream are working.

         There is a risk that the ultraviolent light will cause other skin cancers, so doing the therapy for nine-months back in 2011 was iffy. This time, we’re hoping that the cancer goes more quickly into remission.

         The wonderful upside of this is that the doctor has told me that no one she’s treated for stage one has ever gone to stage three. So the fact that I’m undergoing treatment is crucial. Also with CTCL, I will most likely keep going in and out of remission for the rest of my life.

         None of this alarms me. If I keep being aware of when pink patches show up and immediately go for treatment, all shall be well.  

         The light treatment is done in an upright cylinder in which there are about forty tall, skinny, vertical, light tubes. I step inside; the nurse turns on the lights; and I stand there nude for a certain amount of time. Right now the time is only one minute and forty-five seconds. I’ll probably work up to three or four minutes, depending on whether my skin burns. That’s already happened once this go-round.

         Taking a shower, slathering sun block on the unaffected skin, driving to the clinic, having the treatment, and driving home takes about two hours. Since I’m out and about I always do an errand or two. So usually on Monday, Wednesday, and Friday CTCL demands three hours of my day.  

         Moreover, because the light treatments tire me out, I always come home and take a long nap. You can see why this and the Meniere’s headaches affect any schedule or routine I might try to devise.

         So now I’m truly getting up each day and doing what my spirit prompts me to do. And—wonder of wonders—I’m feeling content doing that.

         Peace from “Flow Girl.”        

        

Photographs from Wikipedia.