I am 60 today. I have DSAP. I am so grateful for both.
Decades ago I began seeing splotchy red spots on my arm. The spots would get worse in the sun and itch in heat. Warnings began coming from loved ones: Get that checked. It could be the beginnings of skin cancer. Beyond Googling the condition (and finding that friends were correct, my arms looked suspiciously like basal cell carcinoma) I ignored it. Part of this is the reason all of us ignore our health: I was busy. It didn’t interfere with my life. I am invincible. And it’s just how I am. Ask my kids: unless it’s bleeding … you’re fine. I once made Lindsay stay on first base after her hand got hit by a softball. She was crying. It hurts. It’s not bleeding. You’re fine. She finished the game with a broken thumb.
In June of 2018 I married Mike. A man who loves me and wants to raise grandchildren with me. He insisted I get my arms checked. I went to Dr. P, a dermatologist whose concerns mirrored my Google intel. In fact, she suspected it was second stage squamous cell carcinoma. She isolated some areas as potential advanced melanomas. She gave me a prescription of a topical chemotherapy cream which I was to use for 4 weeks. It’s brutal, she said. About one week into use it start will start burning down several layers of skin. It will leave angry, red, open sores. It will be ugly and painful. After 30 days she will biopsy the remaining spots and get a clear picture of the status and next-steps treatment.
I Googled the cream. The reviews matched the physician’s prediction: painful, ugly, agonizing. Many users said they quit mid-way into the 4-week treatment giving in to pain or vanity. I began the treatment nightly, faithfully as instructed. One week. Nothing. Two weeks, still clear. I called Dr. P. I could hear the head scratching over the phone. Keep going, she said. Three weeks, four weeks. No change. I went to my follow-up appointment convinced that I truly was my Pioneer-Woman-Mother’s daughter: I am impervious to chemotherapy. The dermatologist said she had never seen such a thing. (Now, to be fair, I have houseplants older than this doctor, but she has the MD degree on her wall and has shown every sign of competence.) She scraped a small part of my skin and sent it to a pathology lab in Boston.
Five days later the lab results were back. It’s not melanoma, she said. It’s a rare skin disorder called “disseminated superficial actinic porokeratosis” or “DSAP”. Less than 200,000 people in the world have it. (I'm special!) It has no known cause except it is believed to be genetic. Most affected are women and most trace their lineage to Ireland and Scotland (Yep. Me. Thank you Ancestry.com.) It gets worse as the afflicted hit middle age (check) but other than being similar in appearance there is no apparent link to cancer. It is unsightly and, at times, itchy but other than that DSAP is no more harmful than freckles. That’s good news, right? I said. Yes, she said. She wanted me to come in to look at ‘treatments’ - Vitamin D, ultraviolet light therapy or something called Grenz ray therapy (on my Google list.) All experimental - there is no known cure. Why? I don’t have cancer, right? No, you don’t, she said, but you may be able to diminish the look of the spots and patches.
Back to paragraph one. It’s not bleeding.
I elected not to go back to Dr. P for the cosmetic enhancing (maybe) treatments. I didn’t have cancer. I’m extremely grateful. My arms are ugly. They are beautiful. They are healthy. They still work. They are mine.
I did find that there is a private facebook group for sufferers of DSAP (Of course there is.) It is an active forum of mostly women from all over the world — heavily concentrated in Europe and Australia. To be fair, many of these women seem to have much more serious cases than mine: more visible and pronounced “spots.” There is a lot of good diagnostic information on the site — this feisty group of non-cancerous women know more about DSAP than most doctors. (MY doctor until 10 days ago.) Most like me, were initially diagnosed with pre-cancerous melanomas. In between the posts on experimental treatments, herbs and creams, UV Light treatments and, yes, even canine steroid treatment, there is a desperation to rid themselves of these spots. Angst. Obsession even. I marvel at the hours and dollars spent to have spot-free limbs. I’m tempted to post MacBeth on them. “OUT Damned spots!” I didn’t.
One woman said a side effect of DSAP was depression, her inability to deal with the appearance of her skin. Another called herself a “contagious freak”. (It’s not contagious.) Still another said she had nightmares that the rash-look ing spots took over her body. A woman from Australia certain her husband is having an affair because he can’t stand to look at her.
Another thing I should say about the women in this closed group: the vast majority are much younger than me. DPAP begins showing up as early as in the teens. Yesterday I was tagged and “welcomed” as a newcomer to the group and asked a question: What are your thoughts on having DSAP? I haven’t responded. But I want to. I want to say:
I am grateful. I don’t have cancer. Starting there: let me tell you about your arms from a woman who has had hers 30 year longer than most of you. Your arms are a literal extension of yourself. While today it seems the cosmetic appearance of these extensions is of transcendent importance, it’s not. These genetic tattoos will not define you. What will? What you do with those arms. The babies you hold, the people you serve, the stars you reach and the children they raise. The candles you light and spirits you lift. The hand you hold and the partner you hug; the people you gather and the relationships they build. The words you write and pictures you draw; the music you make and the tapestry you weave. That is what arms are for. Be grateful. You don’t have cancer. God willing you have years to live and love with your arms.
I’m 60. I don’t have cancer. I am, quite literally, comfortable in my own skin. For that I’m grateful.