Here I am SIX years later and it went from the small of my back to up my back, wrapped around my chest, up my neck into the left side of my scalp and starting to make an appearance on my upper arms. With it growing and becoming increasingly annoying and painful I decided to follow the referrals to a dermatologist that seems to enjoy taking on such a complicated case, and not to mention this man is a genius. I did what needed to be done, many biopsies and many tests. I was put on Accutane for 7 months straight after I had Carson, it seemed to help by not letting it grow or crack and bleed anymore, but then it started to grow at a faster rate, and I became more and more uncomfortable. Now I am started down another road, EXPERIMENTAL TREATMENT. Nothing like being a guinea pig to make things interesting.
I am on four different treatments, one is efudex which is a type of chemo to treat skin cancer, also oral medication. I will tell you efudex BURNS BAD, and the absolute worse is the clobex spray I apply to the scalp. OH MY WORD! I could cuss and not be ashamed! I have 30 days to see what happens and I am in the first week, so three more to go.
My fear is that it will consume my entire body, for any woman this does not help all the insecurities we seem to have anyway, or getting an infection and becoming septic if this spreads. I came to terms with the ugly possibilities and told my husband, and his response was "we have been through so much already, but there is nothing we cannot get through together." he hugged me, and I cried. I went the longest time not telling people because at one point I was VERY embarrassed but if you know me, that did not last long and I no longer care what others think of my weirdness.
I will try and keep updates on how things go. Nothing like keeping things interesting! I might have to be the first that starts a foundation or something.