I was diagnosed with Mycosis Fungoides, a form of Cutaneous T-Cell Lymphoma on February 29, 2012. I decided to create a blog so that I could explore the emotions and issues surrounding my diagnosis, treatment, and life in general.
My story really begins in 1993. I have had eczema since birth, but for the most part it was mild and very manageable. Only rarely becoming even annoying. In 1993, I noticed a quarter sized circular red spot on my lower back. Around that same time I also had eczema around my stomach and upper legs. That summer I went to the swimming pool every day and would lay out to "tan". I am extremely pale and don't tan in the slightest, but I would lay out to dry off and relax. After a summer of laying out in the sun everyday, the eczema on my stomach and legs had disappeared. The spot on my back never did, but it was covered by my bathing suit.
I didn't think much of the spot for a couple years. By early 2000, the spot had grown to the size of a poker chip. It was just pinkish red and occasionally dry and peeling, but mostly not a big deal. By 2004 it was just smaller than a dollar bill. Over the years I'd had several family doctors look at it, a couple prescribed creams such as Elidel. It stung a whole lot and I couldn't stand using it longer than a week. No one ever recommended I have a dermatologist check it out. In the summer of 2011 it started growing at a faster rate and several other spots showed up. All of the new spots were between my shoulders and knees.
My wife asked me to see the doctor about it, but I put it off. Doctors had looked at it before and were never concerned. She finally called my mother and the two of them found a reputable dermatologist and made the appointment without telling me.
On January 30, 2012 I went to see Dr. Lisa Pruitt. She first did a skin scraping to test for fungus. It came back negative right away, so she took a biopsy. It had never even crossed my mind that a biopsy would be needed. I was a bit scared, but not really concerned. The doctor said she'd call in a week with the results of the biopsy and I scheduled a followup appointment for February 16th. After the biopsy, I went back to work. The biopsy spot was sore and the stitch was itchy. I was a bit emotional at the thought of having needed a biopsy. After the first day I wasn't as worried though. After the first week went by and I didn't hear anything from the doctor, I figured everything was fine, they would have called me if there was a problem.
On February 16th I went to my afternoon appointment. The doctor came in with paperwork and explained that some things came back suspicious from my biopsy, so the lab wanted to do more testing on it. The doctor had just gotten those results back which is why they didn't call earlier. The doctor said it came back as probable mycosis fungoides, which she explained was a form of cutaneous t-cell lymphoma. She said it wasn't definite, but couldn't be ruled out. She wanted me to go to a mycosis fungoides expert in Dallas to get a more accurate diagnosis. At this point I was extremely scared. I may not have known what mycosis fungoides meant, but I did know that lymphoma meant the "c" word. I tried to keep it together until I got home and I was mostly successful. When I got home, I told my dad who by pure chance was visiting from California. My daughter came home soon after so I had him take her out to the mall so my wife and I could have some quiet time to talk and start to process this curveball. Part of the difficulty was that the dermatologist didn't come out and say yes, you have this condition. I was confused about what my test results meant, there were numbers, some were positive, some were negative. Did this mean I only kinda had this condition? It took me a couple weeks to even think of googling the skin stain results. I found out that the negative for CD30 just meant it wasn't hodgkin's lymphoma. On February 29th, I went to see Dr. Amit Pandya at UT Southwestern. I got to don the oh so stylish fabric gown (a definite improvement over the paper easily ripped one at the dermatologist). After the resident took my history and check me over for all my spots, Dr. Pandya and a whole team of doctors came in. I laid down on the table and tried to maintain some dignity while they conducted a full body search for every possible spot. A new one was found under my arm.
He then explained that yes, I have stage 1a Mycosis Fungoides. He recommended light therapy which he was optimistic about since my skin is so pale and has responded to the sun light in the past.
I've done a bit of research about it all since then, realized that google image searches will just freak me out, and learned about the questions I should have been asking when I was too stunned from the diagnosis to think straight.
I am supposed to start Narrowband UVB treatment this week. Question #15 I should have asked, what are the side effects of the phototherapy?
I have an amazing family support system. I am extremely lucky that this was caught while I was still stage 1a. I feel very fortunate that my dermatologist didn't look at it and say it was eczema and not a big deal just like every other doctor had done. I am extremely happy that she did the biopsy. I am over the moon to have decent insurance. I am nervous about the treatment, side effects, burning, and if it will work of if I'll need chemo. I hate that every itch, ache, or pain panics me now.
