So where were we? A mysterious rash at the end of summer….

That best friend I mentioned, calling out to me from across the parking lot was among  a slew of great coworkers that I had at the time. We worked and played together and we looked out for one another. So, when our accountant sent out an email about something called Inflammatory breast cancer, a lot of the women in the office marched to the doctor.   I was one of them. It had been months and I still had the red, sometimes, pink, other times purple spot on my arm long after the sunburn and the summer faded. I didn’t know how many stops there would be on the road to a diagnosis, but here is how it went for me:

Stop one: My Primary Doctor. My primary, Dr. B,  said the rash would probably go away, but I could see a dermatologist, if I wanted to.  I imagine she was a little bit tired of me. For weeks I had been complaining of exhaustion and pain in my shoulders and knees. She told me it was likely stress.

Stop two: The Dermatologist. I should mention here that I wasn’t used to going to the doctor. Growing up I had a dinosaur of a GP. He had an office in his house and four generations of my family had seen him. While this was sure a time saver when it came to filling out the “family history” section of the intake forms, that was where the benefit of his care ended. With that doctor as my only frame of reference, I didn’t really rely on the medical community to cure what ailed me. For colds and such, I used my grandmother’s home remedies. I didn’t even take Tylenol for a headache.  Going to a dermatologist in particular seemed kind of extravagant—like a totally unnecessary nicety for people who had the extra cash to spend on clearer skin.

So, the day I pulled into a dermatologist was jarring. I sat there in my car looking at the sign that said “specializing in the diagnosis of skin cancer.” Fortunately, it was freezing outside, so despite my reluctance, I went in. I left an hour later with a band-aid over a punch biopsy of the rash on my arm. A week later the biopsy results came back inconclusive. A week after that, the biopsy site wasn’t healing, so I went back. This time, I got the senior dermatologist at this office. She came in and said, “How would you like a nice thin scar that no one will notice, instead of what you have?” Translation: I am going to do another biopsy. This one required stitches and it didn’t heal either. I would have six scars on my arm by the time all of this biopsying was done. I ruefully call them my constellation of scars.

I have a constellation of scars on my arm. I am one scar short of the big dipper.

Dermie sent me for blood work and for a gene rearrangement study. I was convinced this was going to be the answer—I mean what could be more revealing than a look at my genes, right?

Wrong.

The dermatologist was stumped. So, she sent me to another dermatologist. One who was wise, in his eighties, and of  whom she was in awe.  Dermie talked about him like he was Yoda. “He is a master in his field,” she told me. He was older, didn’t use computers, and he didn’t have much bedside manner, but he has seen everything. “You should see him immediately.” I was scared, but this could be it right? I got my hopes up even higher.

Stop three: Wise Old Dermatologist. I brought my Mom for this one. This was another doctor in his home. He was retired, but took special cases (aw, man. I was a “special case”). Stepping into his office was like stepping back in time. It was like being on the set of a doctor’s office from the 60s. The secretary had an electric typewriter and a rotary phone. She told me that all correspondence happened by mail. When I met the doctor, Dr. S we’ll call him, he asked me endless questions and took detailed notes on index cards. He looked at my arm and sent me for more blood work. Later that week, I would get a call at work. “You need to get to Roswell Park Cancer Institute immediately for tests.” I was devastated.

Somehow I had gone from, “hey if you want to see a dermatologist, go for it, but it’s probably nothing, to a lot of use of the word “immediately,” and I was scared. 

I broke down and told one of my coworkers what was going on and as I was pouring my heart out, my boss came over and told me to go home for the afternoon. My secret was out. I took the next day off and headed to the local cancer institute, where my journey really gained momentum.

This story gets better, I promise!
(to be continued)