Of vampire bites and another bad trip

I've been telling people that the three raised, irritated spots on my neck are a vampire bite. At my last dermatologist visit, Dr. Lieu froze multiple spots, including these, that she said were actinic keratoses, potentially precancerous. These three did not go away. On Thursday when I bumped into Dr. Marty, my friend the infectious disease specialist, on my way to my checkup, I asked what he thought they were. "Vampire bites," he said. I guess I'll have to buy some garlic and wooden crosses.

Actually I will apply Efudex twice a day for four weeks. Dr. Lin, my primary dermatologist, said to do this after I emailed a skin selfie to her yesterday morning. So yes, I spent a relaxing early Sunday morning trying to get a good closeup of little bumps on my neck. She gave me her home email so I sent it there, with a copy to work. I'm a little hesitant to bother her, but the spots were hurting and a cause of concern. I have to admit they hurt because I pick and pull when the chemotherapy cream starts to irritate them to the point where they flake off. Reminder to self: Go get a bunch of little bandaids.

MEANWHILE, Last week's two-day Boston trip, with the light therapy on my skin one day and checkup the next, went well medically but ended up being a logistical nightmare that I imagine had medical consequences in terms of rising blood pressure. 

I wrote some of this Wednesday when I was waiting for my 3:30 p.m. ride home:

While waiting for a ride that is already an hour and a half late, after a conversation with an idiotic dispatcher, I'm back on the ride complaint tangent. My checkup with Dr. Alyea was at 1:30. Knowing the wait, I had called MART, the ride provider to medical appointments, to schedule the ride home at 3:30. They said I could always call if I got out earlier. I got a text from a Mark, confirming the pickup. I asked if he could pick me up earlier if I was done sooner, and he texted back, earlier than what? I replied, earlier than the 3:30 pickup. He said no.

I was done earlier, so I went across the street to Starbucks, then went to the pickup location at the designated time and called to ask Mark when the driver would arrive. He said, not until way past 3:30. I said I had to get home. He said, they told me after 3:30, and since it's one-way, it's a discharge, and when it's a discharge, it's always later. I said it's not a discharge, I'm at a medical offices, not a hospital, and he said he didn't know where I was, he was just the dispatcher. Say what?

Well, I often have one-ways when I do a back-to-back. Yesterday I came for ECP, slept at Diane and David's, then got a ride to Dana-Farber for the checkup, and then scheduled the ride home for today. I said, I've been doing this for nine years and I know that it is not a hospital discharge. He said we could keep going back and forth or he could contact the driver to find out when he could get here.

I miraculously got through to MART's complaint line. The woman placed me on hold and said she would investigate. When she got back to me, she said it was a new contractor, they did not understand how it works, that sometimes patients want to go home from an appointment, not necessarily from the hospital. ALSO there was a bad accident, he was stuck in traffic, and patients waiting to be picked up were calling from all over the place.

I didn't think it was unreasonable to have a 1:30 appointment and get home by 6:30. My friend Ken Ross, who would be reviewing The Royal Danish Ballet at Jacob's Pillow, had asked me to go with him. He was going to pick me up for the approximately one-hour trip to bucolic Becket. It hadn't been a great day at ECP, and I was looking forward to it. The nurse had missed the vein, leading to pain and a geyser of blood. A different nurse got it into the right place on the second try, but once the arm has been disturbed, a remnant of pain lingers.

Ken and I texted back and forth. When it appeared I would not be home by 6:30, I suggested going home, jumping into my car, and meeting him for the second act. We agreed on that plan. When the driver finally arrived, he said the dispatcher had sent him too far away to possibly pick me up at 3:30. I did my Facebook Live version of his dialogue, typing onto as he complained that the boss knew he didn't like driving in Boston but sent him anyway, that he has anxiety and phobias and is on several high-potency drugs and is on disability, that the boss actually gave him no exact time for my pickup, that he might not get paid, but he has to pay his bills... 

I felt worse for him than I did for me and gave him a nice tip.

 I probably should have stayed home once I got there around 8, but I was determined. So I drove the hour to Becket and got in for the second part. It was beautiful but very short! Afterwards we sat outside and had a drink and talked. (Mine was only a wine spritzer.) We go way back and have a lot in common and a lot to talk about. That news "thing" clicked right in. I remarked that you couldn't sit down with any old person and have a lively discussion about SEO.

It was after midnight when I got home. By that point I was wired and couldn't go to bed. I made the mistake of going on line and catching up on the latest disastrous news from the border. Note to self: Next time read a book.

I was glad I ended up going, but the next day I could barely move, and it took a couple of days to recover.

Off, off, damn spots

I have been telling people that I had a nose job as a way of explaining the bandaid across the bridge of my nose. It is near the spot where you usually got a pimple right before a date in high school. It is making me cross-eyed.

It is covering a spot I had biopsied at my visit to the dermatologist on Thursday. She also biopsied one on my cheek as a possible squamous cell cancer. I have had these before. It is par for the course. (Now that I write that, I am wondering what it really means, but it sounds fitting.) I hope I don't need a Mohs surgery on my nose. I'll find out this week.

A young resident actually did the biopsies while Dr. Lin supervised. I forget her name. Something with an R, so let's say Roberta. She called me ma'am. I said to please call me Ronni. She said, "You can call me Roberta." I'm not sure why this annoyed me, but maybe it's because she looked like she was about 10 years old.

She came in first to examine me and look at all the raised spots on my hands and also at some on my wrists and neck. I told her I was applying a cream called Carac once a day. I have so many creams, I forget what I am supposed to do with which one. When Dr. Lin came in and "Roberta" gave her summary, she said I told her I had applied the cream once. Jennifer – Dr. Lin – said that wasn't going to be very helpful. "I told her once A DAY," I said. Like I said, annoying.

Jennifer said I could hold her hand while the resident did the biopsies. I said I wished she could transplant her smooth hands onto me. Afterwards, she froze some of the spots. When they heal, I am going to apply a stronger chemotherapy ointment called Efudex to my hands and my wrists. It is going to turn them bright red but hopefully will help clean them up. This is important because the spots can be precancerous.

For the same reason, she scheduled me for another photodynamic therapy, or PDT, for my face. That is the procedure that basically fries the top layer of skin, which later peels as though you have had the worst sunburn. I said I wished she could do it on my hands. She said they could, but the ointment will work better.

Even though I am on a small amount of prednisone – 1 milligram a day – it seems to be the culprit. Melissa said my liver enzymes looked stable so when I go back to see Dr. Alyea in two months I will bring up the subject of stopping the prednisone. Again. Bringing it up doesn't mean getting off it. But we will see.

With all the serious side effects and other problems that people have, I feel silly stressing about my hands. Maybe it is because they are right in my view and it is hard to not look at them. They are the only sign that something has happened to me. The sun exposure from playing tennis doesn't help. I lather on sunscreen and even bought sun protection gloves but I probably didn't wear them enough.

Sometimes when I'm stressed (I'm sorry, this is gross), I don't even realize that I am picking at them. When Katie catches me doing it, she says, "MOM!" I have been told that people are not staring at my hands or even giving them a thought. I'm sure that is true. Trying to let it go. Maybe I'll start a new trend of going back in time and wearing ladylike white gloves...with my tennis skirt and sweatshirt.