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.

A night in the ER, with good company

While some of my friends have been sharing photos of themselves on beautiful beaches, I stretched my legs out as though setting up for the pose of bare feet in the sand ... but on Wednesday it was clogs on my feet on a stretcher in the Brigham and Women's emergency room.

That's because after the light treatment for my graft vs. host disease of the skin – ECP – my blood pressure went so high that my nurse paged the doctor on call. My BP was 200 or so over 100 or more.

As previously stated, the nurses are lovely and caring at the Kraft Family Blood Donor Center at Dana-Farber, where I have been getting the procedure for some two years. My nurse sat and meditated with me and spoke in a soothing voice, but it only went up. The doctor said I should go to the ER. A stretcher arrived and off I went.

Luckily Katie had driven me. She sat with me and somehow we passed the hours as I got hooked up to a blood pressure monitor and got blood tests, a urinalysis, and an EKG. Everything was normal. Slowly it went down to a number low enough to be discharged around midnight. Valiant Katie drove back. We got help from listening to Broadway show tunes on Sirius Radio, which is a time-limited freebie with a new car.

The next day, yesterday, I was tired, but I didn't want to let down the three others scheduled for the morning's tennis game at Bay Road Tennis Center. So I went and played, and I wasn't too bad.

Today I followed up with my internist. Beforehand, I took my own reading and saw that it was normal. Still pretty tired but not wanting to give in to it, I went to an exercise class at the Y, then headed to Springfield to see Dr. Berger.

I told him that it had been going up and down, but never as high as 200. When he said it was time for just a small amount of blood pressure medication, I said I had prided myself on being an athlete with low blood pressure. It was disappointing.

He pointed out that I have had a considerable amount of stress in my life, so it is not surprising.

With the Saint Patrick's Race tomorrow, he asked for a reminder of how many years ago I saw him after the disappointing performance that led to my leukemia diagnosis.

It was 15 years ago. Hard to believe.

He asked if I was running, and I said no, not this time.

He will probably run the 10-K course twice. I barely made it one time through last year.

I will go cheer for Ben, just like he used to root for me.

I'm kind of disappointed about not running and also disappointed about adding a blood pressure pill.

A wise person pointed out that feeling like high BP is a failure is the equivalent of a person with kidney disease feeling responsible for it...and not wanted to get treatment.

I have been doing as much as I can to stay healthy, but I can't do away with the stressors.

Also maybe I should cut back on the Fritos and Cheetos.

Of high blood pressure and gratitude

Reading Underground Railroad at Dana-Farber
during light treatment in order to avoid the news

A post that I came across in a blog-sharing group struck me as something helpful to share. I want to get to the part about going on blood pressure medication and not wanting to, and how it got to be this way, but first, an interview with Maya Angelou and various sources on how keeping a gratitude journal is a key ingredient to happiness.

This could be especially helpful these days when the irrational behavior of a certain individual can threaten our own equilibrium.

I did something like this a while back, sending to a friend, and a friend sending to me, five things we were grateful for on each day. It was great for a while but was hard to keep up. This one seems easier. Just three things.

The end of Avenue Q when we saw it way back when concluded with an applause-generating phrase, George Bush is only for now, which was changed when he left office. You could substitute Donald Trump is only for now, but that might not have much of a calming effect because he and his minions are so terrifying.

I would put him third on a list of the reasons for my high blood pressure.

1. It started with the Mohs surgery three weeks ago, and with the knowledge that they were going to remove a larger than usual squamous cell cancer from my ankle and cut a slice out of my stomach, while I was awake, to use as a graft in the hole. A couple more pieces of me chipped away. As I wrote, it wasn't as bad as the anticipation. But the pain was intense enough for about a week that I took double the usual dose of pain medication.

2. My routine was disrupted, the source of my endorphins gone. I was unable to play tennis or go to yoga or even walk very far. The doctor said to limit it to 20 minutes, just for walking the dog, not an exercise walk. I did that gingerly. I also did a little stretching and tried to meditate, but it was hard because I was either in pain or falling asleep from the drugs.

3. Donald Trump. Nuf said.

After the high reading at the Mohs center and another at a local doctor's office, both of which seemed to be variations of White Coat Syndrome, I got a prescription for Losartan (and instructions to drink less coffee.)  But when I took out my old blood pressure monitor the next day and the numbers were normal again, Melissa said it was OK not to take the pill. She said to monitor it, though.

I then made the mistake of sitting at the computer for a long time, writing with breaks to read all sorts of bad news, and remembering that I hadn't taken a reading that day. I should have sat quietly before I did it, but I didn't, and it was 202 over 118. I usually run normal (120 over 80 or so) or even lower.

I paged Melissa, who always gets back to me quickly. (Thank goodness for Melissa, and for caregivers like her.) I asked her if I was having a heart attack. But I wasn't having chest pains, so she said to take a pill and relax and call her in an hour. By then it was back to normal. But she said that after three high readings I should take the pill.

We are going to reevaluate after I am back to my routine. I started with tennis Monday and yesterday.

The nurses at ECP yesterday said to pay attention and make sure it doesn't go too low. This morning it was lower than usual, 106/75. I texted the friend who I've been discussing this with, "Better drink some coffee." We had also been discussing the impact of salt, and she texted back, "Or eat salami."

Today, it was good to get back to yoga. I took it easy, knowing how sore my arms would be if I did every down dog and plank. I left the Northampton Y feeling calmer. But in the car I turned on NPR and listened to a story about the Mexican president canceling his US trip due to Trump's insane claim that Mexico is going to pay us back after we build the stupid wall. I fumed. I do not want my tax dollars to go to that wall.

I definitely wasn't going to take my blood pressure after that.

That gratitude journal could be a wall between sanity and insanity. Tomorrow I will start by writing that a certain big sweetie is bring a little sweetie to South Hadley for lunch.