Thursday, March 29, 2018

Kafkaesque time in dermatology land

Several weeks ago, I emailed my dermatologist with some questions and concerns. If I catch her at the right time, she often responds quickly. But if I don't, my email can quickly drift down to the bottom. She told me that if I didn't hear back, I should call, so that is what I did about a week ago.

I spoke to a nurse who is new to the practice. I gave her my list. She said she would get it to the doctor.

When another week passed, I called again (yesterday) and spoke to someone at the desk. She said that the best way to get in touch with the doctor is to email her.

"No, and no, no, no!"

I used to say this to my kids when I wanted to make a point. Although I didn't say it to the person on the phone yesterday, I wanted to. Instead I explained that I had already emailed, and then spoken to someone, and neither had worked.

So she patched me through to the regular nurse. I told her I wanted to know which creams, lotions or potions I should put on different kinds of spots and also said that I wanted to change my appointment in May to a regular checkup instead of a repeat PDT, or photodynamic therapy, as my doctor had planned, a departure from previous years when she has only done the painful "face fry" once a year, in the fall, when I am not outside as much as I am in the spring. (It's bad to be in the sun after it.)

"You're not high maintenance, are you?" she asked.

She said it was a joke and I knew it was a joke.

My answer was part joke and part serious.

"This is what happens when you have four bone marrow transplants and I'm trying to be a freelance writer but I spend half of my time following up!"

The practice, Brigham Dermatology, used to have a wonderful care coordinator on whom I could count to get things straight. I miss her because not only was she efficient, we had also become friends. One time when she helped me out in a pinch when I was in Boston and needed a suspicious spot looked at, I had to hang around and wait a while. I didn't mind because I was glad that she had squeezed me in, and I used the time to get her a little something for her desk. It is frustrating to have things run so smoothly and then turn into a bit of a free-for-all with nurse #1 who I spoke to last week apparently never getting the message to the doctor and my having to call again and explain the whole situation to the people at the desk and to nurse #2.

One of my problem areas is a new divot on my right thigh. After my last appointment with my primary dermatologist, the dermatologist in charge of my GVHD of the skin saw me in the hallway and graciously, on her lunch hour, took me into a room to look at the indent. She injected several tiny shots of cortisone into it and said if that didn't work, to use a cream that I used before, Clobetasol. Turns out I didn't have any, so I told nurse #1 last week that I needed a refill. She asked if I wanted cream or ointment. I said cream, which I had before. When I talked to nurse #2 yesterday, she said, oh, it is very expensive and your insurance doesn't cover it any more. Will have to wait for an alternative.

On my left thigh I have a lipoma (biopsied and deemed not problematic). Maybe I could suggest taking it off and using it to plug the hold on my right thigh. Or not. But at least I would be more balanced.

I could use my dermatologist's home email. She gave it to me, but I hesitate to use it unless it's especially pressing, say, for example, waking up in the middle or the crack of dawn to send her a photo of a spot that is freaking me out because I'm sure it is a melanoma. She is always reassuring, pointing out that for some reason bone marrow transplant patients tend to get squamous cells. I have had one basal cell (in my ear) and more squamous cell skin cancers than I can count.

Meanwhile I need to get to the dentist because my "teeth" fell out...well, actually, it was the temporary that he put in last week in preparation for getting three crowns.

I had been very careful and was just eating something soft – a croissant – when I had that bad feeling of something odd floating around in my mouth. At least it was not the nail that a friend found in her food when eating in the restaurant across the street from The Republican.

You never know what can happen.

Saturday, March 24, 2018

Needles: The bad and the good

Yesterday I got to double my pleasure by listening to the grating sound of Trump talking about signing the $1.3 trillion spending bill at the same time as my dentist was drilling three teeth to shave the tops off in preparation for three crowns.

Alas, I found out at a previous visit that I had worn down the outsides of the remaining teeth on my "good" side by favoring it.

Did I say that over the course of the nine years after my fourth bone marrow transplant, I have lost 12 teeth?

The good news is that my dentist is a mensch who gave me a nice discount and that,  just as importantly, he and his assistant gave a running critique of the orange man on TV and the Republicans supporting him.

When Trump said something along the lines of it being a very big bill that took a long time to read, Iris (his assistant) and I laughed so hard that a chunk of something or other popped out of my mouth. I couldn't say much but if I could, I would have agreed when my dentist said, "Republicans in Congress are all idiots."

I was whining a little when I first came in and sat down in the chair. My dentist reminded me that I have been through so much that a little shaving down of three teeth, plus the novocaine, is nothing. Perspective helps, but still, there is something about getting multiple novocaine sticks in your gum, and having three teeth ground down, that is nerve-wracking.

At least it was preceded and followed by some better things.

The Friday morning round robin in Enfield was great. I played well and had a good time, and remembered, as I sometimes do, that it was not always so. Such as in the bad old days when I had to run off the court and throw up, or when certain people complained about playing with me. More of the thing where perspective helps.

After the dentist I went to Amherst Community Acupuncture, where treatment is more affordable than private sessions. I originally started going because when I wrote about the pain of having and treating neuropathy, I interviewed a sufferer who said acupuncture helps. The jury is still out as far as the tingling in my feet is concerned – I think it might be taking the edge off – but I am certain it helps overall in generally settling my nervous system down.

And the setting is itself soothing. People sat around, not wanting to leave. As often happens in these parts, when the conversation turned to where you are from, two were from Manhattan (myself included) and one from Brooklyn.

It was a good ending to the busy day, but still, when I got home, my whole lower left gum was throbbing, and I had to take a little something for the pain.

Monday, March 19, 2018

Not running, but playing a role in road race

The crowd in downtown Holyoke waiting for the race to begin
I could probably have built off my reasonable showing at the Hot Chocolate Run to train for this weekend's Saint Patrick's Road Race, but after last year's dramatic finish (euphemism alert), I decided to give it a break.

Someone said maybe it's time to call it quits, but I don't necessarily think so.

In any case I enjoyed taking Ben and a friend to the race, cheering them on, and, after much searching in the crowd, finding Ben and giving him a lift to where a bunch of them were going for beers, finding a nearby coffee place, then going back to get him and bringing him home.

If I closed my eyes, I could have been in the way old days of driving him around when he was a kid.

Since it's the 15th anniversary of the day when my poor time in the same race led to my leukemia diagnosis, I wanted to be involved even if not running. Being the support staff brings its own type of reward. And as I wrote in my last post, Ben cheered me on when I ran, and it felt good to do it the other way around.

It was interesting, for a change, to see the runners from start to finish, even though it was cold and windy. I got a good look at each of the starting groups and then walked over to the finish line after the last runner took off. It didn't take long before the winner came through. Those top runners all had such beautiful strides. The colorful garb that had helped see me through when I was struggling was still in evidence, such as a girl dressed as a unicorn, complete with a horn, and green as far as the eye could see.

My plan was to run when I got back home, but all in all I had walked about three miles – in addition to jumping up and down to stay warm – and that was enough for the day.

Friday, March 16, 2018

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.

Friday, March 9, 2018

On juggling too much and spacing out

When stirring the oatmeal, she had a moment without anxiety.

Then she thought, "I'm not anxious!" And the chattering began anew.

I thought this would be a good description in a novel or short story about a character who overthinks. Or maybe a caption to a New Yorker cartoon caption mocking a character's earnestness.

What is there to be anxious about?


I actually started this blog post about a week ago and then forgot about it.

It has been a period of forgetting and remembering and realizing that I am doing too many things at once, none of them particularly well.

I missed a couple of deadlines, not by much, just a couple of days, attributing it to the short month of February where I was thinking two stories were due at the end of the week (March 2) instead of the end of the month (Feb. 28), which could be solved by writing EVERYTHING down.

I therefore rededicate myself to writing everything down.

At both of my newspaper jobs, I can honestly say I never missed a deadline.

That desk calendar right in front of me really helped. I have a desk but I prefer writing at the kitchen table looking out at the yard, and a desk calendar would not help the feng shui of the kitchen, which is my favorite room.

I had a period of not much going on and then asked for more work and got it all at the same time.

This would also happen at the paper, but it was easier to juggle in those days. Sure, I had kids' schedules, but I was lucky to have a job where I could integrate them into my work life.

It is those trips to Boston that can sometimes throw me off.

Last week was particularly challenging.

ECP on Wednesday (the internal sunburn to tame my graft vs. host of the skin) and PDT on Thursday (photodynamic therapy to head off skin cancer by burning the top layer of skin off my face, aka face fry), and the anticipation of the combination plus the combination itself threw me off.

Plus, the face fry HURT a lot for a day or two, with oxycodone-level burning and stinging. It subsisted pretty quickly, but the thinking about it didn't.

I have it done once a year. My dermatologist said she heard it works better when you do it twice a year, so I'm scheduled to do it again in May.

Throughout the 15 years of dealing with this (crazy, isn't it?), I always do what they say.

I figure, after all, that I am at a world class hospital and they know what they're doing.

However, I emailed my dermatologist to say I would really like to avoid getting it again this spring.

You have to stay out of the sun for a few days after it, and that's when I want to be outside. I'm not supposed to be out in the sun as much as I am as it is, and this adds another layer of sensitivity.

I NEED to do the tennis and the running (OK, slow jogging) and the walking because those are as important as my big overflowing bag of pills.

In the inclement weather the past week I decided to go swimming one day. Like any kind of exercise, it's better if you do it consistently. I had gotten to where I felt OK with it, but skipped so much time (it's not my favorite), that when I got in the pool it was hard to get in the rhythm. Near the end of 24 laps (the amount that I had decided to do), I tried to take a Zen approach – counting laps with no chattering. A friend who used to run a lot says he has switched to swimming and has managed to get the same high. I'm not a true believer, but I have gotten a little bit of that in spurts. It is nothing like when in the old days of running, though.

I got about half the length of the pool in quiet swim mind mode before I started thinking again.

It's better than nothing I guess. And I have to say that when I was finished, I felt virtuous and nicely stretched out.

Any kind of exercise is good for anxiety, for sure.