Hot time under the blue light

Under the blue light before PDT

While I was waiting for the blue light to become available on Thursday (another dermatology patient was using it for PDT), I talked to Dr. Lin (Jennifer) while she biopsied what she calls "little guys." Three of them.

I asked why she doesn't call them little girls.

No particular reason, though when it comes to little girls I enjoyed seeing the video of her eight-month-old little girl laughing her head off about something.

I popped an oxy because I had them in my purse; Melissa said I should take one before ECP (which I had the day before) so that I won't have to deal with pain if the needle slips. I might not have to do that anymore because the new angio needle is working nicely.

I figured if I was going to get three needles in sensitive areas and have pain afterwards, it was a reasonable thing to do.

Note to anyone who thinks this is strange: Oxycodone is actually preferable for me than Tylenol (bad for liver) and ibuprofen and the rest (bad for kidney).

One biopsy on my right calf – a raised and irritated area that she already said was probably a squamous cell after a sent her a photo. And which will probably need another Mohs.

One on the top of my head.

The other on the knuckle of my thumb. Same as happened before with the spot on my ankle (which turned out to be a big deal needing a graft) I had shown this spot that didn't heal to a couple of people who said it was nothing. Note: A spot that doesn't heal is always something.

After all the trouble I had with my last one, it has finally healed. On time to get another. They're getting to know me well at the Mohs Surgery Center at Faulkner Hospital.

My first question when it was done was how long I would need to sit out of tennis. The one on my calf isn't that big but because I have stitches on my thumb, she said about a week.

Although these are a pain, they are not serious except to my mind.

I found out about someone who died from a melanoma that had appeared on the person's neck.

Suddenly the spot on my scalp was a melanoma too...which in my PTSD-y way I followed quickly to my demise. I reasoned out loud to Katie that since I didn't have melanoma in the morning, I probably didn't have it at night after hearing about the other person. Wise child reminded me that just because someone else gets something, doesn't mean I (or anyone other than the person) will get the same thing. Wise friend who had a melanoma and had it successfully removed reminded me that since I'm watched so carefully, they would catch it early before it spread.

I find out in about the week.

The lovely photo of me (wearing my Bev Bloomberg watch) is under the blue light machine at the Brigham Dermatology Center for the photodynamic therapy (PDT) that burns off a layer of skin. I get this done every year. Dr. Lin did it more on my neck because more "little guys" are trying to come up there than on my face, which she said looks pretty good. (All things considered...my addition.) The 16 minutes doesn't sting as much on the neck as on the face.

I had estimated that the driver should come at 4. When he called to check in, I said it was an estimate. When I realized it would be later due to the waiting line for the blue light machine, I called and said it would likely be another 15 minutes.

"Don't leave without me!" I said, remembering a couple of times when that had happened.
He assured me that he wouldn't.

I turned off the sound on my phone during the procedure. When I went to look at around 4:20, I saw that he had called five times and texted once. I called back and said I was coming. He groused, "You said it would be 15 minutes."

When I got in the car he complained some more.

"I never should have taken this job," he said.

He said he is 60 and too old to have to take the trip at the end of the day because he wouldn't get home to Worcester until 9 and was up at 4:30 and they shoulda put the younger person on the earlier shift.

I started to put on my headphones to listen to All Things Considered, but he kept talking.

The phone rang and he had a conversation (while driving). He said it was his son. Then he apologized and said his life is hard because his wife left him after 30 years because she couldn't handle their son, who has Asperger's. Knowing a little bit about this, I asked a question about the spectrum, and, apparently thinking this was a place, he said his son can't get treatment there or anywhere.

On the first leg of the trip the day before, I had a nice polite driver from Kenya. He told me he wants to start his own transportation company because the others are poorly run.

At first I thought this would be another doozy because when we started driving and I asked him to close his window because it was blowing on my face, he complained.

They had given him a bad car where the heat is not regulated and if he didn't open the window he would overheat. Please open the window, I said. We made a compromise and went on to have some political chitchat.

He said he is a liberal but didn't vote for either presidential candidate because both were corrupt, especially Hillary Clinton, who shared classified information on a personal server and put the country at risk.

Not a good conversation to have before getting your blood pressure taken. I pointed out that it wasn't classified, but I didn't want to get into a debate about the FAKE news and FALSE equivalency that got us into this mess.

He asked if I wanted him to lower the headrest on the passenger seat so I could look out at the view. I said that was OK, I had seen enough of the Mass Pike.

At least I had some material to tell my nurse friends at the Kraft Blood Donor Center at Dana-Farber, where I would be for the next three hours for the light therapy.

Dermatology doubleheader and alphabet soup

A post from a year ago, A Little More Pain Today, came up on Facebook with a photo of me standing right near where I'm sitting at Diane and David's house in Newton waiting for more pain to be inflicted on my face this afternoon.

The funny thing is, I do not remember what it was. They all blur together.

The theme for this week is alphabet soup, ECP and PDT.

Internal sunburn yesterday, external today.

ECP: Extracorporeal photopheresis, what I refer to as the blood therapy or sometimes the blood thing, for my graft vs. host of the skin. I talked to another relatively new (to me) doctor yesterday, our second meeting. Sometimes they don't know what to make of me. I said I had played tennis that morning and over the weekend ran (or whatever you would call it) a 10-K race.

It is so much better with the angio needle. I was even able to get up and go to the bathroom without worry of it infiltrating. A new nurse (who had come over from Mass General) took care of me. He was a character, telling me it was his first time but he would try to do a good job. I don't remember exactly what I said but I gave it back to him.

"Like returning a slice with a slice," I said.

Today, PDT, or photodynamic therapy, to remove precancerous cells and any tiny cancers from my neck and face: "a treatment that uses a drug, called a photosensitizer or photosensitizing agent, and a particular type of light. When photosensitizers are exposed to a specific wavelength of light, they produce a form of oxygen that kills nearby cells."

This hurts a lot. I don't know why people do this sort of thing cosmetically. You hold a tiny blower in your hand and move it around while you feel like you're getting the worst sunburn ever. I can't remember the exact time. Maybe 16 minutes. Maybe I should imagine that it is wind blowing on a beach.

Oh and I might also get a biopsy on a weird spot on my calf. Just as the one on my ankle has healed nicely.

Then back home around four. Nothing much tomorrow because I will be carless. That squeaking sound turned out to be a call for new rear brakes. Better write up a storm to cover that.

In between, a good dinner with Diane last night and upcoming brunch this morning with Rook, who is going to be kind enough to drop me at the dermatologist's office in Brookline.

The procedures will not be fun but it's always nice to see my primary dermatologist, Jennifer Lin, who will weigh in on how she thinks the ECP is going. She's the one who used to talk to me about dating. While freezing spots off my skin. Now she is happily married and a new mother. I assume she will ask about me. I'll have to think about which stories to tell her this time. Or not.

Stretching and slogging before Saint Patrick's Race

Doing a plantar fasciitis stretch at Kraft Family Blood Donor Center

Mark Zuckerberg was kind enough to send me a memory from this time of year in 2012 when I wrote that my training for the Saint Patrick's Race was going well – I had run six miles with no problem – but I was worried about the twinges of plantar fasciitis.

Well something is the same: The worry about plantar fasciitis. I think if you counted the number of times over the course of this blog that I mentioned concern about the dreaded heel pain, it might equal or exceed the number of times I expressed worry about leukemia.

At ECP last Wednesday, a doctor and a couple of nurses were all sharing their experiences with and cures for plantar fasciitis. One of the nurses demonstrated how her doctor told her to stretch, and when I got out of the bed I tried it for myself.

A new-to-me resident is overseeing me because I went to a different time slot, 4 p.m. instead of 3. My nurse, Esther, told the doctor that she never saw anyone with graft-vs-host as active as I am. I told her that I still had ripples in my skin and the feeling of a band around my stomach, but the procedure has softened my skin, lessened the swelling in my hands, and important or not depending on your point of view, helped my tennis game.

I'm still planning on doing the race, but the weather has not been conducive to running, and I can't say as I could five years ago that I have run six miles. I did five, so slowly I'm not even sure you could call it running.

Saturday I went to spinning, and on Sunday I ran three miles. I would have gone today but I didn't because of the snowstorm, during which my only activity was going out into the driveway with Maddie. A huge black Lab, about as big as our dog Winnie, bounded into the driveway while her owner shouted from across the street. Maddie seemed to be intimidated because she lay down in a totally submissive position.

I'm not sure when the roads will be cleared enough to get in a good run. I hope I can do it at least once. I would like to not be the very last person to finish. As previously stated, I have gotten incredibly slow.

The other night I dreamt that I was on a dance floor, shimmying up and down. Joe was off to the side watching, and I wanted to show him how I could go all the way down and back up without falling. Up and down. Down and up. It was easy! (When Joe was living here he never wanted me to crouch down on the floor to kiss him goodnight if he was sitting on the floor in front of the TV: He thought I wouldn't be able to get up.)

Interestingly at a tennis clinic the next day, George said I was doing my best forehand slices by bending my knees and leaning over closer to the ground than during a regular swing. So in my dream I was sort of modeling the movement.

From cancer nightmares to flowers and writing

Inside the Smith College bulb show

Over the past few weeks I have gone to more than my usual number of Survivor Journeys blood cancer support group meetings in Enfield and Agawam. It was because I wrote a profile for Dana-Farber on the physician who started the groups. Like me, Jay Burton had AML and is a Dana-Farber patient. (I started to write "was" a patient, but changed to the present tense because once a patient, always a patient.)

One discussion topic lodged in my subconscious and came out as a bad dream. Some attendees who had had Non-Hodgkin Lymphoma were talking about the stages at which they were diagnosed and the tumors they had. AML is a different disease that is not staged and that does not come with tumors, but tell that to the voice in my subconscious.

I dreamt that someone looked at the lipoma that you can see through my yoga pants and said that it looked dangerous and should be removed. I said that it had been tested and wasn't harmful. But the person looking at it said it had grown too large and I should really have it rechecked because it might be cancer after all. Blech. Well in reality I'm going for a checkup tomorrow before the light treatment so I might mention my dream.

On Sunday I met Joe in West Hartford, approximately half-way between us. We had lunch/brunch at Effie's Place, a family restaurant that was as good as it looked on the internet. He is not crazy about the idea of me running the Saint Patrick's Race.

"Are you going to make the doctor's appointment before or after the race?" he asked.

As we used to say as kids, "So funny I forgot to laugh."

I don't buy a lot of new equipment, but I decided I should get a new pair of running shoes. (Brooks Cascadia, really a trail-running shoe but a good fit for my orthotics.)

It was that super cold day but when I got home in the late afternoon I got it in my head that I would try them out by running up Cold Hill. I wasn't that cold so I kept going and got committed to finishing a loop of a little less than four miles. By that time it was getting dark and I felt the cold.

With Literacy Project students Chris and Alyea

The next day, and into today, I didn't feel so great. Not too bad but not great...that feeling that you're coming down with something. So I took today off. My exercise consisted of going from The Literacy Project to the Smith College Bulb Show with our class. I had a memory that involved two of my children wanting to be in a photo with my parents and the other child not wanting to. We took a solo photo of the recalcitrant child, and later my mother did her own version of photoshopping: cutting out the photo of the solo child and putting it next to the group.

I missed my mother.

She would have appreciated the fragrances and the colors and the arrangements.

I told Zoe (the teacher) that I like to think she is around.

When we got back, everyone wrote impressions of the day.

I was helping one man whose mind goes faster than his writing. He jotted down some descriptive words not connected by verbs. He told me he gets confused.

"Stop and tell me what you're trying to say, like you're telling your wife," I said. "Keep your sentences short."

And so that's what he did. He seemed happy about it.

A little. Newspaper training. Goes a long. Way.