Saturday, August 24, 2019

For starters, birthday kisses from the dog

The first words out of my mouth today (at the crack of dawn, as my father used to say) were, "Go away, it's my birthday," but when the dog who doesn't bark made her intense yelping sound, I got out of bed and got down on the floor for our morning routine.

My arm over her back, her paw over my arm. I rub her belly and back and we look into each others' eyes. That is my morning medicine. I tried to take a photo, as you can see, but she doesn't like it. She went across the room and I tried it again. The sexy attire I'm wearing is one of my father's T-shirts. I had a drawer full of them and gave a few away and now I think I gave away too many because I could wear this one down to shreds. I talk about my mother a lot, but a photo of him pops up at odd
Gray haired ladies
times when I'm looking for something so I believe he's around also. I think he would be (I mean, I think he is) proud of my serve. He was proud of everything I did but worried about my serve. He wanted me to take the racquet back further down my back. I think I finally figured it out, thanks, of course, to serving lessons with George. It's not that hard but I twisted it and put a little slice on it.

Hi Dad!
You don't want to use the word torture for things that aren't really torturous, in light of all the horrible things in the world. Taking it down a level, in the past couple of days, people found different ways to "torture" me. First, on Thursday, when I checked in at Dana-Farber for my checkup with Melissa, the intake guy asked if I wanted them to leave the needle in, after the blood draw, so that it could be used at my next procedure, at 4 p.m., the ECP at the Kraft Family Blood Donor Center. Nobody ever asked me that before, but I said sure. Tina, a nurse who became my friend during my first year or so of ECP, had changed jobs and was doing the blood draws on Yawkey Two. She came over and explained the required needle to the nurse. The nurse got all FARBLUNGET.  Instead of putting in the required bigger needle, she did the usual one and slapped a bandaid on. This was after Tina had called my nurse Deb at the Kraft Center to confirm what I would need. Later when I got there and she asked if nurse number 1 had left a needle in and I said she hadn't, she said, sarcastically, "Of course she didn't."

So I got stuck three times instead of two.

My appointment with Melissa was mostly about dermatology. She said she would try to straighten out the confused state of affairs having to do with three dermatologists telling me three different things to do about my skin. Especially my hands, with each of them contradicting the other on how to deal with the pointillist canvas of pre-cancers and who knows what. But I don't want to ruin the day by getting too much into that.

My numbers were great. My platelets were normal, yay! I used to get the printout but I don't anymore. I know that normal platelet range starts at 160, and when I heard 190-something that was all I needed to hear. If you search the blog for "platelet," you'll see that I've always had a platelet problem.

Dr. Marty came in with a new doc on the block. We gave each other a hug. He explained to the new doc how we go way back. We laughed about what happened at last year's US Open when I had a crazy, itchy, burning rash and cold sores around and on my lips having to do with a "perfect storm" of decreasing Valtrex, an antiviral, and using Efudex, the chemotherapy cream. I wrote him and Melissa, and almost as soon as I sent it, he replied, "Get a selfie with Nadal," because I said that's who I was watching from the nosebleed seats. I wrote back that he was too far, and he said something along the lines of tell him to come up to you. As for the lips, I think he said to go back up on the Valtrex and use Vaseline. He had already given me some good medicine by replying so quickly and making me laugh.

Oh I almost forgot the other "torture."

At occupational therapy, Karen, the therapist, made me a hand brace to open up my left hand while I sleep. I sleep with my hands curled up into fists underneath my chin. Now I won't be able to do it. Together with hand exercises (when I do them), my hand is hopefully going to be able to flatten out in yoga (or any other time I want it to) and my hands will hopefully be able to get into "prayer position," the inability to do so having to do with graft vs. host of the skin affecting my fascia. In general, we don't want it to turn into a claw. I texted the photo to the kids and Katie said that looking on the bright side (if I can sleep) I'll be able to do a better down dog, which is just what I was thinking also.

I was walking around with the backyard birthday photos, at 77 Coronado St., Atlantic Beach, with Jane and Michael Kass in them and now I can't find them. They seem to have morphed into other beach photos. They'll turn up next time I'm looking for something else. They're such good memories. One of these days maybe I'll recreate something alone the lines of what my Vassar classmate, Amy Drake and I, did after college, driving down the coast (all the way from Portland, Oregon!) to LA. Now I should stop and get ready for a little trip to Fairfield for a little celebration to see some of my favorite people and talk to others.

I'm ether 65 or 10. Who knew?

Wednesday, August 21, 2019

Getting a 'visit' from my mother, thinking about Atlantic Beach birthdays

Atlantic Beach birthday 
A week or so ago I dreamt that packages were arriving with my address in my mother's beautiful handwriting. I was confused. I sensed that she was around but was upset that I couldn't see her.

Then last night, she was standing right next to me saying she had sent them. It was so good to see her. Maybe she sensed that just sending the presents wasn't enough and that I needed more. 

I had the dream that I have had before. I want to go to the beach house (in Atlantic Beach) but we can't go there. Someone else is in the house and they won't let us come. My parents say we just can't go there anymore.

The puddles in the streets here in South Hadley the other day reminded me of the puddles on Bermuda Street, riding our bikes through them after the rain. The humidity made me think of driving to Long Beach to get ice cream at Baskin Robbins, my mother getting mint chocolate chip.

Best present ever
My informal research has turned up an interesting factoid: Birthdays weren't such a big deal in some families, but they definitely were in ours. At night: "Wake up to a happy birthday!" In the morning, sleepily, kicking the present at the foot of my bed with the crinkly light blue cover. The present of all presents: the blue Smith Corona typewriter. My sister was jealous about my summer birthday and I was jealous of hers in the winter. I didn't like being thrown in the pool, at day camp, with my clothes on. The parties in the back yard were pretty sweet, though. The trips to Cedarhurst to buy the party favors were a lot of fun. She made a centerpiece and attached ribbons to it and the ribbons went to each place with a little favor on it. The memory game helped me later on in my writing. Study random items she put on a tray and try to remember as many as possible and then write them down.

Later when I outgrew the parties, my parents took some friends and me out to dinner.

My 50th birthday party, here in South Hadley, seems like yesterday. It was more than a year after my first transplant, so I had gone back to work at the newspaper. Paper people and neighborhood people were coming. I was just going to have cake. "You can't just give them cake!" she said, or something like that, and we rushed to the store and got what turned into a big festive spread.

I have also had the usual nightmares. I want to go back to work but the newspaper has closed. Or I go into work and there are more empty desks than there are people.

In real life, though, I've done some dreamy and maybe even daring things. I rode Margaret's e-bike and got the feel of it. It wasn't really daring because it was on a bike path, though daring because my crew doesn't trust me on bikes. A matinee at Jacob's Pillow, to see the Martha Graham Dance Company, with a drive on back roads to and from, was dreamy. A ladies' lunch with Tami/Tamar in West Hartford (our annual summer meeting) doesn't fit into daring or dreamy but I'm into the Ds so I'll say it was definitely a lot of fun.
Headless at Tanglewood

Did I say that I have a big birthday coming up? My sister reminded me that it's cause for celebration. Part of me knows that. The other part has internalized our culture's ageism and thinks I'm pretty much over the hill. At least I can walk up a hill when at many points I couldn't even do that. I didn’t get past Season Two of Grace and Frankie and decided to revisit it and I’m glad I did because it’s making me laugh about all this aging stuff.

On Sunday when we were at Tanglewood, I was taking a photo of the beautiful scenery when a woman came up and asked if I wanted her to take a photo of me. I said OK, sure. She chopped my head off. Maybe she was trying to tell me something.

Wednesday, August 14, 2019

Mass confusion on the scheduling and dermatology front

I thought I had two good things to report on the medical front but it turns out there is only one: I felt better as soon as I got my stitches out of my neck last week. I was free to go to tennis and do yoga without worrying about straining my neck, and I was pain free. Yay!

 The other – which would make a big deal in my life and give a break to my veins – was supposed to be switching to every three weeks, instead of two, for the trip to Dana-Farber for ECP, aka extracorporealphotopheresis for graft vs. host of the skin, aka the light therapy, aka the internal sunburn, for softening up my tightened skin. When I went last week, the Young Doctor, aka the resident whose name I forget, said since everyone had been talking for so long about switching to three weeks, why don’t we go ahead and do it. I said OK. She said she would have the scheduler put me down for Aug. 29th.

Me with "bangs"
Today I looked in Patient Gateway and saw that I was scheduled for Aug. 22nd, which is two weeks. It takes a lot of energy to keep on top of these things. Last time they had it wrong too, unless they changed it on purpose without telling me. Instead of scheduling me for two weeks from the previous time, they scheduled me for three, then went back to two. I wondered if they had switched me to three without telling me but then I wondered why it had popped me back to two.

I’m also trying to coordinate a checkup with Melissa with the ECP days. So this matters. As I’m trying to write and/or pitch some freelance stories, I’m distracted by this confusion. I wrote her that maybe they were just trying to test my mental facilities to see if I caught the mistakes. There should be a better way. I think the name of my old tennis team, Mass Confusion, could apply to some of this stuff.

On the dermatology side, the Mohs surgeon told me to apply a combination of creams all over my face, to treat a couple of squamous cell cancers in situ (on the skin) and head off other ones. It is Efudex and Calcipotriene , which someone online summarized as giving the Efudex superpowers. It caused a side effect of a fungus on and around my  lips. They burned like crazy. When I went to get the stitches out, my internist gave me a cream that made the fungus go away. I called my primary dermatologist to ask if I should still apply the cream combination. I left a message but didn’t get a return call. I stopped applying the cream combo. I guess if I want a definitive answer I’ll have to call the office again or email my dermatologist.

At tennis today, after I had put my pill box down on the table (because I had taken some pills on the way over) George asked how many pills I took a day. I guess I could count. I think it’s maybe 25. I said somebody called me a chemistry experiment. 

Also in between things today I had fun texting with Katie about maybe getting bangs. I took some hair from the bottom of my hair and put it over my forehead to show the effect of bangs. Maybe Katie and I will do it together. Also on the so-called beauty front, remind me to never get another gel manicure. It totally wrecked my nails. I did it for one of the two spring weddings I attended and thought it would be OK, but a few of my nails split in two and broke down below the nail line. I’ve been told it might take at least six months for them to recover. When I showed them to my dermatologist at the last visit, she said another reason not to do it is that you’re getting UV radiation when they bake the color on. I hadn’t thought of it but now I’m aware. 

My medical people have remarked on how strong my nails remained throughout everything I’ve been through. Leukemia didn’t ruin them, but a visit to Lucky Nails in Northampton did. That will teach me to be a walk in. If I had read the reviews, I wouldn't have gone. Well it is kind of weirdly funny to get unlucky after a visit to Lucky Nails so maybe I can laugh about it and after all they will grow back. I thought of going in and showing them what happened but what are they going to do? Give me my $25 back? Actually I think I paid an extra $5 for the gel. BTW it was my second and last time.

Monday, August 5, 2019

When the worst part is the healing

Not a pretty profile
Ellen, the physician assistant at ECP (the light therapy), said that my Mohs surgery for invasive squamous cell carcinoma was on a small area and would be no big deal. All things considered, it is definitely no big deal, but for the week in which it is healing, it is.

For a small spot that was barely visible (the resident called the BF into the exam room to make sure they had the right spot), it must have gone relatively deep. It only needed one "pass," but it required internal stitches and a running stitch with maybe eight loops. 

Though my blood pressure was a little high, I wasn't worried about the procedure itself. Dr. Schmultz, at the Mohs surgery center at Brigham and Women's Faulkner Hospital, in Jamaica Plain, does such a good job of giving the anesthesia that you barely feel it. Also it was quick, and we chatted for most of it about such relevant topics as making sure I was taking niacinamide (same as nicotinamide) which has been shown in studies to cut down on skin cancer risk. I asked about a product, Tru Niagen, which has the same active ingredient and a big anti-aging marketing campaign. She said it was all the same and she wondered how long it would take for someone to make money off of it.

The anesthesia had worn off by the time we got home. It started to ache. As directed, I took 10 mgs. of oxycodone. It helped with the pain but it affects my sleep. You would think it would knock a person out, but it puts me in a strange state. I took a sliver of Ativan. I tried to read but couldn't focus. I doubt that I got much sleep.

Since then it has hurt on and off. I don't remember the other healing processes being as uncomfortable. Maybe I just forgot. Maybe it really is more uncomfortable due to positioning which causes the area to stretch every time I move my head. I haven't played tennis or run and have just been walking. Yesterday and today I went to yoga because I felt like I needed more. My mental state is not great. The other night, when I washed it and applied Vaseline and a new Bandaid, I must have activated something because it itched so much I thought I would never get to sleep unless I took a Benadryl. I took the Benadryl and woke up hung over. I'm looking forward to tomorrow, when I get the stitches out.

Here's a little something I wrote about having four stem cell transplants. I figure I've had more pain in my life than the one I'm having in this healing process. Still, the pain you have at the moment is the one that hurts and it doesn't make it much easier to think about times that were worse.