Saturday, July 25, 2020

Having my pie and eating it too

My perfect combination is a tennis game followed by sour cream coffee cake from Breezy Acres Farm, in Granby. When I went yesterday, I got a cute little watermelon, broccoli, blueberries, and corn…the flavors of summer. I eyed two cute little mini blueberry pies on the shelf in front of the kitchen and asked if they were taken. Nancy, Evelyn's sister the baker, didn’t know, and Evelyn was outside somewhere. For some reason, though, I thought the person at the register had gotten one for me. When I got home, I looked in my bag and it wasn’t there. I called up and Evelyn said she had just thrown the pies  together, they weren't her perfect pies, and I could have one for free.

Tennis was good but I thought I could use a little more exercise. I told Boyfriend that I thought I might bike. He said, "You'll have to get up that hill." By that hill, he meant Cold Hill. In the old days it was a lot of effort but I could do it. A few weeks ago when I tried it I had to get off and walk. Katie reminded me that there was no shame in getting off and walking. Still, I would rather not do it. I don't like teeter-tottering in the easiest gear and stopping to get off; that's when I could fall. 

So I had the "brilliant" idea of going up Morgan Street instead. It has a gentler incline. I put on a back pack and off I went. When I got there, Evelyn started to say that I was a little nuts, but she changed it to that I was funny. In any case, I got my pie and went home. First I ate half. Then with about two seconds in between half one and half two, I went back and got the other half. 

The little dent at the top of the pie isn't a mistake on Evelyn's part. It's a little nibble that I took out of it while bringing the pie inside. 

The other day Katie and I took a walk along the dike through the corn fields off the bike path. I knew of a biking route that goes left off the bike path when coming from Damon Road but not about this walk, which is an earlier left, when coming from the parking lot. We heard loud booms that scared us. It sounded like shots. We couldn't tell where they were coming from. Two women happened to be coming towards us, from the direction of the Connecticut River, where we were going. They looked like another mother and daughter pair.

They said not to worry, these were corn cannons to scare off birds. When I got home, I looked it up and saw that we weren't the only ones who thought they were gun shots. This story describes how a farmer uses these bird cannons, or noise cannons.

When we got down to the river, we sat in the shade, leaned back, and looked at the water. It sure is nice to have her around. Usually when we do things together, we take a photo together, but since we are not in the same bubble, we are sitting further apart, hence the separate photos. We have talked about integrating our bubbles. Hers is larger so it's not a good idea. This is hard but I'm glad we have enough open space to be together apart.

Tuesday, July 21, 2020

Extra, extra, I went to the right address in Boston

Traffic watch
"Your skin looks good...for you."

"Your scleroderma looks good."

These were interesting words to hear at my trip to the dermatologist in Boston last Tuesday.

By looks good "for you," that meant only two biopsies. But it did not mean a break from getting multiple areas zapped, alas. As I write this several days later, spots are still blistering and starting to peel, like the end of a bad sunburn. The idea is to leave them alone, but as I've said before, that is easier said than done.

The dermatology practice had a very interesting procedure: Be there no earlier than five minutes and no later than five. When you get to the door, call the number and you will get patched through to an operator who will screen you. Tell the person at the door you were screened. Go into the empty waiting room and go straight to the exam room.

I was told the doctors were told to keep on time. I went into an exam room...and waited about 45 minutes. At least though they did't keep me waiting for an hour in a FULL waiting room like they did at Dana-Farber, where apparently they forgot about me.

I drove myself again. It wasn't bad. It actually felt good to be going some place. You might not believe that a person could go to a wrong address twice, but if you know me, you can believe it.

I previously went to 221 Longwood Avenue Brookline, instead of 221 Longwood Avenue Boston, where the office is...and I did it twice, almost missing my appointment. This time I FOCUSED on going to the right place. I don't even know how I had messed it up. It wasn't that difficult. Ben turned me on to the podcast. It was a good one and nice and long so between that, and listening to The Daily, from the New York Times, I was pretty well occupied.

Speaking of dermatology, here's something I wrote about being embarrassed about my face.

I took a selfie to show Ben that I was wearing the running hat he gave me.

I took it maybe 100 times (not really) because I didn't like my wrinkles. Maddie has also gotten old (er) but is still photogenic. I took a photo of her doing a "traffic watch" while I stretched.

Post-run selfie
I noticed that you can see the bump on my shoulder. Actually I mean, the bone sticking up. It's from when I crashed onto the tennis court on a break between chemo sessions many moons ago while diving for a ball and trying to protect my Hickman catheter while I fell.

Yesterday it was really too hot to go running by the time I got around to it, but I did it anyway. I have gotten back into it enough so that I really miss it when I don't do it.

I skipped the family birthday party over the weekend. (Two July birthdays, one party!) My first reaction was that I was going, and then I realized I shouldn't go. Too much exposure and all that.

I knew it was the right thing to do but still it made me sad. The other grandma messaged me via Facebook and said they missed me. It was sweet of her. They tried to put me on FaceTime but there was too much going on and it didn't really work. I had a little meltdown. It's surprising the way things just sneak up on you.

I got the results of the biopsies. One, on my chest, is a squamous cell "in situ," just on the skin. I am supposed to treat it for four weeks with Efudex. The one on my cheek is actinic keratosis (AK). These could lead to skin cancer and also need to be treated. I have treated it multiple times and it doesn't go away. I'm supposed to treat it for two weeks again. When it works, they get all red and irritated.

I wrote about the side effects of Efudex but I'm still going to do it. First I have to wait for the biopsied spots to heal.

Oh I forgot to say that the scleroderma to which she was referring was the hardening of my skin. Without ECP, it still seems to be OK, knock wood.

Sunday, July 5, 2020

A day at the beach and a graduation with no ceremony

1: I finally saw the grandkids!

2: My skin passed the pinch test.

First, 2: Passing the pinch test is mostly good and a little bit bad.

Good because when I went to Dana-Farber last week, Melissa, my nurse practitioner, agreed with me that the skin on my thighs has enough "give" to show that the benefits of ECP, the light therapy, have stuck with me despite the abrupt stop. 

Bad, because I'm one of those graduates without a celebration. Normally I would have gone to every four weeks, from every three where I have been, and then gradually phased out. Those nurses at the Kraft Family Blood Donor Center were so kind to me, and they had become my friends. I would have liked a proper goodbye. I'm going to send them something and hopefully, when things calm down a little more, pop in and say hello and thank you and even though you were sticking needles in my arms I'll miss you.

Well, it looks like appointments are back to being in person, as my visit with Melissa attested. Next week: dermatology in person. 

Here's something I wrote about graft failure, the crazy scary thing that happened when my second donor packed up his bags and left. It was a long time ago, but not long enough to keep me from having an occasional nightmare about it, mixed in with pandemic anxiety.

2. So, I finally got to see the grandchildren!

I met them at the beach in Fairfield on a weekday morning when there weren't a lot of people around, the chairs were spaced a good distance apart, and there weren't too many people having lunch. Holding a little hand is the best feeling. There is something so precious about it. I did stay too long, however. After all this time, who wouldn't? It was hard to leave. But it was almost a two-hour drive, and I struggled on the way back. I had to get off and get peanut M & Ms. Even a coffee with three shots of espresso didn't do it.

Nell is taking tennis lessons. Everyone at the courts wears white. The little girls look so cute in their white dresses. Ben said I could go down and play, but on and around the courts there is not too much social distancing. I decided not to go, but I would like to go down and watch a lesson .

I'm doing a few more other things out and about. I have to realize that not everyone is going to follow the rules and either not get freaked out about it or stay in my house. I wrote the following on Facebook, then took it down. Sometimes just writing it is a help.

I've started this post many times and then not gotten back to it, thinking it might be time to stop the blog. It's hard enough to concentrate on my paying work. I was used to getting out of the house to write. The inspiration doesn't flow the same way at my dining room table. It was better in the kitchen, which still isn't finished. More on that later. My deleted FB rant:

I went into Trader Joe's in Hadley for the first time since forever. The sign at the door said wear a mask. I was only picking up a couple of things but the person at the door said to take a cart because that's how we keep distance. There weren't many people in the store, around 7:15 p.m., so it felt like a good time to go. As I was leaving, an employee was leading an older, maskless, cartless woman in and saying "that's OK, that's OK." They passed pretty close to me as I was going out. I called the store when I got home. The person who answered said that for health reasons a few people can't wear masks so they let them in. I said I wondered why they didn't have someone shop for them, then. She said it was a good question. I assume it is "ableist" to think that if people, for example those with asthma, can't wear masks, then they shouldn't go into stores where the rule is to wear a mask. But that is what I think.