Tuesday, August 4, 2020

(Not so) long ago and far away

I made a book for Katie with pictures from our California trip Feb. 20-24, under the wire before the lockdown. We both looked at the glow on our faces in the photo with Nancy, Serena, Goldie and baby Leo on Stinson Beach, our last stop before we came back, and said how happy we looked. I used the photo for the back cover. I leaned the book, with the back cover facing out, on a table in my dining room, instead of putting it away. 

 In perhaps a Freudian slip, when I went to write that we said how happy we looked, I wrote sad instead of said. Sad, because who knows when we will be able to do something like that again. And because it seemed so innocent to hand a phone to someone on the beach instead of darting away like we would have to do now. 

Back in the real world in dermatology land, I am treating two spots with Efudex, the chemotherapy cream that patients love to hate. The one that is the least problematic, an actinic keratosis on my face, is red and angry (that's what it's supposed to do) and the one that is actually a skin cancer (squamous cell) on my chest, is not doing much. 

I wrote a little something on how getting to the dermatologist can be a pain. It just came out but I wrote it before my latest visit, when I finally did it right. 

You wouldn't think that the lions, Patience and Fortitude, guarding the 42nd Street library would have much to do with neuropathy, but I wrote this post connecting the two. The connection occurred to me while I was running and needed a distraction from the pins and needles in my feet.

Missing live theater, I also wrote about virtual ways to stay connected to theater during the pandemic. 

I have a thin skin, literally and figuratively, so I got very upset the other day when someone told me that I was not as appreciative as I should have been when the neighborhood ladies brought me food after my first stem cell transplant. She said instead of being gracious, I had told some of them i didn't LIKE the food.

That was 17 years ago.

I'm not sure where that came from.

And I'm not sure where some of these sayings come from, but I was sick as a dog. I doubt I said I didn't like the food, but even if I did, whoever was bothered could have given me a break. I probably said I couldn't eat the food, because the rules after stem cell transplant are no food cooked outside your house, due to possible contamination on someone's counter or in transit. Or maybe she got this report after the food deliveries were OK, but under strict guidelines about what I could and couldn't eat. 

But hey Callen turned three and Nell turned five last month.

I hear Nell is working on her two-handed backhand with the tennis racquet I gave her.

You heard me say that I'd never see my grandchildren, right? 
So, some things are more important than what someone might say about you.

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 fivethirtyeight.com 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. 

Saturday, June 13, 2020

The places I went: Canoe Club and dentist

Canoe Club courts
I couldn't decide if I was going to go running or go to tennis on Wednesday so I did what we used to do in the newsroom: shout out a question and take the advice of the person nearest you. In this case it was the construction guys. I had my running shoes and my tennis shoes and they said to go to tennis. So off I went.

Seriously though I had asked my nurse practitioner and she said it is unlikely that the virus will travel on a tennis ball. Still, the USTA guidelines from May say to: "Use your racquet/foot to pick up balls and hit them to your opponent. Avoid using your hands to pick up the balls." I said that to George and he said you don't have to touch a ball. Guess what? It's really hard to not touch a ball. I was never good at that move where you pick the ball up with your foot and racquet by bouncing it on the ground. I touched balls but didn't touch my face and used hand sanitizer in breaks. I think those guidelines came from the period when people were more worried about the virus sticking to a surface.

Canoe Club
There were five of us plus George. It was good to see friends that I had missed. I think it was OK. We stayed far enough apart from each other. You're not really supposed to congregate. In breaks, though, everyone just drifted to the usual spots in chairs around a table. I started to sit down but pulled a chair out. At one point, when we were doing a three on three drill, someone on my side rushed to the net and told the other two to come on up. I said I would just stay back, remembering the distance idea. She said we would still be far enough apart. I stayed back.

I had my third visit to the dentist. This time, unlike the previous times, there were people in the waiting room. Alternate seats were blocked off, and people were wearing masks...so I think it was OK, but afterwards I had a little freakout. Not a good time to have OCD.

I got there on time and expected to go in on time so as to minimize time around others. Later I talked to other people who said their dentist had them wait in the car until it was time. I would have left and gone outside except that I kept expecting to get called in. I waited 20 minutes.  I don't have any upcoming appointments, but for my next one, I'll ask to wait outside.

Still, routine care is going to continue happening, and not all offices are going to be able to have people wait outside. Later in the month, I'm going back to Dana-Farber, for a checkup and to meet my new doctor. I'm going to need to get blood work. They are not going to tell a whole bunch of people, some of them sick, to go wait on the street.

House work
My dentist has opinions. Actually, I think since he has been with me through everything, he cares about me. He said that I have lost too much muscle mass and I should go eat some protein! He said to go eat a steak. I don't do that very often. I don't weigh myself often, either, but I do think I have lost weight, due to the running. I am doing weight-lifting classes through the Y, especially the Livestrong classes twice a week, plus yoga, so I thought I was taking care of my upper body. It's not something I have been great at over the years during times when I've been running a lot.

 I went to Boyfriend's house and asked for protein. He made me some eggs. At home I tried making a smoothie with green stuff, protein powder, and fruit. It doesn't sound that hard, but for some reason I mess up my smoothies.

Here's something I wrote about all the side effects of my transplants. They actually call these after effects because side effects are talked about more in terms of more immediate reactions.

I'm happy to say that work is finally continuing on the house.

Local strawberries are here. Yay! I remember when they were one of the last things I was allowed to eat, after my transplants. Of course I had to write about it. I don't know if they are going to do strawberry picking this year. I have sweet memories of doing it with the kids. I think I might have liked it more than they did...but they seemed to be having a good time.

And to think this guy is a father now

Sunday, June 7, 2020

Thinking about good luck, bad luck, and risks

Flowers from the garden
Here's a story that hit a nerve.

Finding, and Curing, Cancers May Be Another Casualty of Coronavirus, begins, "Our leukemia team just cared for a young woman who had gone to a hospital 50 miles from ours because she wasn’t feeling well. She had delayed seeing a doctor for weeks, fearing that emergency rooms and urgent care clinics were akin to Covid hot zones. She didn’t want to catch the coronavirus if she didn’t already have it.

Some of the symptoms she had — fever, cough, fatigue — are also symptoms of having leukemia. They can also be confused with a coronavirus infection. But because of the pandemic, instead of having blood counts drawn, which are the first clue to detecting underlying leukemia, the well-intended emergency room staff tested her for Covid-19 and admitted her to a “Covid rule-out” unit within their hospital."

From the headline, or the "hed," as we say in the news biz, you can see where this is going. She did have leukemia, and by the time they caught it, it was too late, and she died.

For obvious reasons, this story resonated with me. First of course, I was so sad to hear she didn't make it. Second, I knew that the same thing could have happened to me. I didn't even have fever and cough, just extreme fatigue after that Saint Patrick's Road Race. If it had happened now, I wouldn't have gone to the doctor, and my leukemia very likely would have progressed like this young woman's did.

I was lucky.

I have been super careful to stay out of the virus' way, and I don't want to try my luck by doing anything that I shouldn't do, going forward. But it is not that easy to know exactly what to do. Last week I knew I wasn't going to stay out of stores forever. So I went briefly into Atkins. It was fine.
But am I going to play doubles? It is outside, so that is good, but it means opening up my circle. I miss my friends and want to do it. In an email, Melissa said the risk is low but not nothing. I am going to hold off for now. I know I get enough exercise, but that's not what it's about.

Plant salon
For the fall issue of Chicago Health Magazine, I'm writing a story about cancer patients and COVID-19 as society reopens. I asked one doctor which patients are most at risk. He said the list includes stem cell transplant recipients, whose cells have been manipulated in a crazy way.

Obviously those in the first year "out" are at highest risk. I wanted to know, where is the cutoff? (Subtext: What about ME?) The doctor couldn't say. I assume the risk is lower the further away you are. Eleven years isn't bad, but it is something.

Ways of trying not to dwell on this too much today included cutting flowers from the garden, weeding, and giving my inside plants a trim. I figured that with people going back to salons, it was a good day for a plant salon. My friend Bubbe watched.

Wednesday, May 27, 2020

Wandering around town, wondering when my treatments will start again

Leading the way at Bachelor Brook/Stony Brook Conversation area
It turns out that the trip to the dermatologist was worthwhile, because the spot next to my knee was indeed another squamous cell cancer. It was small enough and early enough that the biopsy took care of it, and I won't need to go back for another Mohs.

Since we last talked, I went to the dentist again. Everything that used to seem normal is now a bigger deal. The gremlin took my mouth guard, and I needed another one made so that I don't grind down my remaining teeth. Turns out that the one I lost was four years old, and you apparently need a new one every four years, so losing it was not a big deal.

I wasn't as nervous about going as I was the last time.

For somebody with a big mouth, I have a small-sized mouth, and he had to use a kid-sized mold on me. Maybe that is why the store-bought kind made me gag.

I wrote about ECP, the light therapy, having the unexpected benefit of improving my tennis game. It just came out, but I wrote it in the days when I was still playing tennis and getting ECP. The procedure is on hold, but every three weeks, Diane at the blood donor center calls to see if I am coming. I feel like I'm in the movie Groundhog Day. I tell her that Melissa said that until further notice I am not supposed to come. Then three weeks later I get a reminder call saying not to come if you are sick, etc., and then the call from Diane asking if I am coming. She said this was my last scheduled treatment and recommended I speak to Melissa about whether and when to start up again.

Ferry Street scenery
She said she didn't think you're just supposed to stop. I said I will check in with Melissa but also said I think they've totally forgotten about me. I was trying to be funny but I was half serious. I haven't had a blood test or appointment in a long time. Mine is not the only non-COVID care that is falling through the cracks.  But it is worse for those who are truly sick as opposed to people like me with chronic health conditions.

If I start back up, I'm not sure how I'm going to do it. I can't possibly reach out to the crazy driver pool. It is not ideal for me to drive myself round trip or to ask someone to drive me or to ask the usual suspects if I can sleep over. I told my friends I could drive myself and highly caffeinate on the way back, but they didn't think it was a good idea. I will have to do some consulting.

The other day, I took a nice social distancing walk with Katie. We went around the town's Bachelor Brook-Stony Brook Conservation Area and then walked up to McCray's. I haven't had ice cream in a while and enjoyed my mint chocolate chip in a cone. They had a line drawn at a distance from the window so people couldn't crowd around. It wasn't very crowded, so that was good. We sat at opposite picnic benches.

I might not make it to a beach this year. Maybe I will, I don't know. Things seem to change so quickly. The thought of not going to a beach, after spending summers in Atlantic Beach and going to the Cape most every summer in my adult life,  is a bummer. But Katie and I talked about how lucky we are to be in such a beautiful, uncrowded place.  When I go for a run, I often stop and say, "Wow, just wow," to the birds, of whom there seem to be more lately, or maybe it's to myself. Today I went six miles, before it got really hot. I started to walk my Old Dog in the morning, but it was too hot. She seemed to enjoy walking later in the day.