Monday, December 28, 2020

When I said 'nose,' maybe the dermatologist heard 'toes'

I went to Boston to the Mohs surgery center for what I thought would be removal of something on my nose. Instead, the doctor said to apply Efudex/calcipotriene, dermatology's "dynamic duo," to my face for five days, to in effect burn off this and other spots. Instead, she had the resident cut away part of my toenail and biopsy the dark area underneath it, "just to make sure it isn't melanoma." This was kind of as an aside. I have shown this gross big toe to many people who haven't had much to say about the dark area under it along one side. The consensus has been that it is scar tissue from my toe banging up against my shoe while running. She is the first person who seemed to give it a second thought.
When I said nose, maybe she heard toes...

The resident said not to worry. What, me worry? 
Here is something I wrote about being a worry wart.

It was not a pleasant experience and really hurt even more when the anesthesia wore off. I have not gotten the results yet. Boyfriend had to stand by when I took the Band Aid off in case I fell over in shock at the sight of it a partial toenail and hit my head.

A friend pointed out that it wasn't a good idea to write in October that my hypochondriac tendencies had led me to suspect pancreatic cancer...and then disappear.

I started a couple of times, as you can see if you scroll down to a post I wrote last month, and then I had blogger block, a version of writer's block that occurs when you are not sure why you are writing a blog. Also, I like to add photos, and my photos disappeared from my Mac. It took conversations with several Apple experts to get them back.

The pandemic has made it hard enough to concentrate on paid work. So I have put my energy into work that pays. I thought of revisiting the blog, however, when I wanted to look up one of the crazy things that happened to me and found it in my blog. It was the years that I had ferritin overload due to having so many blood transfusions, and having to drink a disgusting medicine, Exjade, to get the number to get down to normal. I found the blog, put in "ferritin," and voila, the posts came up. So maybe it is at least useful. Still, I got tired of hearing myself talk about myself. I'm not sure what I am going to do, but I thought I would at least check in and update.

Here is something about the increased mental health risks during the pandemic for those who have seasonal affective disorder, or SAD, and tips for coping. And here is another pandemic-related story, about the need for cancer treatments and screenings to continue. 

Here is what I started: 

Here we are with my Aunt Marge on her 100th birthday. I was very attached to her. My mother said that when I was three or so, and my head didn't reach the counter in a coffee shop, and my aunt hadn't gotten served, I said, as if out of nowhere, ""Please give my Aunt Marge  cup of coffee." 

When I moved to Western Mass for my job at the T-T (Transcript-Telegram), I stayed with her in Greenfield for a while. She was gracious, even when my dog Simon took a chomp at their little dog when he messed with Simon's food. Over the years when she lived in New York, I visited as much as I could. 

This photo  at left turned up during cleanup, in an envelope of old photos. Warren in front, my mother on the left, and Marge on the right...with the same sweet face.
As Bruce wrote in a beautiful tribute on Facebook, when Marge died on Oct. 19th, "she spent 101 years and 9 months on this planet and came in on a pandemic and left on a pandemic."
Bruce Byers photo, Lynne and Marge

Saying that I was sad when she died is an understatement. It is more than being the last link to the generation, to my mother. It is the love I felt for her. And not being able to go down to New York makes it worse. I have thought of doing it and would love to see Jeanne, Bruce, and Amanda, but it doesn't make sense now with the surge. 

The two of them were sooooo close. They called each other Bren. It came from an act that two sisters, Brenda and Cobina, did, which would start like this: "Brenda!" "What is it Cobina?" They apparently did this for a while and then when they forgot which one was which, they just simply called each other Bren.

Hopefully will all make it through and can get together in New York to celebrate a wonderful life. 

Here is another start. 

It sounds like an ordinary, tennis, Odyssey bookstore on Small Business Saturday, coffee with a friend, dog walk... and in a way though part of it would have seemed abnormal pre-pandemic, it is the version that I have gotten used to. It was virtual yoga on the living room floor, for starters. Tennis, still at the Canoe Club, wasn't any different than in the past except for knowing that it is nearing the end because I decided not to go inside. At The Odyssey, one-way traffic, hand sanitizer, and a placard to take so they can keep track of, and limit, the number of people inside. And coffee sipped behind the mask, reminding me of how I did it after all of my transplants .

Sunday, October 4, 2020

Wondering about weight loss and activities moving inside

There’s a fine line between being hypervigilant and hypochondriacal. For example, whenever it comes up, my friends say that being a hypochondriac helped me when I went to the doctor after that fateful slow 10K in 2003; they would have just written it off to a bad day. I say that I think that one was more in the hypervigilant category. I thought something was wrong, but in my mind it wasn’t a deadly disease, just bad diet or training. 

 As an aside, it has been interesting to see the doctor who diagnosed me, Ron Berger, out on the tennis court after his retirement. 

 Well in any case, on the hypochondriac side, I started to worry that my weight loss was a sign of something dire, even though I recently had a blood test that turned up some slightly off kidney function but nothing too serious. (Upon retest it got better and might have been due to dehydration or taking Ibuprofen, which is bad for kidneys, but I'm not supposed to take much Tylenol, either, because it's bad for liver, which leaves me with oxy, and I definitely don't want to take too much of that, but pain relief is another topic.)

I don’t as a rule get on the scale. I started to think about it when my dentist, who takes an interest in my overall health, said I was too thin, and I should go eat some steak. It’s kind of in my family to get thinner and thinner, though. For example, my father was so thin and unsteady that we were afraid he would fall over. 

 At my last appointment at Dana-Farber, I did weigh in at about 10 pounds less than the year before, but they said it was OK since it was over a year, and I’m very active. 

Well I finally got on the scale last week and was aghast at what I saw. I weighed less than when I finished cancer treatment. When a disease is in the news, that’s the one that sticks with me, so immediately thought I had pancreatic cancer. I don’t usually do this, but if I’m in a panic, I think it’s OK to text my wonderful nurse practitioner, Melissa Cochran. She gave me her number, so I think she doesn’t mind. She said she would call me.

 She did shortly after. Her response was not that I should rush right in. (Maybe I expect bad news because of all the times it happened, and this history gets layered on top of my tendency to worry.) She said I probably wasn’t getting the 2,000 calories a day that I should be getting. 

I downloaded My Fitness Pal and tracked what I ate for a day. Then I subtracted my activity, which was a lot, and saw that indeed, I was below that number. Another factor was removing most dairy, due to digestive issues. 

I bought some Ensure (chocolate flavor) and took it back. Then after some friends said I should try it, I got some more, drank a little, and said no thank you. I think maybe I’ll take a chance on the digestive issues and put some ice cream back in. Also the running I’ve been doing, although not pretty, undoubtedly burns a lot of calories. 

And then there is tennis most days… I’m enjoying it so much, I don’t want outside tennis to end. A lot of people are going to go inside, but I’m not sure what to do. It seems like it was just yesterday (actually end of May or early June) when we were worrying that it wasn’t safe to even play outside. We got through that and even attended a garden party last week at a tennis friend’s house. 

 Since I like to worry, in addition to worrying about indoor tennis (which a lot of people say I shouldn't do), I'm worried about how I'm going to see kids and grandkids when it gets too cold to be outside. They were already briefly in my house, so I'm thinking that maybe we can do it if we don't get too close to each other.

I have an appointment at Dana-Farber in a couple of weeks with my new doctor, so I think I'll get his opinion on these things instead of taking the "person on the street" approach.

Sunday, September 27, 2020

How to improve your tennis game: Buy a new skirt

 I wasn't sure I could watch the US Open without fans, and with knowing that Donna and I wouldn't be going this year. But I quickly got into watching the tennis and finding it interesting to see the players watching each other and wandering around doing all the other activities in the bubble.

At Holyoke Canoe Club

It was right about this time that the elastic in my tennis skirts gave way.  I kept jacking them up like an old man hitching up his pants. And the colorful skirts and tops that many of the women were wearing caught my eye. The design was like paint brush strokes. I put in the relevant keywords (Nike skirt US Open blue and pink) and the Nike US Open skirt came up. 

I thought it was just an interesting, colorful skirt, but then I read that the Nike look at the US Open was more than that. Marija Zivlak of Women’s Tennis Blog wrote,

"Nike is reviving Andre Agassi’s rebel style in the 2020 iteration of the ATP icon’s Challenge Court collection that stirred up the tennis fashion world thirty years ago. Using coquille board, torn paper and snippets of the original design, Nike re-created the legendary looks with more modern, functional fabrics.

"The bold collection includes tanks, cropped shirts, skirts, shorts and jackets, all in neon and surf/skate-like geometric patterns that bring back the vibes of Agassi’s groundbreaking on-court style."

When I looked up the skirt online, I saw that I could get it for a discount at Tennis Warehouse. But in keeping with the "shop small" theme that I already follow and that the Open promoted, I got it at the tennis store in Fairfield after another fabulous day at the beach. 

"Maybe it will improve my game," I said to the salesperson.

Well, actually, it did.

I had this thought about my game:

For all the years I've been playing, and all the lessons I've taken, maybe my game should be a little better. 

But for all the days I spent almost dying, maybe my game should be worse...or maybe I shouldn't have a game at all.

Therefore, I am probably right where I am supposed to be.

Also, I'm having fun and getting exercise. When I first came back (multiple times) and went to clinics, I could barely keep the ball in play. I remember feeling kinda bad that I was gumming it up for the other players and feeling embarrassed that I couldn't do what I wanted to do. Now I get asked to sub in groups and feel like a valued member of the tennis community. And in the four days that I played this week, my foot didn't hurt!

Just to make sure it stays that way, I went out to Shutesbury, to the foot fix-it guy Ken Holt, and got a new pair of orthotics. My last pair was three years old. I was using a pair that was even older that got mixed up with the three-year-old pair. Ken is not seeing people in his office; you drop off your old orthotics and he makes the new pair based on it. But I wanted to make sure he was working off the right pair, so I met him in his driveway (at a distance of course) and showed him both pairs. I couldn't tell, but he said it was easy to see which was the newer pair. 

With our democracy at stake, foot problems and tennis level ponderings seem very shallow, so, I'll just say that although I found door-knocking easier when we were in the real world, I am doing some phone banking. I wrote postcards to Florida voters to encourage them to vote by mail, but that part is over. And the price of the shirt to go with the skirt was too much so I didn't get it, though who knows, maybe my game would go up another level if I matched. 

Sunday, September 6, 2020

Birthday and beach day good, foot pain bad

I had a great pre birthday, birthday and post birthday followed by a bad foot day. The bad day turned into more. 
Something re-activated the dreaded plantar fasciitis, making me a bore to anyone who hasn't suffered from it. One of my tennis buddies had it so badly that she had to skip tennis for a while and go to physical therapy. In between games on the court, she showed me some of her stretches. I feel like I know them all...I actually threw out my boot because I was done with it. The moral might be that even if you have a dumpster in your driveway, never throw anything out.

I have been going to the chiropractor and have contacted my orthotics guy, Ken Holt, because I wonder if it's just a matter of getting new orthotics.

A friend said he couldn't keep track of my birthdays, and I understood. One original birthday and four re-birthdays. 

It was great to have the three kids and one cute little boy at my house for the pre-birthday. We ate outside and were going to stay outside (because, COVID) but Callen wanted to go in. We thought of not doing it but all of a sudden we were all inside. We spaced out and that was a while ago already so I figure it was OK. I loved seeing him at my mother's piano next to one of her paintings.

On the real birthday, I played tennis and went out to eat with Boyfriend, for the first time. People said that 30Boltwood, in Amherst, does a good job, and they were right. 

A couple of days later, I got to go back to the Fairfield Beach Club, where I had great success in getting Callen's little shoes on him while Ben was busy with Nell. Callen had eaten a Spiderman pop and got more on himself than in his mouth. I suggested we go wash up. He took my hand and we headed off. That little hand in mine was worth the two-hour drive. I thought we were going to a certain bathroom but he led me to another room with a big sink in it. I picked him up and turned on the water, which he seemed to be trying to catch in his hands. 

This of course makes me think of doing the same thing with my little kids.

At the end of the day I enjoyed a swim in the calm Long Island Sound. I miss seeing the ocean at Cape Cod, but I think it was Katie who pointed out to me that since I'm not allowed in the ocean, this is a good fit for me. Ben pointed out that there were also no sharks.

If you don't care about feet, you can stop here.

 On top of that, my neuropathy, which has been pretty tame, has gone on and off crazy. The other night, I felt like my feet were electrified. I don't post too much in FB groups such as Our Neuropathy Friends, because everyone is going to have a different opinion. But if a lot of people have the same opinion, for example on a kind of CBD that is effective, I might be interested. That group is recognized by The Foundation for Peripheral Neuropathy, by the way, 

Hello! I haven't posted in a while because I've been doing OK, meaning, a low buzz in my feet but not that bad. 900 mgs of gabapentin twice a day, or an extra 300 if I want. I don't know what happened. Maybe it's the rain that is coming. My feet got totally electrified, on top of a return of plantar fasciitis. A while back I tried CBD, THC and a combination and was never that happy with the results so I stopped. I was just staring at some chocolate that is 1-1 and wondering if I should take a nibble but I didn't. CBD doesn't really do anything and THC makes me a little stoned, even if I take a little/ I guess it works to take your mind off the neuropathy but I've kind of been there done that with that feeling. As you all know it is very upsetting. I took 5 mgs of oxycodone before. Now it has worn off. Ibuprofen has a bad effect on my kidneys and Tylenol of course is bad for the liver. I put CBD cream on my feet and that helps a little. I guess my question is whether people have had good luck with CBD. The kind I have now is made by Good Body Products in Vermont, for what that's worth.

Mostly it was good to get a little support.

"People that dont deal with this problem have no idea of how debilitating and relentless it is," one said.

Mostly they are doing the same as I am, rubbing different things in their feet. One said he had it so bad that he had to stop work and apply for Social Security Disability.

Someone said capsaicin in a gel, but I put that on my toe once when I had problems and it burned my skin. 

But then after a string of bad foot days I had one of my best tennis days ever. So in conclusion it's hard to figure.

Tuesday, August 18, 2020

Hard to miss hard court dedication at special place

This morning, George was to speak at a dedication for the new hard tennis courts at The Holyoke Canoe Club. He got the project started, donating $10,000, and others followed his lead and reached the goal of $25,000. I did my little part. He said some 60 people donated. Anyone who donated could cut a piece of the ribbon. 

When they reached the goal, he had said, with a big grin on his face, that he felt like George Bailey from A Wonderful Life. 

Apparently enough people said they wouldn't attend that the celebration this morning would be under the limit of 50 people set by the governor. I thought of going. I really wanted to. But concerns about my funky immune stopped me. He is always there, so I think I will go over this afternoon to ask how it went. 

I did a Serenity Yoga Studio yoga class (at home) during the time of the celebration. The teacher lives nearby, and next time I might do it at her house. I gave Maddie a good walk first so that she wouldn't come and try to sit on the mat with me. She seems to like to do that. I like it when she lies down beside me but not when she hogs, or rather dogs, the mat. 

George has helped me so much during all of my comebacks. It's not just the tennis. It's having the clinics – summer camp for adults. I told him I don't know if it's improving my tennis, but I come for the fun. He said it is, so I'll take him at his word. It's figuring out a way, this year, to have socially distant watermelon during breaks and place our chairs far enough apart and telling stories. We both talk about our fathers and tennis. "My father always said..."

My favorite of my own is, "Don't kid yourself how good you are when you're hitting with the pro." George says it's not totally true because he often hits us hard-to-get balls.

It's the breeze and the river and his "air-conditioned court," the one closest to the river. 

It was telling me not to take more than one step when I first came back after my fourth stem cell transplant, because that's all I could do. If you didn't know him, you would have been insulted by the way he said it..."Don't go for that ball, you won't make it." 

When I got to the point of being expected to get more balls, if I missed one, I would joke, "but I was in a coma." That would have been 11 years ago, when the coma was in the recent past. One day when the coma was farther into the past, I said, "I guess I can't use that excuse any more." So I stopped. 

In any case, he was a big part of this story I wrote for about how tennis helped me recover from leukemia.


Well, I guess I forgot to post that one!

Later in the day we went over and hit some balls and sat on chairs at the hard court and heard about the dedication. The idea is that these courts will be playable further into the cold weather than the clay courts. If the inside season started now, I wouldn't go in. I would of course miss tennis in the winter. If things change, maybe I would change my mind. I look kind of silly in this mask in the photo but I took the photo after tennis at Longmeadow High School courts with a little explanation of why the smell from this kind of mask brings back bad memories of wearing these when I was severely immunocompromised. Hey, this is kind of related to tennis: something I wrote about backhanded compliments. 

Sunday, August 9, 2020

'There's no crying in tennis'


In my opinion, the goal of a volley drill is to keep it going, to practice control, not to win a point. You don't want to hit a pouf ball because you need momentum, but you don't want to slam it either. I probably shouldn't have said anything, but I did on Wednesday when the player on the other side of the net was playing speed ball. We got nowhere near the number of volleys that George wanted. I don't remember exactly what I said, but it was something along the lines of "I think it works better to hit it more slowly." Or maybe it was, "I think it works better when you don't hit it as hard."

Her response: "I'm here for me too."

Say what?

She was not one of the regulars. I actually know her from Friday night mixers and team tennis, and we have a good rapport, so I didn't get why she was so edgy. (I was going to say hostile but that's a little bit much.) People understandably don't like to be told anything by anyone except for the pro. I get it. But at least have a better response than "I'm here for me too." It didn't make any sense. Who knows, maybe it bothered the writer in me. "Here for me too" doesn't work if you're not keeping the ball in play.

A friend (who we love) who doesn't live here anymore hit it equally hard in drills, also to the point of defeating the purpose. If we pointed it out, she would just say "I can't hit it any other way!" or something like that. Nobody got defensive and nobody got upset. We would just laugh.

In any case, on Wednesday, we rotated soon after. In two rotations, I ended up next to George and opposite the hard hitter and another player. One of her first balls hit me hard in the arm. My skin is very sensitive, and my sympathetic nervous system is probably over-reactive. I had to fight back tears. (There's no crying in tennis!) I grabbed my arm and gave her a look. "I said I'm sorry. It wasn't that hard," she said. I didn't hear the sorry part but I don't doubt it. But wait...the "It wasn't that hard part" wasn't necessary. It hurt, so it was hard enough. When we rotated again, I walked off the court to collect some balls and collect myself.

That left three in the next rotation. My spot would have been against the hard hitter. "Ronni doesn't want to hit with me," she said to them, loudly. It sounded like playground talk. One of the others called over that she would hit with me instead. I actually wasn't avoiding her...It was hot, we had been there a long time, and I was just taking a break. But the drill called for four people and I didn't want to mess it up, so I went back and hit with the other person.

It all ironed out by the end of the morning. But it was not your usual magic day at the Canoe Club. I thought I would get black-and-blue but at least that didn't happen.

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 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 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.

Tuesday, May 19, 2020

Dentist and dermatologists and a trip to Boston, oh my

Silverwood Terrace scenery
Well I made an appointment to go to the dentist. That is happening today. They said people are coming in. At the same time as getting my chipped tooth fixed, I might gather up the courage to say I lost my mouth guard. I must have thrown it in the wash with the sheets but I don't know what happened from there. Or maybe the gremlin took it.

But last week, instead of going to the dentist, I went to the Boston.

This happened in the strangest way. There was a little dark, raised spot near my knee. To be honest, in a twisted effort to prove to myself that it wasn't melanoma, because it was darker than my squamous cell cancers, I picked at it. Yes, I know, that is weird and gross. I got left with a little scab that didn't go away. You can STOP here if you don't want any more details.

To continue, though, as I have said, I have three major dermatologists, and even more, if you count the ones I have seen when my regular ones aren't available. I showed it to the people at Mohs surgery back in the real world before the pandemic, and one of the doctors there said it just looked like a scab. Next, I had a Face Time appointment with one of my other dermatologists. She said that if I was coming in, she would biopsy it, but since nobody was going in for this kind of thing, we would just leave it alone. The Mohs people like to be in on the loop, and asked to see a photo. So I sent them a photo. They day that they got it – last Tuesday – I got a call from a nurse at the office. She said to come in the next day to get it biopsied. COME IN TO BOSTON? I asked. Yes, she said, come in at 3 p.m.

Naturally I was hesitant, as Boston is a hotspot. My friendly personal chauffeur was also not hot on the idea. He didn't want me to go. I do everything they tell me to do, so I was going to go, one way or another. It was out of the question to contact the crazy driver pool. I asked Katie. She said she would do it but that would undo all the work we have done in seeing each other at a social distance, because we're not in the same germ circle. Duh. I thought of driving myself, but I was going to get an excision, and a stitch, in my knee, so that wouldn't have been a good idea. My friendly driver took me.

The doctor was also going to do something about the non-healing spot on my thumb. So there would probably be two biopsies.

I made a phone call to a local dermatologist. I could come in but it would be a week before I could get an appointment. When things settle down I'm going to see if I can get a dermatologist at Cooley Dickinson, since it is in the same network, Partners, as Brigham and Women's.

Meanwhile, I sent a photo to my regular dermatologist and gave her the news that I was going in for a biopsy. She said it didn't look like anything serious. Still, my mind raced. I thought that someone telling me to go into Boston, on a day's notice, meant that they suspected something serious.

So the next day, off we went to Faulkner Hospital, in Jamaica Plain.

It was an easy drive, and quiet at the hospital. Someone came out from behind a partition and took my temperature via my forehead. Then another person passed me a mask on a long stick. I took off my mast and put on the new one. I was in the elevator with only one other person. The office was quiet, with nobody in the waiting room. The nurse said they were seeing about five people a day.

When Dr. Schmults came in and looked at the leg, she said it didn't look serious. She said some word that I can't remember, but after she biopsied it she said it looked either like a seborrheic keratosis or a mole that was traumatized. (Did she say a traumatized mole? I don't remember. Flash back to the picking...) She also took a nice little piece out of the knuckle on my thumb. When she came at me with the needle, I said the thumb was one of my least favorite places for anesthesia, due to the lack of fat. But I had forgotten how good she is at it. She does tiny little jabs instead of one big needle, so that after the first one you don't really feel it.

I haven't gotten the results.

Happy asparagus
The knee has one dissolving stitch in it, but the thumb doesn't have anything. It's hard to keep it dry, with all the hand washing. Yesterday it didn't look so good, so I put antibiotic ointment on it and kept making sure to put a dry bandage on it.

The knee didn't hurt at all afterwards. The thumb hurt a lot. I had to lay off typing for a day.

A couple of days later a went for a run. Maybe I shouldn't have done it, because it was too late in the day when I decided that I was up for it. It was hot, and I was dragging. Yesterday I decided that it was better to do a shorter distance well than to do a longer distance poorly.

The morning walks are nice. I go along the golf course and look at the trees in bloom. The golfers are out, making me wonder when tennis will come back. In tennis, there is concern about touching a ball that someone else has touched, and if the person has the virus without knowing it, then you getting it from the ball. Some people are saying to maybe just play singles. One friend said she heard that you mark your own balls and only touch those. It seems a little far fetched. A friend from the Canoe Club sent a funny video of different ways that people are playing tennis at home. We could hit a ball around in my driveway, but somehow the scenery there, with the dumpster and all, doesn't inspire me to want to do it.

I bought some plants from an outdoor sale on Route 47. My friend isn't happy about going around people, but I have to do some things, though nothing inside. I feel that outside is safe if people are wearing masks and it is not crowded. It fit all these criteria. On the way back, I passed several asparagus stands. I got a bunch from a wagon in front of a farmhouse. When I drove into the back to turn around, an old chocolate Lab named Bailey greeted me. A kid came out of the barn with two kittens in his arms. It felt normal to choose from some bunches of asparagus on the wagon and put my money in the box.

Little boosts.

Tuesday, May 12, 2020

Looks like a trip to the dentist might be in order

(Piece of) tooth on a tray
There are so many times I wish I could talk to my friend Patricia, aka PJ, my doppelgänger in many ways. Same disease, same cancer center, both mother of three kids, both runners and sometime klutzes, both readers and writers...and both having lost teeth.

And both highly attuned to how ludicrous some serious things could seem.

We could write about such things on our blogs and be sure the other would comment. We talked about who had lost the moth teeth (me) and who had the most falls (probably her).

"I know what you mean," one of us would say, when something crazy came up. We'd compare notes, make a joke, offer support.

It's hard to believe she's been gone since 2014.

PJ, if you're listening, something ridiculous has come up.

I need to go to the dentist in a pandemic. Waaaaaaaa!

To back up, my remaining teeth are a mess. Yes, my remaining teeth. I wrote in a post about chemotherapy and teeth that I lost 12. It's a strange state of affairs when you can't remember how many teeth you have lost. But I think I got it wrong and it is actually 13. My remaining teeth are fragile. The dentist put a patch on a front tooth with a little piece missing. The little patch fell off. He glued it back on. Last week when I was eating a tortilla chip I felt an extra crunch. The little patch (probably not the correct dental term) had come off again.

I looked up whether you can go to the dentist. It depends. Broken teeth is in the category of yes you should go. I haven't made the call. I will do it today, I think. Sometimes the day goes by and I don't know where it went. When it was marked by going to tennis or yoga or Starbucks or my other favorite coffee places, it had more structure. I am trying to give it some structure. I imagine that's a challenge for everyone.

On Mother's Day I had a nice socially distant visit with Katie and Joe. We put chairs out in the driveway, scenically located next to the dumpster, still here because all work on the house has stopped. I noticed when doing yoga in the morning that Katie and my mother were watching me from a frame next to my grandmother's candy jar, on top of my Aunt Gertrude's secretary with the secret drawer.

I got in a good run yesterday between rain showers. The mileage from my phone also includes a few miles of dog walks.

I am trying to be mindful about not doing it every day, out of fear of activating the dreaded plantar fasciitis or hurting my knees. We're lucky to be in an area where you can go for a good run or walk without coming across too many people. The route alongside the river up towards McCray's Farm is beautiful. The birds seem to be louder. I can say hello to The Canoe Club across the river. It's good to see water. I stopped at the bottom of the hill and turned around to go back. McCray's is open, and I thought that if I were to live boldly, I might bring money next time and stop for an ice cream.