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.

Tuesday, May 5, 2020

To wear, or not wear, the scarves, and other musings

My sister had lent my scarves to a friend who had cancer and wanted to know if I wanted some back or whether they would set off PTSD. I wasn't sure about the PTSD, so I said I'd give it a try. They came the other day. I picked one up, unfolded it, and made a bandit-style mask out of it. I folded it up and put it back in the pile. I'm still not sure. I can actually sense myself back wearing it. They served me well, so I don't feel bad about looking at them. But I'm not sure about wearing them. 

With Emily
People used to tell me, when I was bald, that my head head a very nice shape. I never knew exactly what to say about that. Thank you, I guess, but I didn't have much to do with it. When I was bald and shuffling along, Diane said I looked like more like my father than when I had hair. I always thought I looked more like him than my mother. It was OK with me that she said that. When I got out of the hospital and needed to learn how to walk again, Joe said that when I was shuffling my feet I looked like my father. My mother used to say, "Al, pick your feet up." That morphed into Joe saying "Mom, pick your feet up." I don't know why it was so hard for me to do it. Maybe because my legs had been swollen due to the kidney failure (like tree trunks or elephant legs, I couldn't decide which) and they had lost their muscle from all the time in bed. The ankle weights to wear while walking around the house helped. When running these days, I still feel like I don't pick my feet up high enough. If I try to change it, though, it messes up with my stride. My stride is my stride, I guess. 

Regarding masks, we wore them when going on the bike trail from Holyoke to Easthampton the other day. It wasn't too crowded, so at first I felt OK about it. But only about half the people were wearing masks. In hindsight I don't feel good about it, so I'm not going to do it again. Running around South Hadley feels safer. There aren't as many people. Though this morning I wore a mask when walking the dog and noticed more people out than I have seen later in the day. None of them were wearing masks. I felt like I had to dodge them. 

Many people are understandably having bad dreams. I actually had a good one. Most of my dreams about running or tennis are anxiety dreams. In the dreams, I'm about to run a race and realize I have forgotten to put on sneakers. I get lost and lose the route. (This actually happened once, in Holyoke, at the Talking Turkey.) I'm late to a tennis match, or I'm going to the wrong club and when I get to the right club, I'm too late and they've already replaced me.

In a recent good dream about yoga, my inner teacher was telling my inner critic to lighten up. (Not sure how that works.) To back up, I don't have a good relationship with chair pose. I feel like I get it right but when I try to integrate my arms it goes all wrong. In the dream, I was in a yoga class (real life, not Zoom) and we were all in chair pose. The teacher said my chair pose was good.

Here's something I wrote about the benefits of actual chair yoga, and here's something I wrote about the benefits of having a dog.

On May Day, I joined in my first rally and caravan for nurses and other front line responders. I had the idea for my sign, and Katie made it for me. We went past the Amazon fulfillment center in Holyoke and past Providence Behavioral Health Hospital, to protest plans to discontinue inpatient mental health services. To say the least, this is the worst time do such a thing.

The caravans happen every Friday. I plan on joining in again.