I'm Still here!

 

Big kid, little kids, on Wellfleet trip

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I didn't write for a long time because in the height of the pandemic, everything that I was going to say seemed so trite and trivial. As you can see, I did it for a while, and then it was all I could do to concentrate on my paid writing. I was used to doing it out of the house, inspired by the coffee shop noise that due to my newsroom years makes me concentrate better than I do at home. But I'm not complaining, because I was privileged to be able to stay at home. In any case, for the handful of people still checking in, I should say that I'm still alive! 

I realized also that for my personal reference, the blog is a good resource. For example, in thinking about possibly going to the US Open, I looked up what happened last year and found this post about the magical qualities of my Nike tennis skirt. It helped me remember what was going on at the time.

 Also it turned out that I am a resource for others. For example, in the spring, I got this message: "Hi Ronni! My name is Lane - I found your number off of your website. This is a little bit random, but I am trying to track down the bench books in Wellfleet. My friends and I came there 6 years ago and wrote some entries, and when returning a few years later hoping to read our messages, the book we had written in was gone. We are coming back this week for another reunion and are determined to find where they are stored. I found your blog post which noted that they are maintained by a local resident. I was wondering if you had any information on who it was? Thank you so much in advance for any info you might have! " They had googled bench book, which is at one of my favorite places in Wellfleet, overlooking Duck Harbor, and found an entry on my blog, maybe this one. 

One thing led to another, and it's kind of convoluted, but they did find the keeper of the book, with some info that I gave them as a starting point. He texted that they were students at Carnegie Mellon University, in Pittsburgh, and I replied that I had just interviewed a professor from the school, for this story on pandemic pivots, and he said they had taken a class with her. Hashtag small world.

I have been doing the usual: jogging, playing tennis, dealing with skin cancer, doing yoga, writing... The skin cancer is actually not an aside like I just wrote it. I had one on my nose, a squamous cell as usual. I didn't think it would turn into such a big deal, but I ended up with 12 stitches on my nose. It was so hard to keep it bandaged. I needed help. Then I went to Boston to get the stitches out because I figured they knew best. But they left one stitch in, so I had to go to the local doctor anyway to get the stitch out. 

I am also dealing with a senior dog (14.5 years old ) who didn't bark her whole life and who now seems to be getting it out of her system. My vet wants me to see a dog behaviorist . (Apparently you can teach an old dog new tricks.) I know what the problem is. She must have dementia because she wants to be with me but goes into another room and starts barking and seems to forget that all she has to do is stay in the same room. I gave in and made the appointment because who knows, I might get some tips. I have been putting her on a leash and going into the other room where she is, for example the dining room, and bringing her back into the kitchen with me. I try to stay calm, because I assume that if I raise my voice, she will think I'm barking at her. But I am only human, and if she is in the same room as me and starts barking, I do sometimes say STOP! More often, I go over and give her a pat or just look at her and wave hello.

I volunteered at a fabulous program, Moving on Up With Tennis and Education, which will be the topic of another post if I don't disappear again. 

It was so exciting to get some freedom and go to the Cape with the family and not worry about hugging. The little kids have the beach in Fairfield, but they seemed to be exhilarated by the waves at the ocean. There were enough waves for it to be exciting but not so many that it was hard for me to get in and out. (And no sharks.) So I went in also. I got on my back and floated like my mother used to do. I looked up at the blue sky with the white puffy clouds. I will admit that Katie had to help me out. We had a moment when I did a belly flop in the shallow water. "Don't yank on my arm!" I yelled, or something like that. We had a good laugh. I didn't drown. We walked on the beach to the other parking lot where the cars were. (Long parking story, maybe not that interesting.) It was almost a mile, but Nell and Callen did well. 

I thought it was a bit of an overreach when Ben said he wanted to take the day ferry to Nantucket, have lunch at The Rose and Crown (an old haunt) walk around a little, and go back. But I was wrong. It was great. We drove approximately an hour to Hyannis, took the ferry that was only an hour as compared to the longer car ferry that we used to take, enjoyed lunch and walked a little and then went back. I told the kids about throwing a penny in the water as we left, as a sign that we would be back. We did it, so of course we'll have to go back. 

With Joe and Nell

Cape trip #2 is supposed to happen in a couple of weeks. Diane and David were away for the first one, and we have all been looking forward to getting everyone together. The taste of freedom was so liberating. And all those hugs. Now we are starting to worry about the Delta variant. I am back to wearing a mask in stores. I am back to wondering, what counts as "immunocompromised?" (Those are among the ones who might have greater complications.) Is it me? I don't know. I am still on one milligram of prednisone, which compromises my immune system somewhat. And the transplants themselves compromised my system...somewhat. But 12 years from my last transplant, (I wrote about forgetting my birthday) , I am not immunocompromised like people undergoing treatment or right after it. I asked Melissa way back in the EPA (Early Pandemic Era.) She said my immune system is good but not perfect.  We are still planning on going. Fingers and toes crossed.

Adoring a photo, annoyed about my skin

Diane, Callen, and Joe at the dock

I love this photo. I think I should get it framed. It is better than a posed photo. If I feel down, the delight in Diane's and Joe's faces will make me smile. The delicious feel of those tiny, soft hands. And of course the dock in Wellfleet. Everyone agrees the extra hour to get there is worth it. The playground nearby. P-L-A-Y-G-R-O-U-N-D. Spelled out in case it wasn't going to happen.

Back to reality, I got the results of the visual field test that I thought my left eye had failed.

I passed the test after all. It goes to show you something. I’m not exactly sure what it is. Well, actually, I do know but I’m not sure how to fix it because it might be a personality trait. The tendency to catastrophize. The doctor was super nice. She said that the experience of taking the test is subjective. Some people hate it. Some think they failed but they didn’t. Some don’t mind.

She said I had very nice tears. I didn't know whether to thank her or not. It reminds me of not knowing whether I should say thank you when I was bald and people said my head had a very nice shape. I'm pretty sure I said thank you to be polite, but I didn't have anything to do about it.

Tomorrow I get another Mohs surgery. It is on a tiny spot on my neck. The larger darker one that I feared was melanoma because it looked different was really “just” a squamous cell on the skin. The one on my neck is invasive, but, again, invasive in the skin, not into my body.

The dermatologist showed me an enlarged photo of my neck and pointed to the spot. I nearly fell off the table. “That’s how my neck looks???” I said, or maybe I just gasped. If polka dotted necks were in, I would win a prize. I think I'll go re-read Nora Ephron’s “I Feel Bad About My Neck.”

I used to be more concerned about the procedure. Now I’m mostly annoyed about missing tennis. I’m going to squeeze in one more day, tomorrow morning, at the Canoe Club. Then my nice chauffeur is going to drive me to Boston, which is twice in two weeks because last week I went to see one of my dermatologists, followed by a few hours at the place where everybody knows my name, the Kraft Family Blood Donor Center, where I get the light treatment on my blood.

The consensus is to try to go every three weeks instead of every other week because I seem to have reached a plateau. I’m stuck with the lumps and bumps and the “band” along my abdomen but Dr. Liu (Stephanie) is pleased because you can pinch the skin on my thighs (yahoo!) whereas when this problem (graft vs. host of the skin) started, my thighs were rock hard. You might want that for your abs but not for the rest of your skin. If we hadn't taken action, I might have ended up with a new problem: scleroderma, or hardening of the skin. And that would not have been good for my tennis game.

Talking about many things to celebrate

Sitting on a bench at the bay

I once feared I would never see my grandchildren, and now they are 2 and almost 4, an event celebrated at a family cookout last week, followed by a double dose of deliciousness at Diane and David's in Wellfleet this weekend. Nell and Callen are both July babies, hence the family cookout last week.

This weekend we played at the bay (warm enough to swim in) and in tide pools the beach, ate at the dock, enjoyed ice cream that dripped all over us, and, due to the unusual heat, spent more time in the house than we would have otherwise done, but we played board games and talked, and I soaked all that up also, because the "scenery" in Diane's deck garden is beautiful also, and just looking at my grandchildren's beautiful faces was scenery enough. Not to mention, which is what I just did, enjoying two of my own "babies," Ben and Joe, and talking on the phone to Katie.

I thought I would never find my watch, but it miraculously appeared, and I feared I would never get that darn stitch out, but guess what, I did.

Last time I wrote, I sounded so frustrated, and then, sorry to say, I disappeared.

I didn't actually think the stitch would be in my cheek forever, but I wasn't sure how I would get it out. I finally went to the CVS Minute Clinic in Northampton, waited less than five minutes, and a lovely nurse practitioner removed the stitch. The area still doesn’t look great because I’m applying Efudex, the chemotherapy cream to it.

The one that I was worried about, on my wrist, also just needs Efudex, while one at my neck, which seems to have disappeared, is going to need a Mohs surgery.  I thought that because it was darker, it was a melanoma, but the one on my wrist was just more of the same.

With the birthday kids

I was wrong about the misplaced watch, also. I thought that because I couldn’t find my watch, I was losing my mind, a thought process that is the opposite of what Susan Krauss Whitbourne Ph.D., suggested people do in a piece headlined, “Mindlessness andMemory Slips: How to Find What You’ve Lost.”

“Don't jump to conclusions that you're losing your mental abilities,” she writes.

I actually followed the recommended steps.

“Instead of panicking, sit down and think.  Reconstruct the series of steps you followed when you put the item down. Remind yourself of what you were thinking and feeling. Context-dependent memory, in which you put yourself in the same frame of mind, is your best friend right now. You need to reconstruct the entire scenario mentally, walking through it like a crime scene.”

In a New Yorker essay, When Things Go Missing, Kathryn Shultz wrote, "At best, our failure to locate something that we ourselves last handled suggests that our memory is shot; at worst, it calls into question the very nature and continuity of selfhood. (If you’ve ever lost something that you deliberately stashed away for safekeeping, you know that the resulting frustration stems not just from a failure of memory but from a failure of inference. As one astute Internet commentator asked, “Why is it so hard to think like myself?”) Part of what makes loss such a surprisingly complicated phenomenon, then, is that it is inextricable from the extremely complicated phenomenon of human cognition.

This entanglement becomes more fraught as we grow older. Beyond a certain age, every act of losing gets subjected to an extra layer of scrutiny, in case what you have actually lost is your mind. Most such acts don’t indicate pathology, of course, but real mental decline does manifest partly as an uptick in lost things."

She continues, "No wonder losing things, even trivial things, can be so upsetting. Regardless of what goes missing, loss puts us in our place; it confronts us with lack of order and loss of control and the fleeting nature of existence. When Patti Smith gives up on finding her black coat, she imagines that, together with all of the world’s other missing objects, it has gone to dwell in a place her husband liked to call the Valley of Lost Things."

I really think that is where my cherry red watch went. It was one of my favorites. And then it simply disappeared. Either that or someone at the jewelry store absconded with it. When I gave up looking for it, at least I had some closure.

I sensed that the purple watch might have joined it. Either that, or it was at the BF’s house. But he said he looked all over and couldn't find it.

The other day I was lying on his floor doing one of the exercises that my occupational therapist has prescribed for strengthening my rhomboids. Did I say I have now added an occupational therapist to my long list of experts? Probably not. The goal is to loosen up the tendons in my hands and wrists . Graft vs. host disease of the skin has tightened them up to the extent that my left hand won’t open all the way when I try to lay it flat.

The light therapy, ECP, has loosened up my fascia and skin, but not enough in my hands. In yoga positions such as down dog, my left hand looks like a claw, and I’m working towards flattening it out. The rhomboid strengthening is partially because it’s all tied together and also because of the chronic pain around my left shoulder blade.

As I was lying on the floor, I turned my head sideways and saw something purple under the bench. It was my watch. I whooped and hollered for joy!

I was not crazy after all. A wonderful sense of closure floated over me. I have to think about why my default was to blame myself, but, judging from the passages I quoted, that is a common thing to do.

Here’s something I wrote about once being the Queen of Rashes. My skin isn’t so great, and it is really uncomfortable to cover up as much as I do at the beach, but I’m glad that that was then and this is now.

Wandering around Wellfleet, 'enjoying' a little fall

I was skeptical about riding the little Birdy folding bike,which looks like it is better suited to a circus than to a road. With its long neck, it brings to mind an ostrich. But riding it in Wellfleet, I was pleasantly surprised at the smooth ride and how much easier it was to go up a hill on it than it is on my regular bike.

Uncle Tim's Bridge

I haven’t ridden a bike since the fall, and I only went to spinning a couple of times, so I wasn't sure how I would do. Not that I wasn’t out of breath going up hills, but it was easier than I expected. I knew the center of gravity was different than on my bike so I didn’t want to let loose going down hills. Next time I’ll be a little less cautious so that I can get the benefit of that feeling of flying. But I didn’t want to fly over the handlebars.

We rode for about an hour. At the end when we got to the dirt road leading to the Airbnb, I figured I should get off and walk. But before I had a chance to do it, I got caught up in a vine reaching out from the bushes. I toppled backwards onto a cushion of vinca. The bike fell the other way. It was such a short distance, and the landing so soft, that I sat there and laughed. Later, I told Katie that the vine had grabbed me and pulled me in.

Birdy biker

With effort, I pulled the bike up and held onto it while I pulled myself up. There were just a few pinpricks of blood on my shin. I walked down to the car, where Jeff was putting the other bike away. He said when he looked back, I seemed to have disappeared! We agreed that it was a step up from last year, when my heavier bike fell on me and I needed 12 stitches. I’m making progress, from stitches to a dribble of blood. He said it would be nice to have a bike ride with no accident at all. I had been so careful during the riding part and had gone and had a mini-accident when I wasn’t even riding.

My first reaction was to want to call my friend Patricia, aka PJ. We always

Vine sticking out and site of topple

enjoyed comparing our falls. We made each other laugh. Mostly talking to myself, I said how how it was hard to understand what had happened. One day we were comparing notes about our similar lives, our diagnoses of acute myeloid leukemia, our multiple bone marrow transplants, and the next day she was dying.

I’m not sure when they stopped using bone marrow transplant and started saying stem cell transplant. They are the same thing. When I had mine, I was a “BMT” patient. It sounded like a subway line. Probably because in the older days, they got the stem cells directly from the bone marrow and now they get them peripherally, out of the blood stream.

On our first day in Wellfleet, when we went down to the beach, I did a walk/jog along the water and  pondered the difference between the way I see the world now as compared to the four times that I was a baby, after each stem cell transplant. 

The misty day lent itself to introspection. I went up ahead and wrote in the notes section of my phone. When I read it later I was going to edit it because it seemed a little overblown. But I let it be, because it captured a moment.

Trying to recapture the gift of reentering the world after stem cell transplant and seeing everything as though it’s new such as the water lapping at my feet as I walk along the Atlantic Ocean.

It’s like the joy of a child , for that is what I was. I can’t go back nor do I want to but I can try to stop the mental chatter that runs in circles around unanswerable questions or flits around the edges of the mundane. Should I work on my essay, should I write a blog post, should I answer emails, should I wear contacts to the wedding.... Switch.

Like you tell your doubles partner only you’re telling yourself. Paw prints and footsteps in the sand. Waves cresting. Waves crashing. Tide coming in. My beach speed is in between a jog and a walk. I could go a long ways but behind me I seem to have lost my friend in the fog. Sit down to wait. Don’t want to be like Scarlet shouting Ashley, Ashley, through the mist. Trying to think of words to describe the smell down at the beach. Something you wish you could bottle. Brackish.

We did one of my favorite walks, over Uncle Tim's Bridge and the "bench book" where visitors write how much they love the peaceful spot.

Yesterday when walking around Provincetown in intermittent rain, we stopped into the Provincetown Library to see what was with all the talk about the boat in the library. I didn't expect it to be such a big boat. The half-scale model of the schooner Rose Dorothea has a 66’6″ length and a 12’6″ beam and takes up a good part of the second floor. I almost forgot to mention one of the important things, which was getting a good, strong, cup of coffee after lunch, and taking it to the library.

In Wellfleet: some sadness, some sun, also tipping over but having fun

View from the bench on an overcast day

One of the first things I did on this little trip to Wellfleet was to take my beau over Uncle Tim's Bridge to the bench book. It is one of the most peaceful spots that I know.

We sat on the bench, and I wrote down my thoughts about coming here with my kids, and about how restorative it was to sit there and let your cares drift away. A nearby resident has been maintaining it for years. When it gets filled up with peoples' thoughts, someone takes it and places a new one in a little wooden treasure chest.

Waiting for table at Beachcomber, 2012

I looked up Uncle Tim's Bridge bench book and my blog post, Wonderful Wellfleet, came up fifth. I must have unintentionally good SEO or something. It was from 2012. I wrote this about our visit to Provincetown: "Joe, who is understandably upset by my falls, watched me like a hawk when we walked through Provincetown's busy streets. Step up, step down, step up, step down, he said. At one point when we were all in a gallery, I "escaped" by going out to the street by myself. "Hey, come back here and get back on your leash!" he said. I ultimately just walked along holding his arm, which was comforting because I knew I wouldn't fall."

I also wrote about how the seals seemed to be getting too close to the shore on the ocean side. Most everyone now is talking about the seals, what to do about the increasing population that is bringing sharks closer to the shore, and specifically about the recent fatal attack.

Jeff and I walked on that beach, Newcomb Hollow, on a day so misty that my glasses kept getting wet. People stood silently for a few minutes at the memorial for 26-year-old Arthur Medici. You don't want to speak badly about the dead, but all around, in the discussions, some were wondering why he and a friend went so far out, off-season, on a day when there was no lifeguard to warn them of the danger.

Memorial at Newcomb Hollow Beach

Some local officials want to cull the population of seals, which are on the endangered species list, but many are against that and are proposing other ways to keep swimmers safe, and to help fishermen who say the seals are taking their fish. Maybe the idiot climate-change deniers should wake up to the fact that there is a scientific reason that the warming oceans are contributing to the problem.

But back to good things.

The sand was hard, providing a good surface for a run, so I ditched my Tevas and went up ahead a little when walking on the beach on this moody day. It was actually a trot, in between a walk and a run. But it felt good. I stopped to do some yoga.

 Out of our four days here, only one had some sun, but in a way it was good because we didn't have to worry about getting sunburnt. We covered most of the bases: a walk along the bay and beach, dinner at Mac's restaurant and lunch at the dock, a little shopping, a walk around Provincetown, coffee, a visit to a newfound treasure – Chequessett Chocolate –  in North Truro, dinner at a new discovery, also in Truro, Blackfish, (formerly a blacksmith shop), and just plain breathing in the wonderful air.

I also spent a little time in an ambulance.

We were biking on the bike path. I got a "foolproof, "step-through" frame after my accident on my old bike. To me it does not seem like a real bike. But of course it is, and you see more and more of them around. Anyway, it was quiet so we didn't have to make full stops at the stop signs. When we got to Orleans Center, there was a sign instructing you to get off your bike. Jeff stopped and went across.

Cloudy day on Newcomb Hollow Beach

Maybe I was daydreaming about how I used to work there, and about how it looked different from when I hung out there with my high school boyfriend.

Maybe I hadn't stretched enough. I don't really know. My right foot was on the ground, and as I lifted my left foot over, my toe got stuck in the frame near the pedal. The bike started to tip over. I had that moment when you say, "Oh, no." I tumbled to the pavement. The bike tipped over onto me. The brake handle cut into my shin. I sat cross-legged and took one look at it and squeezed my hand on top of it. I was wearing gloves and pressed them down hard. It looked like a good gash.

I motioned to Jeff. He came over, walking pretty slowly, because he said later that he thought I was taking a rest to do yoga. He went back to get his bike. A couple stopped. The man went into the bike shop right next to wear I was and brought out some gauze. Jeff brought a bandana over. We made a tourniquet. A nice Orleans police office, whose name, appropriately, was cutter, said he sees all sorts of crashes at the same spot. Some ride right into the yellow pole.

He called the paramedics. They came in an ambulance. An Orleans police officer took Jeff to an Eastham police officer who took him back to get the car. I said why don't we just bandage it tightly so we could keep riding. They said they didn't think so.

The paramedics took me into the ambulance. I lay on the stretcher and had a lovely talk with the female paramedic. We talked about many things, ranging from plantar fasciitis to the propensity of  seals. She showed me a video, taken from above, of seals along Monomoy Island. There are apparently 50,000 off the coast.

I guess there aren't many nerve endings on the shin because it was stinging more than hurting.

Jeff came and we went to urgent care at Fontaine Outpatient Center. A friendly doctor said that in season, every day they see some 150 patients who have had some sort of accident. My blood pressure was high, though not terrible, about 155 over 100. I was glad that I had Ativan in the car.

Ooops

The doctor gave me 12 stitches. I also got a tetanus shot. He said that if I put a sock over it, I could bike the next day. That takes us to yesterday. We biked around some trails in Provincetown and ended up a beautiful Herring Cove Beach. A (relatively) new concession stand, Far Land on the Beach, appeared in front of us. It had a solar roof and not-your-traditional offering, such as kale salad, which the woman at the window promised that they massaged, so it wouldn't be tough.

Looking out at the sun glinting on the water, we had the best kale salad with chick peas, and a fish sandwich with french fries. I held up a crispy french fry and said, this is the life, a crispy french fry, a fresh fish sandwich, and kale salad that actually tastes good.

Too bad this is the last day. I'm sitting on the little deck.

Our Airbnb hosts, Susannah and Russell, have three baby goats. It's funny to be on a beach vacation and hear goats in the background. The black cat, Fiddle, is around here somewhere. Susannah is going to make us eggs. Every day she bakes wonderful muffins. She made blueberry, cranberry, and her speciality, with chocolate mixed in.

Yesterday, I stretched before I got on the bike. Jeff watched me get on and off and concluded the tipping over thing was a fluke. Since we did pretty well yesterday, we're going to take one more bike ride before we leave the Cape.

View of Herring Cove

I wanted to jump in a pond, especially since there wasn't time to jump in a lake in Wisconsin, but now because of the stitches I can't do it. That's OK, though. It's a beautiful day and we're going to meander out of here and make a couple of stops, including maybe a bike ride at Nickerson State Park. It's hard to leave Wellfleet, for sure.

Joe called and I told him that the bike tipped over onto me. He said it's an improvement because it wasn't a bad fall. After one of my BIG falls, Aldo, the Mount Holyoke tennis coach, said I need to learn how to roll when I fall. That's kind of what I did, so I guess it goes with my theme of learning how to fall, in general.