Thursday, June 27, 2019

Running around running two businesses

Sometimes it feels like I have two jobs, the business of running my medical care and of running my so-called freelance writing business. An example of this is how the other day played out, when I wanted to write but couldn't fit it in.

I am concerned that a spot on my wrist could be skin cancer. As per a nurse’s instructions, I sent a photo of it to one of my dermatologists, Dr. Liu, on Patient Gateway, the Partners portal, but the photo is useless because it rejects the larger size and when you make it smaller, it is pixilated and therefore of no use.

Dr. Liu said she would look at it when I see her at the end of July. I called her scheduler to see if there were any earlier openings and she said there was a rare occurrence! An opening with Dr. Lin at 11:15 yesterday at 221 Longwood in Boston.

This led to a domino effect of canceling the occupational therapy appointment I had for 2 p.m. I will have to do my hand exercises because she measures my progress on opening up my hand more, specifically my left one which was starting to look like a claw, due to tightening of the fascia resulting from graft vs. host of the skin. The ECP is helping in other areas by loosening up my skin but not in my hands.

Then on to calling in prescriptions. I just call the pharmacy and speak to the recorded creepy voice except for one doctor who says the automated refill requests go to another office so I have to call to make sure she gets it.

Next it was time for visual field testing at the ophthalmologist’s. This is nerve-wracking. You have to push a button every time you see a flashing light. They are testing for possible glaucoma and loss of peripheral vision. My mother had it so I’m at risk. I did it last year and was OK. The technicians were cranky. I was tired.

“OPEN YOUR EYES WIDER!” they said. “DON’T LOOK TO THE SIDE, JUST FOCUS ON THE DOT.” They did the right eye twice because the machine wasn’t working the first time. By the time they got to the left eye I was so tired that I wasn’t catching the dots.

I’m afraid that when I see the doctor, she’s going to tell me that I failed on the left side.

I tried to change today’s ECP so I would not have to go twice in one week. I didn’t get a return call or email. I’m going back for the procedure today.

I’m having trouble getting Maddie into the car and might have to get a dog ramp.

I took an extra gabapentin because I take less than the therapeutic amount, due to the side effects. Nobody wants to take more but I wanted to see if it helps the neuropathy because the CBD isn’t doing it. I’ve heard I could take more CBD, but nobody knows. Before tennis on Monday, I took an extra gabapentin and had one gummy that is 1 to 1, CBD to THC. It is just a tiny bit of THC but it was bad for my tennis. My arm was wobbly and I wasn’t making my usual net shots. I think I should stick to THC at night. In any case, either I warmed up or the THC wore off, because by the third rotation I was doing fine.

I guess I could have skipped tennis to get some writing done, but as exercise is part of my health care routine, I wasn’t going to do it. In summary I seemed to spend most of the day planning and scheduling and rescheduling appointments, and not any time writing. It is necessary but not satisfying. All I can say is we transplant recipients sure need a lot of maintenance and sometimes it’s hard to get other things done, in general.

Saturday, June 22, 2019

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.

Sunday, June 16, 2019

Back from the brink...of killing the blog

Fooling around in Stevens Point Sculpture Garden
I have been thinking about stopping my blog, so I took a break to see what it felt like.

Of course it's hard to do something major without looking it up, so I googled, "How do you know when to stop a blog," and this one from The Freelancer read, "Sometimes you feel like your insights on a topic are just tapped out," and "Readers can tell if you’re emotionally checked out from your blog, so it’s often better to divert your creative energy elsewhere than to keep updating (or have the guilt of a dormant blog weighing you down)" and "The turning point for many writers comes when they realize the topics they’re covering for free (or for pennies of advertising revenue) could get them a larger payday from an established publisher."

Some people have suggested I monetize the blog but I don't have the energy and I think it wouldn't generate much anyway. 

Put a quarter in, and she talks
A friend said don't stop, people like it, people are inspired, you tell good stories. Another friend said that I can use it to share stories that I write, such as this one about the benefits of forgetfulness. specifically referring to Mohs surgery but applicable to other hard stuff.

It has definitely helped jog my memory. Some dates are seared in memory, others, not so much. For example, I asked Ben and Joe when I was on the WEEI/NESN Jimmy Fund Radio Telethon, and then realized all I had to do was look it up to find out it was in 2012. I had a trip down memory lane, remembering the stupendous falls – one down on my face while running around the lake and tripping on a root, and the other off my bike while riding on a road – and healed just on time for the telethon. 

In any case, I realized that I did have some new things to say, so, since I'm writing this, obviously I'm not stopping after all. 

Trying lefsa
On a weeklong road trip in the Midwest, with my Honey, (trying that one on), I saw the World's Largest Talking Cow, Chatty Belle, in Neillsville, Wisconsin. which you can read about in Roadside America.  Other fun adventures included a six-mile run walk through the amazing Stevens Point Sculpture Park. Good times with his family included a visit to the Norske Nook, where I had elderberry pancakes, and tasting lefsa, a Norwegian bread.

With Marianne after tennis win
I keep saying I might quit league tennis, because I play enough without it and it stresses me out at times, but I finished the regular season with a win and changed my mind. The win was "the icing on the cake" of a nice day that included a pleasant ride to The Berkshires with tennis friends, good communication and good fun with my partner, and a competitive match where we got a lot of exercise and everyone got along. 

Usually the Pittsfield team wins, so it helped to go out there with low expectations. It reminds me of when with Donna I played my first 3.5 match not expecting to win, and then winning because I hadn't put any pressure on myself. We won't spoil the mood by getting into what happened during the rest of the season.