Thursday, July 4, 2019

Wanted: someone to remove stitch and find watch

The craziest thing that has happened in a while is that a gremlin took my watch a day after I took a photo of it on my way home from ECP. That's extracorporeal photopheresis, the light therapy for graft vs. host disease of the skin, and one of these days I'll have to explain it again because I haven't done it in a while.  I took the photo to show my watchmaker friend Bev how the lavender  complimented my wraps, and that must have been the act that caused the jinx. (The bandaid is from a biopsied spot.)

I have tried to trace my movements and have looked in all the corners but it is nowhere to be found. A friend said it would help to turn a glass upside down on the counter. (No luck.) When I lost a bag of scarves, a friend prayed to Saint Anthony for me. But I never found the scarves, so I don't think it worked. I was really attached to that watch. I thought there was magic in the way it changed colors in different circumstances. That feeling when you just can't remember where something i
Has anybody seen my watch?
s is very disconcerting

If you do a search beginning with "is losing things a sign of," it fills in dementia, Alzheimer's, ADHD and depression. 

"Misplacing things often happens in everyone’s life, but when it is consistent and you cannot formulate a plan to to retrace your steps, it is a problem worth looking into more carefully," according to The Cleveland Clinic. I can't retrace my steps, or else I would find it, but no, I don't actually think I have Alzheimer's.

I'm wearing a green one until Bev makes me a new lavender one. What can I say, the replacement and the old one still cost a fraction of an Apple Watch.

What I really have is a problem with a stitch that I got in the first of two Boston visits last week, when I went on Tuesday for a spot check and Thursday for ECP.  I had called to try to get the two in one day, but the scheduler did not get the message. Well, the stitch is the immediate problem but I also learned that I need another Mohs surgery on another squamous cell cancer, this time a tiny spot on the back of my jaw. A spot on my wrist that concerned me to the point I thought it was melanoma turned out to be a squamous cell on the skin, as did the spot on my face. I need to apply Efudex, the chemotherapy cream, for three weeks. 

The one I didn't even know existed turned out to be the one that goes deeper. 

But back to the stitch. I thought it odd that when I left, the nurse didn't mention it. So I followed past procedure and called my friend, Nurse Jo, who lives down the street and removes stitches if there are not too many. I picked her some flowers. She met me in my driveway and asked where the suture removal kit was. I said I thought SHE had it. She said she used up all the ones she had – on me – and we agreed I would call the doctor about it. At least we got to chat for a few minutes.

Kathleen, one nurse, told me one thing, followed up by Kathy, who told me something else.

Similar-sounding names can lead to confusion. There’s Kathleen, the nurse for Dr. Liu, and Kathy, the nurse for Dr. Lin.

I had been talking to Kathleen about an upcoming appointment with Dr. Liu when she saw an unusual occurrence, and opening with Dr. Lin.  So she gave me the appointment. I was going to drive myself, but I took J up on the offer to drive me, and it's a good thing I did. I didn't expect to have three spots biopsied and get multiple spots frozen. She said I would get fewer skin cancers if I stopped doing my outdoor activities, but she knows they're important for my mental health, so she wouldn't tell me to stop. I protect so much of my skin that the only thing left would seem to be to get a mask for my face and a scarf for my neck.

A few days ago I called Kathleen about the stitch. She said anyone could take it out. I asked about the biopsy results, and she said Dr. Lin went on vacation and would get back to me when she came back but I should feel pretty good because if it was something serious, then she would have called me.

A day later, Kathy called and said the spot on my jaw is invasive and needs surgery. 

I know the difference between invasive on the skin and invasive inside my body, but I ask each time. I like to make sure, and hearing it again is reassuring.

Ann, my blogger friend, died from squamous cell cancer that had spread from her tongue to her organs. It is a different kind of invasive.

Meanwhile, the issue of the stitch is still unresolved.

Yesterday after my session at Amherst Community Acupuncture, my acupuncturist said she could try to snip it out. We sat by the window and she went after it with a scissors. She said she thought she got it all. 

Actually, she didn't. Two little bristly threads are sticking out from my cheek. I don't think stitch removal is in the boyfriend description, and I don't want to go all the way to Springfield for a doctor's appointment. Friends suggested the CVS Minute Clinic. I think that tomorrow, that's the way I'll go.

Yesterday I got a call about scheduling the Mohs, the procedure in which a surgeon removes a skin cancer a layer at a time until all the margins are clear. What I like least about it is that it keeps me off the tennis courts for a few weeks. The needles going in for the anesthesia come in second place in the dislikable department, but the doctor does such a good job that it isn't as bad as I thought it would be when I had my first one.

Odd that a leukemia blog ends up being more about skin cancer.

Thursday, June 27, 2019

Running around running two businesses


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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.

Sunday, April 28, 2019

In Boston, stepping up for life

Finishing first lap, Chestnut Hill Reservoir
My sister drove me to so many doctor visits and hospital trips that I lost count, so it was a great counterpoint for her to drive me to something super fun and celebratory: The Steps for Life 5K to benefit The Gift of Life, the organization that got me my bone marrow donor.

I drove to Newton last night after playing two hours of tennis. I'm still a little under the weather – this cough/cold that's going around is a long one – but I wanted to do it. I haven't been running very much but thought I could do 3.1 miles, and I wanted to do my small part in raising some money and showing up to honor The Gift of Life.

This morning around 8:30 or so, we went over to the Chestnut Hill Reservoir, where I got my number, shirt, and an orange ribbon reading "Recipient."

Over at the Dana-Farber booth (they were a sponsor), it was exciting to meet two women who work in the department that finds matches for patients. I said hello to Dr. Corey Cutler, Dana-Farber's director of stem cell transplantation, and a speaker at the event. I told someone else the story of how Denise ended up donating for me after getting swabbed at to a donor drive for the late, great jazz saxophonist Michael Brecker, who, sadly, could not find a match.

At an emotional ceremony on a makeshift stage, a recipient and donor met for the first time. Then donors and recipients, including me, went up to join them. I was afraid I might recreate my fall UP the stairs in the Paris Metro and trip going up to the stage but I hopped right on up.

I had been watching the forecast and expecting rain, but it was just cloudy and cold, with a little wind. We did group warm-ups to music – lunges and jumping jacks and waving our arms around, very festive  – and then the runners and walkers (and some dogs with their people) went up to the track so we could go twice around the reservoir.

I can't say I really trained for this event, but I figured that 3.1 miles would not be so bad. The first time around was pretty easy, but I was feeling it the second time around. I thought of walking for a couple of steps, but my mind, and my momentum, was attached to my slow jog. I'm kind of strict with myself. "You didn't walk when you had leukemia during a 10K, and you're not going to walk when you DON'T have leukemia and are going half that distance." Plus, the tiny bit of momentum kept me from walking; it was easier to keep doing my so-called run.

The finish line, around the bend, looked far away. I'm glad that Diane took my photo after my first time around. She also took one when I finished, but I deleted it from her phone. (The equivalent of how our mother used to rip up the photos of herself that she didn't like.) Note to self: Next time take off the transitional glasses that get so dark outside that I look like a Blues Brother.

I was kind of bent over and not looking so great when I finished. I motioned for Diane to come over so I could hold onto her shoulder while we walked away from the track so I could get some water and a very welcome bagel with cream cheese. That Diane sure has a good shoulder, literally and figuratively.

I felt like I needed to stretch out my back, so I found a little piece of grass and lay down. A Git of Life staffer came over and asked if I was OK. I said yes, just stretching. He asked if he could help me up, and, well, maybe you could guess that I said no thanks.

If I do another 5K, I think maybe I'll practice a little more. I miss the way I used to feel on those long runs, but the neuropathy in my feet makes them harder to do.

When I lamented my slower pace these days, Diane pointed out that I'm the only four-time stem cell recipient who played two hours of tennis, drove two hours to Boston and then ran three miles. As our father would say, "Good clear thinking."

Monday, April 22, 2019

Two seders and an Easter dinner

Callen and Nell
I was a little under the weather leading up to Friday night, and I thought of not going to the home of my extended family, the Chipkins, for the first seder, but I rallied. We have shared many joyful celebrations and one of the worst nights of our lives. At the seder, someone almost snuck in the name of the Orange Monster (this is a hint regarding that bad night, in 2016,) but a murmur went up in the group to get us back on course. I'm always glad to be with this warm, welcoming family. It's a time of being grateful for many things, and the next day in South Hadley, we were all grateful that Joe took over in the kitchen at our seder after I got things going, because who knows, I might still be serving the potatoes. We have a wonderful tradition: Diane leading a beautiful seder, with contemporary tie-ins, and such must-haves as David's pot roast and Bob's booming baritone version of "Let my People Go." Having Nell and Callen "play" the piano was a joy. Playing with them was a joy. Even being able to get down on the floor and up from it is a joy, and in the theme of the on-and-off 10-year retrospective, here's a post about how I couldn't have done it when I was in the hospital, needing platelets and blood after one of many trips with Joe to the ER. It was a little less than four months after my fourth transplant. I had a fever and was worried about what might be coming down The Pike this time. It turned out to be another fungal ball. I wrote in this post, that after a little walk, "I got dizzy and felt like I might faint. I knew that my blood pressure had fallen. I made it back to my room, and when the nurse took my pressure (standing) it was 65/54. The episode earned me five hours of IV fluids."

Being under the weather now, as compared to then, is obviously no comparison. I've been dragging my feet, literally and figuratively, about doing The Gift of Life 5K in Boston this coming Sunday. Dragging literally, because it's hard to shake off the neuropathy-induced lead boot feeling, and figuratively, because I only signed up today. The Gift of Life is the organization that got me my donor; I signed up for the run last year but at the last minute went to Costa Rica, so when they asked again this year, it seemed like an important thing to do. To make a donation, please click here.

I haven't been running very much and want to get in some little runs before I do it. Yesterday I went a little less than three miles (OK, 2.7), then came back and jumped in the shower so that I could be ready for my next activity, a trip to Framingham for Easter dinner at the home of my Partner/Boyfriend/Honey/Beau's son. Could we take a vote? An Easter egg hunt awaited us. When we got back, we took Maddie for a nice walk.

Today I'm dragging and seem to have neglected the part about finishing the cleanup. Tomorrow is another day...

Earlier in the week, it was AML World Awareness Day, and I wrote about more than 15 years of knowing more than I never wanted to know on the topic.

Sunday, April 14, 2019

Ups and downs in New York City

Pre-theater toast to good times together
The photo is of Katie's hand and my face at Fig and Olive, and Katie took it for me to send to Chaska and Serena to thank them for introducing me to the restaurant. I remember us going there and sitting at a big round table and sharing delicious dishes. 

We were eating before an early show (7 p.m., what would the Spaniards say) of...drum roll..."Kiss Me, Kate," so there I was, going to see the sublime Kelli O'Hara, accompanied by the fabulous Katie Doody, and I was pretty happy! It was a fun, big Broadway musical, with virtuosic singing and dancing, and it didn't matter to me that while the reviewers loved the singing and the dancing, they took issue with the pace of the show and with a plot that the director tried to update without total success. (It's about a theater company is putting on that problem play, "The Taming of the Shrew." ) Hey, I didn't doze off and ask Katie what happened, so that is a success. Afterwards, we had our traditional cheesecake at Junior's, home of "the world's most fabulous cheesecake."

I always take the ticket home as a remembrance – my ticket jar is brimming – and this time I also took another remembrance: a black-and-blue mark, on my thigh, that is bigger than a cantaloupe. I was walking on Madison Avenue after doing an errand when I felt something at my ankles and looked down. I saw a pair of red boots and a dog leash lassoing my ankles. A youngish woman was walking her dog and giving the leash too much slack and not paying attention. I crashed onto the sidewalk. Blood dripped down my left shin. I leaned against one of those big green trash barrels and got help from a cute guy who was outside trying to get people interested in the Tribeca Film Festival. It was something about getting free tickets if you switched to AT & T.

His friend ran into the store to get a paper towel. The woman asked if I was OK and then wandered off. I muttered something about not knowing how to walk your dog. The guy helping me reminded me of Joe. We talked about the U.S. Open while the bleeding on my leg slowed down. Suddenly the garbage can began to tilt back, and he grabbed my arm so that I wouldn't fall back and hit my head. I said I thought these things were more stable, and he said they are stable, but a homeless man was reaching in from the other side. 

I had driven in, so obviously I was driving out. I sat on an ice pack for as long as I could. After I scalded my tongue on hot coffee (I was thinking about Dan), I got a blister on my tongue and, on a scale of 1 to 10, reported my pain at about and 8 when I had a checkup with Melissa at Dana-Farber a few days after. Between the growing bruise on my right thigh, which I didn't even know I had hit, and the blister on my tongue, I couldn't do without Tylenol and a little Advil. One night I even took an oxycodone, figuring I'd give my liver a little break from the Tylenol. 

With Melissa and Dr. Marty
My pain is manageable and down to a three or four, but I'm not sleeping that well because it's hard to lie on my right side or turn over. Still, I went for a little run, played tennis, and went to a "Pickle Fest" at Bay Road Tennis. Yoga – my first time in Serenity Yoga's new studio – was good for me but I decided to skip today because every time I ended up on my right side I got an extra shot of pain. All in all, it's a pretty good addition to my fall list.

Melissa had said she knew I got worried when my platelets were low, so she said that everything looked good...and my platelets were a little down but this happens if you have a cold, which I had at the point. Maybe that's one reason why the bruise is so big. She had found Dr. Marty (Francisco) in the hall and brought him in. I said, "What are YOU doing here?" I was half-joking, as a way of saying that since he's the infectious disease specialist maybe something was wrong with me, but he said that he had just come in for a hug. I put in this old photo to show that he has an infectious smile. After the good visit with the good hug,  I went off ECP and conked out.