Sunday, November 18, 2018

When it comes to tennis, perspective would help

How I sometimes feel after a missed shot
I posed this question to the pro at The Ludlow Tennis Club today: "Should I stop (USTA) league play and only play for fun?"

He said that all tennis is fun, and he wondered why I was differentiating.

I said I used to not mind the pressure of league play but in recent years I have felt it more, and so that has made it less fun.

Well, to be honest, I like it fine when I win. When I play for "fun" and the score isn't entered into a computer, as long as I play well, I don't care too much about winning or losing.

But if I lose in a league match, I get all verklempt.

The good news is that it never lasts long and is gone after the next time I play.

I don't know why I'm especially into Yiddish today. When writing something else, I wanted to make sure I had the right spelling and definition for tsuris – grief or strife – and I ended up finding something useful in Moment Magazine.

It was this comment, well, actually a quote, in response to the essay about tsuris, which can also mean worries, stress, or hassle:

Ibergekumene tsores iz gut tsu dertseylin.
(Troubles overcome make good stories to tell).
-Yiddish Proverb that appears at the beginning of Primo Levi’s book, “The Periodic Table”

Seen this way, troubles can be a gold mine. I've certainly had my share.

The reason I was kvetching to Edsel (the pro) was that a tiebreaker in a doubles match did not end up the way I wanted it to go.

Also my rating went down this year.

Edsel said, "Who cares about your rating? What does the score matter? Did you have fun while you were playing?"

He told me that he remembered when I had just come back and was so weak that I could barely pick up a racquet.

I said that it was nine years ago and I sometimes lose perspective. He said, not in so many words, that maybe I should get it back.

I couldn't remember if I had shown him my story in about how tennis helped me recover from leukemia. He said he hadn't seen it. We went over to the computer and looked it up. Through Edsel's reminder and glancing at my story, I began to feel a little more of that perspective thing.

Players from different teams were sitting around eating and talking. The home team from our group had brought fruit and yummy baked snacks. There were some fabulous fudge brownies. Also strawberries dipped in chocolate.

After a while I walked across the room to the table where two other teams were sitting. I said I had had a lot of carbs and wondered if I could have some of their protein. I know most of them so it came out as less strange than it sounds. They graciously shared: cheese and crackers, peanuts, veggie/chicken white pizza, and, for my second dessert, chocolate chip cookies and corn muffins. We talked about a lot of things. I kept saying goodbye and then sitting down. It was too pleasant to leave.

I told someone I couldn't stop eating. She said I should eat all I wanted; she remembered when I barely had any appetite at all, and this was much better.

I told Edsel I would miss this if I stopped playing league tennis.

He said that if I wanted, I could just come and eat the food and watch other people play.

Knowing me, I'd get shpilkes if I did that.

Friday, November 16, 2018

A little bit of PTSD can go a long way

Illustration from
I'm trying not to duplicate what I write in the blog and what I write for the skin cancer and blood cancer platforms of Health Union. So, I probably didn't share on the blog how I had cryosurgery that made me cry.  If you go to the link you can read all about it. Or not.

I got the biggest blisters on my hands and on the top of my nose. Good thing it wasn't date night. I knew I shouldn't have done it but I popped a few of them. They were ballooning and just asking for it. I left one alone. Guess what? The one that I left alone healed faster. I also wrote one about the problem of skin picking.

The other night I had a nightmare that conjoined some of my trauma and anxiety. Also I realized that something from the news had seeped in.

I dreamt that I was in a bed in a hospital room where relatives were sitting. My doctor said he was going to stick a needle in me and do a major procedure. I would go under. If I came out on the other side, I would be healed. But I might not make it through the night. He said someone should stay with me all night. But then my bed was in the hall and I didn't know where people would sit. Analysis: Stem cell transplant, coma, touch-and-go night when they really weren't sure I would make it. And the thing about the bed in the hall: those melodramatic ads against Question 1, the nurse-patient limits, which featured patients perishing in the hall because nurses had been pulled off to meet requirements in other places. (It failed.)

In another part of the night, I dreamt I forgot my tennis racquet and had to play with something that had a little handle and a brush at the end. I tried to do it but then realized I couldn't possibly hold onto it. The scene cut to a match. My opponent was bouncing around. She looked pretty good. I said I realized I couldn't play with the racquet. Then I realized mine was in the car. She said to go ahead and get it. I said but then I would be late to the match and she said it was OK, we could start and one-all, and she wasn't good for more than one set anyway.

I ran out to get my racquet but then realized my keys were locked in a room. Then I couldn't remember exactly where the room was. Oy.

I was still in transit when I woke up. I guess the good news was that my opponent was being nice about it.

I also wrote a piece about PTSD but it hasn't been published yet. When I did a little research, I found a story that stated many cancer survivors suffer from PTSD.

The National Cancer Institute calls it Post Traumatic Stress, or PTS. Apparently it is not as severe but it can rear its head at any time. Such as in nightmares that go back to the time of crisis.

After that nightmare I woke up feeling blue. I don't know why the saying is "feeling blue." Blue is one of my favorite colors. It should be "feeling gray."

In any case there was nothing much to do about it except to go on with my day.

Wednesday, November 7, 2018

Along the Charles River, belated 'birthday bash'

View from the path along the Charles
A gazillion years ago when my friends from the newspaper and I were locked out of the Forest Park clay courts before our early morning tennis game, we would shimmy through the gap in the fence. Sometimes we had eight or even more, and one at a time we'd get in.

I thought of this Sunday after Katryn and I lay down on the cement and shimmied, belly down, under the gap in the fence on a walkway along the Cambridge side of the Charles River so we could cross the bridge to get to the Boston side, where we had started. We couldn't see an opening and didn't see any other recourse other than wandering around looking.

Just like when our newspaper group had gotten through to the courts, it was a triumphant feeling. Of course when we had gotten onto the tennis court, I was standing up, while the other day I was belly down when I got through. Katryn cheered me on. I rolled over and got onto my hands and knees. She offered me a hand. But I had to get up myself. I did it the usual clunky way. Kind of like how I take the third option when the yoga instructor says to get from the back to the front of the mat by hopping, jumping or getting there any way that you can.

We had walked almost four miles by the end of our joint birthday celebration. We started and ended on Charles Street. My mother always loved it there. It is at the base of Beacon Hill and very chi-chi. We went to a gallery to look at a painting and came out with postcards, which were free and the only thing we could afford. We ended up at a Starbucks (there are two), and I got a red eye for the ride home.

Years ago, we started getting together on our actual birthdays, the last week of August, but it has gotten pushed back from year to year. When we can't do it in August, we say we're going to do it before the snow falls. I think this was the latest we ever did it. I drove back in the dark but it was worth it to see my college friend. Actually the better way to say it is "friend from college" just like I would say "friend from tennis" instead of "tennis friend" when I'm talking about certain people because they become more than a person defined by a place or thing.

Katryn lives in the Portland, Maine, area. So Boston is almost a half-way point. I think this is the third year we met at Panificio Bistro on Charles Street for lunch and then walked on the path around the Charles. It's where I used to run when I lived in Brookline. If you don't mind a little exhaust, it's a beautiful place for a run.

We didn't take a photo or use a hashtag but yes, we were still there. I found a photo from Aug. 21, 2016, and we look pretty much the same. That time we got it on our birthday week.

We've done some fun and interesting things. Sometimes we're inside, sometimes out. We've gone to the beach and to museums.

One year we visited the Isabella Stewart Gardner Museum, where we had lunch and walked around. It is the site of the largest art theft in the world.  Empty frames show mark the spots where the stolen paintings would have been. If you follow the link to the museum website, you can take a virtual tour of the stolen artwork. If you have information leading to the thieves, you can get a $10 million reward.

For our 60th birthday, we went on a tall ship sailing cruise in Boston Harbor, where we got to help hoist the sails. The year we went to the Peabody Essex Museum in Salem on Halloween weekend probably wasn't such a good idea. We somehow forgot about Salem and witches. The place was so mobbed, we thought we might never get out of there.

Many years ago the whole family came here. Somewhere I have one of those now-embarrassing photos of one of her children in a bathtub with one of mine. Naturally I wouldn't publish it.

Way before families, we biked around Nova Scotia. We had a wonderful time except for getting sick on the ferry ride back. The only ones who weren't sick, if I remember correctly, were two little old ladies who had taken their dramamine. Ha, well, they seemed old but maybe they were the same age as we are now.

Basically it doesn't matter where we are, because we have such good time laughing and talking.

Wednesday, October 31, 2018

In a funk after flu shot, and trying to run through it

On Monday I went to CVS and got a flu shot. I figured that by the time I made a doctors' appointment, I might get the flu.

Since I've been poked and prodded countless times, you'd think that I'd be tough. I didn't get hysterical or anything. But I did get a little whiny. I said it hurt.

"Well,  it should, I just put a hole in your arm," the nurse said.

I asked the usual question – would I get sick – and she said that since it is a dead virus, I would not.

Since I like to do things differently, yesterday I felt sick. And my arm hurt. Waaaaaa.

I had promised Maddie a walk. We went to the bank. She lay down on the floor and made herself comfortable. The teller came around and gave her a dog biscuit. My ATM card was not working, so I went to her cubicle and sat down while she made me a new one. Maddie came over and sat with me. I looked at the photo of the teller's dog. It was a Shih Tzu.

I told her about the time when I brought my dog Simon to live in Greenfield at my Aunt Marge's house while I looked for a place to stay. I had gotten my first real newspaper job, at the Transcript-Telegram in nearby Holyoke, before I graduated from Boston University's journalism master's program. (Thank you Jon Klarfeld.)

Simon was possessive about his food. The little dog came over to investigate. Simon snapped. And, unintentionally but still not a pretty picture, broke the little dog's jaw. I felt terrible, of course, but luckily the dog was OK. It's a good thing that everyone loved Simon. I got to stay until I got an apartment in Florence.

Ah, memories.

In any case, yesterday, still not feeling great, I walked Maddie around the lake. When I came back, I looked out the door and thought about how in the way-back-past, if I felt slightly under the weather I could get rid of it by going out for a run.

I wanted to be able to do that. My legs felt heavy, and a stood for a while, looking out the window. I put my leg up on the counter and stretched. (Actually, I my hand ASSISTED my leg in getting up onto the counter. ) It could have gone either way. But I went out for the so-called run, back to the lake, which is about a mile around.

My run was about the same speed as my walk. I bumped into a friend and walked a little way with her. I said that if I wanted to get back to the point where a run was a cure-all, I would have to push through the first part, which was always the hard part. I've done it a few times but not consistently enough. Tennis is easier.

Thinking about this, I wondered, enough for what?

Not enough to get the runner's high, but enough to be a lot more than back after my last transplant when I couldn't even turn myself over or get out of bed.

A little perspective helps.

In any case, my phone said that by the end of the day, between getting to the bank, to and from the lake, and around it twice, I had done, or rather trudged, five miles.

I almost called it quits but I went to Northampton to Megan's yin yoga. It is a hassle to get there and not the best time for me – 6 p.m. – but it always calms me down.

Saturday, October 27, 2018

That infiltrated feeling isn't a good one


in-fil-treyt, in-fil-treyt

verb (used with object), in·fil·trat·ed, in·fil·trat·ing.
to filter into or through; permeate.
to cause to pass in by filtering.
to move into (an organization, country, territory, or the like) surreptitiously and gradually, especially with hostile intent.

In nursing, it has a specific meaning.

Infiltration occurs when I.V. fluid or medications leak into the surrounding tissue. Infiltration can be caused by improper placement or dislodgment of the catheter. Patient movement can cause the catheter to slip out or through the blood vessel lumen.

I present these definitions because on Wednesday at ECP, the light therapy on my blood, the needle in my right hand infiltrated. This has happened before. It is not the end of the world. But when it happens, it is painful. I usually know it the minute the needle goes in. It doesn't feel right.

Surveying the damage
Nancy, my nurse, put the large needle in my left arm, for the draw. (Drawing out my blood so that the white blood cells can be separated and treated with UVA light.) Rosalie, a nurse who had a different patient, came over to help with the return needle, the smaller one. She patted my arm and my hand vigorously to get a good vein. Actually it felt kind of like slapping. She put the needle in and went back to her patient.

I told my nurse that it hurt. She took one look and said it was infiltrated. She pulled it out. There was some extra blood. She had to bandage it up before she put the needle in a different spot. My right arm was unhappy.

Meanwhile, my left arm wasn't doing so great either. My hand had a bad case of pins and needles. You can't move your arm, so you can't shake it out. The needle in the crook of my created a dull ache.

For a while I was taking a little oxycodone before, because I had had a few bad instances of severe pain when the needle felt like it hit a nerve. I haven't even been bringing it for a while. But with both arms hurting, I said maybe I would in the future. (Tylenol doesn't do it. I can get oxycodone at ECP, but it's a major production, and Melissa had said to bring my own.)

A nice resident, new on the rotation, came over to talk. I gave him a brief history of my two-plus years at ECP, going back to when I asked my doctor why my abdomen felt like it had a bowling ball in it, and why there were ripples in my thighs, and he said it was graft vs. host disease of the skin.

He thanked me for the info. I should get a teaching fee! Then I fell asleep. When I woke up, it was almost time to leave. I wasn't sure how I slept through being that uncomfortable, but maybe it was a defense mechanism or something.

Wednesday, October 24, 2018

Insensitive email triggers total meltdown

Melissa, me, and Dr. Marty
So this happened.

I had a checkup scheduled for today, with Melissa, at 2 p.m. before the light therapy on my blood. It was a shorter interval than usual – four weeks – but we made it for that because I had several ongoing matters to discuss.

Then I realized I had too much to do work to do this week. I emailed Melissa with a copy to Nicole, the (relatively) new scheduler, and I asked if we could move it back two weeks.

She wrote back,

"I am happy to move your labs and appointment to 11/7. Unfortunately, Melissa will be transitioning to a different department so you will see a different nurse practitioner.

Please let me know what will work for you.

This triggered an automatic meltdown.

If you've read this blog for even a little while, you know how attached I am to my nurse practitioner. She's seen me through ups and downs for more than 10 years.

For International Women's Day, when Healthline asked me to pick a woman to honor in their "day without her" feature by picking a woman it would be hard to live without, I wrote,

“My nurse practitioner, because she knows how much I go through and calms me down when I get nervous, always saying the right thing. She helps me coordinate my many doctors’ appointments, answers emails even on a weekend when she is busy with her husband and two young sons, cares as much about my mental health as my physical health, and most of all has become a true friend.”

Back to the meltdown.

I don't know why this happens, but often when I get very upset I knock something over. It happened the day Joe moved out, when I was crying so much, and not paying attention to the space around me, that I knocked over a glass of Gatorade...right onto my MacBook Air. I had to get the insides replaced. It was a costly mistake.

Yesterday I was sitting at my kitchen table, where you can often find me typing away, looking out onto the patio and the so-called garden, when I read the email.

I started crying. And knocked over a glass of water. It spilled all over the kitchen table, soaking pads and papers. It just missed my computer, though. I mopped it up. I texted Melissa, "Can you call me?" I don't know which she saw first, that, or the page that I sent.

Due to the tears, I could barely answer.

She said, "What's wrong?"

I said quickly, "It's not my health," because what with all my mishaps, that would be the first thing a person would expect.

I told her about the email.

She said she hadn't seen it, she was sorry about the way it happened, and she had wanted to talk to me in person. I said I would go in a little early today so we can talk in person. I mentioned that it hit me especially hard due to what happened with Mary Lou. That was shorthand for the clumsy way Dana-Farber/Brigham and Women's decided that I could no longer see my longtime social worker because she would be in-patient and the other social worker would be outpatient.

First Mary Lou had said she could stick with longterm patients. Then they told her that it wasn't the case. She wasn't even supposed to respond to my emails...a total cut-off of a vital support person. My sister and I talked to the social work department heads. They said, not in these words, to suck it up.

Mary Lou said that if I went over to the sixth floor at the hospital (my old home away from home), she could meet me in a conference room from time to time. We did that for a while. It was good to see her, but it felt like we were sneaking around. At this point she seems to have disappeared. I asked some people if she retired, and they said they didn't know.

Meanwhile the social worker who I was supposed to see, who I didn't want to see because we weren't a good fit, saw me a couple of times and then disappeared. I got a new social worker with no background in oncology. The questions she asked me sounded like she hadn't read my file. I said I didn't want to see her again.

People move around. We always felt the world would end when we lost a tennis coach. But how you take it has a lot to do with the way you learn about it.

I feel guilty griping about the place that saved my life, but hey, we transplant recipients are "babies" with sensitive skin.

Actually I don't think you even need to be super sensitive to be thrown for a loop by an email like the one that I received, about Melissa.

I believe that the two more experienced schedulers before Nicole wouldn't have done that. I think they would have checked in with Melissa and asked how to handle it.

As I wrote in this post for Health Union, how things are said determines how they are received. This sounds like a truism but still it doesn't always work out that people present sensitive topics in the best way.

I sometimes regret it when I dash out an email, but I don't regret that I wrote back, "Not ok to find this out by email."

To be continued, after my visit today.

Sunday, October 21, 2018

Three cheers for fake teeth and longterm friendship

Hiding behind chocolate mold
News flash: For the first time in as long as I can remember, I am able to chew on both sides of my mouth.

It was a big day when Dr. Badri Debian, of Holyoke Dental Associates, gave me my newest bridge a couple of weeks ago. For a while he had said I didn't need it because I still had enough teeth on my upper right to be able to chew on that side. It didn't seem so to me. I chewed so much on my left side that I wore down the bottom teeth and needed a bridge. But when I lost my thirteenth tooth last month on my right upper, he decided it was time.

I never knew that I would be spending so much time thinking about teeth, or lack thereof.

Friends asked how the bridge was glued in. I have a tooth in front, but not in back. For some reason this sounded funny, and we started cracking up.

So it turns out that I don't have a traditional bridge, which would be a fake tooth connected to two existing teeth.

A bridge supported by a tooth on one side is a Cantilever bridge, and that is what I have.

Here is another word that is new to me: a pontic. That is the technical term, or euphemism, for a fake tooth.  

I keep forgetting that I can use my right side now, so I still favor my left. It's not perfect, because I'm missing a bottom molar, so I don't have a great connection. 

Dr. Debian has my back. He gives me a good discount and is in my opinion, a mensch. But since I don't have dental insurance because dental insurance stinks for people in my situation, it might be good for the bite in my mouth but it takes a bite out of my bank account.
Anne with cacao pod

I'm behind on other news. My Vassar classmate Anne Outwater and I had an interesting visit to Taza Chocolate Factory, in Somerville. It was a busy couple of days. 

I crammed a lot in on that Wednesday, but when a friend (Anne) who lives in Tanzania says she is going to be in Boston and would like to visit a chocolate factory run by a fellow Vassar graduate, and it is the same day that you need to be at Dana-Farber at 4, and you have already promised to sub in a tennis group at 9 in the morning, what are you going to do except try to do it all?

Somehow it worked out. Getting there was crazy, though. As I neared my destination, I was thwarted by blocked-off streets. 

I later learned that it was because of the large public transit expansion affecting Union Square in Somerville. An employee from the chocolate factory talked me in. I almost gave up. But I got there on time for a little introduction and tour that included tasting a lot of stone ground dark chocolate of various textures and tastes. We learned that the higher the cacao levels, the more health benefits there are. Unfortunately I like milk chocolate better. But I'm learning to like dark chocolate.

I took a selfie with Anne but erased it because I had a big red mark on my nose, resulting from a zapping, or cryosurgery, on a precancerous spot. I conveniently displayed a mold by holding it over my nose. 

Afterwards we got in my car and went to Dana-Farber so she could sit with me while I got my blood treated. It was the only other time we would have together. Quite the difference from when we rode bikes around Prince Edward Island together and she placed a blue shield around us so that the dogs would not get us. 

Anne does not drive in Tanzania. I think I should have told her to close her eyes on the drive through Boston traffic. 

Anne has a Ph.D. in nursing and has an impressive job and title: Head of Department of Community Health Nursing at Muhimbili University of Health and Allied Sciences in Dar es Salaam, Tanzania. Before that, she was a medical officer in the peace corps. The nurses were impressed with her! She was also impressed by the nurses and interested in what they were doing. She got a quick lesson in ECP, or extracorporeal photopheresis for graft vs. host of the skin.

My compadres Larry and Lisa were also there. The three of us always come at 4 p.m. every other Wednesday. I don't know the name of the other man who is always there. Sometimes he is behind a screen. Due to traffic, we got there last, but I finished before Larry and Lisa, because they each use just one arm. I told Anne how it came about that I use two arms, one for drawing and the other for simultaneously returning. It was because one day Mark, my nurse for the day, came up and asked if I wanted to use two arms, and before I had a chance to balk, he put the second needle in.

Depending on where the nurse places the needle, I can sometimes use my right arm. But it was at an awkward place, so I couldn't. It was good that Anne was there to talk to. She was impressed with the nurses. When the procedure was finished, Mark walked Anne out to show her where to get the T. 

It was also a good thing I was going to Margaret and Nick's, because I was too tired to drive home.

My construction obstacles persisted, though. I have been to their house many times but got confused when getting off at the exit that I usually take off Route 128/95.  It looked different. I ended up where I didn't want to be and then had to circle around.

Margaret said the changes were due to something called the Add a Lane project. I was glad to hear I wasn't making it up and there was a reason for my confusion.

I had hoped that one of the doctors at ECP could remove the stitches from the Mohs surgery on a squamous cell cancer on my right temple. A doctor came over prepared to do it, but when he saw that it was running stitches, he said he couldn't; you need finer scissors and a better light. He asked Melissa to call ahead to the Faulkner Hospital Mohs Surgery Center to see if they could take me the next morning. He called it the Pregame. He said, in the meantime, to just go in the morning and assume they would see me. She texted me to ask if I could get there at 10:45. I was already on my way. Yay team!

The next day I drove home in the pouring rain. I went straight to a hair appointment that I had in Northampton. I don't have any construction-related explanations for getting there at the wrong time, 3 instead of 2. Getting out of my car, I couldn't open my umbrella. Getting soaked, I fumbled for my credit card to use in the meter. I dropped the card in the rain. I couldn't find it anywhere, so I thought maybe it was in my car. But I canceled the card anyway. This is a pain because a lot of things are attached to it.

The next day, I got a call from a man who said he found my card. He said he looked me up and found me via my website. He said he wanted me to know that he was a veteran and he wouldn't have tried to use the card. I thanked him profusely and said I had already canceled it. But it was nice to know that such a person existed.

Meanwhile, someone had gotten a hold of the number for my LL Bean card and put more than $2,000 in fake charges on it. The credit card company didn't catch it. I believe they should have. After I called, they removed all but one small charge. I told them it was also a fake charge. They said no problem, they would not charge me interest while they looked into it. They charged me interest and a late fee. I called and said to take it off. They said they would take it off and look into why there was a stray $58 charge on it...with interest. I said OK.

When I tried to use the card, it was rejected. I called to try to find out why. Of course as most people know, it is bad for your health to try to get through to a real person at a credit card company. You cannot just press zero. I yelled into the phone, agent, agent, agent. When I finally got a person, they said it was locked because I hadn't paid them the $58 even though it was in dispute.

They don't care, but I said that as soon it is resolved and I use my coupons, I'm going to cancel the card.

Sorry for the rant.