Whining, dining, and giving thanks

In the summer, my Labrador retriever, Maddie, came up to my room to sleep in the air conditioning, but now she likes to sleep on the couch. In the morning she comes upstairs to wake me up and lies down on her hand-me-down LL Bean bed. She does the perfect downward dog. I gave her one of the quilts that co-workers had signed for me. It was after my relapse and was a smaller version of the large one that I took with me everywhere for a long time. She likes to rest her head on it.

I usually get down on the floor for a stretch and a hug and some mutually beneficial endorphins. She had a long puppyhood. I used to complain about her, but now I can't imagine life without her. She is almost twelve, and I can get all verklempt about her age, but I try to change the channel. On Thanksgiving, I told her I was thankful for her.

Having Joe and Katie home filled the house with warmth. It seems like only yesterday that they were fighting over the school bus. Specifically, over whether Katie could get downstairs fast enough for him to give her a ride, with Joe saying he was going to leave without her and me chiming in that she better hurry. (Actually, yelling up the stairs.) This probably did not help to de-escalate. If she missed the ride and the bus, I would have to drive her and wouldn't have enough time to run before work.

Now when I talk about running, I refer to my "so-called" run, because I'm so slow. Due to my neuropathy, I feel like I have lead boots on my feet. So when I went out for a Thanksgiving day jog of a little under three miles, I was glad that it was so cold – 15 degrees – that I couldn't feel my feet.

I tried some CBD oil but it hasn't worked well. A woman at the Brattleboro Farmers Market sold it to me. I ran into a "CBD Oil Users" group on Facebook, and when I put some photos up, they said it didn't have much CBD in it. Who knew?

 People have offered some good suggestions, such as how to buy samples from various manufacturers so you can see if it works before you buy more. There is another group, "Our Neuropathy Friends," consisting of people who are REALLY suffering and searching for relief.

That said, I'm not in shape, but I'm going to do the Hot Chocolate Run . It's for a good cause and crazy colorful and a lot of fun. 

After my little run on Thursday, I had just enough time to enjoy a breakfast that Joe made and then get ready to go to New Canaan for Thanksgiving. I got a kick out of telling people that I was going to Granny's. She's my daughter-in-law's grandmother, who graciously agreed to host us. 

Nell went around the table asking everyone what they were grateful for.

As soon as a person said they were grateful for her, she was on to the next person.

Maybe it was after my turn, but I think I got in that I was grateful for my family, and for being with extended family. The sun came out and I said I was thankful for that.  I would have said that I'm thankful for my bone marrow donor but it seemed out of place.

I wrote her a Thanksgiving thank you when I got home. 

Without her, I wouldn't be able to kvetch that my feet are killing me and lament that I only ran about three miles. 

As I wrote in my last post, it's good to have some perspective and remember when I couldn't even get out of bed. 

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 espnW.com 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.

A little bit of PTSD can go a long way

Illustration from Skincancer.net

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.

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.

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.

That infiltrated feeling isn't a good one

Infiltrate

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.

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.
Regards,
Nicole

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.