Tuesday, April 18, 2017

Threatened, cut, zapped and stitched

Dinner
As I wrote in my Facebook rant on the way to get my Mohs surgery yesterday, the driver was one of the worst, starting with arriving half an hour late and then ignoring my directions to go the fastest way to the Pike, saying,"You're not my mother and I never listened to my mother," leading to "Don't fuck with me or I'll fucking drop you on the road," when I asked him to stop talking on the phone as he was yelling at his dispatcher that it was her fault for over scheduling which was the reason he was late.

It might seem odd to write what is happening live on Facebook but it calms me down, keeps a record, and makes me feel like I'm talking to friends, which I am (thank you very much) because I feel supported when I see the comments.

I totally lost it and put my head down on the seat and was crying so much when talking to Katie that I couldn't get the words out. Popping the Ativan that I meant to save for the surgery, plus talking to her, calmed me down. I was able to joke that the big driver in chains probably wouldn't kill me because it didn't look good.

I need to file a complaint with MART, the MassHealth transportation service, but they keep you on hold so long that I need to do it on my landline when I get home.

My expectations for the Mohs were worse than what actually happened.

I don't think they teach you this anywhere – expect the worst and then you'll be pleasantly surprised if it isn't so bad – but that is what happened.

I had worried that the squamous cell on my calf was so large that they would need to take a graft from my side like they did for the one on my ankle recently. (It was larger than a nickel but smaller than a quarter.) But it wasn't necessary.

I envisioned having to get a lot of hair cut for the one on my scalp, but they only snipped a little.

They give local anesthesia with needles into the area and cut away.

They send the sample off to see if the margins are clear, and if not, they repeat the process for multiple passes if necessary.

The margins were clear on both so I was done with that.

Little scaly spots on my skin, which I was afraid would need to be biopsied, got zapped. Base of thumb, neck, and forehead. Little blisters today.

Margaret picked me up and took me to Needham.

Nick said the bandage looked like a yarmulka.

I reminded him that the last time I was there, he said the bandage across my forehead made me look like a Revolutionary War casualty.

This is all my kind of humor and made me laugh.

He prepared a nice dinner and then we talked for a while and went to bed early for me (9-ish.) I said I should stay there more because I'm away from the distractions at home that invite me to putter around to all hours. At bedtime, the pain on the top of my head and on my calf warranted an oxycodone .

This is problematic because opiates disrupt normal sleep patterns, causing you to feel like you are never totally asleep and to even feel like you're hallucinating. Still, this half-sleep is better than lying awake in pain.

I went to sleep but woke up around 2 a.m. and went down to the kitchen and wrote an email.

Then it was back to bed and up again around 4. I listened to part of Thich Nhat Hahn's Deep Blissful Meditation, drifted back to sleep, woke up at a normal hour and asked for strong coffee.

After a while, I took The Ride to Dana-Farber for an uneventful ECP (from 1 to 4) and a normal ride home with a driver who was no problem except for a stream of consciousness about why he is such a good driver.

When the nurse called earlier rom the Mohs office to check on me, I asked if she thought it was OK for me to go to a reading. She said she didn't see why not as long as I wasn't standing too long or running around.

So in a quick turnaround, Mimi picked me up at 6:45, about 20 minutes after I got home. We went to the Florence Civic Center to hear our former colleague and gifted writer, Fred Contrada, read from his collection, The Columns of Fred Contrada. Fred was recently diagnosed with Parkinson's. The room was full. You could feel the admiration and support.

I had only had a snack or two for dinner. Herrell's beckoned; it was on the way home after all. I thought I would get my usual two scoops of something boring until the woman in front of me pointed out the brownie bowl. That looked good so I took it, figuring I would get vanilla to fill it.

It turns out it came with ice cream, hot fudge, whipped cream and a topping. I choose walnuts.

I sat down with Mimi to eat what I guess you would call dinner.

On the way home the stitches in my scalp started acting up again, so I knew I would need another oxycodone. I took that and as of this writing am wondering how the night will play out.

Tomorrow when I have the time to stay on hold for who knows how long, I will file that complaint with MART.

Friday, April 14, 2017

The tears weren't (only) about the chairs

Seder table from each end (Mom wouldn't
 like the beer bottle).
When my father had a brain tumor that caused his eyesight to fade to the point that he couldn't read his beloved books, he would still say, "I can't complain."

And when my mother was bedridden in the last months of life due to the havoc lung cancer was wreaking on her body, she still had her sense of humor, raising her thin arm and saying, "It looks like a baseball bat."

They seem to have bequeathed me this quality: People say  they have never heard me complain about my health. I don't mean to suggest that I'm noble. I just never felt it was helpful.

But it has to come out somewhere.

For example, my feet: plantar fasciitis and a later issue, pain in my big toe. On a trip to the Grand Canyon many years ago, when heel pain caused me to turn back early on the walk down, I said that I was severely distressed about being held back by this stupid thing.

A friend said I complained about that more than I did about cancer.

Which brings me to my point from the seder we had one day early, almost a week ago already.

We figured that God would understand if we had it early due to people working and not living in the area. It was great to be together with family and extended family: twelve adults and two toddlers.

My sister does a beautiful job leading from an abbreviated family Haggadah. I read my father's favorite part, Psalm 114. A professor at heart, he loved pointing out the similies, metaphors, and other forms of speech. (The sea looked and fled/the Jordan turned back/for the mountains leaped like rams/the hills like lambs.)

Nell and Spencer
The reading is always emotional for me, and, depending on what is going on, after that fourth transplant, certain emotional situations are heightened.

A team table-setting effort (because Katie couldn't come) produced a good result. While I cooked a chicken, Joe did the rest; Diane and David brought brisket and appetizers, and everyone else pitched in.

Thinking about our parents and looking at the photo of my smiling mother arranging flowers probably laid the groundwork for the meltdown that happened when everyone had gone.

They did a good job of cleaning up most of it. Joe and Carly, who had come early to help, stayed a little longer. Everyone had a reason for leaving when they did. I knew this rationally, but a lot of things piled up to lead me to focus on something that now sounds silly: the four heavy chairs that needed to go back to the attic and five that needed to go back to the kitchen from the dining room. Obviously the chairs going to the kitchen weren't a problem, but lugging the others up the narrow attic stairway didn't seem like the right job for me.

(Apt analysis or psychobabble: I get an immense amount of help and love and support that I truly appreciate, but I ultimately I have to do the heavy lifting alone.)

I started to wash the delicate crystal wine glasses. One broke in the sink. I thought I better lie down for a few minutes and BREATHE. But I popped back up and looked around at the wine glasses and the dishes and the sink and stove that needed cleaning...and at the chairs.

Then it was pity party time complete with tears. I sent a text to a group of four about the chairs, then cried on and off through the next day in conversations with the ones to whom I had sent it, feeling sorry thatI had brought it up in at all and realizing that if I had felt compelled to say something, I shouldn't have done it via text.

It wasn't just about the furniture or the phone.

It was about missing my parents on this special holiday, about visions of my mother setting the table "just so," about being alone for the shopping and the end of the cleanup, about the three new squamous cell cancers (three extra after the ones I previously wrote about), about the one on my calf that stings all the time while I wait for my Mohs appointment Monday, and the one on the top of my head that will probably lead to shaving, about the GVHD of the skin causing my abdomen to feel like it has a tire around it, about my previously nice and now frequently swollen hands, about all the doctors' appointments wearing me down and running back and forth to Boston driven by drivers who may or may not be sane.

Between tennis the next day and the Chipkin Family seder the next night, I began to calm down. And in another day I had pulled myself together.

Mostly I am sanguine. In fact, when people ask how cancer has changed me, I am likely to say it has made me funnier.

Sometimes you have to laugh.

But sometimes you have to cry.

Wednesday, April 5, 2017

It's dangerous out there (on the tennis court)

I especially enjoy the round robins at The Enfield Tennis Club on Wednesdays like today before the light therapy (or ECP) at Dana-Farber. I had actually planned on going to pilates, knowing that it's good to work into your routine in general and hoping that specifically it might help my abdomen to protrude less (a result of the Graft. vs. Host of Skin.)

But when I got a call from Rebecca at the club saying they needed an eighth, I jumped at the chance.

Tennis is always more fun, but it didn't start out great. The player across from me hit me hard on my thigh. It was a stinger, probably because my skin is so sensitive. A few minutes later, she hit me on the calf. I bent over to rub it as tears welled up in my eyes.

At our level, we don't do these things on purpose, despite our old coach Rich Bray standing on the other side and saying, "Hit me, hit me," to improve our net game. But it is a shocker, especially twice in a row at the same speed. I said the understatement of the year – I have a problem with my skin – or something like that, maybe to explain my apparent lack of toughness.

The other three said maybe I should go sit out and call Marie from the front desk. But no way was I doing that, although my better instincts said I should ice.

Instead I said to myself, "There's no crying in tennis," and went back to my spot.

My serve, which had been pretty bad earlier, suddenly got better. I thanked the other player for knocking the bad serve out of me.

During the change in teams (we do three combinations), another player and I stood at the net talking about the times we have been hit. I mentioned an incident from the week before, saying a different player whaled the ball at me on purpose.

Last week I wasn't technically supposed to play because I still had a day to go before my friend nurse Jo took the stitch out of the biopsy on my right thumb. But it was so small that I put a bandaid on it and figured it would be OK.

Three of us were warming up before the fourth arrived. The woman on the other side kept hitting it only to the person next to me. I jumped up and down and said, hit it to me, hit it to me. I was just fooling around, but she backed up, took a big swing, and hit it straight at me.

After a few minutes she apologized and said she doesn't like it when she acts like that. I accepted the apology, but the after effects ruined that set. Most of all it affected my serve. I double faulted more times than I ever have done, and although I was just trying to forget it and get over it, I saw how your emotions can affect your game.

In the other rounds, my mood and playing picked up. People complicated me on my net game, an inheritance from my father, the result of George's lessons, and my height and long arms.

Afterwards she apologized again and we chatted a little about, of all things, our respective dental problems. I wanted to hang around a little so the air could naturally clear because I wasn't upset anymore and didn't want her to be either. She joked that if her ball had made contact and I had lost another tooth (making it 13 gone) it would be something to write about on my blog.

So that's what I did.

 I can think of quite a few when tempers flared. I don't know how men on teams react to stress. Maybe better, maybe worse.

Many of us are our own worst enemy, which in turn makes us worse. It's then that we need to focus on the ball and maybe even reread (or read for the first time) The Inner Game of Tennis.

Sometimes, especially in league play, we forget that we're only playing for the brownies at the end. But the competitiveness is also what keeps us coming back.