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.

Sunday, March 26, 2017

Hot time under the blue light

Under the blue light before PDT
While I was waiting for the blue light to become available on Thursday (another dermatology patient was using it for PDT), I talked to Dr. Lin (Jennifer) while she biopsied what she calls "little guys." Three of them.

I asked why she doesn't call them little girls.

No particular reason, though when it comes to little girls I enjoyed seeing the video of her eight-month-old little girl laughing her head off about something.

I popped an oxy because I had them in my purse; Melissa said I should take one before ECP (which I had the day before) so that I won't have to deal with pain if the needle slips. I might not have to do that anymore because the new angio needle is working nicely.

I figured if I was going to get three needles in sensitive areas and have pain afterwards, it was a reasonable thing to do.

Note to anyone who thinks this is strange: Oxycodone is actually preferable for me than Tylenol (bad for liver) and ibuprofen and the rest (bad for kidney).

One biopsy on my right calf – a raised and irritated area that she already said was probably a squamous cell after a sent her a photo. And which will probably need another Mohs.

One on the top of my head.

The other on the knuckle of my thumb. Same as happened before with the spot on my ankle (which turned out to be a big deal needing a graft) I had shown this spot that didn't heal to a couple of people who said it was nothing. Note: A spot that doesn't heal is always something.

After all the trouble I had with my last one, it has finally healed. On time to get another. They're getting to know me well at the Mohs Surgery Center at Faulkner Hospital.

My first question when it was done was how long I would need to sit out of tennis. The one on my calf isn't that big but because I have stitches on my thumb, she said about a week.

Although these are a pain, they are not serious except to my mind.

I found out about someone who died from a melanoma that had appeared on the person's neck.

Suddenly the spot on my scalp was a melanoma too...which in my PTSD-y way I followed quickly to my demise. I reasoned out loud to Katie that since I didn't have melanoma in the morning, I probably didn't have it at night after hearing about the other person. Wise child reminded me that just because someone else gets something, doesn't mean I (or anyone other than the person) will get the same thing. Wise friend who had a melanoma and had it successfully removed reminded me that since I'm watched so carefully, they would catch it early before it spread.

I find out in about the week.

The lovely photo of me (wearing my Bev Bloomberg watch) is under the blue light machine at the Brigham Dermatology Center for the photodynamic therapy (PDT) that burns off a layer of skin. I get this done every year. Dr. Lin did it more on my neck because more "little guys" are trying to come up there than on my face, which she said looks pretty good. (All things considered...my addition.) The 16 minutes doesn't sting as much on the neck as on the face.

I had estimated that the driver should come at 4. When he called to check in, I said it was an estimate. When I realized it would be later due to the waiting line for the blue light machine, I called and said it would likely be another 15 minutes.

"Don't leave without me!" I said, remembering a couple of times when that had happened.
He assured me that he wouldn't.

I turned off the sound on my phone during the procedure. When I went to look at around 4:20, I saw that he had called five times and texted once. I called back and said I was coming. He groused, "You said it would be 15 minutes."

When I got in the car he complained some more.

"I never should have taken this job," he said.

He said he is 60 and too old to have to take the trip at the end of the day because he wouldn't get home to Worcester until 9 and was up at 4:30 and they shoulda put the younger person on the earlier shift.

I started to put on my headphones to listen to All Things Considered, but he kept talking.

The phone rang and he had a conversation (while driving). He said it was his son. Then he apologized and said his life is hard because his wife left him after 30 years because she couldn't handle their son, who has Asperger's. Knowing a little bit about this, I asked a question about the spectrum, and, apparently thinking this was a place, he said his son can't get treatment there or anywhere.

On the first leg of the trip the day before, I had a nice polite driver from Kenya. He told me he wants to start his own transportation company because the others are poorly run.

At first I thought this would be another doozy because when we started driving and I asked him to close his window because it was blowing on my face, he complained.

They had given him a bad car where the heat is not regulated and if he didn't open the window he would overheat. Please open the window, I said. We made a compromise and went on to have some political chitchat.

He said he is a liberal but didn't vote for either presidential candidate because both were corrupt, especially Hillary Clinton, who shared classified information on a personal server and put the country at risk.

Not a good conversation to have before getting your blood pressure taken. I pointed out that it wasn't classified, but I didn't want to get into a debate about the FAKE news and FALSE equivalency that got us into this mess.

He asked if I wanted him to lower the headrest on the passenger seat so I could look out at the view. I said that was OK, I had seen enough of the Mass Pike.

At least I had some material to tell my nurse friends at the Kraft Blood Donor Center at Dana-Farber, where I would be for the next three hours for the light therapy.

Thursday, March 23, 2017

Dermatology doubleheader and alphabet soup

A post from a year ago, A Little More Pain Today, came up on Facebook with a photo of me standing right near where I'm sitting at Diane and David's house in Newton waiting for more pain to be inflicted on my face this afternoon.

The funny thing is, I do not remember what it was. They all blur together.

The theme for this week is alphabet soup, ECP and PDT.

Internal sunburn yesterday, external today.

ECP: Extracorporeal photopheresis, what I refer to as the blood therapy or sometimes the blood thing, for my graft vs. host of the skin. I talked to another relatively new (to me) doctor yesterday, our second meeting. Sometimes they don't know what to make of me. I said I had played tennis that morning and over the weekend ran (or whatever you would call it) a 10-K race.

It is so much better with the angio needle. I was even able to get up and go to the bathroom without worry of it infiltrating. A new nurse (who had come over from Mass General) took care of me. He was a character, telling me it was his first time but he would try to do a good job. I don't remember exactly what I said but I gave it back to him.

"Like returning a slice with a slice," I said.

Today, PDT, or photodynamic therapy, to remove precancerous cells and any tiny cancers from my neck and face: "a treatment that uses a drug, called a photosensitizer or photosensitizing agent, and a particular type of light. When photosensitizers are exposed to a specific wavelength of light, they produce a form of oxygen that kills nearby cells."

This hurts a lot. I don't know why people do this sort of thing cosmetically. You hold a tiny blower in your hand and move it around while you feel like you're getting the worst sunburn ever. I can't remember the exact time. Maybe 16 minutes. Maybe I should imagine that it is wind blowing on a beach.

Oh and I might also get a biopsy on a weird spot on my calf. Just as the one on my ankle has healed nicely.

Then back home around four. Nothing much tomorrow because I will be carless. That squeaking sound turned out to be a call for new rear brakes. Better write up a storm to cover that.

In between, a good dinner with Diane last night and upcoming brunch this morning with Rook, who is going to be kind enough to drop me at the dermatologist's office in Brookline.

The procedures will not be fun but it's always nice to see my primary dermatologist, Jennifer Lin, who will weigh in on how she thinks the ECP is going. She's the one who used to talk to me about dating. While freezing spots off my skin. Now she is happily married and a new mother. I assume she will ask about me. I'll have to think about which stories to tell her this time. Or not.

Tuesday, March 14, 2017

Stretching and slogging before Saint Patrick's Race

Doing a plantar fasciitis stretch at Kraft Family Blood Donor Center
Mark Zuckerberg was kind enough to send me a memory from this time of year in 2012 when I wrote that my training for the Saint Patrick's Race was going well – I had run six miles with no problem – but I was worried about the twinges of plantar fasciitis.

Well something is the same: The worry about plantar fasciitis. I think if you counted the number of times over the course of this blog that I mentioned concern about the dreaded heel pain, it might equal or exceed the number of times I expressed worry about leukemia.

At ECP last Wednesday, a doctor and a couple of nurses were all sharing their experiences with and cures for plantar fasciitis. One of the nurses demonstrated how her doctor told her to stretch, and when I got out of the bed I tried it for myself.

A new-to-me resident is overseeing me because I went to a different time slot, 4 p.m. instead of 3. My nurse, Esther, told the doctor that she never saw anyone with graft-vs-host as active as I am. I told her that I still had ripples in my skin and the feeling of a band around my stomach, but the procedure has softened my skin, lessened the swelling in my hands, and important or not depending on your point of view, helped my tennis game.

I'm still planning on doing the race, but the weather has not been conducive to running, and I can't say as I could five years ago that I have run six miles. I did five, so slowly I'm not even sure you could call it running.

Saturday I went to spinning, and on Sunday I ran three miles. I would have gone today but I didn't because of the snowstorm, during which my only activity was going out into the driveway with Maddie. A huge black Lab, about as big as our dog Winnie, bounded into the driveway while her owner shouted from across the street. Maddie seemed to be intimidated because she lay down in a totally submissive position.

I'm not sure when the roads will be cleared enough to get in a good run. I hope I can do it at least once. I would like to not be the very last person to finish. As previously stated, I have gotten incredibly slow.

The other night I dreamt that I was on a dance floor, shimmying up and down. Joe was off to the side watching, and I wanted to show him how I could go all the way down and back up without falling. Up and down. Down and up. It was easy! (When Joe was living here he never wanted me to crouch down on the floor to kiss him goodnight if he was sitting on the floor in front of the TV: He thought I wouldn't be able to get up.)

Interestingly at a tennis clinic the next day, George said I was doing my best forehand slices by bending my knees and leaning over closer to the ground than during a regular swing. So in my dream I was sort of modeling the movement.

Tuesday, March 7, 2017

From cancer nightmares to flowers and writing

Inside the Smith College bulb show
Over the past few weeks I have gone to more than my usual number of Survivor Journeys blood cancer support group meetings in Enfield and Agawam. It was because I wrote a profile for Dana-Farber on the physician who started the groups. Like me, Jay Burton had AML and is a Dana-Farber patient. (I started to write "was" a patient, but changed to the present tense because once a patient, always a patient.)

One discussion topic lodged in my subconscious and came out as a bad dream. Some attendees who had had Non-Hodgkin Lymphoma were talking about the stages at which they were diagnosed and the tumors they had. AML is a different disease that is not staged and that does not come with tumors, but tell that to the voice in my subconscious.

I dreamt that someone looked at the lipoma that you can see through my yoga pants and said that it looked dangerous and should be removed. I said that it had been tested and wasn't harmful. But the person looking at it said it had grown too large and I should really have it rechecked because it might be cancer after all. Blech. Well in reality I'm going for a checkup tomorrow before the light treatment so I might mention my dream.

On Sunday I met Joe in West Hartford, approximately half-way between us. We had lunch/brunch at Effie's Place, a family restaurant that was as good as it looked on the internet. He is not crazy about the idea of me running the Saint Patrick's Race.

"Are you going to make the doctor's appointment before or after the race?" he asked.

As we used to say as kids, "So funny I forgot to laugh."

I don't buy a lot of new equipment, but I decided I should get a new pair of running shoes. (Brooks Cascadia, really a trail-running shoe but a good fit for my orthotics.)

It was that super cold day but when I got home in the late afternoon I got it in my head that I would try them out by running up Cold Hill. I wasn't that cold so I kept going and got committed to finishing a loop of a little less than four miles. By that time it was getting dark and I felt the cold.

With Literacy Project students Chris and Alyea
The next day, and into today, I didn't feel so great. Not too bad but not great...that feeling that you're coming down with something. So I took today off. My exercise consisted of going from The Literacy Project to the Smith College Bulb Show with our class. I had a memory that involved two of my children wanting to be in a photo with my parents and the other child not wanting to. We took a solo photo of the recalcitrant child, and later my mother did her own version of photoshopping: cutting out the photo of the solo child and putting it next to the group.

I missed my mother.

She would have appreciated the fragrances and the colors and the arrangements.

I told Zoe (the teacher) that I like to think she is around.

When we got back, everyone wrote impressions of the day.

I was helping one man whose mind goes faster than his writing. He jotted down some descriptive words not connected by verbs. He told me he gets confused.

"Stop and tell me what you're trying to say, like you're telling your wife," I said. "Keep your sentences short."

And so that's what he did. He seemed happy about it.

A little. Newspaper training. Goes a long. Way.