Wednesday, May 24, 2017

Sliced finger gets in way of slicing on court

Today is a tennis day, but I couldn't go because I was being nice to the dog.

Specifically, when cleaning out the fridge for trash day, I decided to slice some chicken off the bone for Maddie.

The knife was in good shape because I had sharpened it for Passover. So it made a nice cut when I missed and sliced right into my index finger on my left hand. I bandaged it and wrapped tape around it but it continued to bleed. I thought briefly of walking down to the fire station – there is just one house between us – but thought better of it and called Fire District 2. I stressed that it wasn't an emergency.

The assistant fire chief, Todd Calkins, arrived in a jiff with an EMT. They went into their "boo-boo kit" (their word) and bandaged it and wrapped it tightly. They said it looked like it might need stitches. They also said I should look into whether my tetanus shot was up-to-date.

Todd recalled the day when I called the fire department in a panic when I came home from work and saw smoke pouring out of the nearly-completed addition. I was pregnant with Katie. I had just picked up Ben and Joe when I saw it. I ran in and got my dog-three-times-removed, our big black Lab, Winnie. I later learned that a carpenter had flicked an ash into a barrel. Apparently in a few minutes, the old house would have burst into flames.

Todd said he had two other houses in a similar state that same night.

They said they would take me to the ER. I said I would figure it out.

The bleeding stopped. It only hurt a little. Thus, I dilly-dallied.

I am still trying to get organized after the informative and productive but overwhelming writers' conference I went to earlier this month (May 5-6), presented by the American Society of Journalists and Authors. It was my first time as a member. I had gone last year as a non-member and found it so beneficial that I decided to apply for membership, got in, and got psyched for the full benefit of two days as opposed to the general public's one day.

Loaded down w/ bags at #ASJA2017NY
I realized that I didn't write a blog post about it. All I did was put a photo on FB. I was too busy BEING THERE NOW. Short version is that it offered the camaraderie that I miss from my newspaper days. I learned a lot from the many sessions, made connections with editors and got cards from editors with whom I didn't have a chance to speak, got story ideas, felt supported, enjoyed the conference-supplied Starbucks coffee, and even had a chance to sneak in a visit with Aunt Marge and (cousin) Jeanne.

Even before I left the conference, I took some time to send follow-up emails to editors. I did more of that when I came home and thought about stories I would like to write or pitch. I guess germinating is all part of working.

But I've been feeling a little like some of us tennis players feel after the Districts, the USTA tournament up a level from the local leagues.

You expend so much anticipatory energy – and so much energy there – that for a while afterwards you need a little break from tennis. Thought bubble: "Don't let me ever look at a tennis ball again! Well, maybe not never ever."

Back to that slightly sliced finger. Somewhere around 3 today, I called my internist’s office to see about the tetanus shot. Turns out I had one two years ago. They don’t do stitches, so the nurse suggested Urgent Care. When I got to the one on Memorial Drive in Chicopee, only a couple of people were before me, while earlier in the day it was busier. So by lingering at home, I had saved myself waiting room time.

A physician’s assistant took off the bandaid. It didn’t look bad enough to need stitches. Instead, she used skin glue. The application process made it hurt more than when I got there.

Since it’s the left hand, hopefully it will be better in the morning and I can play a little tennis. I have a lesson that I don’t want to miss.

Wednesday, May 17, 2017

Outdoor tennis and new plan (re the drivers)

First day of tennis at the Canoe Club.

While most dress down to go outside, I am dressing UP. Not with fancy clothes but with sun protection shirt, legging to my ankles, and, if I can find them, my sun protection gloves.

When I get to Dana-Farber for ECP, aka the light treatment aka the internal sunburn, today, the first thing that Ellen, the PA, will ask, is, "Did you play tennis today?" Maybe I won't see her, though, because since I now go an our later, at 4, she has often already left.

The long-sleeved shirt that I got from Coolibar is supposed to breathe, but it doesn't, so if anyone knows a good sun protection company or a specific shirt that is not so uncomfortable, please let me know.

As I wrote in my recent Healthline story describing my life with chronic symptoms, going back and forth to Boston is forever going to be a part of my life.

On my last visit two weeks ago, I enjoyed the luxury of having a friend take me.

It is not going to happen every time. I was grateful when, in the acute phase, people drove me. And I understand why it's not happening now when it's no longer a matter of life or death. It sucks up just about a whole day. If I could cope with all the medical drama, you would have thought I would have learned to cope with the driving drama. There's still time.

Today I have a double header, and two weeks from now, the same thing.

That will mean a lot of drivers. One today to Dana-Farber through MART (the source of most of the crazy drivers) , another, through The Ride, to Diane and David's, then The Ride again to my dermatology appointment tomorrow, then a different driver back home tomorrow.

The next time I go, the second part of the double header will be a checkup with Dr. Alyea.

I am not going to engage.

I have already packed my headphones and will just put them on and listen to something on my phone if any of them act up.

Stay tuned.

Tuesday, May 16, 2017

Thoughts of both parents around Mother's Day

With two other volunteers in Whately 
I usually walk Maddie into the woods at the end of my driveway to briefly do her business. The other day when she stopped and wouldn't go, I realized it was because I had forgotten to put her collar on.

"Oh, we forgot your collar, let's go back in," I said, and she turned around and obliged.

I usually take it off to "undress" her for the night.

It reminded me of the time my father was walking our dog Sam across the street from our apartment at night and a threatening man emerged from the park. My father jerked on the leash to get Sam to come. His collar slipped off and he froze. So Dad scooped him up and got back to the apartment safely.

Sam was a poodle mix before it was trendy. An affenpinscher-poodle, or affen-poo, or something like that. My mother's friend needed to find a home for him and my parents agreed to take him.

One summer at the beach they said my father was coming back with a Big Surprise.

We thought it might be a boat.

But my father brought home a black dog so small that he could fit in the palm of my father's large hand. Sam ran and hid under the car in our driveway at 77 Coronado St., Atlantic Beach. He of course came out and became a legendary part of the family.

As Mother's Day approached last week, if a person who thinks about their mother all the time could do it even more, I did just that. I took out my mother's handmade cookbook and made Aunt Anna's Company Chicken. I served it to a friend with parsley for garnish and candlelight or mood. (Marinate boneless breasts in dehydrated onion soup mix, whole cranberries and the dark kind of French dressing and cook at 325 for about an hour and a quarter. Before done put pitted black Bing cherries on top.)

For Mother's Day brunch, I put out the flower-rimmed placemats that she used for brunch in the apartment. Everything was beautiful; an artist on paper and in life. Doilies under plates, flowers on the table.

I didn't have enough little bowls of one kind for fruit, so I used a couple of different types and thought of her saying that everything doesn't need to match. Eclectic is more interesting. No milk containers or anything in packages should go on the table. We made an exception for the bottle of syrup.

I was kind of beat. I had gotten up at 4:45 a.m. to drive to Whately for the start of my 6 a.m. volunteer shift (handing out T-shirts) for the Cancer Connection's Mother's Day Half Marathon.

It was cold and rainy. For my last volunteer stint (Bridge of Flowers 10-K) we handed out T-shirts inside a school. I hadn't thought to ask what this would be like. It turns out we were under a tent, only partially protected. I didn't have on enough clothing to be comfortable handing out T-shirts. Luckily I had some gloves in the car but was still cold on this raw day. It took me half a day at least to get warm.

The volunteer coordinator said some volunteers had dropped out (many of them recently treated cancer survivors and patients). Understandably, they didn't want to get sick. I told her that I didn't have an excuse because it's been eight years.

Three of us handing out T-shirts sang and jumped up and down to keep warm. I was never so happy to see a Dunkin Donuts as when I headed out at around 8:30 to get a hot chocolate. All in all I was glad I did it.

With my 45th high school reunion fast approaching, I dreamt that I told someone that I wished it was my 15th and not my 45th. The person said it didn't really matter what year it was because we're all in the same boat by only being sure of this one day.

Friday, May 5, 2017

Easy peasy (kind of sort of)

Still life, real life
A friend drove me to Dana-Farber Wednesday, so I have no complaints about the driver.

First stop was 11th floor, head and neck oncology, to see Dr. Goguen, "the tongue doctor" who scooped out a piece of my tongue that had dysplasic, or pre-malignant, cells on it. That was in 2011, on Katie's birthday. I have gotten checkups once a year for a while, and the doctor said it looks fine and can now be checked just by my dentist or my regular doctors.

A physician's assistant who was with her asked if my skin had been darkened by chemotherapy or the sun. I said I thought it had changed a shade after chemo. Either way, she said I looked healthy.

On to ECP, I didn't start right away because my hematocrit had been low last time (from bleeding on the head, caused by Mohs surgery on a squamous cell), and they needed to check it. I had forgotten to get in writing the test results from a finger prick that I got at Dr. Berger's office when I had my stitches removed. I called the office but my doctor's nurse was on vacation and didn't leave a forwarding number. I called another nurse and left a message. She got back to me and said they measure hemoglobin, not hematocrit, and it was 11.

The nurse who did the test originally, as well as the second nurse, couldn't tell me the hematocrit. I thought that was odd because all you have to do is look up the ratio of hemoglobin to hematocrit.

Hemoglobin and hematocrit are parts of the red blood cell.

Hemoglobin is the protein contained in red blood cells that is responsible for delivery of oxygen to the tissues. The hematocrit measures the volume of red blood cells compared to the total blood volume (red blood cells and plasma). 

In general, to get the hematocrit, multiply hemoglobin by three.

At ECP they want the "crit" to be 27. Last time it hovered a little under, but they did the light treatment anyway.

Although I had gotten the hemoglobin from my doctor, the nurse at the Kraft Blood Donor Center had already sent my sample (after two tries because the needle hit scar tissue). It was 33. (Eleven times three!)

So I got the info from two sources that I was good to go.

My friend was standing at the end of the bed while this was going on and continued to stand there while I got hooked up to the machine that my blood would flow into for my the "internal sunburn."

I said he might want to sit down. I felt better after he did.

I just can't ask someone to drive me every other week, but it sure was nice to have a break.

Monday, May 1, 2017

Two years with the light therapy already

First day at ECP, two years ago
The light therapy, the internal sunburn, the blood thing: These are some of the ways I have described the treatment I have been getting at Dana-Farber for the past two years.

It is technically called extracorporeal photopheresis, or ECP, for Graft vs. Host Disease of the skin. When last week Facebook sent a memory from April 28, 2015, I thought it was a good time to look at the then and the now.

It began with a nurse telling me, "We have to get them to stop acting like teenagers."

The post continued,

The "them" is my T cells, and my nurse today at the Kraft Blood Donor Center at Dana-Farber told me this in explaining why it will be my home away from home for two days out of each week for the next three months or longer.

My first visits yesterday and today went well. The only discomfort occurred when the needle didn't quite hit the spot (not fun) and when my arm hurt for the last 10 minutes or so when my white cells were returned to me after being collected during the three-hour process called ECP, or extracorporeal photopheresis.

My blood went through six cycles during which white blood cells (which contain T cells) were collected and then the rest of my blood returned to me. At the end, a bag of white cells is subjected to UV radiation, which changes their DNA so they will stop attacking my skin.

"They're getting a spanking," the nurse said.

The process works for all kinds of Graft vs. Host Disease, and hopefully it will also help my liver and enable me to get off prednisone. Two other people were getting it done at the same time, and several more were scheduled for the next round at 11, and more for 3, which is when I did it yesterday, followed by the 7 a.m. session today. It felt early but it was actually a good time because I slept through most of it.

Clearly I'm not the only one who drives a distance. One couple, for example, comes from New Jersey.

And I'm not alone in getting GVHD of the skin years after my transplant. The nurse said one woman developed it after 12 years.

I had brought my computer and was able to read a little of the New York Times. I have a book but I'm not sure how that will go because I can only use one hand. I'll try it next time leaning the book on a pillow. The nurse said most people use a tablet. I'm still a hold-out on that, though.

Afterwards, I made a beeline to the cafeteria, where they have Starbucks coffee. It's not a great idea to drink too much beforehand, because if you go to the bathroom they have to put a board on your arm to keep it straight.

I texted the photo of me in the bed to Ben, Joe and Katie.

Joe wrote, "Looks comfortable!" and Katie wrote,

"Back at hotel Boston!"

NOTE: Alas, it did not help me get off prednisone. I doubt that it will ever happen. It did soften the skin that was hardening and improve my flexibility to the point that I've gotten one of the best rewards: A compliment from our pro, George, who frequently asks what they're putting in my veins to enable me to get to more balls.

Still, at this point my progress can feel frustratingly slow. I'm keeping at it at least for a while in the hopes that the ripples on my thighs and abdomen (and the feeling that it has a band around it) will diminish somewhat before I stretch out the treatments into more maintenance therapy.

While Nora Ephron felt bad about her neck I have to admit I feel bad about my stomach.

After all I've been through, I should probably get over it.

Wednesday, April 26, 2017

Why I wore tennis clothes from 8 a.m. to 8 p.m.

Lunch and dessert
It was good to get back to tennis.

I had a great time at the round robin in Enfield. The courts were free afterwards and so four of us stayed an extra half an hour. Total time was from a little after 9 until 11. I was pretty tired but felt great.

After that I went to Northampton to help a friend with a project. I usually go to Starbucks afterwards but I didn't want to be late so I went straight up Route 91. I got off at Route 5, and, not knowing if my friend and his wife had coffee, pulled up in front of Northampton Coffee.

With construction ongoing, a traffic cop was waving cars through from one side and then the other. I asked how I could get across, and she said to go stand beside her. I asked if she wanted a coffee, and when she said no, I said how about a muffin? She didn't want either, but she seemed pleased.

Inside, I found that the muffins were gone. The only possibility was an expensive almond croissant. I was hungry so I bought it, saying to the barista that I figured it was healthy because it had almonds on it.

"Food for the soul," she said.

We worked on the project until a little after three. Then they took me to the Pie Bar. The quiche with feta, spinach and peppers looked good, and so did the blueberry pie. I got pie for the meal (quiche) and split a (piece of) pie for dessert.

After that I went down to the Holyoke Y for yoga. With all that pie in my stomach, I thought I might feel sick, but I was OK.

Having skipped everything up through Monday, when I got my stitches out, I felt like it was worth it to fit in two things in one day. Good for the mental health.

By the time I picked up Maddie at Jim and Jane's and got home, it was just about 8 p.m.

But I felt better for the exercise, the company of friends, and the pie (s).


Monday, April 24, 2017

Ten good things

With Nell and Uncle Joe
1. Stitches out of head and calf today.

2.  Exercise can begin again.

3. BP normal at doctor visit today (was high at Dana-Farber last week).

4. Hematocrit normal (was low due to bleeding from head during surgery).

5. Good visit in Fairfield with Ben, Joe, Jim and Nell on Saturday.

6. Women's Running ran my piece on finishing last in a race.

Ben and Nell
7. Dana-Farber ran my piece on a support group for blood cancer survivors.

8. A friend is going to drive me to Dana-Farber next week.


9. Attended fun and interesting event following Mt. Toby Friends Meeting Sunday in which jazz trio played and performers discussed similarities between improvisational jazz and Quaker meeting.

10. At car wash today, guys vacuuming inside car found missing rolls of Tums.

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.

Monday, February 27, 2017

Adding hills and miles heading toward's St. Patrick's Road Race again

It recently occurred to me that if I can run three miles, I can run another 3.2, in (as I write this), 19 days, 5 hours, 20 minutes and 3 seconds.

That would be Holyoke's St. Patrick's Road Race, the hilly 10K which I used to run all the time but have not run in a couple of years. Last week when I saw my internist, he asked if I was going to run. When I told him that I had gotten back up to three, he said he didn't see a reason why I couldn't do the whole thing even if I walked a little. Doctor's orders? My stamina is good, possibly because I run so slowly that when I did the Hot Chocolate Run, I asked a person on the sidelines if I was walking or jogging. She kindly said I was indeed jogging.

My only problem is my right foot. The big toe and, gasp, yesterday after a five-miler, a twinge in my heel. Working on both of those things.

The other day when I decided to add some hills and get off the route of running around the lakes at Mount Holyoke, I headed out Ferry Street and went to Brunelle's Marina and back, about four miles. It was good to be on the open road, looking at the river and hearing the sounds of birds and wind chimes. I never ran with music because I like to listen to what's around me.

I'm thankful to Carol Constant for giving me the idea that I could run in a race again when she suggested we do The Hot Chocolate Run to support Safe Passage and its executive director, our summer tennis teammate Marianne Winters.

Yesterday Carol and I did five hilly miles. I felt a little bad that my so-called run was equivalent to her fast walk, but she didn't seem to mind, and we spent the time telling some stories. After a bit of this I told her to go on ahead so she could get a real run.

I said something along the lines of "I don't know how I got so slow. I walk much slower too."

This might be comparable to being hit on the head with a hammer and wondering why your head hurts.

Carol set me straight, saying anything I do at this point is great.

I had been having trouble with my blood pressure and briefly went on medicine. I was convinced it was situational (surgery, lack of exercise, Donald Trump) and when two of those things but alas not the third settled down, I got permission from Ellen, the PA at the light therapy at Dana-Farber, to stop taking the medicine and check with my internist. I saw it go down after I started the day with a brief recorded meditation while sitting next to Maddie on the couch.

As all dog lovers know, this is powerful medicine in itself.

Tuesday, February 21, 2017

What you don't want to hear in the dentist's chair

"CRAP," the dental hygienist said as she stuck that metal pokey thing in the back of my mouth yesterday.

The realization of all my dental nightmares flashed before my eyes.

"What?" I asked in a panicked tone.

She laughed and said she was sorry. She was just upset that she had forgotten to change the TV off the soap opera. She hates soap operas.

After rinsing, I told her that she had worried me along the lines of how a patient feels when, not fully asleep during anesthesia, they hear a doctor say "oops."

I looked up at the TV screen on time to hear a woman cry, "I'm never going to see my baby again!"

"OH NO!" I said.

"What?" asked the hygienist.

I told her it was just the TV.

The dentist's office is my "Cheers," where everyone knows my name. I have as much fun there as is possible. While we were waiting for Dr. Debian to come in and check my mouth, Leah gave me some pointers on the Words With Friends game that I had been playing while I waited. I had thought of a good word but then it would open up a triple letter combination.

Dr. Debian was pleased to hear that I am keeping my mouth guard in. Some of my teeth are already worn down some from grinding. I would have gotten the mouth guard sooner if I had known.

But the good news is that I had no cavities and was able to leave with my remaining 20 teeth intact.

Sunday, February 19, 2017

Thinking of my father on anniversary of his death

On Thursday I sat down at my laptop to look for a photo that I had in mind, and by accident I somehow hit archived older photos and this one of my father popped up.

There he was smiling at me when I realized it was Feb. 16, the 15th anniversary of his death. Time flies. Time stands still. It seems like yesterday that we were at Mount Sinai Hospital watching him take his last breath, and the day after that when my mother and aunt were in a coffee shop and nearly fell off their seats when they saw people wearing sweatshirts bearing his name – Alfred Gordon – and they learned the people had gotten the sweatshirts after running the eponymous race around Central Park practically under his window on the day he died, and just a few days before (even though it was many years) when he had been getting the grill ready at Atlantic Beach after my mother made her famous hors d'oevres to have under the striped awning with the flower pots hanging from it.

But it is 15 years. Diane emailed a couple of markers. Before I was sick. Before we knew about Obama. Al Gordon words: You can't complain. (Even when he could). Long good life. Both parents well into their 80s. Other fathers dying young. Many tragically. But you feel what you feel. Sometimes I feel like they are really here. The quarters that he tells my mother to drop from heaven in case I need them for parking meters. They think of Katie too. Just the other day she found one exactly when she needed it.

Now it's not like the punched-in-the-gut and dazed feeling from the day he died, when Diane and I walked down Fifth Avenue before heading over to Madison to pick up paper plates and such for the people who would be coming over. We marveled that they were walking around just like it was a normal day.

The earth didn't open up like I thought it would, but I'm sure I'm like everyone else in that on anniversaries or holidays the tug at the heart is greater.

My eyes welled up as I sat on a kitchen chair and looked out at the backyard. Maddie came over and sat next to me. I gave her a little pat.

Later when the day had gotten away from me, I realized that I hadn't finished the book for book group that night (Underground Railroad) and I hadn't exercised. It was raw outside. I texted a friend who I had told earlier about the anniversary and the appearance of the photo. "Exercise or finish the book?"

She asked how many pages and when I told her about 70, she said I could do both. Then she asked, "Lazy or not feeling well?" I wrote back that the unwell feeling was emotional, not physical. She said I should go do something because that's what my father would want.

I laced up and although I didn't measure it exactly, I ran about three miles. I came back and finished the book just a few minutes before 8 p.m., our meeting time, and went and got together with my friends. We go to the same house all the time so I didn't have to fuss. We all bring whatever, and on that night we happened to have a gorgeous healthy spread. (And wine.)

I had been reading the book on the airplane to Florida marked several of  Colson Whitehead's striking metaphors to share. In the book following the path of an escaped slave, the railroad itself is actually real, though. In giving him the National Book Award, the judges called Whitehead one of our most daring and inventive writers. We had an excellent conversation about it.

We also tell stories and laugh a lot, so that by the time I left, my mood had lightened. My father ("the walking dictionary") would have liked this part of the day also. I like to think of him taking a break from his tennis game in heaven, and taking it all in. And why not?

Wednesday, February 15, 2017

Bad dreams about skin, good night with the Dems

Eight years out. Fewer relapse nightmares.

Graft vs. host disease, mostly of the skin. More dermatological nightmares.

For example, in my dream last night I was going to Florida. Or maybe summer camp. It wasn't clear, but I had to pack for warm weather. When I got there, my first thought was that I didn't want my parents to leave. The second was that I had forgotten my bathing suit.

Some other women (girls?) said no problem, they had extras. So I took one and went into a bathroom and tried it on. It was a two-piece with a top that didn't fit over my stomach, which in real life has popped out due to the GVHD of the skin. (No, it is not the same as normal aging, it is what the doctor described accurately as feeling like a band.)

I thought I would just wear a shirt over it. Everything seemed OK until I looked down and saw some raised spots on my abdomen. I went to a doctor who paged the dermatologist. The doctor said he wasn't sure but he thought the new spots looked ominous. I was seriously distressed.

I woke up in a panic.

Then ...

I gave Maddie her morning hug and went downstairs and had half an orange and opened up the free guided meditation that I have bookmarked and did a 10-minute (well, 9:52 min) calming meditation. Then cereal and off to fun tennis (pills, water and coffee in the car), then Starbucks to discuss the headlines, home to walk the dog and this evening, attending a meeting, "Mobilizing the Democratic Party from the Bottom Up: Using our most strategic political tool to resist Trump and reclaim our democracy," held before the Northampton Democratic City Committee's Caucus.

I rode with neighbors from the South Hadley Democratic Committee. After they explained caucusing to me, it sounded interesting and important enough that I might want to get involved with the local Dems. All in all, I got a boost from the commitment and enthusiasm in the packed auditorium at Smith Vocational High School. The pizza was good too.

Thursday, February 9, 2017

Fun and running in the Florida sun

Hollywood Beach
When #WorldCancerDay came around on Saturday, the second day of my mini-vacation to Florida, I thought about how I don't need a day to mark it. A lot of people were tweeting with the hashtag, but although some aspect of it is never far from my mind, I couldn't think of anything particular I wanted to say. My pinned Tweet says it all.

I did do one related thing: Talk to someone from the Gift of Life, the bone marrow donor program that found Denise for me. I said I would register for their Boston 5K this spring and write my story for them. I've done this kind of thing many times: "XX years ago, so and so couldn't imagine running the xx-mile race, but she is training for it now, thanks to such and such organization that made it possible."

In my case that would be, "Eight years ago I needed oxygen after struggling to walk just half the length of a nurses' station, but on April 30 I'll be running...."

Being in Florida for five sunny days gave me the chance to run an easy three miles on flat palm-tree-lined streets. On my last day I added that same distance in walking because (ahem), when I got back to Deb's place and reached into my pocket, I couldn't find the key. Not wanting to bother her during her busy day, I decided to retrace my steps. First I needed water. Unless I was going to drink it from the pool, I would have to knock on a door that had some sound of life coming from the other side.

Some nice people from Quebec took care of me. A woman in the kitchen explained to her husband, "Elle a perdu sa cle´" to which I added, in my best high school French as I drank the water, "Je suis un idiot."

With Deb at Margaretaville
I retraced my steps but came back empty-handed and called Deb. She met me in the hall. Before opening the door, she looked me over and asked, "What's that in your pocket?" Duh. The key. Which had slipped down deep into my pocket like the part in your coat that catches your change. She pulled out a few dog treats and unearthed the key.

"What am I going to do with you?" she asked. "Send you home, I guess," she replied. I was going home anyway. Although feeling silly, I at least felt like I had enough exercise that day.

Her condo is a short distance from Hollywood Beach, where we had walked the first night on the broadwalk (not a boardwalk because it isn't made of boards) and taken a quick tour of the glitzy lobby of Jimmy Buffet's Margaretaville.

The beach is crowded, but but you can still find your spot. I covered up from head to almost-toe because that's the way it is for me now post-squamous cell. It was wonderful anyway, and I would have liked to bottle the sea air.

I floated in the blue-tinged ocean that was almost as calm as a bay. Lying on my back, I thought of my mother, who used to float that way and put her hands behind her head and close her eyes. Hi Mom, I said, looking at the sky.

With Nan at Fairchild Gardens
The next day, when we drove down and found a spot better than Deb had expected, I also talked to my father, who I like to think guided me there. I tweeted my remembrance of the kids saying "Thank you grandpa" after he had died and we found the perfect spot in front of the apartment when visiting my mother. (This all stems from the lengths to which we could discuss finding a spot "that's good for tomorrow.")

In addition, I had a great but too-short visit with my high school friend Nan. She took me to beautiful Fairchild Tropical Botanic Garden, where we walked around, had lunch, and caught up with our news. It was also fun to meet her children. (And we got this old how?) A dancer and personal trainer, Nan is very Zen. I asked if some of that could rub off on me. It was hard to totally avoid talking about The Thing that has overtaken Washington, but at least we circled back to the good stuff.

I also said I wanted to go to that waterfall where we've seen photographs of her with her son and daughter.

She said I'd have to go to Hawaii for that.

"Settling" for Florida wasn't too hard to do.

I write as I look out my window at the blizzard.

Tuesday, January 31, 2017

A long way from there: remembering the night of my 8th (re) birthday

With my donor Denise Ledvina when we met in 2011
In looking for my blog post from Jan. 31, 2009 – the date of my fourth bone marrow transplant – I scrolled through posts from later that year when I was at Dana-Farber a lot. In this one from that September, headlined No transfusions!, I wrote:

This week's clinic visit was a shocker, in a good way. I didn't need any transfusions! I had gone ready to spend the day, and I hardly knew what to do with myself. Well, I can say for the first time in a long time that I didn't spend the whole day at Dana-Farber.

Platelets were 21, still very low but up from 10 to 12, where I've been hovering. My hematocrit is pretty low – 25.3 – borderline for transfusion. But since I've been doing a lot of walking, and even a little tennis, I seem to have adapted, although I am kind of sluggish. The fewer transfusions the better, so they let me go because I feel OK. My white count is normal, 6.6, and my potassium and sodium are about where they should be, although the sodium is still low. I guess I need to eat more potato chips.

For a reference point, normal platelets range from 150-450, and normal hematocrit for women ranges from 34.9-44.5

Those platelets were pretty low for running around playing tennis. It's a good thing my friend Donna didn't know or else she wouldn't have let me.

The comments struck me more than the low counts, though, from back in the day when people commented on the blog instead of on Facebook.

PJ (aka Patricia), Ann and Dori, fellow leukemia patients who also received more than one transplant, congratulated me, as they had done on the date of my fourth transplant eight years ago today. We did that for each other when reporting our successes via our respective blogs. We also commiserated and even darkly joked when things went wrong.

Now of course they are all gone, and while I think of them often, I do so even more on anniversaries like this one.

Patricia and Dori had the same nasty disease as I had: acute myeloid leukemia, or AML. Ann had an even more toxic kind but did not die from that. Cause of death was a squamous cell cancer that appeared on her tongue and then spread through her body. This is where luck, good and bad, comes in. I remember clearly lying on my couch and talking by phone to Ann and Chris in New Orleans, telling them what it was like to have the same procedure that Ann would be having, a scoop taken out of my tongue. Except a dental surgeon found mine when it was pre-cancerous because of the "good luck" of needing to have 12 teeth removed. (One or two at a time over a period of a couple of years.) The surgery on my tongue hurt like HELL for a long time. But that was that, and now I only go once a year to see the head and neck oncologist.

I especially miss Patricia, because we lived near enough to see each other and become real friends. We had so many similarities, we even called each other doppelgangers. (Three kids, runners, dog-lovers, Dana-Farber, AML...) We paralleled each other until her death in 2014. She had such a terrible time in the end.

I think if I got morose, Patricia would tell me to snap out of it, because that's the sense of humor she had. So I'm going to look back at the date without tears.

PJ, aka Patricia Jempty,
Jan. 23, 1954-June28, 2014
Jan. 31, 2009: New stem cells, signed, sealed, delivered

If you want to read the linked post, you'll see how I waited with anticipation and nervousness for the cells to arrive and how my nurse, Helen, monitored me closely while the stem cells flowed out of an IV bag into my catheter. I usually tell people that the infusion of the stem cells is not a big deal. It wasn't for the first three, but I guess I blocked out what happened near the end of the fourth.

I started shaking vigorously. My heart rate skyrocketed. Helen gave me 25 mg. of Demerol, which didn’t stop the shakes. She paged a doctor who rushed in. I got another dose of Demerol, more Benadryl, hydrocortisone and some Tylenol. They put me on oxygen.  Everything calmed down in about half an hour, and, after soaking through two hospital gowns, I finally got a few hours sleep. 

Today I am a little puffy and bleary-eyed, and I’m starting to feel the beginning of the predicted mouth sores. Somehow, my platelets went up overnight on their own, from about 10 to about 40, so I don’t need any “products” today. I think I will take that as a good omen.

Diane brought me a birthday present yesterday: a card with a pop-up bouquet and a bag filled with the other kind of product that I now need after my transplant. It contained shampoo, conditioner, lotion, body wash and lip gloss, all in pretty perk-me-up colors. (After transplant, you’re supposed to start with everything clean and new and throw out old products.) On the card, she wrote, “Here’s to a wonderful and healthy life with your new mystery donor!”

Last night, as the evening weirdness settled in on me, Diane reminded me, “You’re getting another shot at a whole new life. It’s great. It’s the miracle of modern science.”

So here's to modern science; and to my donor, Denise; and to Dana-Farber, and to everyone who helped me get through it. Here's to luck.

And here's to PJ, who commented at the end of that blog post:

"Sounds like your body had a wild party last night. My heart rate went up just reading your post.
Here's to the mahvelous miraculous new you."

If you want to learn about how to become a donor to save the life of a person with blood cancer, go to BeTheMatch, formerly called the National Bone Marrow Donor Registry.

Monday, January 30, 2017

A baby visit and a (re) birthday

Musician-in-the-making
A little experiment with my blood pressure monitor shows the effect that reading about politics, and the opposite, sitting quietly, has on me  (and probably on some others).

 When I took it after glancing at all the bad news on Twitter this morning, it was 154/77. I took it about five minutes later after closing the cover on my laptop and sitting for about five minutes, and it was 103/78. I don't know what to make of it when the upper number is high and the lower number is normal, but in any case in looking at the top number I could see the difference.

I'm sure it was fine on Friday because I had such a good time when Nell and Ben came to visit. We took a little walk with Maddie, but it was too cold and windy, so we had lunch and played inside. She enjoyed sitting at the piano that my parents gave Ben on a day that seems like yesterday. I sent it home with them to go with the other instruments in her "band."

She also liked "talking" on two old remotes. I'm not sure why I'm keeping them. Maybe for nostalgia because I don't like the new system with the blue talk-to-me button. Or because they're good pretend phones.

As I've gotten back to exercising, I can feel the repercussions of the three-week gap the most in yoga.

On Thursday after class, I knew that my arms would soon be sore from doing down dog and plank. On Saturday as soon as we did the first pose, I realized how sore my forearms were. I thought, maybe I should leave. But of course I didn't, instead doing child's pose when I needed a break.

I also did legs up the wall when they did box pose for handstand preparation. Way back before leukemia, I had been able to do this with help from my teacher, Erin, who had me put a strap around my forearms to provide a sense of stability.

I am better at acknowledging without judgment "that was then, this is now" with yoga than I am with tennis or running, when I sometimes compare what I used to be able to do with what I can do now. The metaphor of the yoga class is one of sticking around and doing something that's good enough for that moment even if not as advanced as before.

In any case, today at tennis I hit some pretty good net shots and had some long rallies. This is a lot better than I could do eight years ago, when I could only walk around my hospital room or the nurses' station or sit in my chair or lie in my bed while awaiting my new stem cells.

They arrived eight years ago tomorrow.

Thursday, January 26, 2017

Of high blood pressure and gratitude

Reading Underground Railroad at Dana-Farber
during light treatment in order to avoid the news
A post that I came across in a blog-sharing group struck me as something helpful to share. I want to get to the part about going on blood pressure medication and not wanting to, and how it got to be this way, but first, an interview with Maya Angelou and various sources on how keeping a gratitude journal is a key ingredient to happiness.

This could be especially helpful these days when the irrational behavior of a certain individual can threaten our own equilibrium.

I did something like this a while back, sending to a friend, and a friend sending to me, five things we were grateful for on each day. It was great for a while but was hard to keep up. This one seems easier. Just three things.

The end of Avenue Q when we saw it way back when concluded with an applause-generating phrase, George Bush is only for now, which was changed when he left office. You could substitute Donald Trump is only for now, but that might not have much of a calming effect because he and his minions are so terrifying.

I would put him third on a list of the reasons for my high blood pressure.

1. It started with the Mohs surgery three weeks ago, and with the knowledge that they were going to remove a larger than usual squamous cell cancer from my ankle and cut a slice out of my stomach, while I was awake, to use as a graft in the hole. A couple more pieces of me chipped away. As I wrote, it wasn't as bad as the anticipation. But the pain was intense enough for about a week that I took double the usual dose of pain medication.

2. My routine was disrupted, the source of my endorphins gone. I was unable to play tennis or go to yoga or even walk very far. The doctor said to limit it to 20 minutes, just for walking the dog, not an exercise walk. I did that gingerly. I also did a little stretching and tried to meditate, but it was hard because I was either in pain or falling asleep from the drugs.

3. Donald Trump. Nuf said.

After the high reading at the Mohs center and another at a local doctor's office, both of which seemed to be variations of White Coat Syndrome, I got a prescription for Losartan (and instructions to drink less coffee.)  But when I took out my old blood pressure monitor the next day and the numbers were normal again, Melissa said it was OK not to take the pill. She said to monitor it, though.

I then made the mistake of sitting at the computer for a long time, writing with breaks to read all sorts of bad news, and remembering that I hadn't taken a reading that day. I should have sat quietly before I did it, but I didn't, and it was 202 over 118. I usually run normal (120 over 80 or so) or even lower.

I paged Melissa, who always gets back to me quickly. (Thank goodness for Melissa, and for caregivers like her.) I asked her if I was having a heart attack. But I wasn't having chest pains, so she said to take a pill and relax and call her in an hour. By then it was back to normal. But she said that after three high readings I should take the pill.

We are going to reevaluate after I am back to my routine. I started with tennis Monday and yesterday.

The nurses at ECP yesterday said to pay attention and make sure it doesn't go too low. This morning it was lower than usual, 106/75. I texted the friend who I've been discussing this with, "Better drink some coffee." We had also been discussing the impact of salt, and she texted back, "Or eat salami."

Today, it was good to get back to yoga. I took it easy, knowing how sore my arms would be if I did every down dog and plank. I left the Northampton Y feeling calmer. But in the car I turned on NPR and listened to a story about the Mexican president canceling his US trip due to Trump's insane claim that Mexico is going to pay us back after we build the stupid wall. I fumed. I do not want my tax dollars to go to that wall.

I definitely wasn't going to take my blood pressure after that.

That gratitude journal could be a wall between sanity and insanity. Tomorrow I will start by writing that a certain big sweetie is bring a little sweetie to South Hadley for lunch.