Sunday, December 25, 2016

Celebrating Chrismukkah the Jewish way

Miracle Max
I was going to do the Jewish Christmas today but was too tired after serving food at Kate's Kitchen (came home and fell asleep on the couch) so it's a good thing I did something like it last night on Hanukkah/Christmas Eve.

The "Spread the Light Community Hanukkah Event" at Congregation B'nai Israel in Northampton last night was a lot of fun. I didn't know anyone but sat at a table with people who were warm and welcoming. We lit menorahs, sang and said the prayers and then had Chinese food and watched "The Princess Bride."

I didn't realize that is considered to be a Jewish movie. But people said that's why it was chosen for the evening. I guess it's fitting, on a holiday having to do with miracles, to show the day being saved by a character named Miracle Max (Billy Crystal). And you have your Jewish actors: Crystal, Mandy Patinkin, Carol Kane and Peter Falk, who says, when he is finished reading the book, "Shalom."

You're not supposed to broadcast when you're going out of town (not safe) so I will say that at some point in the near future, Katie and I are going to New York to see Falsettos. A friend who is from Brooklyn calls New York "The Old Country," but when I say I'm going to The Old Country, not everyone gets it. Because to many around here, that's Ireland. In any case we're going to see some people and do a few other things in our short visit. In my Old Country.

Last week my essay, This is What It's Like Living With Two Types of DNA, ran on a new site for me, I told some people that it explains why I'm so weird. One of my doctors sent me a screenshot to show me that Apple News picked up. That was fun.

On the medical front, I found out last week that the spot that was concerning me was indeed another squamous cell cancer. It is larger than the others so it might need a graft. My first concern was that, since it's on my ankle, it's going to make me sit out of tennis and hurt my running comeback. These are not serious but just the sound of them freaks me out due to having lost a friend to a squamous cell cancer that appeared on her tongue and spread through her body after she survived leukemia.

And for days after, they hurt a lot. I'm wondering if it's going to be hard to get around for a few days.

It's a good thing I advocated for myself after a PA told me repeatedly that it was nothing. I don't think it has gotten any larger during that time but, unlike the others, it hurts, and I could have been done with it sooner. I'm going to Mohs on the ankle and my left hand the first week of January.

My blood pressure was super high at the dermatologist's on Thursday. I imagine it's because I spent a week being worked up about this. Someone said it also might be the election.

Friday, December 23, 2016

My mind is running away and it's hard to catch it

I have an early appointment this morning at Dana-Farber with Dr. Liu (Stephanie), the expert in subcutaneous dermatology, who will hopefully settle the questions over whether I should go back to every two weeks of ECP (1) and what is going on with the spot on my ankle (2).

1) Probably go back to two weeks. My hands and legs are getting puffy again, and I am seeing more spots on my hands. (Though it hasn't hurt my tennis game because I played well this week and even had an ace.)

2) In the absence of a diagnosis, my overactive mind has been filling in the void with everything from a flesh-eating bacteria to some mysterious cancer that will be the one to do me in, a sneaky thing as I was being vigilant against leukemia.

Picture me on my fainting couch, like Blanche Dubois saying, "You know what I shall die of? I shall die of eating an unwashed grape one day out on the ocean."

I admittedly have an over-active imagination, exacerbated by a dose of PTSD, but the bacteria idea didn't come out of nowhere. A few days after my biopsy last Friday, I got a call from a doctor covering for Dr. Yang (the one who did the biopsy.) He asked if it was getting larger, to which I said no. He told me preliminary reports show a kind of bacteria that usually shows up in the throat but not on the skin, and that I should keep applying the antibacterial ointment until we get the results.

The spot burns on and off. Sometimes it's very painful.

My internist wouldn't play the reassurance game when I went to see him for a medication matter. "It's been there for so long, it's not going to do me in, right?"

A nice answer would have been "probably not."

Instead, he said, "Let's just wait for the biopsy."

I paged Melissa, who knows the drill.

I said the uncertainty was making me a little crazy, and she said she understood and said she would keep on top of it. Hopefully it will be settled today.

Wednesday, December 21, 2016

Remembering a beautiful person, gone too soon

Yesterday would have been Jennifer Sack's 38th birthday.

Her friends and family have been saying Happy Birthday in heaven. They're saying it on Facebook while sharing their memories, and they said that and Happy Hanukkah too at the Sack family Hanukkah party that I attended in Riverdale on Sunday. They are saying how much they miss her and how almost a year after her death, it hasn't gotten much easier. A friend of hers shared the photo above.

It was of course her twin brother David's birthday also. He came from California to be at the party. It was good to see him. I had pneumonia and couldn't go to the memorial service last year. She committed suicide not too long after last year's party, when she was so cheerful and funny and fun to talk to.

It was hard for everyone on Sunday but also important to get together and share memories of Jen. I said she was the bright light in the room. I only knew her at family gatherings and so cannot begin to imagine how painful it must be for the ones closest to her. Still, as I wrote in last year's blog post on Jan. 7 (below), it was shocking and devastating for me too. The news reports said it was depression, but I believe it was more complicated than that.


From Sick and Heartbroken Jan. 7, 2016

I have been feeling under the weather and coughing but not too bad until over the weekend I got a low-grade fever and called my doctor's office where the physician on call said it was probably viral.

But when I went in to see Dr. Berger on Monday and told him my chest hurt he said that given my history he would give me an antibiotic, Levaquin. He sent me for an X-ray which later in the day revealed I have pneumonia.

It is not terrible like the time two years ago that I had to be hospitalized, so I have been going out a little to do some things I need to do. For example, Jane and Jim are away so I have to take care of my dog. I called Joe to see if he could come home this weekend but he had plans, so I had to go to the store. Without my exercise-induced endorphins, I feel mentally as well as physically crappy.

Jennifer Sack
I came in on Tuesday so see this post on Facebook: NYPD Wants Your Help Finding Missing Bronx Woman.  I wrote WHAT? because I saw that it was my beautiful cousin Jennifer, 37 and a twin – actually my cousin Peter's daughter, technically my first cousin once removed, but to me they are all cousins – and I had just talked to her at our Hanukkah party in the Bronx. We had such a nice talk and she had said I should stay with her next year. She looked like a model. I had no idea that anything was wrong, but the story said she was depressed. Her cousin sent me the link. She had been missing since Sunday.

She sent her parents an email with the heading "I'm sorry," saying she was going to jump off the GW bridge. She left a long suicide note. I was hoping that she was wandering around and had rethought it or that somebody might have stopped her. Apparently it is way too easy to jump off this bridge, with someone attempting it every 3.5 days and only a waist high metal guardrail. A story stating that an anti-suicide fence was planned by 2024 raised the question of why isn't there one already. Talk about scandal and the George Washington Bridge. It is a scandal that suicides off the bridge are on the increase and that people so distressed and vulnerable know how easy it is to do.

Her body was found yesterday near the Manhattan side of the bridge. I keep looking at her picture and wondering how that could happen. She was so beautiful inside and out and so full of life. I remember back in our apartment in New York 37 years ago pacing the living room and looking out the window at Mt. Sinai hospital where their mother, Diane, was in labor, and wondering when the twins would be born. They were so cute growing up and such nice adults who I always tried to see on holidays. To lose a twin must be almost unbearably hard.

I would like to share my sympathies with the family at the service on Sunday in New York, but I will not be able to go. So I will have to send love.

Monday, December 19, 2016

The saga of another mystery spot

Spot under here
The spot on the inside of my right ankle has been there for months and months. It is a circle the size of a nickel. I have seen blogs where people post gross photos of their skin, but I'm not going to do that. I covered it with a fun bandaid.

A while back, I asked Ellen, the physicians' assistant at the Kraft Family Blood Donor Center, about it, and she said that due to my graft vs. host of the skin, things like this just take longer to heal. She said it didn't look too bad.

One night shortly after that I was looking at it and decided that I should look up ringworm because it looked like a ring. The photos looked similar. I emailed the shots to Melissa and Jenn (Dr. Lin, my primary dermatologist) and asked if they thought it was ringworm. Jenn said it did not look like a fungus. She said someone should look at it.

Cristina Powell and her artwork
So I went to Brigham Dermatology in Boston and saw her colleague, Dr. Yang. She said she could biopsy it but she could also give me an antibiotic ointment that might heal it. She gave me the ointment. I went back in a few weeks and she said it looked better and I could stop using the ointment.

But when I stopped using the ointment, it got red and painful again. Ellen said she has seen people at ECP, aka the light therapy, with spots like this that just don't go away.

When I saw Dr. Alyea recently he said he wasn't happy with a spot that doesn't go away. He said I should get the biopsy. He took a photo and sent it to Dr. Lin. She wrote, "It actually doesn’t look that bad (meaning does not look malignant), but things look different on patients who have had BMT."

I liked the first part of the sentence. I spent some time trying to parse the second part, wondering, does that mean although it doesn't look bad, it is bad? The first opening wasn't until January. I guess if someone thought it was bad they wouldn't delay the biopsy. So...

On Thursday I got a call about a cancellation the next day. It was too late to arrange for transportation. I played tennis in the morning and then got in the car in my tennis clothes and drove to Boston for a 1 p.m. biopsy. 

I spent a little time in the lobby at the medical building and looked at the beautiful artwork done by Cristina Powell, a young woman with cerebral palsy. Through her non-profit, A Brighter Way, she and her mother donate the colorful, cheerful paintings to hospitals, cancer centers and pain clinics. She makes cards, bookmarks, miniature prints and T-shirts. I usually pass by, but I had the time so I talked to both of them. And I shopped. A little something for some people I thought would like it and a little something for me.

When I got home, the stupid spot hurt like hell after the novocaine wore off, as these things do. I took something for the pain and unwrapped the packages and thought about which one to keep. Although I do not really think this is major, it is part of the drip, drip, drip, and the uncertainty that comes along with it, that can get me down. Looking at the cheerful images helped.

Thursday, December 15, 2016

Ways to stay (slightly) sane in post-election daze

Holding signs of solidarity at the Islamic Center of Western Massachusetts
There is so much to get upset about during this post-election season. Did you ever say a word over and over again until it doesn't make sense? Like the word irked? Some of it is extremely upsetting and some of it is a nagging IRK.

I have kept pretty quiet around the people who watch my dog, but for the first time the other night when I went to pick her up I just couldn't control myself.
Attorney Tahirah A. Wudud gives situation update

"How do you like your guy's cabinet picks?"
"How do you like the way he bullied that nice union boss?" (Chuck Jones, who called out Trump's Carrier deal.)

Answer: "We voted for him and he's our president and you Democrats have to get over it. The country couldn't be any worse than it's been for the past eight years." Huh?

During the election, when we had one brief discussion, I mentioned that the unemployment rate was way down and got this answer: "You people believe what you want to believe." So it is a dead end and they are super nice people and they love my dog and I couldn't do what I do without them so I know I have to keep quiet.

I really need them when I go to Boston. I don't actually need them that much otherwise except that having Maddie go there is a win win situation. They love her and she loves to go there so much that when I open the car door she runs up to the house. If I tell her she's going to stay home she gives me that mournful look. (Who's the boss?) When I pick her up she goes over to each one and says goodbye.

Yesterday I told them that I was going to a mosque. I didn't finish the sentence with the reason I was going to the interfaith gathering at the Islamic Society of Western Massachusetts. It was of course to stand up against the hate incited against Muslims and Jews by the President Elect.

It was a cold dark night but I was glad I went. The spirit was amazing. I talked to a lot of people in the standing room crowd and signed up for something (not sure what) on a sheet where people stated their desire to help. There were more than 200 people, and we all got served a delicious dinner. One of the members of the mosque was a student of mine at The Literacy Project and she took me into the kitchen full of brimming platters and told me to make myself a plate. (Others were doing the same.) So, dinner tonight.

I found out about the event through the Jewish Federation of Western Massachusetts. I would like to do more. It fits into number 1 on a 10-part plan of not losing my mind or harming my health over this insanity.

1: Do something (i.e. get out of my head).
2: Donate to more causes within my means. It was hard to chose but I picked: ProPublica (journalism in the pubic interest), Environmental Defense Fund, Anti-Defamation League,  and, drumroll...Planned Parenthood.
3: Talk it over with like-minded people.
4: Pet the dog, walk the dog, talk to the dog.
5: Exercise (TENNIS, yoga, spinning).
6: Write.
7: Limit TV news (bye-bye Morning Joe, one MSNBC program and no more at night).
8: Read about something else.
9: Plan a trip (I'm going to Florida!)
10: Do something nice. I got my dentist and his staff an edible arrangement made of fruit. Because he is so nice to me and gives me the best price he can and because the staff is so friendly. Kind of like my "Cheers"...sigh.
11. Watch and rewatch old and new Gilmore Girls episodes. Because.

Wednesday, December 7, 2016

With changing situations, adapting goals

With tennis friends at Hot Chocolate Run
I've decided that since 60 is the new 40, the 5K is my new 10K. At least for now.

It was great to be in a crowd of runners again — 6,500 of them — at Sunday's Hot Chocolate Run in Northampton. It was great to go with tennis friends and to support Safe Passage and to be in such a spirited scene at a time when the national news is so depressing.

As for the run itself, well...

Due to the problem with my toes, I hadn't run very much. And when I did run a little, it was on mostly flat ground around the Mount Holyoke lakes. But when it appeared that my new chiropractor had fixed my toes by working on (OK, killing) my calves, I decided I try it. But I didn't realize that the run through Smith College and Northampton had HILLS. They wouldn't have been hills to someone who has been running, but they were hills to me.

I leaned into them and did my best. I was so slow that I wasn't even sure if I was walking or running. At one point near the end as I passed two spectators, I asked, "Am I running?"

"Yes, you look good!"

They were nice.

Coming into the chute, I wasn't dying or anything, but I couldn't straighten up. During the walk through, I mentioned that to some women I thought I recognized. One of them asked if I wanted to go to the first aid station. No I didn't; I didn't go to first aid when I nearly fainted at the end of my infamous/famous Saint Patrick's 10K when I had leukemia in 2003 and didn't know it, so I wasn't going to do it on Sunday.

I picked up my purple hot chocolate mug and leaned against a tree. I wanted to see how the chip reader worked when you stand in front of it with your bib on, so I went over and tried it. It was a little over 50 minutes for three miles. About the time that at one point I could have run twice that much.

I shrugged it off because the point was to see if I could run without pain. I did, and that was the victory. Now maybe I can run more and get in shape for some other 5Ks. A friend from the tennis group said she would do it with me. I have to admit that the thought of another St. Pat's race did flash through my mind...

I went home and lay on the floor and stretched. Then I took a shower and went down to Bev Bloomberg's "Brunch and Buy," where I joked to people that I was eating as much food as though I had run a 10K.

In my dream that night, a group of us took turns lying on the ground and trying to catch the string of a pink balloon that someone down the field was shooting into the air. My turn came and I caught the string. It was a little difficult to see but I got it. I looked up into the sky and saw another pink balloon floating, then another and another. They were all disintegrating and falling down in little pieces. At first I thought that they were going to hurt me, but then I realized that they were light and wouldn't bother me and I would be OK.

I looked all this up but it is too complicated for me to put together.

Today and tomorrow I got to Boston for maintenance.

Today is photopheresis and tomorrow a checkup with Dr. Alyea at Dana-Farber.

A friend asked me if I ever went a whole week without a doctor's appointment. I said probably not.

Saturday, December 3, 2016

Running for fun and a good cause

I can remember clearly the warm early fall day in 2002 when I felt like I was flying along Woodbridge Street towards my house, having just about finished the 10-mile run that my friend Bill Zajac, an experienced marathoner, said would be a good basis for my upcoming half marathon. 

I felt good, as I did when running the Hartford Half in October, so good that I thought I could have continued onto the second loop with the "real" marathoners. It was a funny day in many ways. First, funny in an unexpected way when I beat my friend Mike, who always beat me in tennis. Funny because it was pouring, and Mike and I got drenched when dashing between trees for cover, not knowing what the more experienced participants knew, that in weather like that you cut a hole in a garbage bag and wore it like a cape that you shed when the race began.

Feeling a little under the weather, so to speak, I had talked to my mother the night before. She had urged me not to go. I got up in the dark and went on the adventure anyway. Very possibly, leukemia was brewing, because just about five months later I ran the sluggish Saint Patrick’s race that led to my AML diagnosis. 

I bring this up because, due to pain in my toes, my training for tomorrow's Hot Chocolate Run has mostly involved doing other activities, with a little jogging thrown in.

I'm doing the 5K Fun Run (as opposed to the more competitive road race) with some tennis friends. Carol Constant, the captain of our summer team, the (Holyoke) Paper Dolls, organized our little running team to show our support for another of our tennis friends, Marianne Winters, executive director of Safe Passage, for which the race is a fundraiser.

As I wrote in my piece for, pain in my right big toe has curtailed my running. When the other big toe started hurting also, I followed the advice of a runner friend who said to go to a chiropractor. At first I thought, “Chiropractic for your toes?” But I made the appointment with a chiropractor another friend had recommended. He was luckily able to fit me in last week.

That chiropractor, Keith McCormick, was the right person to see. He is a triathlete who knows a lot about running from personal experience. My friend said he’s great at figuring things out. He figured out that the problem in my toes is coming from my calves. When I saw him last week he said he could get me to the point where I could do tomorrow’s run.

He worked on my calves (and my feet) three times this week. The pain was excruciating. I squealed. Yesterday I ran … well, scratch that, I slowly jogged…2 ¾ miles.  My toes felt OK at the end: a good sign. So that is my training run for tomorrow’s 5K.

I would have done it more consistently if I had been to the chiropractor before. But I figure with all of the walking, tennis and spinning I should be able to do three miles. It's a long way from the days of 10Ks and more, but it's better than not doing it all.

Plus we’ll get to have hot chocolate.

Wednesday, November 30, 2016

A loose tooth, a big wave, and the meaning of it all

Another night, another nightmare back in the dentist's chair.

Did I say I lost 12 teeth? Yes, of course I did, and my subconscious keeps chewing on it. (Sorry not sorry about the pun.)

I dreamt the dentist was poking a pointy instrument inside of my lower lip, moving it around like he was looking for something. I didn't know what it was. Finally he fished out a big molar and held it up on a skewer for me to see.

It was my only remaining tooth on my upper left. I was extremely upset because I can barely chew on the right. He said not to worry and popped it back in place. I asked was he sure it would stay there. He said it would, and if it popped out again he could put it back. I was dubious. But I went on my way.

The way led to one of those big wave dreams. Maybe you have had them. I know some other people who have. I guess it is common because when I looked it up, I typed "what does a big wave" and it filled in "mean in a dream."

According to the author of a  blog about dreams, "If we look at water in our dreams as a symbol of our emotions and feelings, part of our inner world, then tidal waves can be like our emotions welling up and getting a little out of control." 

The writer, Amy Campion, continued, "Tidal wave dreams and tsunami dreams invite us to dive into our subconscious, then perhaps we can learn to swim or surf and enjoy the experience of being at one with our-self, of exploring our emotions.  If we are lucky, we may even learn to breathe under water.

In last night's dream, I was standing with my family against a sea wall when a big wave started rolling in. It was me, my mother, Katie, and two others. (I don't know who.) As the wave got closer, we all took a big breath and dove in. I did it like I used to do but would never do now because I'm not steady enough. I faced the wave and plunged under. I told Katie to do the same.

The water calmed and I popped up. Then my mother. Then the others. I looked anxiously for Katie, and then her head appeared out of the water.

Another wave was coming and I said to my mother, come on, let's move to higher ground.

So we all did. I think that was a pretty good ending.

Saturday, November 26, 2016

Edward Hermann, Lauren Graham and me

In November 2001, an actor was telling me about a stage adaptation of "American Letters" from the best seller "Letters of a Nation," covering 1744 to 2001, written by both the famous, such as Washington and Lincoln, Mark Twain and Edith Wharton, and by the not so famous. 

Speaking before the performance at The Miniature Theater in Chester, he said, 

"There's precious little that an actor can do to help out after an event like 9/11, and this is one of those things. I've done some readings to reinforce the notion that our history is a continuum, and that it's always had, in moments of crisis, men and women who are equal to the task. It shows how magnificent people are under that pressure and what can be achieved. It shows people struggling to make sense out of a world that was as chaotic for them as ours is for us."

That actor was Edward Hermann, 58 at the time, now gone for two years but alive in many ways on the "Gilmore Girls Revival." I found the interview in the old Union-News files when going back to look for clips to send to an editor who had listed an opportunity for a theater-related freelance-writing job. His comments about a chaotic world stand out as especially pertinent for this time.

It was before I watched "The Gilmore Girls" on boxed sets with Katie, the perfect mother-daughter activity, eating ice cream and saying to each other as one episode ended and another was about to start, "One more?" She was basically the same age as Rory and I, although not exactly the same age as Lorelai, was of course divorced also.

He had told me from his home in Salisbury, Conn., 

"Perhaps it's because I did Roosevelt a long time ago that I've been tagged with the label of the history guy,'" He said he didn't mind the label and was particularly eager, in the wake of the terrorist attacks, "to remind people of Americans' history of resilience, overall decency and humanity." 

He played Franklin Delano Roosevelt on TV opposite Jane Alexander in two miniseries, "Eleanor and Franklin" (1976) and "Eleanor and Franklin: The White House Years" (1977). He also portrayed FDR in the musical "Annie" in 1982.

I wrote that he was back east on a break from filming the multigenerational TV series, "The Gilmore Girls," in which he played Richard, the old-fashioned father of thirtysomething Lorelai Gilmore (Lauren Graham), mother of teen-ager Rory (Alexis Bledel).

He had said he likes the fact that the show portrays three generations working together. "It shows teen-agers that they're not alone, that they're connected to a continuum. Old people don't have to be idiots. They can have some wisdom to pass on, and that's very reassuring."

Mothers and daughters watching the revival now, as we are doing, can also find reassurance in the continuity. And whatever you think of the revival, most would probably agree that part of the continuum is seeing Lauren Graham's Lorelai, although obviously older, not that much changed from the last time we saw her when the series ended in 2007.

I also interviewed Graham back then. It was the summer of 2002 and she was at The Williamstown Theater Festival. She told me that she thought the relationship between Lorelai and Rory "is something a lot of people wish they had, a fun mother-daughter relationship."

And she said that while many viewers are probably drawn to the ease with which Lorelai and Rory communicate, many can relate to Lorelai's less-than-ideal relationship with her own mother. 

Back then she was performing in the Moss Hart-George S. Kaufman collaboration "Once in a Lifetime," set in 1927 as talkies were coming in. Graham played Mary Daniels, an actress turned speech instructor who follows her love interest to California.

""My father read the script and said, 'You're playing another wise guy,'" Graham had said. Same old is comforting now with so much else in turmoil.

Friday, November 18, 2016

Squamous cell city and housemaid's knee

At Mount Holyoke with Ben and Nell
Last Friday I went to Boston to Brigham Dermatology Associates to see dermatologist #5 to get three spots biopsied.

Saturday I had an adorable little visitor.

Tuesday I went to the Mohs center at Faulkner Hospital (also affiliated with Brigham) to have a squamous cell cancer removed from the middle of my forehead and another removed from my right hand. I was lucky because this can take multiple passes but it only took one each. This is the procedure in which you wait about an hour and a half while the doctor studies the specimen under the microscope to see if all the margins are clear.

Wednesday I stopped in to see my nurse practitioner, Melissa, before my 3 p.m. light therapy. I showed her the egg on my knee. She didn't like the way it is inflamed, and since they are very careful with me, she made an appointment for me to see an orthopedist the next day. I wasn't planning to stay over and the logistics got complicated and frustrating but Margaret came and took me to her house and saved the day.

While I was waiting for the orthopedist on Thursday, I got a call from the Friday dermatologist and learned I had three more squamous cells. One on my left hand, needs Mohs. The others, on my cheek and another on my left hand, can be treated with effudex, a chemotherapy cream. It is the second one on my cheek. I also have been treating one on my nose.

Somewhere along the line I think I missed a face fry so that is why I might be getting more on my face. I have one scheduled for February.

I was super careful this summer, wearing sun protection gloves and plenty of sunscreen, so this is disheartening. It is not serious but more of a drip, drip, drip. When the Mohs surgeon was leaving the room I thought she said something about another pill I can take, but she didn't say what it was so I wrote an email to my main dermatologist to ask her about it. Not that I want to take another pill.

Meanwhile the orthopedist came in and said, after looking at my x-rays, that I have housemaid's knee, otherwise known as prepatellar bursitis. He said to ice it and it will eventually go away. I said I assumed I should rest, but surprisingly he said not necessarily. I walked Maddie today but that was all.

I have a little row of stitches on my forehead, I think about six. My local doctor is going to remove them on Tuesday. In the meantime a friend who is a nurse is changing the dressing for me.

It feels like I have a nail going into my head. The good news is that it (sort of) takes my mind off the election. The bad news is that it hurts like hell. Although it does feel better today than the day before so that is good. The election still hurts.

Tomorrow we have a signing at The Odyssey for the book "On Being Italian: A Story of Food, Family and Faith,"  to which I contributed about a dozen stories.

Someone who will remain anonymous told me that because of the way the bandage covers my forehead, I look a soldier wounded in the Revolutionary War.

I might either have to cut bangs or pull a hat down low. Or more likely just go as I am and assume people will understand...or look the other way.

Wednesday, November 9, 2016

Trickle down from Trump election surprise

At least someone believed in woman card
Way to get over being crushed by election results:

On way home after sleepover that followed election night party that was supposed to be a celebration but which instead turned into a funeral for our hopes and dreams, stop at farm stand to get apples. Get a phone call, sit in car talking, turn off engine briefly, go to turn it on and realize I kept the lights on and the car is dead.

Go back into farm stand, call AAA, and talk to owner's mother while waiting. Woman comes in and when owner's mother asks how she is, woman says she is terrible and can't believe what has happened to our country. Owner's mother says she doesn't trust any politicians and it is all in the hands of God. This election outcome is fine with her because it might make God come sooner.

She makes a good point about my battery. If it died that quickly (like our hopes and dreams) it is probably bad. I put that in my pipe (no marijuana even though it is legal and I could use something) and smoke it. She gives me a free apple.

Stop at Breezy Acres for coffee cake. Evelyn says one woman came in and said she would pray for Donald Trump to be a good president. Another said she was trying very hard to focus on her own life. I buy warm cranberry nut bread and go drink coffee and commiserate with a friend. Then...

Go to automotive place and learn I actually did need a new battery. Wait for battery. Get pep texts and have pep talk with son. Multiple group texts going on in which we try to sort this out. People are afraid. For the country and for certain rights. And let's not forget that horrible Mike Pence. But let's think on the bright side (still in texts) of the good we in Mass did by helping Democrat Maggie Hassan win her New Hampshire Senate seat.

Call dog sitter (Trump fan) and tell him of my whereabouts. How are you? I ask. "WONDERFUL," he says. I start to cry. Please don't gloat, I say. I say through sobs, I just can't stand the thought of that horrible man in the White House. And please tell your wife too. He says he will.

Meanwhile, I find my distraction in booking multiple rides for upcoming trips to Boston. I need spots looked at and spots removed, but the spot remover doctor doesn't have time to possibly biopsy other spots, so I need to make separate appointments.

For this Friday, book trip to Brigham Dermatology on Boylston Street in Chestnut Hill. "Do you have an escort or wheelchair, crutches or cane?" No I don't.

Next Tuesday, trip to Mohs (surgery) center at Faulkner Hospital. "No escort, wheelchair, crutches or cane?" Correct.

Next Wednesday, return trip home from 450 Brookline Ave. after 3 p.m. light therapy on my skin. Return trip home at 6 p.m. "No escort, wheelchair, crutches or cane?" Still the same.

And so on and so forth for appointments in December. Still, hopefully, with no escort, wheelchair, crutches or cane.

In between times, an overnight after the Mohs being arranged. I will either have two procedures or three. One will be on my right hand so I don't know what to say about writing or tennis.

Going to try to detox from political news.

Sunday, November 6, 2016

Tired but satisfied after going door-to-door in New Hampshire

View from Clinton/Kaine gathering place today
I'm glad I went to New Hampshire three times in the past few weeks to canvas for Hillary Clinton and Maggie Hassan (for Senate) and the other Democrats, but although I had planned to go back one more time, on Election Day, I think I'm going to call it a day.

It is tiring to jump in and out of cars, walk down long driveways, climb steps (some with no handrails, not my speciality), fend off dogs and knock on the doors of homes in this tightly contested state. The other times our group from Northampton (413forHRC) went to Keene to a fully operational office where they took good care of us by feeding us (and giving us coffee) before we went out and when we came back in. Today, with Keene being flooded by volunteers, we weren't really needed. So I went a longer distance (about an hour and a half drive) to Jaffrey, much more rural than Keene, with a couple of others from Northampton, where we had met as a group and paired, or tripled off into cars.

The people I drove with might have thought I was crazy because I kept saying I was worried about the food. I think I said that it's the reporter in me, always wanting to know where the free food is.

We were looking for an office but realized as we went along bumpy roads that we were going to a house. I didn't bring any food because I thought there would be some. (Am I whining? Sorry! I need to eat. I need coffee!) The house was beautiful. When we got into the rather chaotic kitchen I picked up a cookie and popped it into my mouth. My tongue screamed. It was a "feel the Bern" cookie with ginger and cayenne pepper in it.

I drove off with a nice local woman. She was definitely dedicated. She was having a procedure on her back tomorrow (in Boston) and would be working at the polls on Tuesday. We headed out with a list of about 20 houses on rural roads. The last two times I went up to the houses with someone else. But it was just me because her back was sore. I was a little nervous but I got the hang of it.

This was the second pass to the same houses in the get out the vote, or GOTV, operation that was so successful with Obama. You introduce yourself as a volunteer for their local Democratic office and confirm that they're committed to voting for Clinton and Hassan. If they are, you ask if they have a plan for Election Day and whether they know their polling place and give them some material. Then you write it up on your checklist. Volunteers will return again on Election Day to see if they need any help getting to the polls or have any questions.

At this late stage, I actually came across two people who still hadn't decided. At one of these houses, I talked to a youngish mother while she apologetically wiped the St. Bernard slobber off my black coat. Her two daughters came to the door. I gave her my spiel. (One is sane, the other not, Clinton started out working hard for women and families and continues to this day, she's smart, world leaders are afraid of Donald Trump and YOU SHOULD BE TOO...Well, not exactly the boldfaced words. Looking at one of the daughters (who would probably have something to say at the family dinner that night where the parents were going to make a decision), I said, pointedly, he is very mean to women.

That seemed to register. I also pointed out that the daughter and I were wearing the same color striped shirt. She smiled. You never know what will make a connection. The mother said she was leaning to Clinton. So maybe I swayed one of the two last undecided voters in the state.

By the time we were nearing the end of our route, it was 3:15, and I had had a little candy, a few nuts, and a banana. We stopped at a gas station/market and I got a sandwich. Back at the house, the people I had come with were not back yet. So I filled in my report and waited about 45 minutes. I probably finished earlier because I was with a local woman who knew her way around.

I saw a coffee pot and a tin of coffee and asked if it was possible to have a cup. (Was that rude? I don't know, but I was cold and tired and I really needed it.) Luckily the owner of the house said he was just thinking of making a pot. He ground some beans. The strong coffee that resulted never tasted so good as I looked out at the beautiful view.

Friday, October 28, 2016

Of not being born yesterday and a string of nightmares

In the department of...

1. Not being born yesterday. The driver Wednesday was Facetiming with his girlfriend while taking me to Boston. I asked him to stop and he said he was just looking at directions. While we were in the middle of the Mass Pike and I saw a woman's face. Whose lips were moving. Maybe she was giving him directions.

My nurse at the Kraft Blood Family Blood Donor Center said I should report him. But I wouldn't do it because he seemed to at least be a normal human being and it was his only job.

2. Learning something new. I couldn't think of the word for the uncomfortable feeling I have on the skin of what used to be my waist. The nice Dr. Savage said he has heard some patients say it feels like a band. I thought it was a sign of backtracking, but then Wednesday I talked to a different doctor who said it is actually a sign that the extracorporeal photopheresis is working on my graft vs. host of the skin: It has broken down the top layer of skin, and the "band" is the part underneath. He said some patients get a hernia but that doesn't seem to have happened to me. So far.

3. Reminding you what that is. A nurse puts a big needle in my arm and I lie as still as can be for three hours while my blood cycles through a machine that separates white cells, subjects them to a photosynthesizing agent, and gives them a zap of UVA light. This is a good explanation that I haven't used before. New machines have made it a little faster. The nurses remain kind and funny.

4. Dreams that reveal the trauma just beneath the surface.

(a) I dreamt that I was wrong in believing that after losing 12 teeth I was finished with the teeth-pulling. My dentist said no, that was the beginning, I would need an iron plate put in my mouth or the rest would fall out.

(b) I picked at one of the spots on my hand and the whole top layer of skin came off. I tried to put it back on but it stayed like a flap.

(c) I chugged a bottle of delicious juice and after I was done was afraid it was grapefruit juice. (Grapefruit interacts with some of my meds.)

(d) My car kept stalling while I was driving it into a garage. I was afraid I was going to hold up all the cars behind me. I finally got it to go and went straight down to a repair area. I guess this is the most positive of all because I called the repairmen to get it fixed so I could get on the road again.

All of this vanishes when I am at the Holyoke Canoe Club. I wish I could take a piece of the court and ride it around like a magic carpet. I love how we are so crazy. On Wednesday we played outside wearing coats and jackets. Our coach, George, is the tall guy next to me. Char, the doctor making a funny face at the other end, calls him King George. We have been a much bigger group. These are the diehards who will play until the snow falls.

Wednesday, October 26, 2016

A week's worth of wanderings

Sometimes I write a few posts in a week and then I forget and realized I haven't done any. I was going to put an exclamation point but recently I read a quote attributed to Mark Twain about why NOT to use this punctuation: "An exclamation point is like laughing at your own joke." I don't usually use it anyway though I do allow myself maybe one per email or blog post, but from here on in, maybe no more.

Last Wednesday: Still playing tennis outside. Backhand slice really working. Ran for two in a row and got both ! (Oops one snuck in.) George asked how did I do it and I said I had a good teacher. We always like to make him smile.

Had the time to stay longer because ECP , the light therapy for my blood, now every three weeks, but was still a little sore from my fall so decided not to push it. Needed to take a nap afterwards so as to have the energy for the debate watch party hosted by New England Public Radio at New City Brewery.  With the Holyoke Hummus Company truck serving food, several big screen TVs, beer, and like-minded people, it was much better than watching it alone.

Friday: I drove to an early morning appointment in Boston to have a bothersome spot looked at. It's been there for months – an irritated circle on my ankle – and nobody seemed to know what it was. Taking it upon myself to diagnose with that foolproof tool, searching the internet, I decided it must be ringworm. 

After this occurred to me right before bed, I looked it up and found a lot of disgusting photos and learned that it is a fungal infection. I emailed Melissa that I had a self-diagnosis of the mystery spot. She forwarded it to one of my dermatologists, Dr. Lin, who said it was not a fungus and told me to have it re-checked. I ended up with my fifth dermatologist in the practice. She cleaned it up and gave me a prescription antibiotic ointment and said she could biopsy it for a possible "squam" (shorthand for squamous cell) or we could wait to see if it healed. Since I was then heading to Connecticut for a weekend with friends and knew we would be walking, I skipped the biopsy and made an appointment for three weeks from then.

I cleverly left Boston early enough to get through rush hour traffic. But I not so cleverly forgot about Hartford traffic. It started raining, which made it even worse. I arrived in New Milford in the dark, having spent more than four hours in the car and listened to a variation of the same NPR stories multiple times. A glass of wine never tasted so good when I got to the Candlewood Lake house where we've been going on and off since high school.

It was great to see my high school friends for the weekend. It rained for a good part of the time, but that didn't matter. We always have fun together, and we did most of what we would have done anyway. (Walking, talking, shopping, eating...)

Two of those friends have fitbits. I don't think I need one because I'm hyper enough anyway. I was surprised to learn, though, that my iPhone has been keeping track of me. I saw that on one of those days I did more than 11,000 steps, for four-plus miles. The walk in the rain was nice in its own way, but when the sun came out and we walked off our regular path it was especially beautiful. And interesting as well because of some of the things we discovered, such as this tree with branches turned into hangers. 

When it was all over and I got back home, I have to admit I was in a bit of a funk. The house was empty and I missed my kids. I sold Joe's old furniture and started to cry. I realized some of it came from being tired, and also from the natural letdown that happens when you've completed something you were looking forward to. Yesterday I started to perk up. 

Monday, October 17, 2016

Losing my hair again (in a dream)

I dreamt I had a tumor on my neck and would have to have my whole head shaved.

I didn't understand because the tumor wasn't near my hair. Someone said it would get in the way. Told me I had a nice head and shouldn't worry. I said it took me a long time to grow this hair back.

A nurse followed me around and said she was ready to take me. I said I had to say goodbye to my children first.

I went to work and cleaned off my desk. I scooped up bags of pretzels and old fruit. Some of the bananas looked OK so I thought I could leave them. But I threw them away. Scattered dollar bills. Cleaned it all up.

Found the ladies' room. A lot of women in there. One on a couch. I said at work I used to go out back and fall asleep for 15 minutes on a brown couch. No matter how many people were talking.

Someone asked did I have the printout that showed how much the newspaper was giving us in a distribution from our retirement fund. I said it was shoved in a desk somewhere and I hadn't even looked at it. I told Joe I thought he had taken it into the house but he couldn't remember. I found it in a drawer in my house.

I was getting $30,000 (ha)! The company wasn't happy about the way that turned out.

Joe was getting $30,000 too.

He was a little kid and wasn't keeping his clothes clean. A white sweater with a smudge. A suitcase full of dirty clothes.

I asked my mother what to do. Said I couldn't always do things for him.

I decided to wash some clothes and take the others to the dry cleaners. I would have him pay the dry-cleaning bill.

My mother thought it was a good compromise.

Sunday, October 16, 2016

Falling flat on my face, getting back up

With Connie Britton at Hillary Clinton Keene office
If you do a good thing for yourself followed by something that is not so good, do they cancel each other out?

Of since the bad is second, does that take precedence?

Or what if you finish with a good? Then you might end up ahead.

OK, so...During last Sunday's second presidential debate, I almost immediately texted to my friends, regarding Donald Trump's lurking behind Hillary Clinton, "OMG, he's going to hit her." I half-joked that I would take half an Ativan but it had gotten too late and I knew I might be sleepy the next day.

The next evening, Monday, I wasn't that up to it, but I went to yoga. When I got back I was still anxious about several things, and, if you can have a fond memory of being in the hospital, I had one about my late nurse friend Vytas coming into my room and giving me a whole milligram straight into my catheter. He would stand beside me for a few minutes, with that little smile of his, and watch me thankfully drift away. I thought what the heck and popped the whole thing. I don't use it very much, which of course is good , but it therefore has a greater effect on me than when I was taking it more frequently.

I didn't think much of it. When it was time for me to take Maddie out before bed, I did my usual thing, turning on two lights. Sort of my usual thing because I usually also take the flashlight. When we went out I called to her, "Come on Maddie, do your business." And looking out at her and not at the step, I missed it and crashed down face first onto the walkway. Glasses flying, I landed on my nose. My knee and chest also took a hit. She sat there. I lay there. My nose bled.

Getting myself up, I went into the house and called my good friend Claudia. I don't remember the time, but it was after 10. Luckily she was with Katie's friend Kristen, a newly minted physician's assistant, and they came over together to look me over. Seeing nothing major, they packed me in ice and put me to bed.

Over the next few days I was increasingly sore. My nose turned black and blue enough so that I thought it might be broken. On Friday I had an X-ray and since I didn't get a call, I assume that it is fine. The first few nights it was so swollen that I had trouble breathing. I took some ibuprofen for a few days after getting permission from Melissa. (Good for reducing swelling and pain, bad for kidneys.)

Mostly I was embarrassed and annoyed with myself and generally putting myself down. I was also upset that I missed one of the last weeks of Wednesday tennis.

But, feeling between 75 to 80 percent today (thinking of my father who liked to talk about his health in percentages), I went on my second canvassing trip to Keene, NH. I actually went to Marlborough, NH, but we left from the Keene office. The shift didn't start until noon, but we got there to see Connie Britton, who is campaigning in New Hampshire for Hillary Clinton, Maggie Hassan and the other Democrats.

I loved Friday Night Lights and was thrilled to see her. "You guys are democracy in action," she said to the assembled volunteers, mostly all of us on this shift from Massachusetts, before leading us in the ultimate Coach Taylor pep talk, "Clear eyes, full hearts, can't lose."

This week marks the beginning of the GOTV (Get Out the Vote) part of the campaign, and it is interesting to see how they start this effort that was such a successful part of the Obama campaign. I went with two other people to houses identified as having either Democratic or unaffiliated voters, asked if the Dems were all set or if they needed any information, and had some interested conversations with the ones who said they had not yet decided.

Then it was back to the office, where, same as last week, they had some yummy food. The reporter in me still appreciates free food, and the canvasser in me was hungry.