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.