Wednesday, January 18, 2017

The resistance, the ankle and the dog story

The Gordon group
I thought the graft on my ankle was healing well, but now I'm not so sure.

It's been a week with just some twinges, but I'm concerned it's hurting more and not less. I called the Mohs office in Boston and left a message but did not hear back. I did talk to Melissa and sent her and my regular dermatologist a gross photo. I hope the spot isn't infected.

I haven't done anything to irritate it. I walked Maddie just a short way (have dog, must walk) and since Jim and Jane are away, that's what I need to do. Last night I took her on the leash in the dark because I don't like how she runs off into the woods behind my house. It was slippery so I decided it was not a good idea and turned back. I let her off near my door and she dashed into the woods and disappeared. So there I was in the rain, blowing the whistle that is supposed to make her come back (per trainer) and jiggling a can of dog biscuits. Finally she trotted out. Reminiscent of the panic that sets in when you "lose" a child in a store and the child turns up behind you.

Michael Gordon photo
Yesterday I finished a story for the AKC's Family Dog magazine on the ways in which the kids and I helped Maddie recover from her car accident and the way she helped me, and by extension the family, heal after my relapse, and how she continues to work her dog magic (except when disappearing).

I enjoyed working with Michael Gordon, my former colleague and so-called cousin, who took the photos. It's like being back at work (without the stress) and the second time we have done freelance work together.

I haven't gone to yoga or done any exercise, per doctor's orders, but I did go to a restorative yoga class at Erin's tonight. It is no way stresses anything; this is not the textbook description but it is basically a lot of lying around. I hope the relaxation will extend through the inauguration. I don't plan to look at or listen to it but the fact of it is unavoidable.

A friend said that I've been through so much I shouldn't get myself sick about it but since I already am, the only thing to do is to try to be active in the opposition, or, as it is being called, the resistance. It is hard not to get sick all over again when reading about hacking, Russians, the ACA, and on and on.

I googled Donald Trump resistance just to see what came up, and sure enough, there is a page, the DJT Resistance, showing the logos of Trump-supporting companies to boycott. And of course a Facebook page.

On Sunday I enjoyed having brunch with like-minded women in an action group. We discussed the marches and other plans and ideas. I had briefly thought of going to Washington for the Women's March but changed my focus to Boston.

When I jokingly said I might need a wheelchair, two who are going said no problem!

Well I'm not going to do that. I asked Melissa today if she thought I could go. She said that since it will only be four days until the date I can exercise (tennis here I come), I should be able to go,  but maybe not for the whole thing. That was actually an idea that I had had. It could work because we plan to park at Diane and David's and so I could just hop on the T early and go back and wait for the others.

That is, of course, pending cooperation from my ankle. Toes crossed.

Wednesday, January 11, 2017

Doing a three-way for the first time

Something to cheer me up
I didn't know I could do a three-way until the nice lady told me last week.

The suspense is killing you, right?

Every time I have had to go between two locations in Boston, unless I drive myself, I take rides provided by MART to and from Boston and then The Ride in and around the city. Sometimes this has not worked out well.

Today's three-way with one MART driver went like this: South Hadley to Faulkner Hospital in Jamaica Plain to get my stitches removed and the spot on my ankle evaluated, then the same driver to Dana-Farber for my ECP (the blood behavior modification) and then three hours later, the same company back home.

The stitches on my stomach came out fine. At first I didn't want to look at the graft on my ankle but ultimately I did because I will be living with it. It looks like a crater about the size of a half dollar, with black dissolvable stitches around the circumference. Not pretty. I'm supposed to stay off it for another two weeks. If I don't, the graft will fall out.

This makes me unhappy. I took Maddie for a little walk yesterday but had the intuition that I shouldn't go far. It was about a half an hour, which is what the surgeon today told me my limit should be. And no walking to exercise. Or yoga and of course not tennis.

The world and our country at this perilous time have way worse problems than an antsy person with a hole in her ankle who is unhappy about not being able to exercise. But it is my outlet and my routine and without it I feel at best grumpy and at worst depressed.

I bought a little something extra to cheer myself up when I stopped at the dining area on the third floor at the Yawkey Center before going to ECP.  Not the best thing to do when you're not exercising, but it was only a little something.

I like to think of my father saying, "This too shall pass."

Saturday, January 7, 2017

Spot is gone; pain and itching are on

Post-surgical fashion statement
Today I am focusing my investigative journalism efforts on what to do if your stitches are itchy.

The fact that the itchiness is a sign of healing does not make it easier to stand. On Wednesday and Thursday after my Mohs surgery, pain was my biggest problem. Now I have less pain although still some at the area on my ankle where the surgeon removed the squamous cell cancer and put on a skin graft to fill the hole in. But the area on my stomach where they took the skin for the graft is itching like CRAZY. Now I understand why they put an ice pack in with the materials needed to change the dressing. The ice pack helps somewhat. I took some Benadryl last night and might take some more.

The ice pack fit into my sweatshirt pocket. I wore it in there for a while because it is right over the spot. Then it lost its cold and I put it in the freezer to see if it would reactivate, but I'm not sure it will work. Meanwhile I have taken a larger freezer pack and tied it around my waist with my scarf. It is hard to concentrate on anything else.

The fashion statement might equal the one I made when wearing one of David's Teva sandals home because my boot didn't fit over the bandage on my ankle. Diane lent me a pair of socks because my feet were cold in the ones I had brought and also because it was hard to fit mine over the bandage. Joe came home to have pizza with me last night, make dinner tonight and help take care of Maddie. It takes a village.

When the nurse at the Mohs center at Faulkner Hospital took my blood pressure on Wednesday, it was 170-something over 90-something. She said it might be a good idea for me to take something. I agreed it was as good a time as any for me to take one of the Ativan I had brought. So while they were getting the room ready, that is what I did.

I have had at least 10 of these surgeries and never got so anxious. It was the thing about the larger size and the graft.

It took a while for them to draw their shapes on me: one on the ankle, one on my stomach, and one on my left hand. Dr. Schmults, who is director of the Mohs Center and who is really nice, said the one on my left hand is too small to treat. She recommended that I treat that and the backs of both of my hands with Effudex, a chemotherapy cream, saying the only way for it to work is to wrap my hands in Saran wrap after I put the cream on, every night for three weeks.

Since I have mentioned this frequently lately, I probably should repeat what Mohs surgery is all about. According to the definition on the Faulkner Hospital website: Mohs surgery, a form of skin cancer removal in which the borders are examined by the surgeon microscopically while the patient waits, boasts a remarkable 99% cure rate for most basal and squamous cell skin cancers as well as a high cure rate for other rare forms of skin cancer.  

A doctor, Frederick Mohs, developed it in the 1930s. If the margins are not clear upon first examination, they take a little more, examine again, and so on until it is all gone. I asked once and learned that sometimes it can take quite a few times to get it all. Only once did I need a second pass. This one came off, as did all but one, on the first try.

During the prep work, I talked to one of the residents. He was impressed by my four bone marrow transplants. They always ask, four? We talked about it some more while he was outlining the spot for the graft. Dr. Schmults suggested a little change in the shape. I had an odd feeling of being the material for a coloring project. I asked if he could still concentrate while I talked, and he said yes, he could. Classical music filtered in while they worked. My appointment was at 1 and I was done at about 5. Some of this was waiting, some was drawing on me, some was getting numbed up with a lot of needles, and some was the actual procedure.

Diane picked me up. I had a nice dinner with her and David and enjoyed what Diane knew would be the best medicine for me, a rich piece of chocolate cake.

On my drive in, I had posted on Facebook about feeling anxious. I appreciated the support that people gave me. As we all know, FB has its downsides, but it is great when you need a virtual helping hand. It was also helpful when, at 1:38 a.m., I wrote that the Tylenol and codeine that Dr. Schmults had prescribed wasn't working. The pain was bringing tears to my eyes. I needed to take an oxycodone, but I didn't want to wake my sister to get something for me to eat and I didn't know if the clementine and potato chips I had in my room were adequate. Somebody is always up. My friend Nan Imbesi replied that my snack should be substantial enough. So I had my snack and my medicine and drifted back to sleep.

I haven't complained about my drivers recently. That's because I have had some good luck lately. I had the same nice driver in and back. When I mentioned to him, as I have to some others, that many of the other drivers have been, um, less than polite, he said he had heard a lot of complaints. We agreed that it doesn't make too much sense because it doesn't take much to be nice, especially when you are driving people to medical appointments.

I go back Wednesday to get the stitches removed. That will be a relief.

Sunday, January 1, 2017

Good show, good run, good visit to my hometown

Scene from "Falsettos" on Broadway, with Andrew Rannells in hospital bed
Tradition, tradition...

Facebook was kind enough to send me a memory from the New York visit that Katie and I had two years ago when we saw the wonderful and bubbly "On the Town." It started almost the same way as our trip earlier this week:

"Drove in on Saturday and got a spot good for the two days we needed. Happy feeling." Just replace Saturday with Monday and you get the same thing.

This year's winter pick, "Falsettos," was a different kind of show. A comedy and a drama at once, it is a revival of a 1992 play by William Finn and James Lapine, the creators of Spelling Bee, which originated in Great Barrington.

The play about two gay Jewish men and their extended family starts out at a fast, funny clip, then takes a turn in the second act as one gets the mysterious illness afflicting gay men at the time of the second act, 1981. Writing in the New York Times, Charles Isherwood called it "exhilarating and devastating." You could hear a lot of laughter at the beginning and a lot of sniffling at the end.

I would recommend seeing it but the limited run ends in a week. Check out this feature in Playbill.com to hear a medley. It was interesting to see Andrew Rannells, who we saw as the Elder Price in The Book of Mormon, in the more nuanced role of Whizzer to Christian Borle's Marvin.

Nice place for a run
It was our second year staying at an Airbnb in the Lower East Side. With its scattering of overgrown community gardens, it is a different world. Katie drove in all the way, and, as an honorary New Yorker, successfully turned on her parking radar and found a spot in walking distance of our place on 9th street off Avenue C.

Due to street cleaning from 11 a.m. to 12:30 on Tuesday, someone would have to sit in the car and move out for the street cleaner, a New York routine in which I delight. Then the spot would be "good for tomorrow," meaning that we wouldn't have to sit in it or move it on Wednesday before our checkout.

Monday night after unpacking, we wandered around in some of my old stomping grounds in the West Village, ate dinner at a tapas restaurant and found dessert at a nearby patisserie. Being an old(er) person, the next day I woke up early and went for a run. Our place was conveniently located across the street from 9th Street Espresso, so I got up and got a coffee before heading the couple of blocks over to East River Park.

After doing the hilly Hot Chocolate 5K last month, I had an easy time jogging under the Williamsburg Bridge about three miles on the flat pathway with the beautiful views of the river. I feel so much better about everything when I can run without pain.

I made it to the car on time and got so engrossed in talking to a friend on the phone that I didn't notice that the street cleaner had pulled up behind me. The driver started honking. The idea is to pull out, wait for the street cleaner to pass, and then back in. But a car had pulled even with me and I couldn't get back in. Parking panic ensued. I zoomed around the block and got back in the space. But you still have to wait the whole time, so Katie came and took my place while I took a shower.

We had what my father called "free time" before meeting for dinner and going to the show. We were a little disappointed afterwards that Rannells didn't come to the stage door with some of the other performers, but we got over it with cheesecake afterwards.

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, Vice.com. 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.

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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.