Friday, April 18, 2014

Cancer sucks

Mementos from my cancer experience are scattered throughout my bedroom: a box that has the word breathe on it, a tiny tennis ball with a smiley face, a blue glass ball, a wind-up horse reminding me to laugh about the pony scene from "Seinfeld," a windup car reminding me to keep the car on the road, and three angels, one of them holding a lantern to light the way. (Do Jews believe in angels? Sure, why not?)

The Ronni bear, one of those build-a-bears given to me by my pals from my mixed doubles team, sits on a stool. She wears a tennis skirt and tennis shoes and holds a racquet. My name is written on her shirt. Of course I still have the patchwork quilt signed by friends from work.

And, in my jewelry box, a button that one of the attendants gave me in the hospital. It says Cancer Sucks.

Not that any of us need to be reminded, but there are times that it really jumps out at you. One of those times was last night at calling hours for Peter Boisvert (Pete), husband of our tennis teacher Annie. He died too young on Sunday of multiple myeloma, a cancer in which plasma cells grow out of control to crowd out normal blood-forming cells.

It is one of three blood cancers, along with lymphoma and leukemia (which I had). He also went to Dana-Farber.

Some people may know of it because that's what NBC news anchor Tom Brokaw has. It can be treated but not cured.

You heard people saying at the calling hours last night that no one could have fought harder than Pete. Along with a friend, he would get on his bike and ride 100 miles at a time. He fought it for about 10 years, his struggle paralleling mine. Annie and I often traded updates.

The tennis community was out last night in full force. Everyone likes Annie for her talent and sense of humor. Some of us take our sport too seriously, and we need reminders to laugh at ourselves. One time Annie walked by a court where I was playing, turned her head and shouted, "Gordon, what's with that backhand?"

People said that Pete was very funny too. He was incredibly handsome, talented in many ways, and, according to his obituary, kind, gentle and unpretentious.

Their beautiful daughter, about to go to med school, was there last night, saying he had seemed OK for so long that she just couldn't believe it.

Cancer really does suck.

Monday, April 14, 2014

Lucky to be alive

In yesterday's New York Times, oncology nurse Theresa Brown wrote about a young woman dying of a fungal infection (like I had) after receiving a stem cell transplant from a matched donor to treat her cancer (like I did). (Providing the Balm of Truth)

The patient had been taking immune suppressants to keep the donated cells from attacking her own body; the problem was that patients like her (and me) are susceptible to infections that wouldn't bother healthy people.

Brown wrote about the family members who couldn't believe they were losing their loved one and about her own attempts to help them in their struggle to accept that nothing more could be done. She also wrote that roughly 30 percent of patients are dead within a year of such stem cell transplants. That figure seems a little high, but still, it is a stark reminder of what could have been, of what almost was and of how lucky I am to be alive.

I am continually grateful for the brilliant doctors at the Dana-Farber Cancer Institute and for my donor, Denise. I am grateful for the research that has brought us so far. I am saddened by the story of this young woman but hopeful that more and more outcomes will be happy.

That said, I wish all my Jewish friends (and family) a good Passover and wish all a happy spring!

Tuesday, April 8, 2014

A day in New York

With Donna in New York
Normally I stay overnight when I go to New York, but it was easy – just a hop, skip and a jump – to go with Donna for the day on Sunday to see a matinee of "The Most Happy Fella."

I drove to Longmeadow, then Donna drove us to Fairfield. We parked at Ben and Meghan's and then took the Metro North train to Grand Central.

We had a couple of hours to do some free stuff before the show. First was just marveling at the beauty of Grand Central. On our walk across town and up to 55th Street where the City Center theater is, it was fun to see a familiar landscape through the eyes of someone new to it. For example, Donna admired a lamp post at Bryant Park, where crocuses poked out of the ground. We paused to take a photo where otherwise I would have passed right by.

We did a quick walk through the New York Public Library, giving a nod to the lions Patience and Fortitude at the entrance. The library's gem is the Rose Main Reading Room, where tables and books occupy a majestic space measuring the length of two city blocks. Katie and I have gone there to read under the mural of blue skies and billowing clouds.

The play's the thing, of course, and it was fantastic, a wonderful welcome to spring.

My friend Pam, who had met us there, walked us back to Grand Central, and then we reversed our steps. We stayed long enough in Fairfield to have a quick bite to eat and for me to worry over Webster, who was sick. I texted Ben later that night to find out how the puppy was doing, noting to myself that my high level of anxiety did not bode well for when I have grandchildren.

I was relieved to get this response: "Basically acting like his normal annoying self."

Friday, April 4, 2014

Retracing my steps

On an early spring day 11 years ago, my good friend Donna and I went to New York to spend a day with my mother and attend a production in the Encores series at New York's City Center.

We walked through Central Park on this beautiful day. Yet there was a cloud over my head. I was waiting to get results from a repeat of a suspicious blood test in which all my counts were low. The doctor hadn't hinted at a diagnosis. But, probably because I had been unusually tired, I was afraid I had leukemia.

I kept saying, "I can't possibly have leukemia."

Well, of course, I did.

I was admitted to the hospital on April 9, 2003, for my first round of chemotherapy.

My mood is totally different as I prepare to go with Donna tomorrow to see a show at the same place in the same series. Encores brings back old American musicals for five days in which the actors perform book in hand. Some of these productions have gone on to Broadway.

We're seeing "The Most Happy Fella," the Frank Loesser musical first performed in 1956. In his review in today's New York Times, Ben Brantley called it the perfect play for ushering in the spring thaw, saying, "'The Most Happy Fella is all about spring as a state of both mind and body, about when people find themselves stepping with unaccustomed alacrity, and the possibility looms that there really might be new life in the frozen ground."

Instead of worrying like a did the last time I went, I expect to be humming.

But Donna beware: I can't keep a tune.

Wednesday, April 2, 2014

The daily dog

When I came back from vacation a while back after leaving Maddie with Joe, he began a sentence the way no one should: "I don't want to upset you, but..."

The upsetting thing turned out to be that Maddie had let him sleep until 11 a.m., while she wakes me up regularly at 6:30 a.m. or 7 at the latest. Sometimes I need to be up that early anyway, but on the days I would like to sleep a little, I shout, "Go lie down," to no avail because then she puts her face right next to mine on the edge of the bed.

The vet says she has me trained.

She can hear when I have taken the last bite of my cereal, and she perks up just so I won't forget to give her the last bit of milk in her bowl.

After we eat breakfast, she conks out on the couch. Sometimes I fall asleep while sitting up alternating between "Morning Joe" and "The Today Show."

After her morning nap, Maddie migrates to the patch of sun in the living room.

Sometimes I follow her in there because the light is so nice.

Throughout the rest of the day, she follows me around like a dog.

The vet wants her to lose a little weight, but it's hard for me to resist tossing her a piece of apple when I slice it on the cutting board. At the sound of the knife she runs over and gives me that starvation look. (The vet says a carrot is less fattening.)

Some nights around bed time, she puts herself to bed on the big LL Bean pillow in my room. After she comes down to go out for the last time, I ask, "Do you want to go up?" and she grabs a toy to take with her. Often she hoards them in my room, and I have to bring one downstairs. I noticed last night that she picked up the long skinny orange daschund but dropped it in favor of a yellow floppy-eared dog. The orange toy was obviously not cuddly enough.

I am writing all this because I was reminded of the benefits of dog therapy when a woman who I was tutoring in reading said that her doctor had recommended a therapy dog, but her landlord wouldn't allow it.

She said she needs the dog to fight off depression and have a reason for getting out of bed. Someone whose dog had had a litter actually offered her a poodle, but she couldn't take it. She is trying to move, and I hope she finds a more dog-friendly place soon.

Monday, March 31, 2014

Writing can be a way of giving back

When the phone rang last week and I checked the caller ID, my heart automatically skipped a beat.

It read 617-632-3000, the Dana-Farber phone number. It was an instinctive nervous reaction because that’s the number that rings when I am waiting for important test results.

It was Melissa Cochran, my nurse practitioner. Only half joking, I asked what was wrong and whether they had dug up something bad from my last test results.

But it was something different. She said the doctors in the hematology program are writing an e-newsletter letting other hospitals and doctors know of their work. It is in conjunction with the marketing department so that doctors elsewhere might refer patients to Dana-Farber. The next installment is on treating a complicated case, and they wanted to write about me. After four bone marrow transplants and a near-death reaction to my last transplant, I would say I qualify as complicated. In addition to a clinical piece that they would write, they wanted to know if I would do a first-person piece on the theme of perseverance.

I have tried to give back to Dana-Farber in whatever ways I can. I participated in a walk to raise money for The Jimmy Fund; I was a virtual walker because I was sick at the time, but the money raised was good anyway. Once I spoke at a Jimmy Fund dinner, which was totally not up my alley due to stage fright, but I did it anyway. I was interviewed on the weei nesn jimmy fund radio-telethon, and, finally, I watched a hole at a Jimmy Fund golf tournament.

(When I was asked to watch a hole, I had no idea what that meant, but it turned out I was there to validate a hole-in-one for which the prize was a car. Mostly I sat under a tree and enjoyed the day.)

Writing the piece was an honor and a challenge. I wrote it once, sent it in, and then changed my mind several times. I wondered if Melissa thought I was crazy, but she was fine with the changes as long as I got it in by last Friday.

In an interesting role reversal, I asked Ben to read the final draft and make suggestions. It doesn’t seem so long ago that I was helping him with school papers.

They are going to send me a link, which I will post here. Part of my theme was the doctors and nurses who helped me through it and also the memory of my father, whose motto was “You have to keep moving,” which I tried to emulate on my roller coaster ride.

I needed to do some research to get the spelling of last names correct. It broke my heart to look up the obituary for my nurse friend Vytas Durickas, who died in 2010f at age 57. Up popped the smiling face that helped me through many difficult spots.

But then it was nice speaking to my tough-love nurse friend Myra Muir. I called her at my old floor, 6A, to get her last name. She asked how the kids are and said to come visit sometime soon. I've gone up there before, and I think they like seeing the transformation from sick patients to healthy people.

Her words of wisdom from five years ago are ingrained in my memory. When I asked her after my second relapse how I could go through it again, she said, "You can have your pity party for a day, and then you'll put your boxing gloves on."

Thursday, March 27, 2014

Bandaids fall off; blueberries roll out

I have spent an inordinate amount of time fussing with the bandaid on my neck.

Not adhesive enough and it falls off. Too adhesive and it irritates my skin.

Actually the burning, stinging and itching made me think it was not healing properly. Because I believe a good night's sleep is all important, last night I took an oxycodone and a Benadryl. This morning, I felt partly comatose, but I woke up enough to go to a good tennis clinic at 1 p.m. George said I am really bending my knees. I said I've been practicing on the dog, getting down at her level instead of bending over to pet her.

I called the surgeon's office to check in about the discomfort on my neck (my wrist is OK), and the nurse said that sometimes the skin in that area gets inflamed by the adhesive. Tomorrow I need to go out and find something called Tefla, which is non-stick gauze.

The two areas need to be covered for at least three weeks. Contrary to the way we usually let a cut heal, these are not supposed to form a scab because they heal from the inside out.

Today, meanwhile, I have had a bad case of butterfingers. I can't blame it on Mohs surgery, that's for sure. This morning I dropped a raw egg on the floor, much to the delight of Maddie, who lapped it up in no time.

This evening, a whole container of blueberries flew out of the refrigerator, with those precious (so expensive!) blues rolling all over the floor. I swept most of them up, but I left a few for Maddie. At least someone will get her antioxidants.

It was a good day to be a dog.