Wednesday, April 30, 2014

Heading to Brandeis for 'Bar/Bat Mitzvah'

I am heading to the Boston area this afternoon, not for a medical appointment as usual, but more happily to see Katie in her last ever a cappella concert at Brandeis when her group, Proscenium, celebrates 13 years with its Bar/Bat Mitzvah.

I have seen her in a lot of shows and am always all smiles, but for some reason Proscenium never fails to bring tears to my eyes. I had shed a different kind of tears when the toothache from hell caused me to miss the last performance, crying my eyes out while lying on the couch in the most terrible pain. (The tooth is gone, as are ten others, but that is another story.)

So now I am doubly glad to be able to go. These wonderful singers and beautiful people have been such a wonderful part of her wonderful Brandeis experience, which I cannot believe is about to end!

It has been a rainy couple of days, so I am glad that I did my mini-run in between showers on Monday. I added another loop around the lower lake, making it probably almost two miles from start to finish. I would rather go around the more scenic upper lake, but since no tripping is allowed, I save that one for dog walks when I can keep an eye out for roots and other obstacles.

Sunday, April 27, 2014

Writing more, and feeling good about it

Five years ago, I was so wobbly of mind and body that I wondered if I would ever be able to do anything again.

I've written a lot about the physical aspects of coming back, but not so much the work-related.

I wanted to keep writing, but I was out of a job, my clips were old, and my resume needed freshing up. Just working on the resume was an ordeal, as was trying to figure out how to refashion myself as a freelancer. My friend at Dana-Farber, Saul Wisnia, gave me the opportunity to write a piece for Dana-Farber's "Paths of Progress." He connected me with a freelancer who had worked at Dana-Farber, and she told me to reach out to all my contacts. It seemed an overwhelming task, but at least I had one new clip.

I got one story to write, and then another and another. I still didn't have a full plate and wanted to do more with my time, so I started volunteering at The Literacy Project teaching ESL to adults. Just recently I felt like I could do more (it may sound like I play tennis all the time, but I really don't) so I started researching other volunteer opportunities.

Around that time, I was asked to fill in temporarily in Mount Holyoke's communications department, writing three stories each week for the news and events section on their website. This was right up my alley! I have been doing it for a few weeks; I get the assignments on Monday and they are due on Thursday.

It has been going really well, and it feels good to have gotten a mental tuneup. I am not used to that intensity of work, so the first week it ran through my mind at night. But I got it back quickly. When I got my first newspaper job at the old Transcript-Telegram, the deadline pressure made me feel sick. But I got used to it, and now the ability to write fast and focused is serving me well.

Friday, April 25, 2014

First blood cancer support group a success

Last night I went to the first meeting of the new Western New England Blood Cancer Support Group organized by the Leukemia and Lymphoma Society, and although I can't even sketch out the details due to confidentiality, I can say that I already found support in hearing stories that were even more crazy and mixed up than mine, the kind you can only hear from people with blood cancers.

Out in the world you don't hear much about blood cancers, and the only kindred spirits I know are my fellow leukemia bloggers, PJ and Anne.

The group is for family members, friends, survivors and patients. (Some people don't like the word "patients" because whether you have gone through it or are going through it, you are a survivor, but it serves a purpose of showing what stage of the process people are in.)

I was able to offer support, giving some tips on this and that and serving in my role as a Dana-Farber cheerleader, assuring people that the geniuses out there, luckily so close to home, will figure it out if anyone can.

I am getting the name of a patient about to get her third bone marrow transplant out in Minnesota. Naturally she is scared about it, and I am living proof that it can work. Also, not that I don't think of my donor, Denise, all the time, but I heard some stories that made me more thankful for her, if that is possible.

Being Jewish (is this a Jewish thing, or maybe a reporter's thing?) I had a bisl of food before so that I shouldn't starve in the dinner time meeting, but there was a nice spread of food.

I got home just in time to see the exciting overtime in the Bruins game, in which they beat the Red Wings 3-2, and then I stayed up to watch the interviews. Sorry to state the obvious, but there are real people under those helmets. I like actually seeing their faces.

Too wound up to go to sleep, I stayed up and watched a bit of The Tonight Show with Jimmy Fallon and got my first look at his dancing Panda. I also saw Aerosmith's Steven Tyler sing the message on the answering machine of a woman whose name was picked out of a hat. Called up to the stage, she giggled and smiled. Really fun.

The support group is facilitated by oncology professionals including Dr. Jay Burton of Springfield Medical Associates, a fellow AML survivor. More information is available by emailing Meetings are scheduled for the fourth Thursday of the month at St. John's Church Parish Center in Agawam.

Wednesday, April 23, 2014

Wondering about soaring drug costs

The problem of soaring drug costs always comes with the question: Does research and development really cost that much?

Many of us are lucky to have insurance that makes our medicine affordable. We don't have to choose between medicine and food or rent.

I don't take as many pills as I did in the early days post-transplant, but I still take a ton: almost 20 a day.

I thought about this when I was scanning the drug summary sent to me by my prescription plan, which thankfully covers most of my costs. Down the list I go. A couple cost under $10, one costs $251.94, and another $665.82.

Then I get to the dreaded Exjade, the five pills daily dissolved in water and chugged on an empty stomach, resulting in 30 minutes of nausea while it does its job of scurrying down to my liver, bonding with the harmful ferritin resulting from iron overload and sending it out of my system.

The true cost: $6,779.68 for a 30-day supply.

I said to myself, "You have got to be kidding me!"

I have been taking it for a long time, but I guess I didn't look at the price.

I dropped one on the floor the other day and threw it out, but I guess I should have thought twice.

When I think of skipping a day, I usually make myself take it by focusing on the good it is doing me. This iron overload can end up making you really sick. My ability to afford it is another reason to appreciate it even more.

Monday, April 21, 2014

Memories of my parents

When I was feeling my most intense grief after the death of my first parent – my father – and my editor Marie Grady said to me at work, "They're always with you," I just couldn't believe it.

As the years go by you realize it is of course true, although it is also true that it's never the same.  If we are lucky enough to have good memories, we feel our parents'  presence and we also miss them most at  holidays. A friend said it to me yesterday about Easter. It washed over me at Passover.

A piece on the Lives page of yesterday's New York Times rang true. The author wrote that in the silverware her mother gave her, she saw her mother's hopes and dreams for her future.

My silverware has stayed shiny, covered up in its special drawer by the felt that my mother placed over it. Diane and I have both added some of hers. As she was dying, she said, "Don't give away my silver." When I run out of regular tablespoons, I like to take one from the drawer. I am eating out of a silver spoon, I say to myself. I always put it back and cover it up carefully.

I think of how I channel my mother. For Passover, I put a circle pin on my jacket. "Who do I look like?" I said to Katie and Joe. "Your mother."

Never put a container on the table. Always have flowers: Tulips in the spring. (If not flowers, a bowl of fruit will do, or even a lemon and some cherry tomatoes.) Put candles on the table. If you're not going to use them first, light the wick for a minute. (The white doesn't look good.) Send flowers for anniversaries. I did it for Ben and Meghan yesterday. (One year!) Specify no carnations. (Not classy.)

Yesterday I channeled my father as my neighbor Susan and I walked over to the tennis courts to hit outside for the first time. "I'm going to hit a few," I said to Joe. My father's words. Every so often a breeze picked up. If it was really windy out, my father would say we couldn't complain. "It's an outside game," he'd say.

"Serve 'em up."

Into his eighties, he had a regular tennis game at the courts at Atlantic Beach. I'd wake up to find him eating his breakfast in his tennis whites, long legs stretched out. He would come back grumpy if he had a bad game. (Like father, like daughter.) He would grumble about one particular octogenarian, "He cheats."

He loved hitting with the pro, but he would say, "Never kid yourself about how good you are when you're hitting with the pro." So true. Always makes me laugh.

Sunday, April 20, 2014

False teeth, here I come

It's not every day that someone talks about desiring false teeth, but that is what it has come to, and after visiting my dentist last week, that is what is on my mind.

Of course in this day when euphemisms have replaced the real name for things, they are not called false teeth, but rather implants, bridges and dentures. But they are not real, so therefore they are false.

Because being on prednisone rules out getting implants, I have been waiting for the day that I can get a bridge. That day came on Thursday, six weeks after my 11th tooth was pulled. My dentist took an impression, went out and came back in and said, "Bad news." Having had a run-in with tongue cancer, those are words that I did not want to hear.

But he was talking about the coverage, or lack of coverage, on the dental insurance policy I purchased in January from AARP. It pays for regular work – up to a total of $1,500 a year – but it will only cover major work like bridges after a year, and even that might be minimal because part of the reimbursement will have been eaten up by regular visits.

He told me to go and decide whether I want to do it now and pay the approximately $3,000 fee or wait six months to get some coverage. Oh, and also, he said, I have three cavities. I asked how that could possibly be when I take very good care of my teeth.

"We've already been through that," he said.

Oh, yes, prednisone again.

"Look," he said. "They're only cavities. That's why I wanted to be a dentist and not a doctor. I don't have to tell anyone they have six months to live."

I shouldn't really complain about this, because I can find the money for the bridge while there are people who have to choose between medicine and rent, between medical care and food.

After I left, I only thought about it briefly. Of course I'm going to do it. I have to chew with my front teeth like a rabbit, and in addition to it being unseemly, this way of chewing can damage my front teeth, and losing them is something I don't even want to think about.

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.