Saturday, November 29, 2008

Talking Turkey Race makes me want to run

I took this photo at Holyoke's Ashley Reservoir with my
cell phone while walking there with a friend a few weeks
ago. Today, runners will pack the trail.

Holyoke's 30th annual Talking Turkey 6-Mile Cross Country Race, taking place today, is expected to draw close to 1,300 runners.

I won't be there, but I will be thinking about it.

That race, which circles the beautiful Ashley Reservoir, is a must-do for many area runners, along with March's St. Patrick's Road Race, also in Holyoke.

I've run the Talking Turkey many times. It has a special resonance for me: When I ran it in 2005, it marked my comeback to racing after my chemotherapy and stem cell transplant in 2003. I wrote about the events leading to the race, and about what it meant for me, in a piece for the New York Times magazine's Lives page.

I was just talking to my friend Emily about it. She said, "Next year, right?"

That's my goal, along with one day getting back to the St. Pat's race, a hilly 10-k.

Whatever you're trying to come back to, you figure out different ways to build back up. (I admire you Pilates people. Ouch. I couldn't do it.) Tennis came back easily this past summer and fall, probably because, unlike running, it allows for frequent stopping to catch your breath, and in doubles, it has the built-in capacity for shouting "Yours!"

When coming back to running after each of my three Caesareans and my first round against leukemia, I tried two approaches. First, of course, I walked, slowly, and then aerobically, until I got to the point where I thought I could jog.

After the babies were born, I just went straight at it and ran the half-mile or mile (I can't remember exactly which). After leukemia, I took the walk/run route; quarter-mile walk, quarter-mile run, for about a mile until I could do one mile at a time. The rest followed naturally, as I built back up to my usual level of six miles or so on weekends and shorter distances during the week, mixed in with tennis, yoga, weights, biking, and, oh yes, did I mention my full-time job?

With my hematocrit currently about 28 (normal is 34.8-43.6) I actually feel fine, but I obviously don't have it in me to do more than a fast walk with maybe a few minutes or so of jogging between trees. So, I guess I need to be patient. It's not always easy, but of course we all need to remember to be thankful for what we can do rather than spending too much time fretting over what we can't do.

I wonder what approach others have taken to getting back to running or whatever activity that makes them feel like themselves.

Runners at the Talking Turkey Race usually get a really nice long-sleeved mock turtleneck. The last year I ran it, in 2006, they gave something a little different: a maroon fleece vest that I wear all the time. This year, for the 30th anniversary, they're giving out something super-special: a windbreaker. Sigh. I'd really have liked one of those. Sure, you can buy your own windbreaker, but it's not the same as earning it at a race. And as most runners know from an unwritten code, you can't wear the T-shirt or windbreaker or vest or whatever unless you finish the race. Not that I need any more T-shirts, but I do need to at least have a plan about how to get back to running.

Wednesday, November 26, 2008

Remembering. Wondering. Thankful.

My mother, Lynne, arranging flowers from my garden four years ago.

Two years ago today, my mother died after a short battle with lung cancer.

Tomorrow, of course, is Thanksgiving.

On Thanksgiving two years ago, I was consumed by grief and by guilt, while also being buoyed by all of the love around me, from my children, family and friends.

Quintessential New Yorkers, my parents always came to our house for Thanksgiving; they loved the mood of the holiday in New England. My mother, with help from the kids, set the table, turning it into a work of art. Distrustful of Western Massachusetts florists, my mother brought a centerpiece from New York.

My mother loved getting dressed up to go out to dinner with my father, Alfred. She also loved wearing sweaters and slacks for Thanksgiving in the country, always with flair.

After that became cumbersome, we ordered the centerpiece from the local florist. When it arrived, my mother sighed, shook her head, took it apart and redid it with her usual flair. She cleaned the silver and ironed the tablecloth, despite my protestations that she needn’t bother. Cleaning up loose stems and leftover silver polish, I got a little annoyed, and then guilty about feeling annoyed. I was glad that she was there, and I had no idea how I'd do it without her.

I could be annoying too. I insisted on going for my traditional Thanksgiving Day run before putting the turkey in. We ate late, so when I got back from my run I felt that I had all the time in the world to stretch and lollygag. Inevitably, my mother would say, “We better put that bird in.”
Yes, Mom, if you say so.

The last-minute preparations were usually chaotic, but eventually we sat down to the feast. My father gave a short speech about being thankful to be in America, the best country in the world despite its problems.

My mother came alone for four years after my father died in 2002. But two years ago, she couldn’t get out of her bed. For most of that fall, Diane and I had taken turns going to New York to be with mom, first in the hospital and then at home under hospice care and with full-time aides. The once-lovely apartment building where we grew up was in shambles, having been caught in the wave of classy co-op developments in New York.

In top photo, Diane, left, and I stand in front of the apartment building where we grew up.
In bottom photo, me, Mom and Diane leave the building for some sort of ladies' outing in 1964.

Working around the mostly elderly rent-controlled and rent-stabilized tenants who could not be made to leave, the developers tore out walls and replaced old pipes, making a big mess and not cleaning up after themselves. Big fat rats scurried up and down the back staircase. There was debris everywhere. And did I say there was no heat? It was illegal, but they chose to pay the fine rather than to spend the time and money to work faster to get the heat going. They did give the tenants space heaters, certainly not enough to heat a whole apartment. My mother spent much of a month curled up under heavy quilts; the one time she did try to get up, it was so cold she just wanted to go back to bed.

I last saw my mother two days before Thanksgiving. I told her I would bring the kids down for the holiday, and we could eat on stack tables in her room. She begged me not to. She wanted to picture me in my own house, not hanging around her bed. I stayed home, planning to turn around and go back down on Monday. She died on Sunday. I cried my heart out, wishing I had gone. But my cousin Joanne and others told me I had given her the gift of letting her be the parent. She had asked me to stay home, and I did what she asked.

I was so attached to both of my parents that I often wondered if I could survive without them. I thought that somehow, when they died, the earth would open up and swallow me. They both lived into their 80s, lived good lives and were sick only for a short time. What more could you ask? No matter how old they are, you want more.

Before my father died, I remember asking a childhood friend how she coped with her father’s death. “You don’t get over it,” she said. “But you get used to it.”

I got used to it. My sister and I leaned on our mother, on each other, on our children and on a whole lot of loved ones. I ran a half marathon. I played good tennis. I did yoga. I drank a lot of water, took care of myself, got plenty of rest. I spent extra time with my mother.

I didn’t get swallowed up by the earth.

I did get cancer. After each parent’s death.

My initial leukemia diagnosis came just about a year after my father’s death.
I relapsed less than a year after my mother died.

With the relapse, was it something I had breathed in from the construction? I doubt you could make a direct connection.

Was it grief, which, both times, created a vulnerability causing cancer to pounce?

The straight scientific answer is that, no, loss of a parent cannot cause cancer.

Still. I am left wondering if there was a relationship. But what happened happened, and now I must focus on the present.

Tomorrow, Joe will put the extra board in the table and help put the tablecloth on evenly. Katie will set the table the way my mother taught her. We’ll take out the turkey that Katie made years ago out of a tiny upside down flowerpot for the body, construction-paper feathers and pipe-cleaner legs. I’ll clean the silver (sigh) and try my best to make a decent flower arrangement, hoping my mother’s hands will guide me. We’ll prepare a small feast. A few friends will come. Ben will deliver what his annual “Al Gordon speech,” in my father’s place.

We will be thankful. We will try to think of my parents’ presence, not of their absence.

Monday, November 24, 2008

Good news Monday

When possible, it's nice to plan something special for yourself in conjunction with a visit to your doctor's office or to the clinic. This doesn't have to be something big. It can just be some little treat.

Sometimes I see a friend in Boston or stop by Diane's. Occasionally, we go shopping. Again, I'm not talking about buying something big, although I did buy a necklace at my favorite shop in Newton Highlands on a brief (masked) shopping trip with Diane.

Yesterday's visit had a built-in treat. My friend Mieke, who moved to Chicago at the end of the summer, is in Western Massachusetts for a week, and she went with me to Boston. Mieke is a relatively new friend; we met at the newspaper where she was a photographer and where I, athough on leave, am still on staff. We hit it off immediately when going on assignment together and soon became good friends.

Yesterday, we talked and laughed the whole way into Boston, fueled by a muffin each and a Starbucks to go (ouch, I sound like an ad again, sorry), and before I knew it we were there. I was so relaxed that I even forgot to get nervous at my usual spot when approaching Dana-Farber. We talked in the waiting room, and I forgot to worry about my blood counts. And when the counts were good, I was happy to share the news with my friend:
White: 4.9 (normal, yay!)
Platelets: 164 (normal, yay!)
Hematocrit (28.4) and hemoglobin 9.9...down a bit and kind of pokey.

Dr. Alyea reassured me that he wasn't worried about the red count, which often takes the longest to recover. He also told me that I could go every two weeks instead of every week.

I had already graduated once to the two-week plan, but my visits were increased to weekly when my counts went down earlier this fall. It makes me a little nervous to go back to two weeks. I don't actually love spending the whole day going to the clinic, but I do like the security of getting checked once a week.

Oh well, with Mieke to talk to all the way back, I didn't have time to dwell on it.

In another encouraging sign about the success of new therapies in the war against cancer, the Cambridge, Mass.-based biotechnology company Genzyme said yesterday that it has asked the FDA to approve its drug Clolar (clofarabine) for treatment of acute myeloid leukemia (AML) in previously untreated adults 60 and over whose leukemia may be resistant to standard chemotherapy.

The drug is currently approved for treatment of acute lymphoblastic leukemia (ALL) in relapsed patients one to 21 years old who have received at least two prior treatments.

Saturday, November 22, 2008

Saturday funnies

Things fall apart, sometimes all at once, sometimes randomly.

The door to our microwave broke. Craig, the cheerful appliance repairman, rigged it up so that it works, but you have to use two hands to open the broken latch. I can’t replace the microwave only, because it is in the same unit as the oven. It would be difficult, and costly, to replace the whole unit, so we make do. I did manage to grow up without a microwave, but at this point it seems like a must-have. I use it a lot…to reheat my coffee.

I call Craig so often that he finally gave me his cell phone number so he’d be easier to track down. He seems to get a kick out of appliances. He understands them, forgiving their finnicky behavior. When he is done fixing something, he says, “She’s good to go. She shouldn’t give you any more trouble.”

More than once, he’s dealt with my stove. The electric ignitors on the burners need to be filed occasionally, and if you don’t get it just right, one or another burner won’t go on and it will click like crazy when the others are lit. I yell at it. I pound the stove. I try my nail file on it. Finally I call Craig. He cleans them up and they’re good to go. Finally it occurred to me to ask him to leave me a piece of his magic sandpaper.

Our kitchen cabinets (yes, I know, these are not appliances) have, over the years, fallen apart one at a time with no provocation. Turns out that when we redid the kitchen 16 years ago, they used a bad batch of glue. The kitchen supply people sent a carpenter to try to figure out which ones to re-glue, without much success. At least when I call to report another broken door, they fix it free of charge.

But back to appliances. The other day my dishwasher broke, and Craig came to fix it. As he was about to leave, I remembered something. Sometimes, odd horseshoe-shaped pieces of thin wire turn up in my washing machine. I’ve been saving them to show him, figuring that they signal my washing machine’s slow deterioration. But also figuring that “if it ain’t broke, don’t fix it,” I have forgotten to ask him about it.

“Oh,” Craig said, with a grin.

Then I thought I heard him say, “Those are brunderwires.”

Huh? Was that some esoteric appliance part?

“Bra underwires,” he said. “I see it all the time. One customer really wrecked her washing machine with them.”

Ohhhhhhhh. What do you know about that?

Sometimes you just have to laugh.

Thursday, November 20, 2008

Time to put the tennis stuff away...sigh

Donna and Deb. R, standing, and me and Deb D., kneeling, on the court
in Longmeadow, Mass., earlier this month.

When you're on the disabled list, it helps to try doing at least a little bit of what you enjoyed before you were sidelined. Some things come easier than others. When I was zonked out from medication, I felt at least a little bit like myself by reading a book, even if I dozed in and out. If you like board games (which I don't), or if you like watching movies (which I do), you can modify those activities to fit your energy level and concentration.

It's a little harder if it's a sport like tennis that you love.

Sometimes in the hospital I practiced my swing (sans racquet), just to help my arm remember the movement. Back home after my transplant in June, I swung the real racquet and sometimes bounced a ball on it. But it wasn't like doing the real thing. When I took my first walks around the lake and passed the Mount Holyoke tennis courts, I was motivated by hearing that lovely sound of balls hitting the soft spot. Sometimes, though, I took another route because I was just so upset that I wasn't able play yet.

Soon enough, I was out there trying for my umpteenth comeback. I was lucky that the weather held for a long time. We took the photo above just a few weeks ago. I managed to play outside into the beginning of November. Now, with temperatures below freezing, I have finally put my stuff away for the season.

Everyone has moved inside, but I can't follow because I still don't go into public places without a mask. One of my teammates asked if I thought I could try playing a match while wearing a mask, but the answer is a clear no. Sometimes while I am waiting in the clinic, my face heats up inside my mask so much that I begin to feel feverish. I couldn't imagine running around that way.

I was lucky enough to have friends who put up with me while I regained my tennis legs (and swing) in the summer and who played outside so late in the season that some of us even wore gloves. I am lucky that it was (and is) always more than a tennis game, with time for sharing stories, making jokes and having bagels or a cold drink or a popsicle after.

I was lucky that our coach, George, below left, hit with me once a week, imparting his wisdom about spins and slices and, oh my, forehand and even backhand loops.

My friends Joe and Chip put up with me when I first got out there; I hit a lot into the net and only tried for balls that were hit right to me. My friend Ken played singles with me and even told me where to stand after he served. He told me that I won fair and square, but how many matches do you get to play where your friend makes sure you hit a winner back?

Besides the friends in the photo, other members of our tennis family -- Korby, Nancy, Jeanne and Gail -- played doubles with me outside all summer and well into the fall. They didn't patronize me, but they did make sure that I stopped when I was tired.

It felt great to sling my tennis bag over my shoulder, grab my water and sunglasses and feel like my old self, and to focus on hitting the ball to the exclusion of everything else.

I guess that soon enough I'll be able to go inside or, when it gets warmer, play outside again. In the meantime, maybe I'll think about trying to go for a little run...unless I can convince them to play in the snow, but somehow I don't think so, even though there is a lot of love going around with that yellow ball.

Tuesday, November 18, 2008

Good counts, interesting conversation yesterday

My counts were good at yesterday's clinic visit.

White count was up to 3.3 (almost normal!)

Platelets were 163. Normal, yay! (I stopped lifting my little weights when my platelets plunged, but now I no longer have an excuse.)

My hematocrit dropped a little, to 28.3, and hemoglobin dropped to 10. I was surprised, because my energy has been fine. In any case, I earned a shot of Aranesp to give my red cells a boost.

People were talkative yesterday in the clinic. Interestingly, I met two women who were lucky to have sisters who were excellent bone marrow matches. One had received her sister's marrow nearly four years ago and was doing wonderfully. She sat in the waiting room, smiling and lightly holding her husband's hand and looking not the least bit nervous to be there. In fact, she looked quite happy. We briefly exchanged stories. I remember that I had the same kind of confidence when I was nearly four years out. I was a little envious, but also happy to see a survivor who was doing so well.

Later I talked to a woman who had recently finished chemo and was about to be admitted to get her transplant. Her sister, who was with her, would be her donor. Two similar faces looked at me, the difference being that one had hair and the other wore a headscarf. They had had a long day of pre-admission testing. 

They asked about me. "I had a transplant in June," I said.

They looked at me for a minute.

"Why do you have so much hair?" one of the sisters asked.

Well, then, there's the rest of the story...

You could really get me going on the hair topic: "Yeah, I know, I have a lot of hair, and it's still so curly. I can't wait until it calms down. Some of my friends think I should cut it all off to where it was about an inch long. They thought it looked really cool. But it reminded me too much of post-cancer hair. So I'm trying to let it grow, but it keeps pouffing out so much that sometimes it drives me crazy. I think I should at least wait until seven months out, when my doctor said I could color it. I asked my son Joe the other day, and he said 'Stay the course.'"
Bla bla bla. 

Anyway I didn't say any of this. I figure my friends and family have had to listen to it enough, although in a second it might have poured out of me and I might even have asked these strangers for their advice.

Instead, I answered that I had had a transplant in October (not to mention the auto five years ago), but the graft failed so they redid it and now I was doing well and it sounded like she would be too.

It interesting how we do these little dances with strangers. I know how sensitive I am, and so I don't like to mention my "episodes" when asked by someone just embarking on a similar treatment. Of course I also know that everyone is different. But we pick up little bits and pieces of other peoples' stories and end up relating to them in one way or another.

I gave the sisters a big smile to show them that I was now doing fine (knock wood), and we all wished each other well.

Sunday, November 16, 2008

Leukemia threatens another life ... on film

Catherine Deneuve plays a woman with leukemia in a new movie

Tonight I heard an interview on NPR with Catherine Deneuve, known as the grande dame of French cinema and considered by many to be one of the most beautiful women in the world. I've followed her career since being transfixed by her performance in 1967's "Belle de Jour."

Now 65 and still beautiful, she plays the "monstrously complex" matriarch of a large, dysfunctional family in the new French movie, "A Christmas Tale." Her character has a rare form of leukemia, which killed her young son and now threatens her own life. It turns out that her black-sheep son is a perfect match for being a bone marrow donor. He says he doesn't love his mother. She says that's fine, because she doesn't love him. Obviously their relationship is complex and they love each other in their own ways.

In the interview, Deneuve discusses the complex relationships in the film and answers a question about how it has been for her to age on film in front of so many people. She replies that it is much easier for women to age gracefully in Europe than in the U.S. It's not a new thought, but still, it's interesting to hear it from her.

As for the film, I don't know how the story plays out, because the NPR story and print interviews don't give it away.

I do know that fatal blood cancers -- most often leukemia -  are "popular" in movies (and novels), including "Sisterhood of the Traveling Pants," "Terms of Endearment," "Love Story," "Dying Young," "Rainmaker" and a long list of others. I'm not sure why this is. Because leukemia and lymphoma sound mysterious, or romantic? Or maybe because they are a way of giving a character cancer without having to say the "C" word? (Although in the movie Deneuve's character presents herself by saying, "I'm the one with cancer.")

One google search for leukemia and movies turned up 48 entries!

I wonder if people have any thoughts about this.

Saturday, November 15, 2008

Another adventure with an "old" friend

On Friday I wrote about a trip with old friends to a lake house in Connecticut. About a week after that outing, I went on another mini-adventure with Margaret, another old friend.

My postings were delayed because I couldn't figure out how to put more than one photo on a page. Thanks Susan for walking me through it over the phone from California. I was beginning to feel really photo-phobic.

Margaret and I have been friends since meeting as cub reporters at our first job at the old Holyoke Transcript-Telegram. Although we now live across the state from each other, we've managed to stay super-close and see each other frequently. We've been through a lot together.

Since she lives in the Boston area, she and Diane were my bedrocks during my post-relapse hospitalizations. They stood "in loco Lynne," i.e. in place of my late mother, Lynne, who was with me all the time during my first bout. Margaret was the one who was with me in the clinic the day I learned I had relapsed. These days, she often meets me downtown before or after a clinic visit to share good news and shore me up when my counts, and my mood, are down.

It was fun to go on an outing unrelated to health issues. We drove about 45 minutes west of my house to the town of Middlefield, revisiting a waterfall we had marveled at together many years ago. We went to Glendale Falls, which is one of the longest and most powerful waterfalls in the state. Katie and Margaret's son Natty came along. (In the photo, I'm the one on the left with the pouffy hair.)

When we got there, we all started walking down the steep path that leads through the woods to a beautiful pool at the bottom of the waterfall. I didn't go very far, suddenly getting suspicious about the possibility of the fungus aspergillus lurking in the moist soil. People with compromised immune systems are susceptible to infection, as I learned the hard way four years ago when I developed a fungal pneumonia, possibly picked up in my garden, and had to have lung surgery to remove it.

Margaret and Natty scampered down to the bottom while Katie and I retreated to a warm rock where we laid out our picnic. Soon Margaret and Natty joined us, and we enjoyed our food and their friendship, the sound of the waterfall roaring not far away.

Friday, November 14, 2008

It's good to get out of the neighborhood

Me, Tami and Nancy at Candlewood Lake last month

Recently I have ventured a little farther from the neighborhood. Not counting my visits to Dana-Farber, I hardly ever go further than a 30-mile radius from my house. I still haven't gone far, but you really get the feeling that you're breaking out even when you're just taking a little trip.

A few weeks ago, I went to New Milford, Conn., for an overnight at the lake house where my friend Tami and her family have been going since I've known her, which dates back to high school. When planning and packing up, I had the great feeling of being a "normal" person packing a bag for somewhere other than the hospital. Emily, another member of our sisterhood, had to stay home in Pittsburgh and work. We talked to her on speaker-phone, so it was almost like she was there.

And by coincidence, Ben was covering a Rutgers football game in Pittsburgh, so he stayed with his "Auntie Em,"
who took him to the movies.

My worries, and my hand sanitizer, went with me. We took a long walk and as we were going up a steep hill, I asked Tami, "Do you feel winded?" (Translation: Am I OK?) Yes, she said.
She added that she feels winded every time she walks up that hill. It's not that I expect to have the same endurance as other people, but rather that I expect to have similar or better endurance to what I had the day or two before. If I feel that I'm more tired than usual, I begin to wonder if I am getting sick in a little or big way.

Of course, no matter how refreshing the change of scene, most everyone takes their regular concerns with them, so in that respect, I was just as normal as anyone else.

We don't see each other that often, but we pick up without missing a beat. I guess that's what happens when you've been friends for 40 years. One day it poured, so we sat inside and talked and ate and ate and talked. The next day it was beautiful, and we walked down the road for a long time. We said hi to two horses in a field who came over to the stone wall to see us.
The horses walked along next to us on their side of the wall. I wanted them to stop so I could take their picture, but they kept moving.
So I jogged ahead to take their photo from a better angle.
"Hey," I said to my friends. "Look at me. I'm jogging!"

Thursday, November 13, 2008

Stimulating the economy, Part Two

A couple of posts ago I wrote about buying a new couch.
I also just bought a new car.

In the absence of any paycheck other than social security disability, it might seem strange to make such big purchases. But here's the thing: I hold on to my stuff for a long time and then I think about getting new stuff for a long time, so that by the time I actually make a big purchase, I have saved a lot of money during the thinking phase. Also, as my sister, Diane, pointed out in her recent comment, so-called "retail therapy" is an investment in the future. It is a sign that I plan to be alive to enjoy my new purchases.

Back to the car. It was hard to say good-bye to the nine-year-old Mommy Van with the Wellfleet and Eastham parking stickers in the window.

But last winter, when it got stuck in a snow ditch, I began to think seriously about getting something better in the snow. And with 162,000 miles on it, I figured I should quit while I was ahead.

It’s hard to go car shopping at the post-transplant stage when you still need to wear a mask inside. In fact, it's hard to do most kinds of shopping, as I wrote in my "couch" post. Earlier in the fall, when I bought a mattress sight-unseen, I had to explain to the salesman that the delivery people couldn’t come if they were sick. I could have left it at that, but the rest of the story just slipped out. “I had a bone marrow transplant and I have a weak immune system and I can’t be around germs,” I said.

He promised to send healthy delivery people only. We settled on a memory foam mattress.
“It’s really great on your bones,” he said.

Hmmmm. Well I guess I had never thought much about the meaning of a bone marrow transplant before I had one. I ended up hating the mattress, because I felt every night that I was getting stuck in the valley formed by my body. Recently I exchanged it for a normal mattress. But anyway.

As for the car, I settled on a Subaru Forester. I drove the car, figuring that there couldn’t be too many germs in a new car. Then I negotiated with salesmen from different dealerships. I told them only that I had recently gotten out of the hospital and wasn’t supposed to be around germs, and that we would need to have our preliminary conversations outside.

I’m not naturally suited to the price negotiating thing, so I tried extra hard to do a good job. I researched the car on Consumer Reports and paid $14 for a report telling me the price at which to start negotiating.

Dealer #1 was about $500 above that bottom line and said he could only go down $100. “You don’t have to believe me, but I’m only making $250 on that car. It’s a great deal,” he said. As for my van, valued at $2,800 in the Kelley Blue book, he said he’d give me $2,000. Harumph.

Dealer #2 went below the Consumer Reports bottom line on the car and gave me $3,500 for the van, for a total price of $2,000 less than Dealer #1.

Naturally, I bought the car from Dealer #2, who brought paperwork into the van and used the dashboard as his desk. I had told him that I could go inside if I wore a mask, but he said he didn’t mind sitting in the van. (And, really, he would have sat on top of the car to make the sale, right?)

We chatted a bit, and he told me he is from Greenfield (Mass.), where my aunt and uncle lived and my cousins grew up. I asked him if he knew my late uncle Milton. “Milt!” he said. “Everyone knew Milt!” And it’s true; every time I bump into someone from Greenfield, they have a story about Milt.

So there I was signing paperwork in the car and talking about Uncle Milt. Odd. Then the salesman asked to take a copy of my license. I was on a break from chemo when they took the license photo, and the registry wouldn’t let me use the old photo. So in the photo I’m wearing a headscarf and looking kind of thin and pale.

When I handed over my license, I blanched, as though I had been found out. (I know, I know, nothing to be ashamed of, but still…) “It really is me,” I said.

I told him I’d miss the van, and the stickers, and he said that if I wanted, he could get the stickers off and affix them to the new vehicle. “That’s kind of cheating,” I said. “I’ll have to get back to the Cape and get some new ones.”

Mission accomplished, I went home for a few last days with the van. The van is dark green, and for a change of pace, I picked a maroon car with a reddish hue. It's a more fun, lively, jazzy color.

Last time I was in the hospital, my friend Barry brought me a red toy car. It was his way of reminding me about the need to “keep the car on the road” when my mind starts to wander to the dark side.

The little red car is on my dresser. The big reddish car is in my driveway.

And really, it’s all about keeping the car on the road, isn’t it?

Monday, November 10, 2008

A day on the sunny side of the street

While I was waiting in the clinic today I read a New York Times story that deserves the over-used word "heartwarming." It is about the extraordinary friendship between a Dallas man with an aggressive form of leukemia and a German man who donated his bone marrow to the Texan. The transplant was eight years ago and the man is cancer-free, but that is just the beginning of the story.

It was a fortuitous time to come across the story. It took the edge off the anxiety that I feel, and that I'm sure most people feel, when waiting for their test results.

My counts were all up today. Platelets were 154 -- almost normal! (Normal is 155-410). Sure is an improvement over my recent low of 39 on Oct. 14. Hematocrit was 30 (normal is 34.8-43.6), and my white count was up to 2.1. That's still low (normal is 3.8-9.2), but it's going in the right direction.

When I saw Dr. Alyea, he said that the lab was backed up and that my counts weren't back yet. He said I could go home and Melissa would call me in the morning, or I could wait around a little longer if I wanted. "I feel like I went to the grocery store and I'm leaving with an empty cart," I said. "I think I'll wait." Dr. Alyea laughed and said he thought that was a fine idea.

I felt like I had expended enough nervous energy and didn't want to carry it home with me. I was glad I waited.

Earlier in the car, on the drive to Boston, I listened to a CD of sanskrit yoga chants that my friend and yoga teacher, Erin, had made for me. It's really not the kind of thing to listen to while driving. But I felt it could help keep me calm, sort of like when I listened to a meditation CD a while back while making the same trip. Also, I have to confess, I have trouble sitting quietly listening to these CDs while at home, so I take advantage of the opportunity of previewing them while driving.

I was "Om-ing" along with the narrator, Richard Freeman, when I started to get a little sleepy. Last time I had balanced the meditation CD with a cup of coffee, but this time I didn't have my coffee with me. I found a couple of miniature Tootsie rolls floating at the bottom of my bag, but it was 11 a.m. -- too early for candy.

I turned the CD off and turned on the radio, looking for something lively.

I found a jazz station playing guitarist Mimi Fox's rendition of "On the Sunny Side of the Street,"
from her CD "She's the Woman."

The sunny side of the street seemed like a great place to be.

Saturday, November 8, 2008

Who is that woman behind the mask?

Today I looked at couches. My couch is really old; I still have the beige Danish Design sofa that many of my friends and I got for our first apartments. The couch and matching chair followed me to my house and have held up pretty well. They are so out-of-date that they are almost “in.” And I have disguised their shabbiness with colorful throw pillows.

But since I was holed up here last winter and will be holed up here again, I figured I might stimulate the economy and make the living room a more comfortable place in which to curl up and read a book. The current couch and chair are really low to the ground and not that comfortable. The den, where the TV is, has gotten more attention over the years. The living room has been neglected.

Naturally, I wore my mask when going into the furniture store today. After I chose a model and fabric that I liked, the saleswoman told me that I could pay about $100 more for a protective chemical spray making it easier to wipe up spills.

“It’s hypo-allergenic, but since you’re chemically sensitive, you might not want to do it,” she said, looking at my mask.

It took me a moment to realize that she thought I wore the mask due to chemical sensitivity, not due to the need to protect myself from germs post-transplant.

For some reason this pleased me. To me, the mask is a connection to cancer; to her, it was not. She did not think of me as “cancer patient," or even as "cancer survivor."

When I reached into my wallet to get my credit card to make a deposit (OK, I didn’t just look at couches, I actually bought a couch), my blue Dana-Farber ID card was visible. Of course I didn't try to hide it, but I wondered if she had seen it and would then start making assumptions or asking questions. I've been a loyal customer for years; she knew about my first run-in with leukemia years ago, but I don't think she knew about the relapse, and I didn't feel like going through the whole explanation.

This all made me think about my perception of who I am at this time in my life. I bet everyone going through cancer treatment, or recently out of it, has similar thoughts. Taking this one step further, I’m sure that perception by others is something dealt with by anyone who looks different, whether they’re in a wheelchair or walking with a cane or in any other way look different.

I need to realize that signs of difference are nothing to be ashamed of. I did correct the saleswoman and tell her that the mask was not due to chemical sensitivity, but rather because I need to avoid germs, and therefore the upholstery spray would probably be OK. She didn’t ask any more. Possibly I was anticipating the need to explain about the germs, which could lead to more questions about the long story, but the saleswoman did not probe. She didn’t care; she was selling me a couch, and she didn't need my life story to do it.

And of course I need to remind myself of the positives: I can go into a store, I can afford to buy a couch, I am on track in my recovery. I guess it's the same for everyone; we need to look at what we can do rather than dwelling on our limitations.

Easier said than done.

Meanwhile, I look forward to the day when I can go into a store without hiding behind a mask.

Friday, November 7, 2008

Registering as bone marrow donor could save a life

If you live in Western Massachusetts, you could potentially save a life by taking a short amount of time out of your day on Nov. 19 to attend a drive to register as a bone marrow donor. This does not mean that you have to become a donor; it simply means that you will join the approximately 11 million people who have signed up with the National Marrow Donor Program to possibly donate in the future.

I know how important this is, because I am alive today thanks to a generous donor whom I've yet to meet. I just know that he is a 54-year-old man who lives far enough away that his cells needed to be flown to Brigham and Women's Hospital in Boston when I received my first transplant a year ago, and again on June 10 when the first graft failed.

The drive will be at Mount Holyoke College in South Hadley. It will be preceeded by an educational event this coming Wednesday (Nov. 12). Also please note that if you are between the ages of 18 and 60, there are various ways to become a donor -- either on-line, at a donor drive like the one at Mount Holyoke, or at registration sites throughout the country. The National Marrow Donor Program website has all the information.

Here is the press release about the Mount Holyoke donor drive:

"On any given day, more than 6000 men, women and children are searching the National Marrow donor Program Registry for a life-saving donor like you. For many of them who have leukemia, lymphoma, and other life-threatening diseases, a transplant may be their best and only hope.

The simple act of joining the Registry adds to the possibility of a life being saved. Come to our educational event on Wednesday, November 12th in Hooker, 5-6pm, to hear the real stories of donors and patients, more about the science behind a donation, and what being a donor entails.

The most important thing is to come to MHC’s donor drive and join the Bone Marrow Registry by simply having a cheek swab taken, and filling out your contact information. The Drive is Wednesday, November 19, 11am to 5pm in Chapin.

The Registry needs all donors but is especially looking for minority donors. Many minority people who are in need of a donation, cannot get one, due to the shortage of minority donors. Donations to the Registry can be paid by your MA insurance."

Wednesday, November 5, 2008

Mother knew best about many things

My son Ben bought the mug at right on the Internet in 2004.

Years before everyone had a cell phone, my mother told me I should get a new thing called a car phone because I drove so much and I could call for help if needed. I rolled my eyes and said, “Who needs a phone in a car?” Later I gave in and got the phone, which was almost as big as a shoe box. The rest is history.

Years before everyone had suitcases with wheels, my mother said I should stop dragging my big suitcase around and get one with wheels. I rolled my eyes and told her that was silly. Eventually I gave in, and now, of course, most people use suitcases with wheels.

My mother also told me, when the 2004 Democratic convention came around, that I should watch the speech given by a young senate candidate named Barack Obama. I told her most of those speeches were boring, and that I didn’t even know who this Barack Obama was.

“He’s going to be president some day,” she said.

Last night, when the early returns still showed that no red states had flipped to blue, I anxiously called Ben in New Jersey. Ben, who is something of a presidential historian, told me to calm down. This was a kid whose favorite bedtime books included a history of the presidents. As a kindergartener, he could recite the presidents in order, and my mother loved to show his talent off to her friends.

When Ohio went for Obama last night, the phone rang, and it was Ben saying, “I told you.”

As it looked better and better, Katie sat on the edge of the couch. At 16, she doesn’t remember much about 2000, but she felt the sting of 2004. When Obama won, she danced around the room.

When I talked to Ben again, I said that I think his grandmother, who died two years ago this month, is happy about it in heaven. (I’m sure that my father, who died in 2002, is happy too.)

Ben said that his grandma had probably found Obama’s grandma to congratulate her.

It was an unbelievable night.

Mother really did know best.

Tuesday, November 4, 2008

Counts were better, and clinic was crazy

My counts were mostly better yesterday. Platelets were up to 105 and hematocrit was up to 29.9. My white count held its own but is still kind of pokey at 1.4. I would love to take one of those Neupogen shots that is hanging out in the fridge behind the grape juice and milk, but Melissa said there's no reason to take something I don't need.

The computers were down at the Dana-Farber clinic, making the waiting room feel like an airport terminal when there are flight delays. Everything had to be entered by hand, backing things up even more than they usually are.

It was hard to find a seat in the waiting room. Some people took the longer-than-usual wait in stride, while others were clearly annoyed. At one point a technician came out of phlebotomy and called three names in a row for patients to get their blood drawn, and nobody answered.

"Probably went home," the patient next to me said under his breath..
"Gone," he said when the second name was called.
"Gone home," after the third.

A very thin youngish man sat across the room, joking with the people sitting around him. They seemed to be having quite a good time. Somewhere around 1 or 1:30, he went over to the infusion window and asked if his chemo was ready. "I've been waiting since 10:30," he said, almost cheerfully.

The computers came back up shortly after I was scheduled to be seen, so my wait ended up being about an hour, which was not bad at all. I come equipped with so much reading material -- usually a book, that day's New York Times and Sunday leftovers - that I have enough to keep me busy even if I waited the rest of the day.

It is, of course, interesting how things fall apart pretty quickly when there is a computer problem, and interesting that different people react so differently. It reminded me of system crashes at the newspaper where I work. Attitudes range from angry to merely annoyed to chipper, with people wandering around talking to each other more than usual. (Up to a point, that is.)

Tonight Katie and I are going to Meryl's for dinner and to watch the election coverage. 

We have been transfixed, and it's hard to believe that it's almost over. 
For good luck, we're both wearing blue.

Monday, November 3, 2008

Worrying about not worrying

I feel pretty calm before my clinic visit later today. I don’t have to leave home until 11, so I have time to read the paper, walk the dog, write the post, and, of course, probably lollygag until I am running late.

When you’re further out of treatment, (like I was after my first transplant in 2003) the distance brings natural release from the kind of worry you get in the early days. I’m not that far out after my third transplant – a little less than five months – so my anxiety is still pretty close to the surface.

wrote me a while back that worrying gives you a feeling of control where you really don’t have any. You feel that at least you’re doing something. There are better substitutions, like trust, or prayer, or distraction.

But you do start to feel that your worrying is productive, probably because it becomes a habit. This can be the case in many kinds of situations, not just illness. In letting go a little, like I am today, I am tempted to worry that I should worry, because if I don’t, something bad might happen. I start to feel more vulnerable, like my worry will shield me from harm, and if I go in there all calm, I might get a whopper of a bad surprise.

Well, now that I’ve gotten that out of my system, I’ve gone and eaten all of my cereal without leaving the usual portion of milk for the dog. She is looking at me all sad-eyed. Best to tend to what needs to be tended and try to stop worrying about not worrying.