Fatigue and fear

If you're getting better, you can't be getting worse.

These are the words of wisdom I've repeated to myself in the past few days after Mike at physical therapy told me how much better I am doing.

"When you first came in here, I was afraid of you driving home," he said.

My time at PT is almost done, but Mike said he'd get me some extra sessions to work on my balance and strength. My fractured collarbone has healed, my banged-up knee is better, I've played tennis a few times and felt fine, and today I returned to the gym, riding a bike and doing some leg exercises.

On some days I feel like myself, but mostly after exercise I hit the couch. Occasionally I feel lightheaded, which worries me even more. My rational mind knows that this period of recovery is normal, but somewhere it got in my mind that I might be relapsing.

Of course if I just stayed on the couch I might not get as tired, but that's just not something I do (unless I'm watching the U.S. Open or the Democratic convention).

I don't think the fear ever goes away. It recedes to the back of your mind – you'd go crazy if you thought of it all the time – but certain things like fatigue can bring it to the forefront.

I'm on a two-month checkup schedule, so my next  Dana-Farber appointment isn't until October. But I moved my appointment ahead to next Thursday. Luckily the process of getting checked just involves a blood test. Hopefully (OK, probably) my blood counts will be fine, and I can put the printout on the fridge to remind myself not to worry.

Tennis nut cracks

My visit to Dana-Farber Monday was great.

Dr. Alyea came in talking about tennis, so I knew I was OK. He said he was very pleased with my counts and said that my liver and kidney functions were better, and my potassium and sodium were normal. He dropped my prednisone from 10 mgs. a day to 7.5. The numbers:

WBC: 6.0 (normal = 3.8-9.2)

Hematocrit: 28.8, up from 25 three weeks ago (normal=34.8-43.6)

Platelets: 93 (normal=155-410)

When you look at the normal range, except for the white count I obviously have a ways to go. But I am going in the right direction, which is good. My platelets were up 3 from the last visit. Yippee! I'll take whatever I can get. As a bonus, that number of platelets enables me to get my teeth filled. Sigh.

I headed straight home (OK, I stopped at Starbucks), to catch the U.S. Open men's final, which had been rained out the day before. After some trouble finding the right channel, I saw Rafael Nadal beat Novak Djokovic 6-4, 5-7, 6-4, 6-4.

I had been running around for nearly a week, spending several days with Katie and getting to see Ben. Then I was back home, where it was just me and the dog. I stalled. I wasn't happy. I told myself that I don't have to be happy. I can just sit with the feelings and breathe, and over time I'll get used to it.

Or I can take a tennis lesson, which I did yesterday morning with George, sharing the two hours with a woman named Susan. I always get worse after watching the pros. I notice how their feet are always moving, and how thoroughly they follow through. Not kidding myself that I can be like them, I still try to take something away from watching them. Then I start to think about it too much, which of course is counterproductive.

Sue ran all over the court, like I used to do. I am still trying to get from three steps to four. When it was time to pick up balls, she bounced around. I used my racquet as a cane as I bent over.

George said she is a runner whose tennis game came later.

"Sue is a work-in-progress," he said.

"I guess that makes me a stalled work looking for a jump start," I said. "But we're all works-in-progress, aren't we?"

George agreed that he was too.

I know that, but I when my strokes were off yesterday, I was discouraged. I know what to do, but my body just can't do it. (Hey, sometimes we all say that, even in perfect health.)

George and I hit against Sue, and I asked if he thought I was able to take a turn by myself. "Maybe next time," he said.

It reminded me of when I was lying in my hospital bed, unable to walk, and I looked out into the corridor and watched a patient plod up and down. I asked my nurse if she thought I could do that, and she said, "Sometime soon."

I walked again. I can run and play tennis again.

I told Diane I was upset about my tennis game.

"What, you want to be Rafael Nadal?" she asked.

Diane reminded me that a little more than a year ago, I was being wheeled out of the hospital after nearly dying. "This is what you hoped for, to be complaining about your tennis game," she said.

It's so true. I could use some lessons in patience.

Tradition, tradition!

Katie and I had a successful whirlwind trip for Rosh Hashanah to what my friend Danny calls "the old country," i.e. New York City.

A month ago, I couldn't have contemplated such a trip. But this time I felt I had the endurance and strength to do it. So off we went. We started by taking the same Amtrak train to Penn Station, but from different starting points. Katie got on near Brandeis (outside of Boston) and I got the same train in New Haven. I found her easily and we rode together to the city.

Unfortunately, she had forgotten her sneakers and dress shoes and was wearing only dog-chewed flip flops. Cousin Serena, who is about Katie's size and lives two subway stops from Penn Station, came to the rescue. I called her as we approached the station at 8:30 p.m. and she met us at a nearby restaurant with a bag containing the appropriate shoes. We had a quick dinner and a nice visit and then headed up to 1200 Fifth Ave., where we were staying at a friend of our mother's. We've done this periodically since my mother's death in 2006. It's been great to go home again, but complicated because my parents are no longer there.

The next day, in keeping with tradition, we attended services at the 92nd Street Y, where we met up with Ben. When my parents were alive, we crowded around a back table at a Greek coffee shop down the street along with our cousin Joanne, her husband Alan and whomever else had come to services.

But it was out of business, so we walked uptown to the Three Guys coffee shop. Tradition modified but continued. My mother loved Three Guys. She joked that while some customers are known at fancy restaurants, she liked being a regular at Three Guys, where they always knew her name (and her order).

I talked to Diane, David and Joe and wished them a Happy New Year – and Joe a happy 21st birthday. (Joe's school, Bates, is in Maine, too far for him to make the trip. Diane, meanwhile, spent the day with David's side of the family.)

We used to have dinner with my father's side of the family at my cousin Betsy and Michael's house. I don't see them that much, but I like seeing them and maintaining family ties, so this year we had dinner with them at their apartment in Queens, where we had a good time catching up...and eating a delicious meal complete with my grandmother's honey cake (made by Betsy).

We said the prayers over the round challah (no sharp edges, for a smooth New Year), which we ate with honey (more sweetness), and of course we drank that good Jewish red wine.

Friday was for free time; Katie jogged, and I trotted, around the reservoir in Central Park, another of my haunts when growing up and when we visit. In the afternoon we headed down to the Museum of Modern Art, where we were unnerved by the sound of shouting coming from the atrium. It stopped and started, sounding like people taking turns being flogged or killed.

As you headed upstairs, you could look down below and see what was happening: People took turns walking up to a microphone and screaming. The main exhibit on Matisse was sold out for the day, so we wandered around and then watched the people screaming. We discovered that it was the conception of Yoko Ono, who wrote that she wanted people to scream into the wind in honor of the oppressed who had no voice. We preferred another Yoko Ono project, a "wish tree" in the courtyard. People wrote wishes on tags provided by the museum and then tied them on the nearly-bare tree where the white tags waved in the breeze like leaves.

Many were in other languages. Most of those we could read were for peace, health and happiness. Some were cute ones from kids: I hope fifth grade will be good, etc. I attached my own wish, and then off we went, heading across town to meet relatives from my mother's side of the family.

We ate at one of our favorite French restaurants, where we sat outside in the balmy evening. We see them frequently and always enjoy the time. We fell into an easy conversation, providing each other with updates and just talking about this and that.

Next day (Saturday) we met my high school friend, Margie, for a quick breakfast, then went down to Penn Station and got a train to New Haven, where Jim picked us up. Went home for the rest of that day and evening, and then today, Katie and I drove to Brandeis. I dropped her off and came to Newton, where I am now. Tomorrow I have a check-up at Dana-Farber.

Diane and I watched some of the U.S. Open; they showed a replay of a semifinal from yesterday because the men's final was rained out today. I kept falling asleep. A thought flashed through my head: Maybe the reason I'm sleepy is that something is terribly wrong. Quick correction: I spent three days going up stairs, down stairs, up streets, down streets, going to services (standing up, sitting down), going to restaurants, catching trains, going to a museum, around the reservoir...and even into another borough!

Sorry if this reads like a shallow travelogue. I have skimmed over the history, emotion and meaning of the Rosh Hashanah service and over the wonders of the treasures we saw at the MOMA: works by Seurat, Picasso, Matisse, Cezanne, Monet and others.

Obviously there is more to say about each stop, but I mainly wanted to give a picture of the ground covered, the importance of continuing traditions even as they evolve, and the sustenance provided by family and friends who are just like family.

I'm glad I did it, but I'm pretty beat.

My appointment tomorrow is noon. You never know what that means. Could be 1 or later. Could also make me fall off my seat by actually being noon. My wishes for the day are to get a good report and to get in and out on time to get home (two-hour drive) to watch the men's final, scheduled for 4.

Visit to Serenity Garden breaks up long day

Topiary "Boo Boo Bear" at rooftop Children's Fairy
Garden at Brigham and Women's Hospital in Boston.

Instead of the usual Monday, I had my clinic visit yesterday, due to scheduling changes after the Labor Day weekend. As I suspected, my hematocrit was pretty low – requiring two bags of blood – and my platelets were 10, earning me a bag of platelets. At least the platelets stayed in double digits after 10 days between visits instead of the usual seven. My white count was good, 6.1, and I gained a couple of pounds.

So my worries about a system crash were just that, worries. Dr. Alyea is not concerned, although he would like those platelets and rbcs to start doing their thing. Also apparently I did not eat enough potato chips and crackers; my low sodium had risen after I followed instructions to eat salty snacks, but I slacked off after they said the level had risen, and then it started going down again. I don't have much of a "salty" tooth. Too bad my instructions aren't to eat a lot of cake and ice cream.

My friend Margaret, who works downtown, came to have lunch with me while I waited for my blood and platelets. We ate outside at the "secret garden," which is not exactly secret but is not



crowded either. It's a beautiful outdoor spot in Brigham and Women's Hospital's Connors Center for Women's Health, on the six floor at the neonatal intensive care unit, on the other side of the hospital from where I camped out.

One of my doctors had told me about it when I was in the hospital and really wanted to get some air and sun. This was a good way to do it without having to go out in the real world.

The garden was created and is maintained by a landscaper who lost one of his premature triplets about six years ago. (The other two are doing fine.) On one side is Linnea's Serenity Garden, a patio ringed by flowers and bushes. On the other side is The Children's Fairy Garden. They really are serene.

We sat in the Fairy Garden. Overlooking the rooftops of Boston's Mission Hall area, it also has a patio with tables and chairs, bordered by flowers and whimsical stone sculptures, such as the Frog Prince, and topiary such as Boo Boo Bear.

Margaret gave me a beautiful scarf which just happened to pick up the green in the sweater I was wearing as well as many colors on my necklace. The necklace has a story too: My friend Emily and her daughters Jessica and Samantha got it on a trip to Tanzania. It's a local craft made by women in many parts of Africa to empower the "Mamas" in the villages by providing them with an income. The colorful necklace looks like it's made of beads, but really it's paper. When Emily and Jessica came to visit me in the hospital, I admired the necklace, which Jessica was wearing. She took it off and gave it to me.

This was my second time driving myself, my drivers having returned to school. They gave me the transfusions with a little hydrocortisone instead of Benadryl, because Benadryl puts me right to sleep. (I need something because I am prone to reactions.) The drive is one-and-a-half to two hours, depending on traffic.

With help from Starbucks, I did not get sleepy on the way back, which is where I tend to get tired.

Biggest problem driving home alone: Opening the Odwalla bar that I got at the clinic.
Second biggest problem: Actually eating it. Yuk. I still haven't found one of those bars that I like. A chocolatey Balance Bar is palatable.

Last night I talked to my friend Ken, who "played" tennis with me the other day when I was pretty sluggish. I joked that now that my tank is full, we should play today so I could zip around the court just like the players we've been watching at the U.S. Open.

"OK," he said. "I'll be at your house at 11."

"I was only kidding!" I said.

"I know," he said. "See you at 11."

Gotta go get ready.