Friday, July 29, 2011

All's Well That Ends Well

Katie waits for tickets to Shakespeare in the Park.
Last year's trip New York to see Shakespeare in the Park was pretty simple: Get there at 9 a.m., early but not as early as those who start lining up at 6 a.m. when Central Park opens; get free tickets at 1 p.m.; return at 8 p.m, then see Shakespeare outside at the Delacorte Theatre.

Last year I wouldn't have had the energy to get through this summer's more complex trip.

For starters, last year we took the train, but I was tired of schlepping bags from the train station, so I drove with Katie. First challenge: Parking the car. (A garage is a last, desperate resort.) I have had nightmares about parking and losing my car in New York, and although that had never happened, it almost did when we drove in on Sunday.

I parked temporarily so we could say hi to Jeanne, Bruce and Amanda (we stayed in their apartment) and drop off some stuff. I left the car nearby (on 73rd and Lexington), went upstairs briefly and then returned to move the car to a spot "that's good for tomorrow."

 I was tired from driving the three hours down, plus stopping for lunch in Stamford with Ben, Meg and Jim, and then I went out the side door, which somehow that disoriented me. (I guess it doesn't take much.) I shouldn't even admit it, but the need to confess is strong, so I have to say that for some reason I mistakenly thought the car was on Second Avenue.

It wasn't, so I walked in loops in the lower 70s from Second, to Third, to Lexington. Unable to find it, I basically thought I had lost my mind. Finally I spotted it on Lexington Avenue and 73rd, only a block and a half from the apartment. I was dripping with sweat, but I haven't been so happy in a long time.

(Later I felt better when Bruce told me he had 'lost' his car, reported it stolen, the spotted it hiding at the bottom of an incline.)

Next I drove around looking for a spot on the south side of a cross-street, where the signs say No Parking Tuesday and Friday from 9 a.m.-10:30 a.m. (for street cleaning). After about half an hour of this, I had just said out loud to myself "I hate New York!" when a spot appeared in front of an apartment building on 73rd near Fifth, like water in the desert.

OK then. The next day, Monday, we lined up at 9 a.m. to wait for tickets to "All's Well That Ends Well." The waiting is part of the experience. You bring chairs, books, newspapers, muffins, whatever. You make friends with the people around you, watch the parade of people and dogs along the path and are serenaded by a musician who stops and performs at spots along the path.

Soon after we got our tickets at 1 p.m., the rain began to fall. We did a few errands and walked back to the apartment, trying to decide if we should take a chance and go to the show or do something else. It's like going to a baseball game: You should show up no matter what because you never know what will happen. But if the performance is canceled, your tickets are no good (except for souvenirs).

We hemmed and hawed and decided to skip it, going out to dinner and a movie instead. Even if the rain stopped, the seats would be wet. As Jeanne said, "Who wants to see Shakespeare with a wet ass?" We decided to try again the next day, when the forecast was better.

The next morning, Katie went to get on line at 9 a.m. while I took care of the car; I planned to join her after. I got to the car just before 9 and said hi to the maintenance man, who was hosing down the pavement. When the street cleaner comes, you need to move your car out, and then, unless someone has snuck in behind you and stolen your spot, you back in.

I opened the window and began my wait by calling Emily. Looking the other way, I was surprised by a stream of water coming in through the window and hitting me in the face. I screamed like I was being murdered and told Emily I'd call her back. It was my friend's way of alerting me that the street cleaner was coming. It was 9:06. So I moved out and then back in, but I wasn't finished yet. You still have to wait out the full time, so I sat there and read until 10:30. (Further uptown, in my home territory, they make it easier by just having a half-hour window.

I then carried the (heavy) chair and my stuff back into the park, got on another line, and we got a new set of tickets. It was a nice day and we were going to run in the park, but after lunch, I crashed on the couch while Katie did the same on a bed.

Later we grabbed a slice of pizza on the run, got to the theater and took our seats under a beautiful twilight sky. But no more than half an hour after the performance had started, rain began to fall, turning into a downpour just as the actor playing the ailing King of France said, "Lend me a hand." He added, "Or an umbrella."

The actors walked off the stage, the audience applauded, and then we began our descent to seek cover. We were in the second to last row, so we got drenched. Katie loved it. I felt like I was a little too old to go with the flow (so to speak), but I did my best. Everyone waited under the overhang around the theater. The rain stopped after about 15 minutes, we went back in, and the performance resumed.

Talk about Shakespeare with a wet ass. I was soaked through.

At the show we saw last year, "A Winter's Tale," I have to say I dozed off occasionally. It was hot and muggy, and the production wasn't as good as this year's.

This time I was definitely wide awake. It was partially because I had been doused with water, and also because the production was superb: Crisp, clear, beautiful to look at and easy to follow. If you're interested, here's the New York Times review, in which Ben Brantley called it "a captivating production."

The audience gave a rousing round of applause at the end, probably feeling more appreciative because of the rain delay.

We will be back next year.

Saturday, July 23, 2011

Exjade and other excitement

Inspired by PJ's post that seven months of Exjade had finally lowered her ferritin levels to normal, I asked Melissa at my last appointment if I should restart.

The stuff had upset my stomach, and they had given me quite a long break, but she said yes, I should restart. I placed the bottle on the counter and eyed it for a couple of days, and earlier this week I decided to give it a try. You dissolve five tablets in water, chug it on an empty stomach, and wait 30 minutes to eat.

It doesn't taste as bad as Kayexalate, the powder I dissolve to lower my potassium level. That stuff has the grainy consistency of sand mixed in water. But it doesn't make me queasy the way Exjade does.

Still, as PJ and I discussed, it's something I can do for my liver, where ferritin is stored. I can't do anything about the GVHD in my liver (except continue taking my prednisone) but I do have control over this.

The other day after I drank my first glass of Exjade, I immediately felt like I was going to throw up, and I lay on the couch talking to PJ until I felt better.

The same day, like a mad dog or an Englishman, I played two sets of tennis under the (hot hot hot) midday sun. I didn't plan it; I am playing with a group of women who play from 11 to 12:30, and I didn't want to bag out. It was actually fine for most of the time, except near the end we were all tired hitting terrible shots and confessed to thinking the same thing: "Can we stop now?"

We ate some watermelon, drank a lot of water and went on our way. There was no long-lasting effect.

Respectful of the heat wave, I haven't tried running. I even skipped a dog walk one day. Yesterday, however, I did walk Maddie in the morning, around 9:30. I thought it was early enough, but I came home dripping with sweat and not feeling well.

This morning it took a while for the sun to come out, so under cover of clouds, I took her again around the same time. It was much better, so I tried jogging a short distance. She's mostly good about it, but it's hard to get far with her on the leash, what with sniffing and needing to say hello to people.

I don't let her to go over to everyone, but she seemed to really want to stop to be petted by a nice older woman who had just walked. She said she lives at a nearby retirement village and goes once around each lake on most days.

She was very worried about the fact that there are lilies on the lower lake, a sign, she said, that there is something wrong with the water. (She was going to ask somebody official about this.)

Plus, although the nasty goose is still there, she said the ducks have moved to the upper lake. I can't say I have noticed, but when I walk there I'm not looking that closely for runaway ducks.

I kind of lost track when she was telling me a story about watching the mother feed the babies, but still, I enjoyed our 10 minutes together. You don't have these little conversations if you are dogless and concentrating on running.

Wednesday, July 20, 2011

Closet shopping takes you places

I wanted a new dress to wear to a benefit, and I saw a really pretty one in a window.

But in an effort to watch my money go other places than out the window, I decided to closet shop instead. Those of us who are lucky enough to afford a lot of clothes often share the same lament, "I have so many clothes but nothing to wear." We wear a hand-full of things and then just stand there staring blankly at the rest, feeling like we have no idea what to do with it.

I once read in an advice column that if you haven't worn it in two years, out it goes. But that's a scary thought: What if all of a sudden you remember why you loved something years ago and really want to wear it now? Sometimes, of course, you give things away without a thought or you think good riddance (that happened with the calf-length blue scoop-neck dress with the belt that I wore to court on the day of my divorce), but sometimes it's just when you give something away that you want it back.

The other day, a sleeveless rust-colored silk knee-length dress caught my eye. I used to wear it all the time but haven't worn it in years. Why would I? I haven't had many places to go. A black silk jacket was on the hanger over it. I pulled them both out.

The jacket had small shoulder pads that are slightly out-of-date, but I put it on with the dress...and they were both so light I felt like a was dressed in a cloud. I felt pretty. (Unless I looked at myself too closely in the mirror.) And like few things from years ago, the dress felt just like it did when I looked at it with my mother and we both agreed immediately it was "me."

When you look through the stuff in your closet, you are also looking at memories.

I remember strolling down Third Avenue in New York with my mother and my boyfriend, probably 10 years ago. The store where we saw the dress was on the southwest side of the street. He stayed outside drinking a coffee, and since we didn't linger inside, he was in as good a mood as we were when we continued our walk.

On the day that I pulled that dress out of my closet, I looked around a little longer than usual. My eyes settled on a pile of T-shirts that I had put on the floor, unable to figure out what to do with them. They're hard to ignore, but sometimes that's just what I do.

I pulled out an ugly black T-shirt with orange lettering that I had bought in February, 2005 when visiting The Gates,  one of Christo and Jeanne-Claude's huge projects in which they erected 7,503 vinyl orange gates along 23 miles of pathways through Central Park. Staffers gave out little orange squares made out of gate material, and I still have mine on my dresser.

You could see the fabric flapping in the wind from our apartment window, and my mother had peered out and said, "I think I'm looking at my laundry."

Still, we went out and walked through, enjoying the spirit of the community event.

The T-shirt stayed.

I picked up a faded green V-neck T-shirt that I had worn all the time in the hospital. It was a comfortable alternative to the horrible hospital gowns, and I wore it either with soft yoga pants or blue hospital pants.

"There's really nothing wrong with it," I thought. "I could wear it now."

No way. The association was too strong.

Well, maybe I should save it in case I land in the hospital again.

Not necessary, I thought. You'll find something else to wear.

Into the giveaway bag it went.

Saturday, July 16, 2011

To glom, or not to glom

I can't speak for everyone, but I imagine that for most, when something really bad has happened to you, you come across land mines everywhere that can set off anxiety about whatever it is that you fear.

With time, you hopefully learn to dodge them.

I thought about this while interviewing a doctor for a newspaper story I am writing (more on this later) that involves me and other people as well. It's basically a health and science story, hence the doctor interview. We hit it off right away over the phone; I liked him a lot and he gave me good information. Naturally, I summarized my history of the four transplants.

He was very encouraging and said he thought I'd do extremely well. Then he said, "The only thing that gives me trepidation is that you relapsed the first time after 3 1/2 years."


Please nobody tell me about trepidation.

He then modified his statement by telling me what I already know, that my first transplant, using my own stem cells, was not therapeutic in terms of keeping leukemia away, while my last one, with Denise in there to fend off invaders, is another story. (Thank you Denise. I provide the coffee and cake and cheer you on, while you do the work.)

I know that he's not my doctor and doesn't know my case, and all that, but still, a word like "trepidation" can be one of those land mines.

You step on some of them so quickly you don't know what's happened, but you can avoid others. I realized that in this case I had a choice. Obviously it bothered me, or else I wouldn't be writing about it,
but I saw its potential and tried hard not to go there.

I think it worked pretty well.

Tuesday, July 12, 2011

Good tennis, good counts

Ben and I enjoyed our second annual trip to the Hall of Fame Tennis Championships in Newport, R.I., Sunday, watching 6'9" John Isner defeat 5'6" Olivier Rochus 6-3, 7-6 (6) on Newport's grass courts.

The setting is so intimate that, in addition to seeing the players up close and personal, you get to keep an eye on all the other action, such as the tiny ball boy who seemed to put a big effort into jumping to give Isner a towel.

Isner has one of the fastest serves in tennis (140 mph), and you could practically hear it whiz through the air. On occasion, his serve did something wacky and still stayed in, and he turned to give our section a funny smile, which earned a ripple of laughter.

Rochus, who is from Belgium, is the shortest player on the tour; Isner, an American, is the second tallest (6'10" Ivo Karlovic of Croatia is the tallest). When we are tossing our trivia around, Ben and I will now be able to say that the match we saw had the greatest height differential in an ATP World Tour final. (Yeah, I'm sure this will come up a lot).

The day also included lunch at a restaurant with a view of boats on the water and a drive into Newport with spectacular views of Narragansett Bay. Also, of course, it was a great to spend the time with Ben.

So that was Sunday.

Yesterday, Katie drove with me to Boston for my appointments at Dana-Farber. (As many parents know, travel time is a great time to catch up with a child, so I enjoyed the ride with her. Next time I'll get Joe.)

Everything went well.

I spent a lot of time dozing in chairs while waiting to be seen; the new building was supposed to improve wait times, but I guess they're not there yet. Anyway...

My counts were good, with the caveat, when considering the platelets, that they're OK for me:

WBC: 9  (normal=3.8-9.2)
Hemoglobin: 11  (normal=11.9-15.0)
Hematocrit: 31.6  (normal=34.8-43.6)
Platelets: 76  (normal=155-410)

The platelets are about the same as at my last visit, six weeks ago. I asked Melissa why they weren't going up; she said they are not concerned and that there could be several (benign) influencing factors.

When glancing over the counts back home, I did almost fall off my chair when I looked at the ferritin level: 6,766, very high when considering that normal range is 10-170.

I knew that from all my transfusions my level of ferritin – the protein that stores iron in the body – was high, but frankly, I had never asked how high. I had been taking daily doses of Exjade, a drug that decreases ferritin levels, but I took a break while dealing with other matters. (I was happy to stop because it's a pain to take. You have to dissolve five pills in water, chug the stuff down and then wait half an hour to eat.)

Melissa said my level is actually lower now; it was around 10,000 at one point. But she said it's as good a time as any to restart. So here I go.

I also met with Dr. Laura Goguen, the surgeon who operated on my tongue. She said it is healing very nicely. She also said my continuing discomfort makes sense due to the number of nerve endings on the tongue, but there's nothing much to do about it if I don't want to pop Tylenol all day. At least at this point it is more background noise than sharp pain the way it was in the beginning.

After the long day in the car and at the clinic, I went for a run when I got home. It was still pretty hot and humid, but it felt good to move. I went about 2 1/2 miles, which included twice around the lake plus there and back. Dripping sweat, I came home and walked Maddie probably another half-mile.

You don't normally think about it when your feet don't hurt, but I am still so close to the experience of them killing me that I appreciate the absence of pain.

I think I will maintain the 2 1/2 miles for a while and then add another half when I'm confident that all systems are in order.

Saturday, July 9, 2011

The fear that lurks beneath the surface

I'm having a wonderful summer.

And yet.

The other night I had a nightmare in which the purple spots I get on my arms also appeared on my face. Then, like in a horror movie, tiny red specks formed on my forehead, and blood began to spurt from them.

It was a sure sign that I had relapsed.

That's it. I'm cooked, I thought.

The fear was visceral.

I awoke during one of the worst thunderstorms in recent memory. Maybe the noise stirred something deep within me.

It could also have been from suppressed check-up anxiety. I have an appointment Monday at Dana-Farber after my longest hiatus, six weeks.

But who knows why this fear arises to rattle us, whether we're sleeping or awake.

I wonder if it ever goes away.

Tuesday, July 5, 2011

Taking baby steps a little faster

It was still muggy Monday, but I wanted to try a run, so I waited until around 7:30.

These long days are the best for not feeling rushed. I walked the mile loop with Maddie and then left her in the house. I reached into my dresser drawer for a T-shirt to run in and then on a whim rummaged around and pulled out a tank top made of wicking material that, unlike cotton, doesn't stick to your skin when you sweat.

 So? I used to wear those shirts when I was a "real" runner. Just putting one on increased my confidence.

I jogged to the lake, and instead of doing two miles as I had planned in the morning, I decided to go a slightly shorter distance and try to increase my speed. Since I am jogging so slowly that it's sometimes hard to tell the difference between my pace and a fast walk, picking up speed doesn't mean going very fast.

I guess you have to start, I mean re-start, somewhere.

I pinpointed a tree a relatively short distance away and then ran to it as fast as I could. Then I resumed my regular pace until I was comfortable, picked another tree and ran faster to it, and so on. My foot felt fine, and I was not out of breath.

 I started to think that maybe I could run the post-Thanksgiving Talking Turkey race in Holyoke with Ben this year. (Well, not with Ben, but go with him to the race.)  After all, I did run six miles in Philadelphia May 1, but I'd like to try the same distance again without breaking my foot and falling.

Wow, I thought, I'm actually thinking of the future without wondering if I'll be alive to run the race; instead, I'm wondering if I will be in shape. Two-and-a-half years out, I actually have been doing this kind of forward-thinking a lot more.

This is a good feeling, but those of us who are superstitious know that you can't go too far in the planning and assuming direction. You're afraid of jinxing yourself. It's kind of like being pregnant and  holding off on delivery of the nursery furniture until the baby is born, just in case the unspeakable happens. I think that is a Jewish thing. But I digress.

I finished my route yesterday by running very slowly but with relative ease up the small hill leading to our house. I was sweating so much that I thought I would never stop.

It was after dark when I finally got around to throwing something together for dinner. I was on my own, so I could revert to waiting that long.

Fourth of July fireworks went off in the distance.

Monday, July 4, 2011

Hello bike

Yesterday I planned to walk Maddie first and run after, but after a lap around the lake with the dog, I realized it was so humid that running would feel terrible.

It was finally time to take out the bike.

Poor thing. Yes, I know it is an inanimate object, but I did feel sorry for it.

I have totally neglected it since last spring. It was covered with spider webs, pine needles, dust and leaves. I took a gardening glove and wiped it off. I oiled the chain, put air in the tires and deemed it ready for a test drive.  It needs a professional tune-up, but I didn't want to invest the money if I couldn't ride it.

I had tried last spring, when, not having the strength or flexibility to lift my leg over the bar on my bike, I rode Katie's slightly smaller one. But I never got far. I didn't fall off the bike, but I lost my balance and fell several times when walking. It was my Gumby period. My legs, not yet fully recovered from all that time in bed in the hospital, were further weakened by the prednisone, and I couldn't even walk straight. So it was bye-bye bike.

I took out my own bike yesterday because I feel strong and balanced enough to ride it. I rode a short distance and practiced getting on and off, near grass in case I fell. Check. And then I just started to ride. It's a little difficult around here because of the hills, but I took a route that wasn't too bad.

Wheeeeee! That's the sound of me pedaling on a straight-away or going downhill. I felt like shouting, "Look, Ma!"

The sound of me going uphill was not so pretty, but hey, at least I did it without getting off.

When I got home, I high-fived Joe and Katie.

Friday, July 1, 2011

I have a new idol

Some of us look at younger people and feel envious, wishing we could be like they are.
(OK, maybe you never do, but it does happen to me.)

On Wednesday I wished I could be like Mrs. Hannigan, who is thirty or so years older than I am, give or take a few. I think George said she is a retired teacher.

To back up. I went for the first time to George's Wednesday morning clinic at the Holyoke Canoe Club, a beautiful place on the Connecticut River that traces its origins to 1885. Once you enter the club's grounds, tucked away behind Route 5, you pass a Victorian clubhouse that saw better days in the years when Holyoke flourished, but the tennis courts (eight clay and two hard) are in tip-top condition.

About a dozen players showed up for the Wednesday clinic from 9 a.m. to a little after 11:30. George had told me about this group. He said some have artificial body parts, so he sometimes makes up creative drills tailored to their abilities. I was unsure what to expect.

He gave newcomers a brief introduction.

"Everyone, this is Ronni," he said. "She plays around the world...Holyoke, South Hadley, Longmeadow, Enfield." Ha! Small world. But I do cover some distance, tennis-wise. (My longest trip is about 45 minutes to Enfield, Conn.)

He introduced all of the players by their first names, except for Mr. and Mrs. Hannigan.

Mrs. Hannigan is a small, wiry woman with wavy white hair. She stoops a little. Mr. Hannigan, also white-haired, has a bad hip. He hardly moves. I sized them up skeptically.

We did a drill where we hit cross-court with a partner, then rotated one spot to the right so that everyone eventually faced everyone else. I started out with Mr. Hannigan. Without moving, he returned a lot of balls.

But Mrs. Hannigan was the biggest surprise. George's big thing is the slice, which is natural on my backhand but not too pretty on my forehand. She sliced everything perfectly, high to low, the ball spinning backwards over the net. I missed some balls just trying to study her swing. She sliced, the ball spun backwards and died.

When it was time for us to rest, George put out cones for another drill. He gave Mrs. Hannigan the job of putting balls on all of the cones so that we would have a target.

"Mrs. Hannigan gets restless," he said. "She needs something to do."

"Thank you," she said, jumping up while the rest of us sank into our chairs under the hot sun.

Then came time to play. My last partner of the day, Jane, had already played both Mr. and Mrs. Hannigan. She said he is ambidextrous, quickly switching from his left to his right hand before his opponent even notices what's going on. I would have liked to see that.

Jane and I faced George and Mrs. Hannigan. She hit so many short angled slice shots that I told Jane maybe we should move closer to the net.

"Then she'll just lob us," Jane said. "I've seen it."

And that she did, hitting up, up, up over our heads to a spot that I might have gotten to 20 or so years ago. At that point I was getting a little loopy, and I burst out, "I want to be Mrs. Hannigan!"

She allowed a small smile, reminding me of our eighth-grade math teacher, Mrs. Casey, who put up with us and seemed to hold onto hope that eventually we would get it. We thought Mrs. Casey was really old, but she was probably in her 60s. She was big into "The Little Engine That Could."

Mrs. Hannigan was similarly encouraging.

"You can do it," she said.

Maybe when I grow up.