Katie and I took our third annual trip to Shakespeare in the Park earlier this week, enjoying it just as much as the other times.
The play, of course, is the thing, and we saw a wonderful performance of “As You Like It.” But so is waiting in line for five hours with other people forming a long, snaking line through the park to get their free tickets when the box office opens at 1. It wouldn’t be the same without the line. When you get those tickets, you feel as though you really earned them. Plus, you are a part of a great New York happening.
We got there with our chairs and books a little after 8, but other people were there way earlier; those at the front of the line said they had arrived at the park at 5:30 to be first in line when the park opened at 6. This seemed a little extreme. We could tell from where we were that we were “safe” and would get our tickets.
Five hours passes quickly. Dogs and people parade in front of you. A musician serenades. You make friends with the people around you. We were not prepared for the cold, and an older couple in front of us lent us their blanket.
When you’re hungry for lunch, you order from a menu from a Columbus Ave. deli. You just have to say you’re “on the Shakespeare line,” and soon a guy on a bicycle arrives with your food. (You give him your cell phone number so he can find you.)
After you get your tickets (two per person), you have the afternoon to do whatever you want before returning at 8. We were staying downtown on West 16th Street with Serena. Katie really wanted to run in the park, so she took the subway back uptown to 81st Street and then back down again. (An expensive run.) I went for a short run along the west side walkway, where bikers, joggers and walkers can enjoy a view of the Hudson River.
The weather held out (last year it poured) and we loved sitting under the stars watching the show ¬– which had banjo music by Steve Martin! The characters were conceived as a group of rustics and royalty in a country setting, with the Forest of Arden created from scenery and the natural setting in the park.
It was a great visit but tiring. Down the subway stairs, up the stairs, down and up again. Into the park, across the park (to have a nice lunch with Pam) back across the park again…you get the idea. I took a couple of naps, including a catnap on a park bench on the way back from lunch.
Katie wants to go again in July or August to see the summer’s second production, Stephen Sondheim’s “Into the Woods,” starring Amy Adams. We might just do it.
And now for the parking report. When we drove in we found a free space on Serena’s block, but I was disappointed because it was on the wrong side of the street, where I would have to move it for street cleaning Tuesday morning when we needed to be in the park. That night after we went to visit Marge and Bill, we saw a spot on the correct side of the street (i.e. street cleaning Monday and Thursday). Serena stood in the spot while I, with my heart racing, ran to move the car. I got the spot, which was good for Tuesday and Wednesday. I was so happy that I sat in the car for a while and made a phone call. And as I went into the apartment I looked up and said, “Thank you, Daddy,” certain that my fellow parking enthusiast had guided me.
Free parking, free tickets and free lodging (thank you Serena) and a wonderful show. Can’t be beat.
People have been reminiscing about their feeling that they knew Nora Ephron, the writer who died yesterday at age 71.
Her witty and acerbic style and her ability to tackle serious subjects with insight and a light touch spoke to many people. She was a friend who took my anxiety about my last child leaving home and turned it into a perfect, funny and sad and ultimately comforting little story. As my forgetfulness has increased with age, I've said to people "I remember nothing," the title and opening essay of "my friend's" last book of essays, published last year. When she wrote that she had found the perfect bag – so ugly it was cool – I went to the transit museum in Grand Central Station and bought the bright yellow plastic MetroCard bag. When I tried to describe what I was looking for, the salesperson said, "Oh, the Nora Ephron bag." I get compliments every time I use it.
At the end of "I Remember Nothing," she wrote a list of 10 things she won't miss and 10 things she will miss. She said she would miss Shakespeare in the Park. I read that to Katie. How profound, I thought. We love Shakespeare in the Park too.
Looking back, the writing of such a list makes sense. I read today that Ephron learned in 2006 that she had acute myeloid leukemia, but kept it quiet. She actually died of pneumonia, a complication of AML.
I had another shock of recognition: She had the same cancer that I had. When I hear of someone who has died of AML, I get a sickening feeling. I guess it's part of PTSD, a jolt reminding me that this fast-moving cancer can be deadly. As if I didn't know. I imagine that people who fought or are fighting other cancers might react in the same way.
A reality check was in order.
"You're not Nora Ephron," Barry said.
"You don't have leukemia," Katie said.
Of course I know these things, and some day I hope I'll internalize them.
But for now, I'm glad that I have such good friends and family who will say them for me.
Smiles and sunshine were in abundance yesterday at Ben and Meghan's engagement party at the New Canaan, Conn. home of Meg's aunt and uncle, Carol and Peter McKeever.
The party was a chance for the Toumey and Doody families to get together. I hadn't seen Meg's sister, parents and brother since Fairfield graduation, and I hadn't met some of her relatives and friends.
Everyone got along famously. Because the weather was so nice, we were able to eat outside on a terrace overlooking a beautiful big lawn. Her family told me how happy they were to have such a wonderful young man marry Meghan, and I told them how happy I am to have wonderful Meghan marry Ben. Her father made a toast that included this information: 301 days until the wedding. You could figure that out, or I could tell you that the date is April 20, 20013.
People were taking pictures in every possible combination, even taking pictures of people taking pictures.
I think I might have African Sleeping Sickness...either that or the heat is getting to me.
Since I haven't been to Africa, I'd say it is a good bet that the cause is our heat wave. We have air-conditioners in the den and dining room and in our bedrooms; I try to wait as long as possible to turn the downstairs ones on so that they are not going all day. Yesterday I read that ACs contribute to global warming, so I waited even longer.
As I sat in the kitchen trying to write, a cup of coffee by my side, I fell asleep in my chair. I woke up with a start as I was starting to list to one side.
My favorite activity these days is lying on the couch. I've dozed off there too, but that's better than sitting in a chair.
On Wednesday, I went to George's clinic at the Canoe Club. We did drills from 9 a.m. to about 11:15, and then it was time to play. By then I had had it. Truthfully, I felt the heat earlier, but I thought I would stick it out along with the nine other people who were there. I "wimped out" at 11: 15. Either that or I made a good decision. Eight people stayed to play doubles, many of them older than I am. I got a Coke, went home and headed for the couch.
Yesterday I didn't do much. I took Maddie to Jim and Jane's to pick up a fax that I had had sent to them (because I don't have a fax machine). Maddie ran in, grabbed Jim's shoe and ran around with it until Jane sent her outside to play with their dog, Blue. While we chatted, I sunk into their couch.
I walked Maddie around 8. She's been lying on the floor and has not asked to go for a walk as she usually does. (Although she does of course do her business in the wooded area behind our house.) I guess she knows it's no fun out there.
I put on the sprinklers after the sun was off the flowers and tried to reposition them with the water still going. Hold sprinkler in the other direction, put it down, get ready to sprint away...and get soaked when you don't get out of the way fast enough.
It sprayed right into my face. Wheeeeeeee! That was fun! And it was a great way to cool down. Forget turning the water off before you move the sprinkler. It's much more fun to get wet.
My friend Deb Doner shared the three-hour-shift with me. We put our chairs in the shade on a perfect spring day and enjoyed the beautiful view, greeting the golfers as they came through.
I got really tired from playing tennis and being outside all afternoon, so afterward I went to my friend Korby's house, which is near the golf course, and crashed on a bed upstairs. Kids (relatives of hers) were splashing and screaming in the pool downstairs, and at one point someone came into the room, but I slept through most of it.
From there I went to the dinner at Chez Josef, sitting at a table with Korby's family. The dinner is always fun, and the food is very good. There was no need to fill out a calorie count yesterday, because I'm sure I went way over.
The speaker was a young woman who got cancer while in high school. She talked about all the good friends she made while being treated at Childrens Hospital Boston and about the excellent care she received. She also said she is three years four months out – the same as me.
I'd like to volunteer again next year. Helping Dana-Farber while sitting outside with a friend on a beautiful day if fine with me.
It was wonderful seeing my nephew Sam graduate from Newton South High School last week. It was even better to see the pride in his parents' eyes.
Sam will attend Lewis & Clark College in Portland, Ore., in the fall.
Afterwards, we want to the Island Creek Oyster Bar in Boston for dinner. The oyster aficionados ordered three different types of oysters and were in seventh heaven. I slurped one down and decided to leave my share to the people who really like them, but there were other things to eat.
David's brother and sister and their spouses and children were there. It was a great celebration.
David, Lily, Sam and Diane before the graduation.
At the restaurant, left side, Diane, David's brother Rick, Sam, me, David's sister Suzanne and husband Carlo and their daughter Sophie. Right side, Tony and Giancarlo Bonomo, David, Rick's wife Mel, and Lily.
Dr. Alyea read from the computer the time since my transplant. He does that occasionally, and after he read it at my checkup on Monday, he pronounced me "doing great."
Actually I know how long it is, because I sometimes count the time, although not up to the number of days. Mentally turning my life into a Broadway show, after the visit I hummed the song "Seasons of Love" from "Rent" and tried to fit my time-line into the words of the cast singing "the measure of a year": Five hundred twenty-five-thousand six hundred minutes.
"Three years, four months, 11 days" doesn't exactly fit, but I've been singing it anyway.
Of course I'm not in a Broadway, but I was videotaped Monday by a cameraman from NESN for a TV spot to run during the Jimmy Fund Radio-Telethon Aug. 21-22. He shot me getting my vitals taken and then going into a room and being greeted by Dr. Alyea.
It was no big deal, but it made me nervous, and my blood pressure shot up. After vitals, they followed me to an exam room. They were waiting by the door when Dr. Alyea came in, shook my hand, gave me a big smile and asked how I was doing. But they needed to get the shot from inside the room, so he had to reverse and do it again. They filmed while we were talking...not about my health but about Rafael Nadal's victory at the French Open, which I had seen at 7 a.m.
Then they left, and he pulled my counts up on the screen. Everything is fine: hematocrit and white blood count normal and platelets still pokey but stable in the 80s. Liver enzymes are still elevated, which means I stay on 5 mg. of prednisone.
I mentioned that I had lost weight, and he checked it out on the screen and saw that I had. He said if you lose weight and your blood counts are fine, there's nothing to worry about except for maybe needing to eat more, especially since I exercise so much.
So he said I should keep a calorie count for two weeks and e-mail it to him to make sure I did it. Calorie count? I never even think about calories, and until I looked it up, I had no idea what my daily intake should be. I hope this doesn't sound obnoxious to those who struggle with their weight. I've had my share of problems, but I have my father's build, and other than a few pounds here and there, weight has never been an issue.
So...I kept track of yesterday and today and sure enough, yesterday I was below my goal until Katie came home with ice cream for me. Today I was below also, but I'm sitting here eating cookies, which will probably push it over.
You don't want to fill up on junk food – probably a protein shake would do the trick – but it is a good excuse.
I am trying to decide what to wear to my checkup tomorrow at Dana-Farber.
The satorial question tonight is of greater concern than how my counts will be, although as usual, when I go into Dana-Farber tomorrow, my test results will be on my mind, and I will feel those familiar nerves while waiting for them.
Tomorrow's visit will be different than the others because I will be filmed by NESN (New England Sports Network), checking in and greeting Dr. Alyea. It's all part of my upcoming participation in the WEEI/NESN Jimmy Fund Radio-Telethon, in which Dana-Farber patients, parents, doctors, researchers, athletes and celebrities speak about what Dana-Farber has meant to them. It will air Aug. 21-22.
They were looking for a long-term survivor, and Saul Wisnia, my editor/friend at Dana-Farber, thought of me. NESN also plans to come to my house to interview me and film me running. Don't know when that will be.
It's exciting and a little bit scary. Ben, Joe and Katie will come with me in August because they invite family members to participate. We'll see a Red Sox game and schmooze with some players.
I have to be in Boston at 10:30 tomorrow for my blood draw. Also I am getting up early to see the rain-delayed men's final at the French Open, which begins at 7 a.m. and hopefully will finish by 8:30 when I need to leave.
I had thought of DVR-ing it, but Joe told me that such a thing is just not done for sports. Plus if I watch it live, I can discuss it with Dr. Alyea.
It appears that we have lily bugs, formally known as Scarlet Lily Beetles.
I thought they were aphids, but when I called the garden center, the man who answered the phone asked if I had lilies, and when I said yes, he told me we have lily bugs.
That sounded sort of sweet and poetic, a little like lady bugs, maybe something you'd read about in a children's book. Actually, these tiny red things are clinging to the stems of several tall perennials. I read that they defoliate plants, so when the guy at the garden center said he had some spray that kills them, I decided I better go get some. Haven't done it yet, but even though I dislike spraying, I figure I better do it soon.
More important than the garden, we had the beginnings of an electrical fire Saturday night. Katie had just come home around 2 a.m. and heard the smoke alarm going off. I was in bed and heard it too, so I got up, ran downstairs and found that the dining room was filled with smoke. We grabbed the dog and went outside and called 911. The fire department is just two doors down from us, and two engines came within minutes. Unfortunately, they sped by while the two of us jumped up and down and waved our arms. I called again and they turned around and drove into the driveway.
They quickly determined that the ceiling fixture was the cause. They went into the basement, turned off the power to the room, and that was that. (An electrician came on Monday and took the chandelier down, and now I need to buy another one.) Katie thought we should go to sleep, but I lay on the couch shaking for quite a while. I know how serious an electrical fire can be, especially in an old house. Katie played Mom, telling me that everything was OK. I would have taken an Ativan if I didn't have a tennis match the next day, but I did eventually get back to sleep. The next day I lost the match; maybe it was because I was tired and not at the top of my game...yeah, yeah, yeah.
Tomorrow I am going to Boston for a visit to my dermatologist and then for my nephew Sam's high school graduation. The doctor was going to do PDT, short for Photodynamic Therapy, of, as I call it, the face fry. I figured it wasn't a good time to do it, so I am just checking in.
I heard tonight that it was National Runners' Day. Oops, I missed it. I played tennis and then went to yoga, where I rolled over on my glasses and bent them so badly that I had to hold down the left side of the frame so I could see. It made me feel really queasy. Holding down one side, I drove to the mall and went into the Target optical shop, kind of pathetically explaining my situation while pushing down on the left side of the frame. The woman there said they were so crooked that she might break them while trying to fix them, but I said to give it a try. She came out with them and said she thought they were still a little crooked, but they were so much better that I was totally relieved at being able so see again.
Maybe it was the running gods' way of getting back at me for playing tennis instead.
Before I leave town tomorrow I'm going to go for a run to make up for it.
Katie had kept a few special dolls from her childhood, and recently she decided it was time to give them to some little girls who would play with them again.
She said the dolls were looking at her accusingly, as though they didn't want to just sit around anymore.
So last night we took them over to Mike and Ellen, parents of girls ages 3 and 4 and a boy age 2.
Molly is an American Girl doll. I read Katie the books about Molly growing up. They were actually good little books. In hour house, she didn't get around as much as the other two, Amy and Holly. When we went on vacation, Katie strapped them into the back seat. True confessions: I liked having them around, with their lifelike eyes and Amy's long shiny brown hair. (Holly is a baby, so she is bald.)
Yesterday I had them wave goodbye to Joe, who was not touched.
"Would you two get in the car?" he asked.
I put the dolls in the back seat. Katie said, "That's unsafe!" and then buckled them in like she used to do.
The kids really liked the dolls and carried them around all night. We had brought a wicker chair for Molly. Four-year-old Maeve took the doll and the chair upstairs and then sat her in the chair and found her a footstool. Three-year-old Mairead took Holly to bed.
Katie was happy that she had done the right thing for the dolls and that they were starting a new adventure.
I looked down at Molly with her new children and said to Katie, "She seems to be smiling more now."
The scary thing it that I meant it.
"You know," I said, "Dolls really bring out the child in the mother."
She replied, "And they bring out the mother in the child."
This blog is about falling down and getting up, coping and coming back after four bone marrow transplants for Acute Myeloid Leukemia, or AML, starting in 2003 when I was diagnosed after feeling winded while running a 10-K road race. I have three children, Ben, Joe and Katie, and one Labrador retriever, Maddie, short for Madison, as in Madison (Ave.), in honor of my hometown, New York, New York.