Sunday, March 31, 2013

Travails of a turtoise

I'm trying to get to a point where two miles comes more easily to me, so today I set out with the best intentions.

Two miles of course is not very much, but it's an improvement over the mile I had been running. I'd like to get back up to five.

I'm not supposed to run around the upper lake, what with its hazardous stones and roots, and now mud, all along the path. But I had walked there earlier in the day with Maddie and Meryl, and it hadn't looked too bad. It's prettier there than on the paved lower lake, so that's where I wanted to go.

I run so slowly that sometimes I think I might as well be walking, but I am actually running, so for now it will have to do, and I can get faster when I feel more comfortable.

I ran to the upper lake and started running around it. I passed "my root," the one that I tripped over this summer. I was very proud of myself and thinking about the blog post I would write. Then I came up to one of the mud trenches that are in the middle of the path at some places. Instead of running around it, I forgot to focus, AGAIN, and my left foot landed in the mud. I lost my balance, and, guess what, I fell. I landed in the leaves alongside the path, surveyed the damage, and decided it wasn't bad, although my right elbow hurt where I fell on it. I owed Emily a call, so I stretched out on the ground, looked up at the trees, and called her. Actually it was kind of pleasant lying there.

Five people walked toward me, and, realizing I might have trouble getting up, I asked them for a hand. They looked concerned, asked if I was OK, and said they thought I was on the phone calling for a help. Two of them pulled me up, another brushed me off, and I brilliantly decided to get the rest of my miles in. Actually, I was slower than slow and not 100 percent steady, so I walked back most of the way and threw in a little jogging because I really wanted to get home.

My elbow was bleeding and had a big black and blue mark on it, and my back hurt.

Emily said that in the 20 days before Ben and Meghan's wedding, I need to stop running and get on one of the machines at the gym instead. So boring, and you have to get in the car to drive there, bla bla bla. But it makes sense...unless I fall off a machine.

Friday, March 29, 2013

A little of this and a little of that

The car successfully parked right across the street from Serena's, with no money needed for our whole three-day stay (I am still gloating), Katie and I proceeded to do a little of this and a little of that in New York.

On Monday I just curled up in my father's yellow chair – one of the many things that Serena has from our apartment – and made a cup of hot chocolate and read. Katie went to Brooklyn with her cousin Amanda, and I was happy to avoid the elements for the day. That night, we went to an overly-priced tapas restaurant, bringing back memories of Spain despite the bill.

On Tuesday, we had breakfast with our friend Harriet, who has a special connection with my mother,    and then walked to the Met. I had felt bad on our visit to Paris that we didn't have time to see the impressionist museums, but the museum visit on Tuesday made up for it. We walked through the impressionist rooms but spent most of our time at a special exhibition, Impressionism, Fashion and Modernity,  placing together important works of art and displays of fashions, showing the link between art and fashion during the 1860s and 1890s, when Paris was becoming the fashion capitol of the world.

You couldn't help but ooh and ah at the dresses in their glass cases and echo the women whispering, "I want that one."

Back in reality, we walked from the museum at 81st and Fifth down and across to 53rd and Lexington, where I met my friend Pam for coffee and Katie took the subway back "home." Our walk fit the description of "pounding the pavement," and right near the end my knee buckled. After that I had wanted to go running again, but Katie wisely gave me the lecture about not running if I am hurt, and I actually listened.

Tuesday, the second night of Passover when I might normally be going to a seder, I have to admit we went out for Italian food with Jeanne and Amanda. We loved being with them, and that was the most important thing.

Finally, on Wednesday, we went to a matinee of the Broadway show "Newsies." I was skeptical, but I ended up really liking the show, mostly the dancing by an incredibly talented cast of young actors who lept through the air, combining ballet with tap dancing and circus art.

Tomorrow, the only day we could get people together, I am doing a late seder. Actually, if I waited one more day, I would be in sync with the Orthodox Jews who observe Passover at the beginning and the end.

It will be nice for Katie to set the table with my mother's beautiful silver and have everyone gather around.

Monday, March 25, 2013

Celebrating the art of parking in New York

Hello from New York. Katie and I are here on our winter/spring trip to see a show, visit some people, go to a museum, run and eat out.

Although it's spring, the weather is awful, with cold gusty winds and snow flurries alternating with rain. We braved the elements this morning to jog on the path alongside the Hudson River, and, interestingly, I found it easier that at running around the lake at home. That's because at home, I know exactly how far I'm going and always have to decide if I'm going to run another loop around the lake or not. Here, I just took off in a straight line and didn't try to gauge the distance. Also, the change of scene helped.

Yesterday we ate our way down from Massachusetts, stopping at my cousin Peter's in Riverdale for over-stuffed deli sandwiches and then proceeding to Aunt Marge's, where we had Chinese food. After that, we just had to wash all this food down with frozen yogurt.

This morning I played the New York parking game, which was successful, although at times my heart raced.

Alternate side of the street parking was in effect, despite the bad weather. I was like a kid hoping for a snow day, only I was hoping that the parking rule would be suspended so I wouldn't have to sit in the car for an hour and a half. We had parked on the side of the street where parking was not allowed between 8:30 and 10 a.m. Monday and Thursday due to street cleaning. Uptown where I grew up, the window was only a half an hour, but down here on 16th St. where we are staying at Serena's apartment, they really make it difficult.

I got up at 8, got my muffin and coffee and got into the car. After 8:30, everyone moved over to double-park on the right until the street cleaner came. It came about 9, at which point everyone started up their cars and began to head back to the other side of the street. This is where it gets dicey, because anyone who has not put in the work can come up the street and scoot into your space. With practiced finesse, I went between a parked truck and a car that had just moved over and maneuvered back into my space. Whew!

Then I still had an hour to finish my cold coffee and read the newspaper.

The car is now good for tomorrow...and the next day. I figure the money I saved on a garage will pay for our dinners.

Upstairs, Katie gave me a high-five. And I'm sure that up in heaven, my father, who taught me everything I know about the art of parking in New York, was celebrating too.

Friday, March 22, 2013

New therapy shows promise for leukemia

I wrote previously that when other people die from leukemia, I can't help but feel rattled by the news. People with different cancers have told me they have a similar reaction, as if one death can reach out its tentacles and pull you in.

Conversely, when you hear good news about progress in fighting "your" disease, you feel heartened. Actually, anyone, with or without a history of cancer, should be encouraged by major advances in the war on cancer such as the discovery of a new cell therapy to fight acute leukemia.

A treatment using a leukemia patient's genetically altered immune cells produced remissions when patients relapsed after receiving chemotherapy, according to the study at Memorial Sloan-Kettering Cancer Center, reported Wednesday in the journal Science Translational Medicine.

The experimental treatment was used in a small number of patients and didn't work in all of them but is considered promising for blood cancers and tumors in organs such as the prostate gland.

Hooray for progress against blood cancers!

Much like me, one of the patients who went into remission after the therapy discovered he had leukemia after going to the doctor about a sports-related problem, in his case tennis elbow. Very strange.

I was also interested to see that a New York Times story about the discovery quoted Dr.
Richard M. Stone, the Dana-Farber Cancer Institute's director for adult leukemia. He told the Times that the research is exciting and that he hoped to begin collaborating with the team at Sloan-Kettering.

Flash back 10 years ago, right around this time in March.

I got the call with the bad news on a Friday after returning from tennis. In a daze, I went to work. I had a story I wanted to finish, but the day was interrupted by people calling to tell me NOT to get treated locally at Baystate Medical Center, as I originally thought I might. They all wanted me to go to Boston.

It was close to 5 p.m. when Diane's sister-on-law, a doctor, told her to call Dr. Stone at Dana-Farber. At the same time, a physician friend of my parents also told me to call Dana-Farber.

Diane and I were talking about this yesterday after we had both read the story.

She called his office, and miraculously, he picked up his own phone, saying, "Stone here."

What doctor picks up his own phone ever, let alone at 4:55 on a Friday? Maybe he was waiting for me. He asked her what my blood counts were, and she said she didn't know. "You better get her in here before she bleeds to death," he said.

I called Stone, who said he wasn't taking new patients and referred me to his colleague, Dr. Daniel J. DeAngelo. So I called his office and miraculously again, his secretary picked up her phone. She said I should pack my bags and go to the hospital Monday. Obviously they didn't think I would bleed to death right that minute, but acute leukemia is such a fast-moving cancer that you need to act as quickly as possible.

And, as they say, the rest is history.

Wednesday, March 20, 2013

If at first you don't succeed, ask and ask again

I learned this as a reporter: If you don't get the answer you want, just keep asking the same question in different days.

I put this technique to use when asking Melissa if I could return to 5 mgs. of prednisone after taking 7.5 for a couple months when I was throwing up. The throwing up has stopped, but I am still on the higher dose. I wrote her an e-mail a while back asking if I could decrease, and she said to wait until my next appointment. That was when my appointment was April 8, but now it has been moved to April 22 to coincide with an appointment that I have with Dr. Goguen to check on my tongue.

It was good of them to move the appointment to cut down on my running back and forth, but I really don't want to wait that long to go down on the prednisone. The reason is that the higher dose seems to have contributed to an increase of the tiny white thingies on my hands, which erupt because the prednisone lowers my immune system.  True confession: I pick at them, and that makes me feel like a crazy person. I hate to look at them. I like wearing rings, and I don't even want to put them on. It's small potatoes, of course, but that doesn't stop it from being upsetting.

So today I paged Melissa and put the same question to her in light of the fact that my appointment is now a month away. And she said sure, go ahead and try it. Hooray! If I start throwing up again, then of course I will have to go back up.

My appointment will be two days after Ben and Meghan's wedding. So exciting that it is getting so close. I was offered the opportunity to pay for makeup and for my hair to be blown dry, and at first I said no because it seemed like a lot of money. I figured my hair always looks the same, and I hardly wear any makeup. Then Meghan said her mother is doing it, and it occurred to me that if I don't, I might look like I blew in from off the tennis court. So I said yes.

I told Melissa that maybe I'll leave the makeup on and show her the beautified me, and she said that sounded like a good idea.

It's nice to have healthcare professionals that you can talk to about things other than cancer.

Tuesday, March 19, 2013

Snow day

I packed all my stuff for staying overnight at Diane's after my scheduled appointment with the GI specialist in Boston this afternoon, also bringing cheese and crackers, an apple and chocolate chip cookies for lunch.

Back when we were growing up in New York, we'd take the long car ride to Greenfield to visit my aunt and cousins – a long trip before the completion of Route 91. We packed lunches...and ate them before the bridge, about 15-minutes into our five-hour drive.

So today, I ate my cheese and crackers "before the bridge," in other words before I got to the turnpike. But it was snowing steadily, and the roads were terrible, so I turned around after about 10 minutes, eating my apple on the way back. Well, at least the dog was happy to see me.

The next available appointment isn't until April 30, but since I feel fine, it doesn't matter much.

Sitting at the table with my soft red scarf around my neck, I finished a story for my high school magazine (Friends Seminary) about a graduate who is a professional cyclist.

Then I wondered, should I go to the gym? Nah. The roads are too bad.

Should I take Maddie for a walk instead of just letting her out in the woods behind our house to do her business? Nah. I might slip and fall.

OK, well how about doing Joanne's exercises at home? Nah. I did half an hour of cardio-tennis yesterday and then went to yoga so I think I'll just stretch from side to side and touch my toes, calling it a day.t

How about I stare out the window at the snowflakes falling and then fall asleep on the couch?


And then how about making a cup of coffee and sitting down to write this?

Yes again!

Sunday, March 17, 2013

Spectator sport

It was fun watching Ben, his soon-to-be sister-in-law Kerry and two of Ben's high school friends – along with some 7,000 others – run the St. Patrick's Road Race yesterday.

It was also kind of strange to be a spectator at a race that I have run on and off for more than 30 years.  Forgive me if you already know this, but I was running the race 10 years ago when my slow time led me to the doctor's office and my leukemia diagnosis. The race basically saved my life, because I caught the fast-moving blood cancer before it caught me.

Because I am always running, not watching, at first I was unsure of where to stand when Meghan and I were looking for a place to watch the start and the finish. Once we got our bearings, I got caught up in the excitement. It's hard not to. It was like homecoming weekend in the Holyoke area, with everyone milling around, drinking beer and saying hello to people they don't normally see. I actually got nervous before the race. That might have been a learned behavior, or it might have been that I was picking up on Ben and Kerri's nervous energy, or both.

I enjoyed having a house-full like the old days, what with Ben, Meg and Kerri staying here and friends coming to the door.

After the race, I volunteered to go home for a while and drive back later to pick up the crew at a bar. Inspired, I ran two miles, which is farther than I've gone. I really want my legs to cooperate so I can get back into it. The slightly higher dose of prednisone, which weakens your muscles, is making it more difficult. I e-mailed Melissa to see if I could go back down to 5 mgs. from 7.5, but she said to wait until my next appointment, which isn't until April 8. I hope the skin on the back of my hands doesn't fall off before then. (OK, this is a slight exaggeration, but the higher dose has led to more thingies popping up.)

Meanwhile, my tennis has improved since my summer of falling down and my fall of throwing up. I'm moving better on the court and hitting the ball better, but I need to win more points. I played my first match back today and lost, although we did have some good points. There are two ways of looking at this: (1) Glass half-full: I have made it back to team play and should be proud of this and will now be able to build from here, or, (2) Glass half-empty: I stink! As I am writing this, I see that (1) is the better option.

Tuesday I am going to Boston to see the GI specialist. I'll be interested to hear what he says.

Tuesday, March 12, 2013

It's the little things

When you've been sick and you finally get the big things under control, the little things can be incredibly frustrating.

Of course just because you've been through something major, you don't get a bye from the normal problems. But sometimes you just want to say, "Give me a break already."

I got plantar fasciitis, the inflammation that causes heel pain, after my first stem cell transplant when I had recovered and was running and playing tennis again. I went to the Grand Canyon around this time and while my friends took big hikes, I hobbled along the rim. They said I complained about this more than I complained about leukemia. Anyone who has had plantar fasciitis will know what I mean. It is just infuriating that an area about the size of a quarter can cause so much pain. At one point I couldn't even walk down the driveway to pick up the paper.

I wandered in the podiatry desert for way too long, going to the wrong people, including one podiatrist who gave me cortisone shots that worked only for a little while, who gave me a cumbersome brace to sleep in (which I usually tore off in the middle of the night) and who said, before I finally bolted, that he might slit the bottom of my foot to relieve the tightness that was causing the inflammation.

I finally found the right person, who made soft orthotics in his office and told me what kind of sneaker to buy. I haven't had symptoms in ages. Every now and then I get a twinge, which makes me nervous, but then I double up on my stretching exercises, and so far, so good.

I bring this up because I have a new little something. I hurt the side of my right hand, probably by mis-hitting a ball and straining my hand in the process. Mike taped it for me today at physical therapy, and although it feels better, it is still sore, and I wonder how I will do tomorrow at tennis and how I will do at my first match this weekend. It will be bad news if I can't hold the racquet.

Monday, March 11, 2013

Pain in the nose

I have been unable to coordinate three appointments that I have in the span of a month,  so today I drove to Boston and back to have my face rechecked.

When I got to my dermatologist's office, I learned that she was running at least an hour late, but since that is status quo, I came with a newspaper, a book, a blueberry muffin and coffee and set up shop at a table in the corner. When I finally got in, Dr. Lin biopsied a spot on the tip of my nose. Nice location. It  hurt when she shot a numbing medication into my nose, but what's another needle, right?

Afterwards I went to Brandeis to drop off the sneakers Katie had left at home. I parked in outer Siberia because the parking spaces near the library, where she was working, were all full. We had a short but sweet visit.

It was nice to get back while it was still light, whereas last week at 5 it would have been too dark to walk. I leashed up Maddie and went around the lake.

In a week I have my GI consult, and a couple of weeks after that, my regular appointment unless that can be moved up so I can do a twofer.

Friday, March 8, 2013

Mud slide

For today's adventure, I walked Maddie all around the unpaved lake and had no mishaps despite the path being a mess of snow, ice and mud puddles. It looked very pretty, and the new dusting of snow made it easier to walk.

But on the way back, walking on the road now, I slipped and fell in a big mess of mud on the side of the road that I hadn't seen. I almost dragged Maddie down with me.

As it was, her leash is coated with mud, and my long black coat, the sleeves of my sweatshirt and my pants are a mess. There are globs of mud on the kitchen floor where I took everything off. I guess that writing this is a way of not dealing with the cleanup.

My back hurts a little, but I am basically fine. Nothing like falling in the mud to cushion the impact.

Tonight I am scheduled to play in a tennis mixer, two hours of tennis with different partners and then pizza. I wouldn't think of missing it.

A rewarding snack makes me think of part of my impetus for going to the gym yesterday: the Tootsie Rolls that I will only allow myself to take on the way out.

As I was lollygagging on another cold gray afternoon yesterday, I sat down to look at Facebook (procrastination), and there was a posting from a former colleague wondering if he should go to the gym or take a nap. I guess it was going around.

I know that the strengthening that I do at the gym (and sometimes at home) is important, but I'd much rather play tennis or, when I'm able to do it again, go running. At the gym, I did the difficult Arc machine and then the bike when I had had enough. Then, I did some exercises on the mat, trying to avert my eyes from the girl next to me, who was lunging and lifting without breaking a sweat.

Anyway, the best part of going to the gym is when you get to stop, feeling virtuous and eating those Tootsie Rolls.

Wednesday, March 6, 2013

Sayings of the week

I am sitting here writing in my office, i.e. the kitchen table, looking out at yet another gray day and eating a handful of chocolate-covered pretzels for each day without sun. (Take that, you sugar-phobes.) I have nothing much new to report except that my writing on various projects is coming along and my physical fitness is improving.

I returned to physical therapy today to work on balance. It's a continuing effort to find balance, physically and in life in general. Two wonderful Michaels are helping me along. When I told physical therapy Michael that I'm the only who has trouble balancing, he reminded me that most people do not have my medical history. Oh, right, for some reason I forget about that.

I've been back to yoga about four times, and it's getting easier, although I still need to keep one hand on a wall while everyone else balances hands-free. I've had a couple of one-on-one cardio tennis sessions with tennis pro Michael, who said I'm moving better, although I joked that I wished that when I played, I could keep one hand on a moving wall.

Allison, who taught Monday's yoga class, had the quote of the week while we were took Warrior Two: Don't lean forward and don't lean backward, in yoga and in life.

I came up with my own observation while chasing a ball Monday: "Don't grit your teeth, in tennis as in life."

Meanwhile, my furry brown friend looks depressed. I've managed to give her a good walk most of these inclement days, when she has romped with her friends Mary Margaret and Sue Ellen, but today, with on and off rain spitting in my face and the wind swirling around, she went out only to do her business. She barked at me a few times but now she has resigned herself to curling up on her bed. Tomorrow is another day.

Friday, March 1, 2013

Ten years after

When the film "Chicago" was honored with a song and dance number at the Academy Awards 10 years after its release, I flashed back to watching it with Diane when it first came out. I was waiting for a time to open up for me to get the Hickman catheter through which I would receive chemotherapy. It wasn't major surgery, but it was my first of many, enough to make me nervous about the surgery itself and what was to come after.

The movie dark and strange, but still, it was a good distraction from cancer.

Ten years after. Other things are coming up that mark the anniversary of my diagnosis in 2003.

The St. Patrick's Race is another. That's the race I was running in March 2003 when I went to the doctor because my slow time and fatigue made me wonder what was wrong. It would have been nice to run the race this year, but I still don't have my running legs back after my falls this summer. Ben is running it, and I'll go to Holyoke to cheer him on.

In April, it will be 10 years after my first hospital admission, the beginning of chemotherapy and of course, in general, 10 years after the beginning of this strange journey.