Running for My Life: Fighting cancer one step at a time

Third birthday

2012-01-31T08:10:00.000-08:00

Emily, me and Tami

Today is my third birthday, or re-birthday, three years from the bone marrow transplant (my fourth) that saved my life.

By whatever name, I'm very happy to celebrate it by just having a normal day: writing, walking the dog, playing tennis and even paying bills and going to the store.

Thank you, Denise.

I took a little trip over the weekend to mark the occasion. It wasn't specifically planned as a birthday weekend – and we hardly even mentioned it – but it just seemed like a good time to go.

I flew to Pittsburgh and then drove with Emily to her house in the mountains outside of the city. Her husband, Mike, chef extraordinaire, met us there, and Tami and husband John came from Philadelphia.

We took a couple of nice walks but mainly stayed warm inside by the fire, doing a 1,000-piece jigsaw puzzle, reading, talking and eating. Nancy wasn't able to come, but we talked to her on speaker-phone. (I admit to making a very small contribution to the puzzle, putting a few pieces in here and there but leaving the rest to those with greater powers of concentration.)

On Sunday, I drove with Tami back to her house in Cherry Hill, N.J., and the next day took the train back from Philadelphia to Springfield.

There was a lot of travel time, but I didn't mind, because it gave me a chance to put a dent in the absorbing book I'm reading, Jonathan Franzen's "Freedom."

And so here I go, feeling good and toddling off into my fourth year.

Good/bad news on the beauty front

2012-01-25T18:19:00.000-08:00

There are times when I look in the mirror and think I look OK, and other times when I think, "You really need a little something."

Sometimes this comes from looking too closely, say, a fraction of an inch from the mirror. My mother, who didn't have to worry about looking closely because she looked beautiful until the day she died, had an easy solution: Don't look so closely.

I never wore much makeup, but on and off I have fallen prey to that need to do something, which may result from a message the beauty industry has planted in my brain. I bet I am not alone in this. Once I sat at a department store makeup counter and let them "do" my face. Knowing that I was expected to buy something, I purchased an eyeliner, then went home and washed everything off.

After cancer, if I am having a bad day, I sometimes think, "You look like you've been through the wringer."

I was in the "you need something" phase during the recent New York trip I took with Katie, and I asked Serena, who always looks good, to take me to her favorite makeup place in Bloomingdale's. I was mostly interested in an eye shadow of hers that had a natural look. Several saleswomen converged on me. They were very nice, but one especially was so overly made up that she looked a little scary.

After choosing the eye shadow, I found myself being directed to an eyeliner and blush. A saleswoman applied the eyeliner, and I wavered. Katie, the voice of reason, whispered in my ear, "No, no, no." With their pretty packaging, these products draw you to them. But my own voice of reason kicked into gear, telling me I could get a similar, and much cheaper, product at a drug store.

I got out with "just" the eye shadow and some minimalist blush.

Which brings me to the point of my post: How encouraged I was to read the headline of last Thursday's main story in the New York Times' style section: "You Can Fall Out of Bed and Look Good."

The story began on a promising note: "Goodbye, lip liners, brow pencils, spackled-on foundations. The hottest beauty trend of 2012 is imperfection."

Finally, a look that sounds pretty good...and that is actually easy to accomplish.

But alas, the story quickly takes a turn into cosmetics-land, telling us about all the things to buy, and the special way to apply them, to accomplish this imperfect look.

Second paragraph: "The new look for the new year is effortless, minimalist, just-out-of-bed-with-your-lover, according to leading hair and makeup artists...Tousled hair, smudged eyeliner, dewy lips and luminous skin are in."

You are supposed to use your fingertips to "smudge eyeliner, smear bronzer, press bright stains into your cheeks and lips."

It is a little discouraging how much makeup it takes to achieve the non-made up look, but as I read on, I realized that I have actually been ahead of the game.

My eyeliner, on the rare occasions when I try to wear it, is usually smudged.

If the slipper fits...

2012-01-24T06:24:00.000-08:00

....and you're feeling tired and you've had a long day,
then you put it on and think about getting ready for bed.

Chefs for Jimmy: Good cause, good food

2012-01-22T12:07:00.000-08:00

It was cold Friday night, and I was tempted to stay in sweatpants and sit on the couch watching "Washington Week."

But I gave myself a little push, got all gussied up (my mother's words) and went to Chez Josef in Agawam for the Chefs for Jimmy event to benefit the Jimmy Fund, which, as many people know, supports the Dana-Farber Cancer Institute, a very worthy place indeed.

I was glad I went. Like the "Taste" events held in different cities, restaurants set up stations offering samples of their signature dishes. There was a lot of good food, and I happily went around eating and talking to people who I knew...and some who I didn't know who made recommendations about good dishes they had found.

I talked for a while to Wendy Webber, one of my tennis teammates; you can see our photo in the seen@
section from yesterday's Republican or on MassLive.com. The event was held in honor of her late husband, Neal Webber, a big supporter of the Jimmy Fund.

I also bumped into my local doctor, Ronald Berger. When he asked how I was doing, I said I was great and approaching my third birthday on Jan. 31. Berger, a runner, said, "Good, just in time for the race," meaning, of course, the Saint Patrick's Race in March.

I told him I might not be ready to run it and said I was worried I would be so slow as to be left behind.

He said not to worry so much, adding, "You'll probably be the fastest bone marrow transplant recipient there."

I like that way of looking at it.

Ferberizing the dog

2012-01-18T19:11:00.000-08:00

I knew all about Ferberizing (from the book by Richard Ferber) when one of my children (no names) cried and cried in his crib and just had to be left to cry it all out.

And now my vet has told me to Ferberize the dog.

This is not a baby dog. I expected Maddie to cry as a puppy. She is now a five-year-old dog who has developed a behavior problem which actually dates back some two years.

She was crate-trained, but when we let her out, she started having "accidents" around the house. The possibility was raised that she was not trained well because her first crate was too big, so I got her a smaller one.

The crate was a success. She has two toys in there and a soft place to sleep, and when she goes in, she gets a special treat. I lost track, but I think she slept in there for more than a year. She was so good that I decided she had earned her freedom.

Everything was fine for a couple of weeks, until she left a little something on the den floor.
The next day, it was a bigger something.

When our little dog Sam acted up, it was infuriating but not as much of a mess. When this affenpinscher-poodle mix got mad at my mother, he jumped up on her bed and left a present on her pillow. A very small present.

So what's up with Maddie?

I took her to the vet for her annual exam, where she drew praise by sitting very quietly while she got her shots.

The vet gave the answer to the dog in a question form, asking, "Why are you so mental?"

She said just to forget analyzing why she did it on the floor and just keep her in the crate. "You're going to have to Ferberize her," she said.

I had told the vet that some nights she is fine, but other nights she decides she'd rather sleep on the couch. I can hear her wailing away right under my room. She cried at 1 a.m. last week, right after she had gone into the crate, and I dutifully went down to see if she was OK. She gave me a quick look, grabbed a toy and made a beeline for the couch.

After the vet visit when Maddie sat there and heard that she should not be let out until a reasonable hour, she was fine for a few days. I thought maybe she had understood the plan and decided to just go with it.

But Saturday and Sunday she wailed away again. Katie was home and lent me a pair of earplugs. They didn't work. I tried sleeping in Ben's room because it is a little farther from the kitchen, but I could still hear the noise and eventually moved back to my room, where I toughed it out.

Last night she was quiet until 5:30, which was OK because I had to get up for tutoring at 6 anyway.

Now that Katie has gone back to school, if I hear a peep from downstairs, I'm going to move into her room, where Katie says she can't hear the dog at all.

Ferberizing is exhausting work.

Goodbye brown paper bag

2012-01-14T13:45:00.000-08:00

I still have a brown paper bag that I got on April 1, 2009.

Who keeps a paper bag for almost three years?

Diane knows, because she's been joking with me about my attachment to this bag, which, alas, has got to go.

It's the bag from CVS that my nurse at Brigham and Women's Hospital gave me upon my discharge, filled with the many pills that I still take. This whole time, I've kept that bag in my closet, taking it down for weekly refills of my pill boxes or bringing it with me when I go somewhere overnight in case I forgot to put an important pill in its compartment.

I never really thought I would keep it so long, but the longer it's been with me, the more attached I have gotten. It's now as thin as parchment paper and has a few holes in it. I solved those problems by putting it in a larger bag, but it has just gotten too scrunched up to keep.

So I transferred the pills to another bag...and put the brown paper bag in a closet.

Perhaps I will need to give it a ceremonial good-bye.

It's not that I am fond of it. I guess it's mostly superstition: I've stayed well as long as I've kept my pills in that bag, so if I throw the bag out, will that jinx me?

Before you start thinking "Just get rid of it," let me remind you of the superstitions that are all around us. Baseball players perform their personal rituals before hitting the ball, goalies tap the goalposts in a particular pattern, tennis players use their lucky ball, and those are just examples of the superstitious behavior you can see. Fess up if you want to share your own.

Once when I was in a tennis tournament nearby and came home to change my sweaty top, one of my sons (I can't remember which) asked me if I had won, and when I said yes, he nearly had a fit at the idea that I might change, so off I went to the next match wearing the same gross shirt. (I can't remember if I won.)

My social worker, Mary Lou Hackett, once told me about a patient who wore the same pair of earrings to each checkup, figuring that since she hadn't relapsed while wearing the earrings, she didn't want to tempt fate by wearing any other pair when she went to Dana-Farber.

This New Year's, I got a little crazy when thinking about what to do, or rather what not to do. New Year's is, of course, in its own special category, bringing out all sorts of social anxieties in people.

The year after I came home I wasn't allowed to go anywhere, but the past two years I went to a party. The party wasn't happening this year, so I decided to stay home and watch a movie, which was really fine with me.

But I told Katie I was concerned about starting the year doing something different because the previous two years I had done the same thing and hadn't relapsed, so what if doing something different made me get sick again?

I knew this was magical thinking in a big way, but still, that didn't stop me from having a moment.

Voicing the wisdom that all of my children have, Katie pointed out that I had done many things differently in the past three years and they have not caused me any harm. (Unless you talk about direct cause and effect, such as running on a painful foot and getting a stress fracture.)

So it is time for me to repeat:

I can throw out the paper bag
I can throw out the paper bag
I can throw out the paper bag

...Or can I?

Good parking, good play in NY

2012-01-10T18:55:00.000-08:00

Katie and I are back from three days in New York, where the first thing we did was walk with Serena along The High Line, a park built on an elevated rail line along the west side.

I had never been before, and it was just incredible. The sign above just cracked me up, because it spoke to the determination that I (and obviously many others) have with getting a spot.

I also had to laugh because we had just driven in and I had found the perfect spot without praying to anyone.

Katie and me on the High Line.

Saturday night we saw the revival of Stephen Sondheim's "Follies" with Bernadette Peters. It was amazing, a combination of darkness and light not usually seen in Broadway musicals. We had heard many of the songs, such as "Broadway Baby," before in revues, but didn't realize that they came from this show first produced in 1971.

The weather was nice, so we walked around a lot, did a little shopping, saw family and one night went down to Brooklyn to hear some music. On Sunday morning, I ran four miles along the Hudson River Park and really enjoyed it. I'm used to Central Park and the reservoir on the upper east side, but the change of scene kept me interested.

Later that day, we did get up to the park, walking across it at nightfall to dinner with the city lights all around us.

On Monday, we stopped in Stamford, Conn., for a late lunch with Ben, getting back late and tired.

And now, it's back to the routine, starting with tutoring in 7:30 a.m. tomorrow.

But hey, as I write this I'm listening to "Broadway Baby," and it's bringing me back.

When you need a jump start

2012-01-05T19:30:00.000-08:00

The other day after I had walked a second time around the lake with Deborah, I asked, "I wonder if this gets me out of running today."

It was an odd comment coming from me, and she picked up on it, saying, "I thought you liked running." Well, most of the time I do, but I dislike starting again after taking time off. "It's sort of like giving a jump start to a car," I said. "Once I get going, it's fine."

I had restarted everything post-hernia except for the running, and I kept putting it off. Tennis has challenges (like getting the ball over the net), but in a way it's easier because you put on your sneakers and tennis-face and then you just go, but you don't go and go and go.

Running is a commitment to constant movement. The day of the longer dog walk wasn't terribly cold, so I made myself change and and go back out. I thought of babying myself by starting really slowly, but I reasoned that since I had run six miles in November, I didn't need to start with one mile all over again now.

So off I went for a three-miler. My feet actually remembered what to do, and before I knew it I was almost floating along.

Yesterday I had tennis, so I wasn't planning on running. Even if I didn't have tennis, I'm not sure I would have gone, because it was super cold and I am a little older than I used to be. But Katie, who has been increasing her distance, was game. I lent her some of my cold-weather running stuff: a really warm long-sleeved wicking shirt and a fleece headband to cover her ears.

With her long ponytail, she looked like I used to, reminding me of days when I ran in such cold weather that there would be little pieces of ice on my eyelashes.

After she left, I put on my long puffy coat and a scarf, hat and mittens, bundling up as though it was the Arctic. I took Maddie once around the lake and was glad to get back in the warm house.

As for alternatives, I really hate the treadmill, aka the dreadmill, but I have discovered the Arc trainer (a little more difficult and more interesting than the elliptical), so hopefully I will feel motivated and up to popping out the door when it gets warmer.

Sometimes, meanwhile, I jog around the house a little, and I mean a very little, like a few steps here and there, and Maddie looks at me as though I am a little bit crazy. Maybe it's my way of keeping the engine running.

Oil me

2011-12-31T06:57:00.000-08:00

I was very rusty last week when I resumed some of my activities after a month off except for walking.

At yoga, I did something I rarely do: Glance repeatedly at the clock. My thoughts as I was doing the poses tended to the "get me out of here" mode, but I did not dash out the door or even topple over, and afterwards Erin said she thought I did well.

At tennis, I made some good shots, but I also missed a lot and even whiffed a few. It was a friendly round robin, and at least I was able to joke that I pitied the person who ended up with me first. Everyone was good-humored about my mistakes, but still, I did ask myself, in a not very helpful way, "How am I going to continue being 3.5 if I play like this?"

I had met with a trainer at Planet Fitness to devise a routine, so I did that once, and it wasn't too bad.

As for running, I went a couple of times for only about a mile, but it was more like a dog walk, because I took Maddie and alternated between having her off the leash and stopping to call for her, and having her on the leash and at points feeling like I was dragging her along. The colder weather does not inspire me to get out there, but if I'm going to keep at it, I'll need to pick it up again sometime soon.

We shall see what the New Year brings.

In the meantime, Happy New Year to everyone!

Playing with the Christmas toys

2011-12-28T07:11:00.000-08:00

Maddie pretty much finished getting the peanut butter out of the bone that our friends Jim and Jane gave her for Christmas, but she didn't want to let it out of her sight when she took a break and curled up with one of her favorite toys.

"I don't want to let it out of my sight!"

"Well, maybe I'll give in and take a nap."

Family dinner

2011-12-26T18:03:00.000-08:00

We are eating leftover Chinese food.

Joe is in the den watching "Jeopardy," occasionally humming the theme song.

Katie is in the kitchen watching "Charlie Wilson's War" on her computer.

And I am watching an episode of "Friday Night Lights" in the dining room on mine.

I guess we are a very modern family.

We're not sitting in the same room, but still, we are connected.

We have lit the menorah, sung the prayer and watched the candles burn.

And occasionally we wander into the other's room and comment on something they are watching. For example, "Charlie Wilson's War" leads to short conversations about the history of our presence in Afghanistan.

Yes, we're not sitting down at the table (but hey, we did do it last night). So although we are in separate rooms, we really are kind of together, albeit in a kind of strange way.

A Christmas message from my son

2011-12-23T18:19:00.000-08:00

Joe, Youth Initiatives Coordinator at the American Cancer Society, posted the following little poem on the Coaches vs. Cancer Massachusetts page.

I'm not going to add to it, because it speaks for itself, except to say that I'm very proud of the work he is doing to help raise awareness and money in the fight against cancer.

‎'Twas the week before Christmas and througout the state,
Students and workers have a lot on their plate.
The weather's so cold we can't get out of our beds,
While visions of vacation days dance in our heads.
But let us remember those with less fortunate fate,
And let's continue to cure cancer at an amazing rate!
Host a Coaches vs. Cancer event; it's what's right,
Merry Christmas to all, now all join the fight!

An 8-5 day

2011-12-20T18:22:00.000-08:00

I am talking about a doctor day, not a work day.

The more I need done, the more doctors I accumulate, and the busier my check-up days become. I have become a master scheduler, cramming many visits in during a day or two rather than driving to Boston for scattered appointments.

Makes sense, I suppose, unless you consider the fatigue factor.

I had four appointments Monday, starting at 8 a.m. and ending at 4:45 p.m., and one appointment today.

Monday morning, I took the T from Diane's to my first appointment to see Dr. Iwamoto, the surgeon who applied the graft under my eye, near Mass General Hospital. She said the graft was attaching nicely and told me to return in two months.

From there I walked over to Mass General and caught the shuttle that goes to Brigham and Women's, and then went to Dana-Farber (basically across the street and around the corner) for my 9:30 blood draw. I had a 10:30 appointment with Dr. Alyea, who pronounced my counts good (except for platelets, low but not worrisome); due to blood work a couple of weeks ago, I knew I was fine, but it was great to hear it from him. He told me I could go two months until my next appointment, a little more loosening of the leash.

He gave me a big hug and then as I started to walk down the hall, Dan DeAngelo, my first doctor, came out of a room and gave me one of his big bear hugs. I had known he was around, because I heard his distinctive laugh in the hallway as I waited for Dr. Alyea.

Next I ran back to Brigham and Women's for a quick lunch at Au Bon Pain with Margaret, who was in the area, and then returned to Dana-Farber for a 2 p.m. appointment with Dr. Goguen, aka the tongue doctor. As I waited for her, I leaned my head back against the wall and fell asleep. When she came in, she said, "Sorry to wake you." Well, she was just doing her job. She said my mouth looked good.

Next stop: Free food!

On the way up, I had seen them preparing for a dessert reception in the lobby for staff and patients. I wasn't going to miss that. I got on a humongous line that snaked around to tables laden with amazing-looking layer cakes, cookies and a token amount of fruit. The servers were piling one piece of cake on top of another on everyone's plates. I got two pieces of cake and one piece of pie, plus coffee, with thoughts ranging from, "You deserve this" to "This is a little bit much."

What can I say? The carrot cake, rich chocolate layer cake and mixed-berry pie were delicious. I walked back to Brigham and Women's and my last appointment of the day on a sugar high, feeling like my head might disengage from my body and float away.

This appointment was with Dr. Shoji, an incredibly nice man who did the umbilical hernia repair. He said I could resume all my activities (hooray!) and told me I didn't need to come back at all, unless I wanted to show off my improved belly button.

Almost done...I walked about half a dozen blocks to the T and returned to Diane's.

Today I drove back downtown to see my dermatologist, Dr. Lin, who zapped off (with a freezing technique) the spots on my face that could turn cancerous as two others have done. She repeated that this keeps happening because, due to continued use of prednisone, my immune system is not operating at full capacity. She prescribed a new cream and said that if that didn't work, she would like to burn the skin off my face in two months.

That's not how she put it – it's called PDT – or Photodynamic Therapy – but I know that is exactly how it feels, because she did it about a year ago with good, though not lasting, success.

She scheduled it for Feb. 14, her Valentine's Day present to me.

As Scarlett O'Hara famously said, I'll think about that tomorrow.

Exciting news

2011-12-18T20:21:00.000-08:00

Meghan and Ben

Now that I am finally alert after last week's only post, in which I wrote about trying to stay awake, I want to share some wonderful news.

My son, Ben, has become engaged to a wonderful young woman, Meghan, who I am so happy to now call my future daughter-in-law. Everyone knew they were going to get married, and some of us even knew exactly when he was going to propose, but it was incredibly exciting to get their call, on speaker phone, in which they told me that he had surprised her with the ring...and that she had said yes!

Last night we gathered at Diane and David's and gave a Champagne toast to the newly engaged couple. It was actually an early Hanukkah party, so we lit candles, exchanged presents, and toasted everyone. Diane set a beautiful table, and D&D, as people call them, served a terrific meal.

It was the first time I had seen the ring, and I couldn't take my eyes off it, sparkling on Meg's hand.

I don't use many exclamation points, but the occasion warrants it, so, here goes:

My baby is getting married!!!!!!!!!!!!

Oy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Burning the candle at both ends

2011-12-16T12:14:00.000-08:00

It's been a long, long week in which my Circadian rhythm was totally disrupted.

The good news is that I got a spot tutoring students in Springfield elementary schools, for pay.

The bad news is that although I signed up for after-school hours, there were more tutors than students, and if I didn't take the 7:30 a.m. slot, I wouldn't get to do it at all. I need to be there early, so with travel time that means leaving at around 6:45 a.m.

Welcome to the world, you say?

Well, for the past 30-some years, my world has always involved later work shifts. When I left the Republican, I worked from 10 a.m. to 6 p.m., and when I first started, we went in around 11 and left at 7.

Common sense says to just go to bed earlier, but when you stay up late like I do, it's hard to just make yourself go to sleep earlier. Plus, it was a busy week, with a tennis party Tuesday night and a concert at the Iron Horse in Northampton Wednesday, and I wanted to go to both.

Wednesday didn't start so well. I stumbled out of bed and made coffee and a piece of (overdone) toast, which I ate in the car. I cut my lip on the toast and only realized it when I felt blood dripping down my face. I managed to stop the bleeding with a tissue and got to my assigned school in Springfield in one piece.

We were assigned our groups, and I got six fourth-graders. There was basically time for introductions and giving them a test which they did in class to assess their level. On the way home, I had to pull into the parking lot of the CVS in Holyoke and take a nap. When I got home, Joe was having car trouble and needed a ride to the West Springfield repair shop where his car was towed. After he got his rental, I fell asleep again in my car.

Thursday morning began with me trying to carry coffee and the bin of student booklets out the door in the dark and dropping my keys in the dog water near the door. Big splash of water on the floor, left for later.

In school we began work on a unit in capitalization. I passed out booklets and walked around helping them. When the bell rang at 8:30, the kids threw their stuff down on the table and ran to breakfast. One little girl stayed to help me, gathering everything up and offering to carry the bin downstairs for me. I am already falling in love. Next week I will stop a little earlier and tell them they can't leave until they clean up.

On the way home, once again I couldn't get any further than CVS. After my 15-minute catnap, I got home, threw down my jacket, took my shoes off and crawled into bed, setting the alarm for 11 a.m. Every time it went off, I set it for another half an hour. I set it for 12:30, but it never went off, because I saw later that I had set it for a.m. Who knows how long I would have slept if Ben hadn't called at 1?

I sat down on the couch at night and told Joe I was so tired, I was scared the leukemia was coming back. (This when I know full well that my blood test a couple of weeks ago was fine.)

"Are you serious?" he asked, or some such thing. Probably I was not serious, but it's a thought that pops up, and then when I say it and someone (or myself if I'm the only one around) sets me straight, I can let it go.

Hopefully next week I will do better with sleep.

Despite the fatigue, I have to say that Wednesday night at the Iron Horse was worth it. I saw friends from work and heard a great opening set by Scott Kempner and then the show by Elliott Murphy and the Normandy All Stars. It was great rock n' roll with folk undertones, and everyone was clapping and at some points singing along.

And I thought, "I am not in the hospital. I am here and alive and listening to music with friends, and I am really really happy about that."

A pleasant surprise

2011-12-10T06:18:00.000-08:00

Got this encouraging e-mail from Melissa yesterday: "Your labs are a bit better! Looks good."

I was already preparing for the opposite and getting bummed out. Goes to show you the waste of time in predicting your lab results. I was pleasantly surprised because it was not what I expected.

I would not have been major bummed out, just minor dispirited. That's because my concern was not about anything big but rather about the management of my ongoing Graft vs. Host Disease.

Melissa had told me that the labs from my pre-op tests a couple of weeks ago showed that my liver enzymes were up a bit (the wrong direction). She said I should get retested, which is what I did on Thursday.

The way it's been going, every time I get down to taking 5 mgs. of prednisone a day, my liver acts up and I have to increase the prednisone, which I have now been on for longer than I can even remember.

Staying on prednisone means having a lowered immune system and staying on several drugs that I take to prevent different problems that I've had in the past.

I really had every reason to suspect that higher numbers a few weeks ago meant higher numbers now and a need to increase the dose.

But tada! It didn't happen that way.

So I can stay on my 5 mg. and reevaluate when I have my next appointment in a couple of weeks. And I am NOT going to spend time thinking about what will or will not be.

Shpilkes

2011-12-07T14:21:00.000-08:00

Shpilkes: Yiddish plural noun, literally “pins.”

First meaning: “On pins and needles,” an unpleasant nervousness before an event.

Nowadays it can mean “upset stomach,” “feeling antsy,” or “impatience.”

I am back from a walk in the rain with the dog, my wet sneakers all squishy.

I had an umbrella in one hand and the leash in the other, and although I thought about making a second loop around the lake, my arm with the umbrella was starting to hurt me. If I had just been running in the rain, it would have been easier because I would have hit a stride, sans umbrella and leash. (Sorry, Maddie.)

Still, I probably would have walked her separately, because although she's not so young that she needs to get a good exercise walk every day, I feel it's my job as a pet owner to take her.

I am at that point in a period of limited exercise when I am feeling antsy. The hernia operation was a week ago Monday; I'm not supposed to do much but walk until I see the doctor again on Dec. 19. I've found myself taking little jogging steps across the kitchen and around the house. I jogged to the car and was about to take off in the supermarket when I thought better of it. When walking the dog, I jogged a few steps along the path.

It's like there is a little "on" switch that I couldn't push all the way to "off."

Yesterday I lifted some weights in my room and did a few stretches not involving my abdominal muscles, but what I really need is to run around.

I know, of course, that it could be way worse and that this is nothing in comparison to big stuff, but the accumulation of little things (teeth, tongue, etc.) definitely adds to the overall wear and tear.

But hey, the fact that I am restless is a sign that I'm feeling better, because a week ago, I wasn't much in the mood for running around at all.

A gift to myself

2011-12-04T12:46:00.000-08:00

A friend recently told me that while undergoing chemotherapy for treatment of breast cancer, she had bought herself a present after completing each round.

This sounded like a great idea to me. It doesn't work that well for leukemia, because when you are finished with a round of chemotherapy, you are so depleted that going shopping is the last thing you want to do. I did, however, get a lot of nice gifts when I was in the hospital. And I try to schedule in something fun in connection with my frequent trips to Boston, and sometimes, when I started feeling better, that something fun often involves going shopping.

I thought of my friend's words yesterday when I went to a "brunch and buy" where the theme was hand-made holiday gifts. Everything was beautiful. I thought I would be able to make it out the door cheaply by buying a just a desk calendar with a photograph a month, but then something called me back.

It was a collection of silver watches on bracelets made of beads and big, colorful stones. I tried on one in "my" color, blue. I joked with Bev, the tennis friend who makes the jewelry under the name Big Mouth Beads, that perhaps I owed myself a hernia repair present.

Like the eye surgery that had turned out to be more than I expected, the hernia fix has involved more in the way of continuing pain than I had thought it would. I hadn't taken any oxycodone before driving to Longmeadow for the "brunch and buy," because you aren't supposed to drive under the influence. By the time I left, the site was really hurting, so I was definitely in the mood for something to pick me up.

Hence, the blue and silver watch, my gift to myself on a day when I had thought I was going shopping for other people. Oh well, these things happen.

I liked the way it caught the light on my drive home, helping to keep my mind off the pain. It looks magical.

But there is a problem: I need to think of something else to call it other than my "hernia repair watch." It's too pretty to have such a connotation.

Eye on the mend

2011-12-02T14:02:00.000-08:00

When I went to the eye repair shoppe Wednesday (otherwise known as the office of Dr. Mami Iwamoto (the surgeon who repaired the hole under my eye), the doctor said the graft looked good but that I should really get in there and knead it like a piece of dough, pushing it in towards my nose.

That was funny because I've been so careful about not touching it. It kind of hurts my nose when I push on it, but that's what I need to do, twice a day, I guess to get the graft to fit better into the contours of my face.

The weather has been nice, so despite pain at the site of my hernia repair (pretty much dulled by oxycodone), I've been walking a lot. Yesterday I had coffee with a friend who lives in Newton, and last night Diane and I went to an interesting presentation hosted by a Meetup group called Chicks Who Write. Meetup groups are gatherings around the country involving people who want to network on a range of topics.

The speaker last night was a widely published writer, Ethan Gilsdorf, whose topic was "Writing Killer Pitch Letters."

It's about 5 on Friday and I'm sitting at Diane's table waiting for Katie to pick me up and drive me home. I'm going to take her to the bus stop tomorrow so she can get back to school.

Then I'm going to sit at my kitchen table writing pitch letters, hopefully of the killer type.

Day after surgery

2011-11-29T13:55:00.000-08:00

The hernia repair surgery yesterday went well.

The area is quite painful, so I am back on oxycodone every four hours. I'll probably stay at Diane and David's in Newton through Friday so that Katie can drive me home after class. Then she'll take the bus back to school. Tomorrow I have an appointment with the doctor who did the repair under my eye.

They want you to walk, so yesterday and today I took Diane's arm and went for a walk. It's so balmy here, it was nice to be outside. My legs are a little wobbly, but only mishap was when a fire alarm box jumped out from its spot on a building and hit me on the head as I turned to look at a book Diane had just bought. After a quick examination showed that I was OK, we switched sides so that I'd be away from the buildings.

Back at the house, I had received an e-mail saying the year-end tennis ratings are out. I'd been predicting that as soon as I returned to team tennis, my rating would drop from 3.5 to 3.0. (How's that for confidence?) But since I've won one and lost one, I knew I'd probably stay.

And there it was when I wrote in my USTA number: 3.5.

That made me happy.

Talking Turkey results, or, just call me Rosie

2011-11-27T19:21:00.000-08:00

Me, Ben, and his girlfriend, Meghan, before the race.

I finished the Talking Turkey 6-miler yesterday, but it did not turn out how I expected.

I felt terrible the first mile. I'm still not totally over my cold. I was having trouble breathing through my nose and had to keep reaching for a tissue. I'm sure that made me run even slower than I usually do.

Actually, I thought that I had gotten faster, and I probably have, but not yesterday. After a couple of miles, a gap opened up between me and a large part of the pack. I know I wasn't last, because I heard people talking behind me, but I didn't have anyone to follow. The course around the Ashley Reservoir isn't a circle; you have to make some turns, and normally I don't pay attention because I'm with everyone.

I missed a right turn through the woods and ran straight ahead to one of the reservoir's gates. After a few minutes I knew nothing looked familiar, but I just couldn't figure out where I was. I was living my runner's nightmare, that I am in a race and have lost the crowd and don't know how to reconnect.

I did figure out that I needed to reverse and turn back through the woods, which I did. I got back in with the pack and breathed a sigh of relief, but then I was feeling just so discombobulated that I think I made another mistake. I passed four miles, feeling OK, and then came to an intersection where there were runners coming in from the left. Someone told me to turn right, so I did. Actually, I think I should have been coming along with those runners, so I must have made another wrong turn and skipped part of a mile, because I never saw the marker for 5 miles.

I just kept trotting along. And then a saw a welcome sight. It was Len Brouillette, the track coach at South Hadley High School and a friend who walks his dog at the lake. Len had finished, and, having heard that I was running, backtracked to find me and run me in.

He said, first of all, that I looked good. Second, when I told him what I had done, he said, "People get lost all the time in races." That made me feel better. He ran with me to the turnoff for the chute, and I crossed the finish line in about 1:11. I used to run it in under an hour, but that, of course, was then.

There were still a decent amount of runners behind me. With the section I added and the section I somehow missed, I probably did run about six miles.

I had started with Ben and Meghan, and they were at the finish line waiting for me, along with Katie. I told them what had happened, and then I kept trying to figure it out. What with not feeling that well to begin with and feeling confused, I didn't have that exhilaration I had when I ran this race in 2005, my first after my initial diagnosis and treatment two years earlier.

The kids reminded me to keep it in perspective. Two and a half years ago, I couldn't even walk. So what if I got lost? So what if I was slow? It was still a big accomplishment. And Ben said he hated to point this out, but I am a little older now.

The broken record went on a little longer.

The consensus: Get over it!

Here's another way of looking at it: I did a lot better than the last time I ran six miles, in May, when I fell down and got a stress fracture.

Also, they gave out a really nice shirt this year.

Say what?

2011-11-25T15:28:00.000-08:00

I had an interesting day at Brigham and Women's for my pre-op appointment Wednesday.

The scheduler at my doctor's office told me I could get there early for my 12:30 appointment in hopes of beating the Thanksgiving traffic and that they would try to squeeze me in. Uncharacteristically, I did get there early, around 11:30. The person at pre-op, however, wouldn't even let me sign in. She said that due to an emergency, they were about an hour and a half behind.

So I had to wait beside the sign-in sheet until 12:15, at which time I put my name down. The receptionist said that I should then go kill an hour and a half and she would call me on my cell phone when they were ready.

I decided to go up to the sixth floor to see if any of my nurses were around on 6A, where I got my transplant and where I was so sick.

And they were. It was pretty incredible. They remembered my room (12) and much about me. This was almost three years ago. I guess when you're there for 3 1/2 months and you nearly die, you make an impression. We talked for quite a while. One of my favorite nurses told me, "You just made my year." It's great to make someone's year.

Then I went to Au Bon Pain to get lunch. I had just started on a cup of soup when I got a call from the anesthesiologist saying they were ready. I was a little surprised, because it was 15 minutes before my time. "Put a cover on your soup and come right over," he said, sounding annoyed.

In going over my records, the anesthesiologist asked, "Do you know you have a leaky heart valve?"
Picture the look of surprise on my face. I had him repeat it. I asked when that turned up.

"In an echocardiogram in 2009," he said.

OKaaaaaay.

He said this condition is relatively common. It is rated mild, moderate and severe, and mine is moderate.

Now, nobody has EVER mentioned this to me.

I told him how active I am and how surprised I was. He told me to go discuss it with my internist, which I am not going to do. I plan to run it by Melissa, my nurse practitioner, sometime next week. Since it never came up, I am not concerned, just curious.

Anyway, I went over my history and my meds with the anesthesiologist and then went over the same exact stuff with a nurse. I got out around 4, chomping at the bit, as they say.

Katie met me there, and we drove home together. The traffic was pretty bad, but at least it was moving.

Everyone came for Thanksgiving, and the feast went off without a hitch. There's always something, so I was a little surprised when preparations were going so well. I kept waiting for the other shoe to drop, but it never did.

I took out my mother's nice silver and special plates. Katie set a beautiful table. We lit the candles. Just as we were raising our glasses in thanks, Diane called. The machine picked up. "Happy Thanksgiving," Diane said. So she became part of the toast too. My parents would have smiled.

Tough times emotionally

2011-11-22T19:31:00.000-08:00

Despite unseasonably warm weather earlier in the week, today was really November. Overcast, cloudy and gray.

Kind of like my mood.

I planned to be in the final steps of getting ready for Saturday's Talking Turkey, but due to my cold and a bad cough, I haven't run all week. I did continue to walk the dog and even jogged a few steps to make sure my feet still lifted up, but it didn't quite make the cut. I hope I can still run the race.

This time five years ago marked the final days of my mother's life, a good long one with a very brief period of illness. Today I heard a story of someone who died young in an accident, and it kind of put my loss in perspective. But still, as everyone knows who lost one, it is your mother.

She has been coming to me in my dreams. The other night I dreamt that she and my aunt were lying on a bed intertwined like snakes. That's how close they were in life. My mother was dying, and as the two revolved around each other, my mother's head became visible. She looked just like she did the last time I saw her. "You're so beautiful," I said.

A few nights later, I dreamt that I was back in our apartment in New York. My parents, both very frail, were in the kitchen. My mother was bandaging my father's arms just as she did during the end of his life when his skin, so thin, developed patches that bled. They couldn't go outside, and I needed to go and get them some things.

First I went out to the park for a run. And suddenly I couldn't see where I was going. It was snowing and then raining, with little visibility. I lost my way on the path and went into a dead-end snow tunnel. I realized what I had to do, got out, turned left and found the path. Ah, the proverbial dark wood.

I was running in all the wrong clothes, dress boots and a long skirt. But I finished the loop and ended at the park exit that I usually took when I went back home. I had made it.

Yesterday, I called my cousin Joanne in New York, who is a big help and support in many ways. My mother often visits her as I feel my mother visits me, and sometimes Joanne calls to tell me about it. Joanne said she loved the symbolism of my dream run. Despite all the odds, I had found my way, just as I have done in life.

But, but, but, I said, I left my parents in the apartment.

That's OK, she said. Your parents are OK. And you are too.

Joe is already here, and the other kids are coming tomorrow. Today I bought beautiful flowers for the house, not just the usual assorted mums for the Thanksgiving table but also a special bouquet of small yellow roses that I put on the kitchen table. Buy something to brighten things up, I heard my mother say.

I think it is working. And having everyone here will definitely lighten things up, too.

A little something extra

2011-11-19T09:21:00.000-08:00

I find it kind of embarrassing to say I have a hernia. Maybe because it's an odd word that sounds a little like hemorrhoid. Who knows, I might be the only person to think this.

In any case, that's what I have. (A hernia, not hemorrhoids.) I am having it fixed the Monday after Thanksgiving at Brigham and Women's Hospital in Boston.

On Wednesday, I go to Boston for pre-op instructions and will then probably be stuck in traffic for eight hours on my way back to Western Massachusetts.

I have an umbilical hernia, a fairly common problem and one that can be attributed to pregnancy, obviously a delayed reaction on my part.

Thanks, kids.

It's a day surgery to be followed by some pain and no running, tennis or yoga for at least a month. I should be able to walk the dog. Maddie will be happy.

Just a little something extra to keep life interesting.

Running for candy

2011-11-16T19:51:00.000-08:00

On Monday when I increased from four to five miles, I felt the difference big-time.

It was probably not only because of the extra mile but also because my route included some hills, as opposed to my usual one-mile flat loop around Mount Holyoke's upper lake. With its soft surface and trees, it's a comfortable, sheltered place to run. Since the storm, it's been fun to walk the dog around that obstacle course of fallen trees and branches, but running there is out of the question for now. I've been going around the smaller lower lake (about 3/4) of a mile, but it's not as woodsy.

Monday's route was out on the roads. I had been doing part of it, but not the whole five miles, stopping at the bottom of the hill that leads to McCray's Farm. But I felt pretty good and decided to go for it. I reached the top of the hill OK and felt it was an accomplishment, literally and figuratively.

Going down the hill was a breeze, but as I ran over more ups and downs, I felt the accumulated effort. On the last part, I didn't want to be there anymore. It was a bit like during childbirth when you change your mind. There's nowhere to go but to the finish. Five miles probably doesn't seem like much to those who run long distances, but it's far enough if you're coming back from being way down.

As I approached our local deli, Tailgate Picnic, I had a thought: I could just stop there, get some peanut m&ms, and enjoy a leisurely quarter-mile walk back home. For some reason, when I get in a bind, chocolate often comes to mind. For example, when I was covering a boring lecture, or if I am at an over-long show or stuck in a dead-end conversation, I start to imagine the moment when I can have some chocolate.

But supposedly increasing your miles and then stopping early to buy m&m's is another matter.

I bypassed temptation and finished the run. Wow, I thought, I just did one of my old five-milers. I was glad that I had done it. I went inside, stretched, drank some water and ate some lunch. Then I drove back to the deli to get my reward.

Back to Exjade (sigh)

2011-11-13T19:22:00.000-08:00

My daily dose of Exjade takes my mind totally off my worries, in a not very positive way.

I took it today after a break of several months. You dissolve five pills in water, drink it on an empty stomach, and wait 30 minutes to eat. Normally if you take a bitter pill, you can pop something in your mouth to take the taste away. But with Exjade, you are left feeling like you are going to vomit while knowing you won't get the relief of doing so. You can just mutter to yourself, distract yourself, clean the kitchen, tap your foot, complain to anyone who is around, whatever, until your time is up.

This is nothing compared to the nausea after chemotherapy, but still, it's not a great way to start the day.

Exjade decreases your level of ferritin, a protein that stores iron in your body. People like me who have had multiple blood transfusions end up with excess ferritin; the consequences can be really really bad, including such things as cirrhosis of the liver and increased risk of liver cancer, heart failure and abnormal rhythms, and decreased insulin leading to diabetes.

A normal ferritin range for women is 12-150 nanograms per milliter. After I finished getting transfusions, my level was about 10,000. Due to blood draws before check-ups and a period of Exjade use, my level is down to about 7,000. Quite a ways to go.

One means of treatment is a good old-fashioned blood-letting, minus the leaches. Patients undergo "therapeutic phlebotomy" during which a prescribed amount of blood is removed, usually a couple of times a week.

My doctors favor the use of Exjade, which binds to iron and removes it from the bloodstream. It takes months and months to work.

When Melissa told me at my check-up last Monday that it was time to restart, I took the bottle out of the cabinet and placed it on my counter. It took days for me to actually see it, meaning I had selective vision that made me forget until after I had already eaten. Then the day passed, and before I knew it, I had procrastinated yet another day.

Today I decided I meant business, and after re-reading about the potentially devastating effects of high ferritin, I am determined to keep up with it. Even if it means starting my day with a miserable half-hour.

From doctors to Degas

2011-11-10T17:29:00.000-08:00

I'm back from Boston after three doctors' appointments, lunch with PJ and a long walk on a beautiful balmy day to see the Degas exhibit at the Museum of Fine Arts. Might as well mix in some fun to balance the hours spent in medical offices.

My check-up was uneventful. Numbers were good, about the same as last time, except for a drop in my platelets from the 83 to 68. Melissa said she was not concerned. My liver function numbers are better, so I can try dropping the prednisone to 5 mg. a day.

Dr. Dana, the specialist at Mass. Eye and Ear, said that my dry eyes may or may not signal the onset of Graft vs. Host of the eye. I was reminded of the time when I wondered if my work at the newspaper was giving me carpal tunnel syndrome. A doctor told me that my symptoms might get worse or they might get better. In other words, who knows?

Dr. Dana said to use Restasis, eye drops that have varying amounts of success in helping dry eyes and hopefully staving off GVHD. Back home, eye doctor #1 had prescribed restasis, but then eye doctor #2 said he didn't like the drug and not to use it. Since doctor #3 is the expert, I'm going to give it a try.

As PJ, who now lives in New York, wrote on her blog, she went to Dana-Farber Tuesday for a second opinion. Since I happened to be in town, we met for lunch and, as she said, compared war stories. We had to laugh that while some people meet up at their favorite bar, restaurant or coffee shop, we got together at our favorite cancer center.

That afternoon I saw the exhibit Degas and the Nude, which shows a different side of the painter from the one many people know through his sculptures of dancers. Most often at museums I don't use the audio guide, but I got one this time and was glad I did. I learned a lot, and instead of having to read the explanations on the wall, I was free to just enjoy and appreciate.

On Wednesday, Dr. Iwamoto, the plastic surgeon, removed the wad of cotton that she had stitched over my graft. I was glad to see it go; it was small, but it had begun to feel like a bowling ball under my eye. She said the graft should take six to eight weeks to be absorbed into the skin. Right now it does not look pretty. She also said to be careful not to rub it, because it could fall off.

This morning as I woke up and stretched, I caught myself rubbing my eyes. Having that thing fall off would not be too much fun. I better be careful.

More fun in Boston

2011-11-06T07:55:00.000-08:00

I am enjoying a brief hiatus at home before returning to Boston tomorrow for three days of appointments.

"Enjoying" might be too strong. After the surgery under my eye on Wednesday I am not allowed to exercise for a week, and so I am a little out of sorts. Still, I am glad to be home.

It is a good thing I have a place to stay in Boston. I hope Diane and Margaret (and their spouses) don't get tired of me.

I have five appointments, and although I couldn't have gotten all of them into one day, I was hoping for two. No such luck. Oh well, I could be "stuck" in a worse place than Boston. Maybe in my free time I'll go to the Museum of Fine Arts or walk (with a tiny bit of jogging) along the Charles River. And of course I can always go read at a Starbucks.

Tomorrow I have my regular check up at Dana-Farber, followed by an appointment with the head and neck surgeon (aka the tongue doctor) to check on my tongue, or should I say the remaining part of my tongue. I'm also going to see my social worker.

On Tuesday I have an appointment at Mass. Eye and Ear to see a specialist in graft vs. host of the eye. Dr. Alyea is sending me to him because he thinks some of my eye problems might involve GVHD. I have heard that this doctor is a big big shot who has absolutely no bedside manner. I am a little worried that he's going to yell at me. (I didn't do it! It's not my fault!)

Finally, on Wednesday, I return to the repair shop to have my stitches taken out and the wad of cotton removed from under my eye. I am definitely looking forward to that visit.

Call me a cockeyed optimist

2011-11-04T08:05:00.000-07:00

Or is it negativist?

I'm not sure about this. I guess I'm a little of both, some days optimistic and some days negative.

One thing's for sure, though. I am definitely cockeyed.

I had the Mohs procedure in Boston on Wednesday, and, although it was successful, it was more complicated than I expected. The surgeon took what they call two "passes," meaning he removed a layer of the cancerous tissue (squamous cell) under my eye and then repeated the procedure because he didn't get all of it the first time.

After he had numbed up the area around my eye and removed the tissue, I waited about 45 minutes so he could see if he had gotten all of it. Most people sit in the waiting room, but since I needed to have my head back, I waited in the chair. That really wasn't so bad. I just took a nap.

When he came back in, he said some was still left, so he repeated the process again. After the second round, he said that he had gotten it all. One of the nurses told me it can take up to five passes, so I guess I did pretty well.

Next I went upstairs in the same building to the repair shop, where I got into a room quickly and then proceeded to wait there for an hour and a half.

When the doctor finally came in, she numbed up the area all around my eye with multiple injections, the only part of the procedure that hurt.

She handed me a mirror so I could see the little hole right under my tear duct. Yup, it was a hole alright.

The repair involved taking a skin graft from under my eyebrow and stitching it over the hole.

"You're getting a free eye-lift," the doctor joked as she worked.

Excuse me? On one eye?

Afraid to move my head, I didn't want to talk, but I did have to ask if that would end up looking a little strange.

She said that it wouldn't make that much of a difference, but we could reevaluate it when I healed.

So does insurance pay for an eye lift to balance you out? Just wondering.

She also put a stent in to open up my tear duct, which the surgeon had apparently needed to slice. She finished by sewing a piece of cotton called a ballast over the graft and onto my skin. I go back next week to have the ballast removed.

What with the wad of cotton, the stitches under my eyebrow and the overall swelling, it is not a pretty picture.

Chased out by crazy storm

2011-11-01T08:20:00.000-07:00

I am writing this from a warm house (my sister's, in Newton), which is more than many people in parts of the Northeast, including South Hadley, can say after the crazy snowstorm that ended in at least 2.3 million people losing power.

As the snow fell and winds gusted Saturday, the trees practically groaned under the weight of accumulation on all the leaves that had not fallen. There were crashes and loud thumps. The microwave light went on and off, on and off. I peered out at all the trees surrounding the house and thought this might be the end of me. Then came the thunder and lightening. I looked it up and learned this is a rare occurrence called thunder snow. It sounds kind of poetic on paper, but in reality it is just plain weird.

The lights went out after I had gotten into bed with a book Saturday. The power has still not come back, which means no heat, no nothing. The house escaped damage, but there is a chunk out of the front of the garage roof and a hole in it from where a tree fell through.

Sunday night I slept at my friend Mary's in Chicopee, one of the communities that did not lose power. Last night I slept at Diane's; I was going to come here anyway because she is taking me for the Mohs surgery on Wednesday.

Joe drove me here, through streets strewn with fallen branches. We got stuck behind a line of cars that we thought were waiting to turn at a light, until we finally realized these people were waiting for gas and we needed to drive around them.

The drive was taking longer than usual and was making me antsy. The occasion seemed to call for car food, i.e. junk food. We stopped at a rest area, where Joe got a Snicker's bar (and kindly gave me a bite) and I got a "sharing size" bag of peanut M&Ms. During the rest of the ride, I popped one after another into my mouth until almost all were gone.

"Joe," I said. "This was meant for two, and I ate almost the whole thing!"

He shot me a glance as if to say, "So?"

If you want to get some sympathy for this kind of remark, you really need to tell it to a woman. (Reference the separate pie charts of men's and women's brains that I've seen, where on the woman's pie there is a slice for "what I ate today" and another for "things I should not have eaten," while the man's pie has no such thing.)

But I digress. The car ride was actually good "bonding time" where we listened to music and talked about different things.

It is more like normal fall here in the eastern part of Massachusetts. Yesterday actually felt kind of warm. As soon as Joe dropped me off, I headed out for a run. It was Halloween, and it felt like the peanut M&Ms had given me super powers.

I hit my stride pretty easily even as I zigzagged around little witches, ghosts, princesses (and one particularly cute tiny ladybug) getting an early start on trick-or-treating.

I ran for about an hour. Near the end, when I had picked up speed, I got a touch of that old feeling, the runner's high. It has stayed with me, a reminder of why I want to run.

As a bonus (or perhaps a bane), Diane bought was too much Halloween candy, and it is sitting in a big bowl for the taking. My only complaint is that she bought Milky Ways instead of Snickers.

Watching hockey from another angle

2011-10-29T18:59:00.000-07:00

It is probably safe to say that I was the only person at last night's University of Massachusetts/Boston University hockey game taking pictures of the announcer.

To be more precise, the back of the announcer's head, because that's the only angle I could get.

I was at the UMass Mullins Center ostensibly watching the game but really there to hear Joe announce it. He has been the public address announcer for several UMass football games this season (including the one at Gillette Stadium, where the Patriots play) but this was his first hockey game.

Having watched Joe play hockey in high school and college, I was much more interested in going to a hockey game than I was in seeing football. I went with Jim and his friend Bill and had a good seat almost directly behind Joe but many rows above where he sat in a booth down at the ice.

I walked down and sat behind him and took a few photos on my phone to send Ben and Katie. Did I wonder if I looked a little odd? Yes. Did I care? No.

When we first heard Joe, I looked at Jim and asked, "That's him?" Of course I knew it was, but it was announcer Joe, not everyday Joe. He sounded, and was, 100 percent professional.

While everyone cheered for the players, I shouted "Yay, Joe" after I heard his voice. (Don't worry, nobody but Jim could hear me.)

I did, by the way, also pay attention to the game, which ended up in a 2-2 tie,

But for me, the main attraction was my son. I was, as they say in Yiddish, kvelling. Definition: To beam with pride and pleasure, most often about the accomplishments of your children.

Running while distracted

2011-10-27T06:30:00.000-07:00

Every runner knows that some days you have it and some days you don't.

On Tuesday, I just didn't have it. I felt sluggish as soon as I started out on my four-miler. It was a beautiful day, perhaps a little too windy but sunny and crisp yet not too cold. I plodded ahead, super pokey. After a few minutes I took my sweatshirt off and tied it around my waist, and then at least I felt lighter.

Perhaps my problem was the humongous blueberry pancake I ate for breakfast when meeting my friend Ken and his girlfriend for a nice breakfast in Northampton at Green Bean, a great place where you choose your own mug and can take endless refills of delicious coffee. I had an egg for protein with my pancakes, but the total effect probably was not conducive to running.

Anyway, I did perk up the further I ran and even managed to do a few quick intervals. But I wasn't really into it. My head was practically swiveling around on the Mount Holyoke campus looking for people I might know, so I could stop and talk to them.

I thought I saw a professor friend up ahead and jogged to catch up, thinking we'd chat for a few seconds. But it turned out to be someone else. Then, as I passed the library, where the Rao's coffee shop is, I even thought of poking my head in to see if anyone I knew was there.

My inner coach was fed up.

"What are you doing? Talk later, run now."

Right. It occurred to me that maybe I need a running partner, but I can't think of anyone I can ask at this time.

I focused then, and on the home stretch, I ran as fast as I could.

"Finish strong, finish strong," the inner coach said.

And I did.

Beautiful bike ride

2011-10-25T06:31:00.000-07:00

On Sunday, I loaded our bikes onto the back of the car, picked Katie up at Brandeis and headed to nearby Weston so that we could take a bike ride led by Rook.

It was a good day to take a fall bike ride in a 20-mile loop through such historic towns as Lincoln and Concord. We saw some of the places important in the American Revolution and also happened to pass by a modern-day American legend, Bill Rogers, who helped popularize running in America and is best known for his victories in the Boston and New York Marathons in the late 1970s.

Rogers owns the Bill Rogers Running Center in Quincy Market and lives in the area.

We were biking along when Rogers and a woman came jogging towards us. Rook pulled up alongside me and said, "Hey, that's Bill Rogers," and I recognized him immediately.

I lived in the Boston area while working after college and then attending graduate school at a time when Rogers was winning the Boston Marathon. It was a thrill to see him on Sunday, especially since he is a cancer survivor (prostate) who returned to running.

It was basically the same ride Rook and I took over the summer. It was much easier for me this time, although when going up hills, I still feel like I need a new set of quads.

Our ride took us past Walden Pond, where Henry David Thoreau lived for two years. The day was mostly cloudy, but just as we approached the pond, the sun came out and cast its light on the water. It was magical, and we decided to walk our bikes down and stand on the shore. The photos are of us at the pond.

On our way back up, I overheard a woman saying, "I come here whenever I can and walk two times around. Who needs Prozac when you have a place like this?"

Days like Sunday do the same thing for me.

Good/bad scorecard

2011-10-22T19:05:00.000-07:00

This is the tennis version of the post Like a Woodland Fairie, in which I wrote about falling when running and about how it hurt but that taken in context, it ended up being a pretty nice day.

I didn't literally fall during today's tennis match, but my partner, Donna, and I fell to a team in Pittsfield, about a 45-minute drive from us. They have strong teams out there in the Berkshires, and this one proved no exception. We had some long points, but we just didn't play our shots. It wasn't one of those matches where you walk off happy because you played well. It was just frustrating, because they spun the ball a lot so it died on your racquet and they also managed to place it much better than we did.

Although I was happy to share the score of our last match – my first 3.5 match and an exhilarating three-set win – I'm not going to write this one down.

Hey, it's a blog, not a newspaper story, so I can leave it out if I want to, right?

Anyway, it's not fun to lose, but taken in context, it was a pretty good day.

Here is a scorecard of the day's events, with "bad" and "good" each worth one point.

Bad
1. Lost tennis match

Good
1. Ben is here for the weekend, and he, Joe and I had scrambled eggs, bacon and English muffins for breakfast and sat around the kitchen table and talked.
2. Enjoyed the fall scenery and talking to Donna while driving to the Berkshires together.
3. After the match, had snacks that the host team brought and schmoozed with the players from their team and ours.
4. On the way back, got a good cappuccino at a local marketplace and browsed through outlet stores.

This last one gets a bonus 1,000,000,000 points

5. I am alive and well and playing tennis and back in the swing of things.

Score for Saturday, Oct. 22

Bad. 1
Good. 1,000,000,005

The art of gardening in the rain

2011-10-20T20:12:00.000-07:00

It was just starting to rain when I took Maddie out yesterday, but the skies opened up by the time we were half-way through.

We were both soaked when we got home. I told her to shake before we went in, and she did, but still, there were wet paw prints all over the kitchen floor. As for me, my sneakers squished, and water dripped off my Red Sox hat, which, by the way, is in bad shape just like the team itself. I had an umbrella, but still, my glasses could have used a set of windshield wipers.

I needed a change of clothes. But then I looked out at the garden and thought: Time for a rescue mission. It was probably the last chance for the flowers, perennials and annuals, which were being beaten down by the rain. So I squished on outside, clipper in hand, and started picking the survivors. Some were visible, while others were hidden behind drooping leaves.

Red, yellow, orange, pink, purple...there was a touch of everything.

I could hear my mother saying, "Don't be afraid to pick them."

I actually ended up with a bigger bunch than I had all season. Dripping wet (I mean me, but that applies to the flowers, too) I spread them out on a piece of newspaper.

Whenever I'm arranging flowers, I wonder, WWMD (What Would Mom Do), so as I put them in a vase, I tried to channel her flair.

I had to try it a few times, but I think it looks pretty good for an end-of-the-season bouquet using a little of this and a little of that, kind of like when it's the end of the week and you make dinner by throwing together whatever you find in the fridge.

The sun was back out today, and there were some flowers left in the garden, but the ones I picked yesterday definitely brightened my table on a rainy day.

Taking it up a notch

2011-10-18T10:11:00.000-07:00

In my ongoing effort to speed up my running, I did a pretty good job over the weekend in the Boston area at the Chestnut Hill Reservoir, although the wind nearly blew me away and the Boston College track team nearly ran me over.

(Boy do those kids run fast. And when they were done, some even stopped to life ginormous weights.)

Back home, yesterday was my day to increase my mileage to four miles. As I set out, I wondered if the occasion warranted skipping my little drill of running quickly every so often up to whatever point I picked out, say, a bench or a tree with an interesting shape. I know that pushing yourself like this gets you used to a quicker pace overall. Ugh. It's not fun, but it does pay off.

I would have asked my coach's opinion, but since I am my own coach, I decided on keeping up the slightly faster pace but skipping the so-called speed drills.

Next came the wavering that comes with an added challenge, i.e. "Do I really need to do this and doesn't it count that I already walked the dog?"

Inner coach said, "Just shut up and do it."

Once I committed, it was fine, and I almost got to that point when you're running and not thinking about it. That's where the payoff is, to run along and let your mind wander and not think about what you're doing every step of the way.

One patient, many eye doctors

2011-10-14T19:14:00.000-07:00

I'd been complaining to my optomestrist that my eyes felt gritty and uncomfortable and that, moreover, my botton eyelashes were falling off, and he prescribed drops for dry eyes.

Then I went to my Boston dermatologist, who said that the red rims around my eyes meant I had rosacea, and she prescribed the antibiotic doxycycline. She also said that someone with my history should really be seeing an opthamologist for extra TLC, so when I returned home, I paid a visit to an opthamologist I had seen in the past.

He took one look and said that yes, I had dry eyes, but I also had a relatively common irritation called blepharitis. He prescribed an antibiotic ointment and said I could also dissolve baby shampoo in water and wipe my eyes with a cotton ball.
On the way out, I filled out the paperwork for my files to be transferred from the optometrist's office.

Meanwhile, the dermatologist had done a biopsy on an flaky area under my eye. It was close to my tearduct, and she said that if it came back positive, which she expected it would, I would need to have the rest removed by an opthalmic surgeon, a new specialist to add to my list.

Last year I had similar flaking on a spot on my forehead, and it turned out to be a squamous cell cancer in situ, meaning on the skin. (I never knew that flaking was a sign of skin cancer. This was not your normal kind of dry skin flaking, but bigger pieces of skin.)

The dermatologist was able to get rid of it by giving me a cream that turned the spot really angry and unsightly before it did actually vanish. But I couldn't apply a cream so close to my eye, hence the need for the surgical removal, scheduled for today in Boston.

It was just on the skin like the other one, and it would be under local anesthesia, so I didn't expect it to be a big deal. But Joe was concerned that I might need some help, so he took the day off and drove me.

When we got there, the doctor took a brief look and said I would need so see a different doctor who would perform Mohs surgery, a procedure in which one thin layer is removed at a time and examined to see if the margins are clear until it is certain that there are no signs of cancer.

But, but, but, I said, I thought you were going to just scoop it out now. (Not very scientifc terminology, but when I called my dermatologist later, she said that she had indeed e-mailed this surgeon twice and had thought it was clear that the point of my visit was to have it removed.)

No, the surgeon said, I needed to have the Mohs and then go back to her for the repair.

Now this was seeming a little more complicated to me than one little scooping out session.

At my last visit to Dana-Farber, Dr. Alyea had wondered if some of these problems with my eyes (not the dermatology part) might include some involvement with GVHD. The local opthamologist had thought no, but Dr. Alyea wants me to see a specialist in Boston, so I have tacked that visit onto my next check-up.

While I was at the opthamologist's today, I got the idea that maybe I could at least cancel the appointment with the other specialist and ask the one today if she could check for GVHD.

She said that no, she only does eyelids.

Talk about specializing.

Turns out that she does a lot of cosmetic surgery, so I got another bright idea. Maybe this was the chance to have the eyelid lift I've wanted for a long time. That way Joe wouldn't have taken the day off for nothing.

I have actually raised the eyelid lift question in the past and was told by one particular friend, when I pulled up the skin on my eyelids and asked how I looked, that I looked like a deer in the headlights.

So that's not going to be in the cards, but I have enough eye stuff to keep me busy.

I will come back to Boston to see one opthamologist to check for GVHD, one for the surgery and one to have the hole caulked, and noboday died, but it definitely is frustrating.

Like a woodland faerie

2011-10-12T18:47:00.000-07:00

It was a gorgeous morning and unusually warm for October.

The air had that well-baked late summer feeling, not the crispness of fall. The leaves are really just starting to change, and when I went out for my run I was transfixed by the play of sun and shade through the thinning leaves, mostly still green with some yellow, in the canopy of trees.

I have set 3 1/2 miles as my run, with some speeding up in order to get out of the totally pokey pace and into just plain pokey. I figured it wasn't going to kill me to speed up, and if it did actually leave me breathless, I could always stop. But I think totally pokey has become a comfortable habit rather than a necessary place to be.

Anyway, I was thinking of these two things – the beautiful leaves and the intention to go more quickly – when I started my first loop around Mount Holyoke's upper lake.

I was not looking down at the ground, and then, all of a sudden I ran straight into a root (there are a lot of roots and rocks partly hidden under the leaves) and instead of stepping over it, I tripped. For a second or two I tried to regain my balance, but I couldn't do it, and I fell down hard on my knees.

It hurt.

I rolled over and sat up, rubbing my knees, which were scraped but at least protected from the dirt by my three-quarter length running pants.

There weren't a lot of people out yet. A young woman walking two little dogs stopped and asked if I was OK. I said I thought I was but I needed a second. As we talked, I lay down on my back and extended one leg at a time to see if they worked. The trees looked nice from that angle.

The woman with the dogs told me that first of all she has tripped a few times herself around there and that second of all a student flying by on a bike on a different path had nearly run her and her dogs down. After offering her solidarity in mishaps and wishing me well, she continued on her walk.

One thing's for sure: I love jogging around the reservoir in Central Park, but they would run right over someone lying on the path. (I feel bad for possibly underestimating New Yorkers, but some of those runners are very determined.)

I was about to get up when two more women came along. One said she had been wondering why someone was lying in the path with legs up. But then she realized the person was OK, and her friend confirmed that by guessing the person (me) was doing yoga stretches.

They each took a hand and pulled me up, and I walked with them for a few minutes.

Turns out they were both nurses, and again, one offered solidarity, saying she had just gone for a bike ride and flipped over the handlebars from going too fast. Luckily she was OK.

A little blood was dripping out of the scrapes on my knees, and I asked them, as nurses, if they thought it was OK for me to finish the run and ice later.

"You have to live," one said. "Go on and finish your run."

As I took a step ahead to jog, she said, "You look like a woodland faerie."

Say what?

Apparently leaves were stuck to my back from the fall.

I laughed and then asked her to brush them off, explaining that they would be a signal to my son that I had fallen...again.

As I have noted before, Joe keeps track of my falls and doesn't find them amusing, especially since he was the one who drove me to the hospital after I banged my head on the pavement after a fall last year.

Also, being a woodland faerie is nice and all, but I didn't want to continue my run like that, so the nurse brushed me off and wished me well.

I picked up speed and even ran a route on the way home that included some hills. It was a good run, signaling, perhaps, that it's time to increase again.

Joe saw me icing when I got home and asked, "What happened now?" We had the usual talk about how I need to watch where I am going, which is totally true and and something I am going to try with new resolve.

My knees hurt and swelled up later. They were pretty scraped up, and I had a black and blue mark near my ankle from the fall.

Oh well, none of it was serious, and I got to have those nice encounters at the lake and be a woodland faerie for a moment.

How a jazz musician helped save my life

2011-10-10T08:08:00.000-07:00

When I met my donor, Denise, in May, I learned of the amazing connection that brought us together.

It all started with the late jazz musician Michael Brecker, who had AML and whose search for a donor led to tens of thousands of people signing up on bone marrow transplant registries.

I wrote a story about it for the Philadelphia Inquirer, because Denise lives on the outskirts and Brecker was born there.

The story ran today under the headline "Musician's campaign sparks a lifesaving bone marrow transplant."

Bright moments

2011-10-07T07:47:00.000-07:00

When cancer survivors say that their illness was a gift that caused them to appreciate each day, I don't really get it.

I am sure they are not making it up, but I never found the experience to be a gift that altered my world view. I am who I was.

But certain moments are heightened by the experience. Often this is in a bad way, for example when you feel fluish or tired or your head hurts or whatever and rather than feeling just plain sick you layer on such fears as "Maybe this means I'm relapsing."

Sometimes the memories lead to brighter moments, and when this happens it's as close as I come to understanding what people mean when they say they now appreciate things more.

I am still playing tennis outside, though I have reluctantly gone in when necessary.

It was cool Wednesday morning as I headed out to George's clinic, so I put on long pants. But it quickly got hot, so I rolled my pants up to a little under my knees.

The sun on my legs, and then the breeze against them, felt so great. I immediately flashed back to being in a hospital room with that artificial air, and I thought, this is so much better. My mind had automatically drawn the contrast so that I appreciated the current moment more.

By the way, this happened in a split second. It's not as though I was standing there staring into space letting balls fly all around me.

I had these "bright moments" a few times yesterday.

One was a funny moment when George told everyone it was time to get down on the clay and do push-ups. He did it, and some of us, including me, followed. I can only do "girl push-ups" (hence no chaturanga for me in yoga), and not that many, but I did my best.

Wow, I thought, I'm down here on the clay and I'm even about to stand up...a long way from where I was.

Then there is the matter of picking up the balls that are all over the place during a clinic. I actually always liked picking up balls. I put the hopper in one hand and then the other for a kind of weight-lifting practice. When there is a group of balls, I squat down and throw them in. Down, up. Down up. I like the focus of it all.

Wednesday as I was picking up balls, feeling the sun on my back, I got some clay under my fingernails. Again, the image of a sanitized super-clean hospital room.

I was so happy to be where I was.

Good dinner, great show

2011-10-04T20:39:00.000-07:00

We concluded our long NY weekend with a festive family dinner. Bill's grandsons, Sam and Andrew, came, as did Ben and Meg along with the usuals, Marge, Bill, Jeanne, Bruce, Amanda, Katie and me.

We got a long table in a quiet corner of a favorite restaurant, Destino's, so you could easily hear everyone talk.

On the way back to the apartment, Bruce took these photos of Katie and her cousin, Amanda, having fun running for the bus.

And then, on Sunday, the piece de resistance: Joe, Katie and I saw "The Book of Mormon," the Tony-Award-winning show that is so popular, nobody can get tickets to see it.

Well, obviously you can get a ticket...after months and months of waiting...but it's the theater version of one of Yogi Bera's sayings, about a restaurant that's so crowded nobody goes there.

I got our tickets in June, knowing we'd be in New York for Rosh Hashanah. Even then, I could only get single seats.

Created by Trey Parker and Matt Stone, the people behind "South Park," and by Robert Lopez, who conceived and directed "Avenue Q," the show is absolutely amazing, pushing irreverence to the point that it sometimes makes you wince while also adding an unexpected dose of sweetness.

Pairing the reverence of Rosh Hashanah with the irreverence of "Mormon" might seem like an odd choice, but one thing really had nothing to do with the other, and it was just the way it worked out, so what can you say.

Someone had said that actor Jack Black was in the audience. During intermission, Katie, Joe and I were standing in the back when Katie looked up and said, "There he is." He was standing practically in front of us.

Joe shook his hand and said he was a big fan, and Black thanked him. It was the icing on the cake.

On the way home, we sang some crazy songs.

Sharing the stage with 'the Jewish Katie Couric'

2011-10-01T21:28:00.000-07:00

After the beautiful Rosh Hashanah service at the 92nd Street Y on Thursday, I introduced myself to the rabbi and said how much it meant to me to continue coming to the place where I grew up, where I actually went to kindergarden and also to High Holy Day observances every year with my parents and sister.

I introduced Ben and Katie and said they had grown up going to services there too and that we had all come in from out of town because we wanted to continue the tradition.

The rabbi, Jennifer Krause, seemed touched.

Krause took over in 2004, having replaced the older male rabbi we grew up with. She is incredibly vibrant, and she is a real charmer person-to-person. I learned later, when reading about her, that WNET, New York's public television station, called her one of "New York's hippest rabbis" and nicknamed her the Jewish Katie Couric.

She definitely has a refreshing style.

"Hi, I'm Jen," she had said, extending her hand.

Jen asked whether we would like to have an aliyah the next day. This is when you are called up to read from the Torah, and it is a great honor.

Ben was planning to go back to Connecticut that day, but Katie and I were staying in New York and couldn't possibly say otherwise. Truth is, we never even went to the second day of Rosh Hashanah services, which always has a smaller audience, but I wasn't going to admit that.

And with Jen suggesting it, suddenly I wanted to return. The four-hour-plus service had never gone by so quickly. But that didn't mean I actually wanted to go on stage.

"Uh, I don't speak Hebrew," I said.

"I wasn't even bat mitzvah'd," Katie said.

She told Katie that at age 12 she was automatically a bat mitzvah. I didn't know this, but I couldn't argue with the rabbi. Not speaking Hebrew was a problem, though.

"No problem," Jen said. "We'll find you a non-speaking role."

"I have stage fright!" I said.

This is totally true. Last time I was up on that stage was during a grade school dance recital (we took dance classes there), and that might have been the last time I was ever on a stage.

Once, in high school at Friends Seminary, I had to speak in front of the whole Quaker meeting (the school was run by Quakers but had a mixed student body). At least I was on the same level instead of on a stage, but that didn't stop me from freezing. I only made it through because my friend Margie Kaplan was nearby and whispered the beginning of my speech to me so I could get started.

Jen brushed aside the stage fright issue and said it would be great and to wait there while she asked someone who would know if there was a role left, and in the blink of an eye she returned and said to go talk to Frank, a man standing nearby who would tell us what to do. Saying no thanks was not an option.

Frank said that after the fifth aliyah, we would come on stage and share the honor of dressing the Torah.

After the last reader lifts it over his head, he walks to a chair and holds it on his lap. You belt the two scrolls together, put the covering over them and then place on the beautiful silver decorations, a front plate and a top piece for each scroll.

Easy peasy.

During the service on Thursday, the rabbi had joked that she was glad nobody had dropped either of the two Torah scrolls, because then everyone would have had to fast for 40 days, which would be obviously worse than just fasting on Yom Kippur (the Day of Atonement that ends the 10-day observance).

My first year out of the hospital, I had my share of falls, and I'm sorry to say that a degree if klutziness has stayed with me. That night I had fears of bumping into Katie and causing her to bump into the Torah and knock it down. Which would be worse than any of the falls I have taken, including the one where I landed on my back, banged my head on the pavement and had to go straight to the hospital (Joe can tell you all about that one).

Thursday at dinner in Queens with relatives from my father's side of the family, I shared my concerns with a younger cousin who has dressed the Torah many times. He put it in a young person's vernacular, saying it was easy and adding, "Don't worry, you'll be spiritually pumped."

As the moment drew near on Friday, my heart beat quickly.

Then Frank made eye contact from the stage, our signal to start walking up to the front from our seats.

Katie had already told me she would walk behind me in case I fell backwards off the stairs.

Up the stairs we went. Whew. No problem.

Over to the Torah we walked as the last reader finished.

It really was quite incredible to be up there so close. Suddenly I felt very calm.

Someone was with us to whisper instructions, and, one piece at a time, we dressed the Torah for its return to the ark.

And then it was over.

On the way back down the stairs, I had no worries about falling.

We sat down smiling.

Afterwards, I shook Jen's hand and thanked her.

I hope I can do it again next year.

Back to the old country

2011-09-28T09:16:00.000-07:00

I am heading down to New York today, the annual trek to "the old country" for Rosh Hashanah, the Jewish New Year. It's a time when Jews from all over converge on New York, hence my memories of the holiday usually include a big traffic jam on the way down.

Tomorrow is the day, and before I continue, I want to wish everyone a happy, healthy year that hopefully brings more peace to our troubled world.

Of course my parents are foremost in my memory. We had a tradition. My mother set a beautiful table the night before, and my father loved to cut the round challah and wish everyone a New Year with no round edges, just like the challah. We ate it with honey and had sweet honeydew melon, all for a sweet New Year.

We went to services, where everyone was all dressed up, then to the local Greek coffee shop for lunch with cousins who had also attended, then hung out at the apartment for a little while before proceeding on to dinner with my father's side of the family.

I have followed the tradition as closely as possible, with gaps when I was in the hospital or unable to go into a crowded place. Joe was unable to go because he was in college in Maine, and I missed him, with memories of the two young brothers walking ahead of us in their similar suits, the rest of us behind them remarking on how cute they were.

I was almost going to skip the services at the 92nd Street Y this year. They have modernized, and the cousins who usually go decided to go elsewhere, though we will try to meet for lunch. I thought we would just get together, have a round challah, and say our own prayers. I was sad about it, but with the cousins now leaving, and the price for tickets very high, I figured that's just the way it was going to be.

I ran it by Katie and she said that it was fine, but somehow I didn't get around to asking Ben until a couple of weeks ago. I just figured that it would be OK with him too. I was surprised, and also touched, when he said that actually he would like to go because it keeps him connected to his Jewish roots.

I panicked. The Y fills up. The subscription manager would never just sell me the tickets for the one day at this point. He would say he'd have to discuss it with the board. It would be the equivalent of ruining Christmas.

I called as soon as I could and made my plea, and he was very nice and gave (well, sold) me the seats.

Saved.

It's supposed to be sunny, as it always seems to be on Rosh Hashanah. We'll do our version of the tradition: services, lunch, then Betsy and Michael's, now in Queens. Family dinner with Marge and Bill on Saturday.

And then, true confessions, we have tickets for the Sunday matinee of "The Book of Mormon" on Broadway before we head back. It's kind of an odd combination of events, but what can I say. We were going to be in the city anyway, so it seemed to work out. I think my parents would approve.

Back on the team

2011-09-25T07:21:00.000-07:00

I have been on the fence about rejoining my tennis team.

Comfortable with George's clinic and weekly round robins, I asked myself whether the added pressure of being on an official team was worth it.

But I always wanted to get back on the team, and when Korby needed more official 3.5 players to create a team, a signed up.

Donna and me before our match.

I was always a 3.0, but in August 2007 when Korby and I won our match at the Districts, where the winning teams from the area compete, I was bumped up a level to 3.5. A few days later, I learned that I had relapsed, and I was back in the hospital before I ever played a match at the higher level.

Yesterday, Donna and I played my first 3.5 match.

I had butterflies the night before and talked to Ben, who reminded me that first of all it's only tennis.

Yes, we are playing for brownies and not big bucks, but when you've played league tennis for as long as I have, it takes on a life of its own.

Ben also reminded me that just getting to this point is a huge accomplishment. He said that maybe I couldn't see it that way because I was not in the room that night in 2009 at the family meeting when Dr. Alyea said there were 50 things wrong with me and I might not make it.

"I'm so proud that you are going to walk on the court again and play official USTA tennis," he said. "It doesn't matter if you lose, 6-0, 6-0.

When we got out on the court yesterday, that's what I thought was going to happen after we lost the first set 6-0.

The ball came faster and with more consistency, and my mind drifted off the court. "As soon as this is over, I'm going to get out of here and appeal my rating and get back on a 3.0 team where I belong. Bla, bla bla."

Our opponents were nice...and younger. One of them was tall with a long black ponytail and reminded me of my younger self.

In the second set, after we somehow won a game, I readjusted and thought, hey, maybe we could do OK. Donna reminded me to focus on the ball, not on the score or outcome, and to keep my feet moving.

I reminded myself to just get it over, giving them the chance to miss. It worked, and they made more unforced errors. My serve kicked in, and sometimes their return went into the net. That was a big confidence booster.

When we won the second set 7-5, I was so in the zone that when I saw Donna smiling, I asked, "What just happened?"

It was incredibly hot and humid. "I'm sensing a fall in our energy level," Donna said. "We have to keep our feet moving." She was right. If you show that you're tired –which I was – they will take advantage of your body language. So I danced around (with effort!) a big contrast to when I could barely lift my feet off the ground two years ago.

The score was 2-1 us as we neared the two-hour mark when the match ends. If we won the next game, we won the match.

3-1, us.

Donna beamed and came towards me.

"Did we just win?" I asked.

But I knew the answer.

It was an incredible feeling, one that is still with me now.

Afterwards, we went upstairs for cheese and crackers, and I got a chance to catch up with other players whom I hadn't seen in years.

When I called Ben later, he said, "This is one of the top five stories in all my years of observing and covering sports, from little league to the pros."

Well, I wouldn't go that far.

But it feels great to be back in the fold.

A weekend of friends, family, food and traffic

2011-09-21T19:31:00.000-07:00

Me, Emily, Nancy and Tami at Tami's stepson's wedding.

After staying over in New York Friday night, I practically flew out to South Jersey to Tami's for a beautiful family wedding, spending precious time with my high school friends, their spouses and Tami's extended family.

Despite any worries about traffic, the coast was clear through the Lincoln Tunnel, and the approximately two-hour drive passed quickly.

We stayed over, and I spent some time the next morning at her house, reading the New York Times, talking to relatives I've known forever, drinking good coffee and eating delicious coffee cake.

On the way back to New York Sunday morning, I paid for my good luck on the way over, getting stuck on the New Jersey Turnpike for what seemed like half a day. I was reminded of the downsides of living in the New York area; I drop back in like I never left, even savoring the sounds of sirens, buses and breathing in the smell of the sun on baked pavement, but then I remember. The traffic.

When I finally got off the turnpike, I had to inch my way across town through snarled traffic. At one point when I was trying to get through a cross-walk so as to avoid gridlock, pedestrians insisted on walking in front of my car, even though I had the green light. When I tried to move ahead, slowly, of course, so I wouldn't hit anyone, they gave up and went around but started banging on the back of my car. Ah, New York.

I was so sick of the car that when I got into the neighborhood in the East 70s, I parked in the equivalent of East Podunck, on the wrong side of the street when it came to having to move it, or sit in it, in the morning for street cleaning from 9 to 10:30 a.m.

On Sunday, I went to a wonderful restaurant, Matisse, and sat outside for the New York version of family dinner with Jeanne, Bruce, Aunt Marge and Bill and cousins Serena and Chaska. Chaska was in from California as part of the East Coast tour of her band, Raining Jane. We like to say our cousin is a rock star; she's beautiful inside and out and radiates what you'd just have to call a life force. (Serena is the same way except for not being in a rock band).

(Thanks, Bruce, for the New York photos.)

Serena, Chaska, Jeanne and me at dinner in New York.

They convinced us to go to SoHo, to the City Winery, after dinner to hear some music. All I knew was what Serena said, that it was some kind of folk music that I'd probably like. It turned out to be Tom Paxton, who provided part of the soundtrack for my high school years, and it was interesting to see him so many years later.

It ended up being a late evening, but the next morning I had to get up early and get to the car on time. I got provisions – coffee, breakfast, newspaper and book – and sat in the car for the duration. I was slightly chagrined that the street cleaner never game, but on the day that you don't wait, that's the day the street cleaner comes and you get the dreaded bright orange ticket.

I had lunch with our close friend Harriet from the beach, then headed towards New England, stopping in Stamford, Conn. to hit a few with Ben, have dinner with him and Meghan...and sleep on their couch because it was too late to hit the road again.

The next morning, I left for home. At night, I dropped into bed and konked out.

Folk singer Tom Paxton and me.

Juggling many balls

2011-09-17T06:21:00.000-07:00

I was going for a record and feeling good about it.

The goal: Getting as many things out to the car in one trip as possible. These are the things I juggled: purse, cereal in container, milk in covered cup and open coffee cup (I lost all of my travel mugs...I think they took off with the socks).

I didn't get very far. The coffee spilled onto my sweatshirt, and the milk cup tipped over and left a trail to the car. Somehow I got it all to the car anyway, but then I lost time by having to rush back into the house, throw the sweatshirt into the wash and grab another.

Why the rush?

Yesterday my plan was to get up whenever and take my time driving to New York. From there I would leave the next morning to a wedding in New Jersey, stay over night Saturday and then repeat the two-step trip back home by stopping in New York for a night and heading back Monday.

It was a way to avoid the hassle of public transportation while also avoiding the mistake I made last November when I drove the whole way to Philadelphia (about five hours) and fell asleep at the wheel on the way back, luckily doing no more damage than driving onto a sidewalk and getting two flat tires.

The rush was that tennis had called. If somebody asks me to substitute in a group, it's as though they've placed a mouth-watering slice of chocolate cake in my reach. I can't say no. Especially now, when we are still playing outside as the inside season draws near.

Yesterday was beautiful. A little cold in the morning, but with a clear blue sky. So of course I went.

The group met at 9 a.m. in Longmeadow, on my way to New York but kind of early in terms of the approximately 40-minute drive (30 if there's no traffic) and the fact that I had to pack and get everything into the car.

When it comes to taking a trip, I am notoriously slow at getting out of the house. I figured this deadline would at least jump start me, even though through the previously hot days I hadn't been sleeping well and could have used the extra time in bed.

I did well until the trip to the car. My juggling was in contrast to my rule this time last year during my falling-down period, when I told myself that I was allowed to take only one thing at a time out to the car. I guess it was a way of feeling back to my normal self. Oh well. I actually did make it to tennis on time, spills and all.

I have been playing with a lovely group of women. The tennis is good, and so is the sense of humor. When I first started back last season, I was, understandably, not up to speed and afraid that I would be a drag on anyone who played with me.

Now I feel normal. Sometimes my team loses, but sometimes it wins. "Pretty shot!" someone says to me.
They don't know how much that means.

After tennis, I love to roll the windows down and feel the breeze blowing my hair back. I did that yesterday while continuing on my trip, with a stop at Starbucks first, of course.

It should have taken about two hours. There were so many backups due to construction, I lost track of how long it took. I have been listening to Andre Agassi's book "Open" in the car, which is so interesting and a great way of staying awake.

I have a problem with long drives, and Emily suggested listening to a book. I haven't tried it since a long time ago when I listened to an old radio comedy tape in the car and laughed so hard I missed my exit. But this seemed like a good time to try again.

It worked, up to a point, but the trip was taking so long that I got drowsy and had to pull over and take a quick power nap, one of my great skills. I am able to fall asleep in seconds and wake up 10 to 15 minutes later, totally refreshed.

I stopped at a weird rest area in the middle of the Merritt Parkway, which always make me think of a time when the kids were little and we had hit crazy traffic on the way to the Old Country for Rosh Hashanah. The toilets flushed on their own, but one of the kids was so light that the toilet kept flushing while the child (no names here) was sitting on it trying to accomplish something.

Understandably, this was extremely unsettling, and the mission could only be accomplished when I came in and stood on the toilet seat behind the child. But I digress.

When I woke up yesterday, it took a minute for me to reassess and figure which side I had come in on. No way I wanted to go out the wrong way and have to circle around.

I did go the right way and arrive safely in New York. I even found a parking spot that was "good for tomorrow" on East 71st Street near Jeanne's apartment, where I would be staying.

Big rush of satisfaction, like hitting a winner.

I got to the apartment, changed into my running clothes and felt the call of the reservoir, almost like the call of that doubles game.

I ran to the park, around the reservoir and back.

By the time I was finishing the loop I realized the whole run was too long after that busy day.

But I got back to the apartment with no mishaps, still standing and happy to be my crazy normal self.

Send in the clowns

2011-09-15T06:48:00.000-07:00

We all know that laughing makes us feel good.

A study released yesterday takes this one step further by showing that laughter actually helps increase tolerance to pain. Published by the Proceedings of the Royal Society B: Biological Sciences in Oxford, the study found that the muscular exertion in laughing triggers increased production of endorphins, the brain chemicals that make people feel good.

It tested resistance to pain before and after bouts of laughter, showing volunteers videos and comedy performances while inflicting pain with a freezing wine sleeve over the forearm, a tightening blood pressure cuff or a difficult ski exercise.

(Wondering what kind of people volunteer for this kind of exercise. I've had enough pain, thank you.)

You know instinctively that laughter makes you feel better (I went to the hospital with a collection of "Seinfeld" DVDs), but the study adds a little something more.

Maybe hospitals should send in comedians or at the very least comedy videos along with prescriptions of percoset and oxycodone.

The face of cancer

2011-09-13T20:00:00.000-07:00

In an interview on National Public Radio today, film critic Roger Ebert discusses his decision to write openly about the multiple cancer surgeries that left him unable to speak.

Communicating through a computer program that turns his typed words into speech, Ebert told interviewer Melissa Block that his approach differs from the way his old sparring partner, Gene Siskel, dealt with the brain tumor that took his life in 1999.

"He was intensely private about the situation," Ebert told Block. "I respect it. I think perhaps it influenced me to be very open about my own illness."

The 69-year-old Ebert did the interview in connection with his new memoir, "Life Itself." He had salivary gland cancer, thyroid cancer and cancer of the jawbone, and after reconstructive surgeries failed, he was left with no lower jaw. Unable to eat or drink, he is fed through a tube; he breathes through a tracheotomy, which took away his speech.

His situation is extreme in many ways, but his forthrightness presents an opportunity for patient/survivors in general to examine their feelings about being open and their fears that if they are, they might regret it.

Ebert is a prolific movie critic and blogger; he calls his blog "a venue for my truths," and one of those truths, Block says, was posting a photo of his disfigured face.

"I was advised not to be photographed looking like this," he tells her. "Well, it's how I look. And there's nothing I can do about it. We spend too much time as a society denying illness. It's a fact of life."

Ebert has been through hell, but in addition to talent, bravery, and resilience, he has an advantage: His fame gave him a "pass go" card to pursue his profession with less fear of stigma than ordinary people.

September brings with it the hope for new beginnings (think freshly-sharpened pencils, blank notebooks and back-to-school clothes for everyone and, for Jews, the upcoming High Holy Days of reflection and repentance beginning with the new year, Rosh Hashanah). For those fortunate enough to be back on their feet, it is an especially interesting time to reflect on the question of how up-front to be and how it affects decision-making in the coming year.

I've been thinking of this myself as I ponder the question of where I go from here. I spent the last "school year" regaining my strength and finding freelance work to update my clips and polish my interviewing, researching and writing skills.

I feel great. After a characteristically intense dose of rumination compounded by fear of getting back out there again, I decided to apply for select full-time jobs (one in particular really appeals to me) and to continue trying to get more freelance jobs (I have some ideas and also possibilities that seem likely to turn over in the near future).

There is plenty of thinking to be done. In the meantime, of course, I have to keep up with my tennis game.

A few thoughts on 9/11

2011-09-11T06:25:00.000-07:00

So much has been said and will be said today, I wasn't going to write a thing.

And yet, here I am.

The names are being read aloud as I read this over, and I am reminded that my small slice of sadness is nothing compared to those directly affected. But it happened to us all in some way, so here is what I have to say.

New York is my home town. I've spent my adult life in Massachusetts, but when people ask me where I'm from, I often say, "I'm from New York but, but I live in Massachusetts." I love it here too, yet the connection isn't the same. My parents are gone, but I still have relatives and friends in "the old country," and I continue to go back as much as I can.

Like many others on Sept. 11, 2001, I watched it on TV. Then I raced to the newspaper. The place was buzzing with activity in efforts to put out a special edition for the next day. Everyone had at least one job. I had two.

My official job was trying to track down Jane Garvey, who lives in Amherst (in our circulation area) and
was then director of the Federal Aviation Administration.

My other job was frantically trying to find out the whereabouts of my parents, both lifelong New Yorkers then in their 80s, who had gone out innocently that morning to doctors' appointments.

Garvey was in Washington, D.C., and couldn't be reached, but I did talk to her husband, Hampshire County Sheriff Richard Garvey, who said he had spoken to his wife and she was in a safe place. I honestly can't remember what else he said, but I did get a quote that I sent to the city desk to be included in a "wrap" for the next day.

I couldn't get ahold of my parents, but I did hear from Bruce, my cousin Jeanne's husband, from their apartment in New York. He said that my parents had managed to get back home. I can still hear his words: "We are OK. Our city is not."

My father died five months later of a brain tumor. I was so sad that this was one of his last memories of New York. My mother lived another five years, and at least she got to see the city rebuild.

Life went on, and the city regained its vibrancy, but of course it was never the same.

Four words we love to hear

2011-09-09T20:36:00.000-07:00

And they are...

"Your labs are great!"

Which is what Melissa wrote me in an e-mail today after I got a mid-appointment blood test locally Wednesday.

The test was primarily to check on whether my liver is doing better on the slightly higher dose of prednisone (7.5 mg. daily, up from alternating 7.5 and 5). Melissa wrote that yes my enzymes are down, but since they are still not normal, I should stay on the current prednisone dose for now.

You always want to hear that you can decrease the prednisone, but I wasn't expecting much on that front, so although I'm not thrilled at staying on the same dose, at least the enzyme number is heading in the right direction.

I know I am OK, but even when I feel good, I'm always a little on edge while waiting for test results.

I assume I am not alone in this.

We hang on the words, "Your counts are ... (fill in the blank)."

In any case, I was very happy to hear that my platelets are 106, an all-time high since my transplant. At my last appointment a few weeks ago, they were in their 70s.

Only 42 to go to reach the lower end of normal! Normal is 150 to 450, and of course we are talking thousands, as in 150,000 to 450,000.

So to me, 106,000 sounds great.

Sure beats 3,000, which is what I had in the hospital at one point.

Pittsburgh weekend: Food, fun and friendship

2011-09-08T18:03:00.000-07:00

Emily, me and Susan in Hidden Valley, Pa.

I came back late Tuesday from a wonderful long weekend outside of Pittsburgh with my friends from high school (and for life) Emily and Susan and Emily's husband, Mike, a talented cook and great guy extraordinaire.

I flew to Pittsburgh, where Emily picked me up. We then drove about an hour and half to their country house in Hidden Valley; Mike met us there, and Susan drove from Washington.

When you are with people you've known for a long time, so many things are in context. That makes it very comfortable, because you don't have to fill in the blanks. We laughed a lot, ate a lot of Mike's great cooking and, of course, talked a lot. We also watched a couple of movies and ate too many peanut M&M's.

On Saturday, four of us (Susan, me, Emily and a friend of hers) biked about 18 miles round-trip along part of the 141-mile-long Allegheny Rail Trail. The section we were on ran alongside the Casselman River; it was flat enough that we rode in twos and talked along the way while enjoying the scenery.

Rain was forecast for Sunday afternoon, so we got our exercise in during the morning, hiking three miles through the woods. This path had some (admittedly little) hills, so the distance we went was plenty for me.

We watched some of the US Open, and I studied the players swings' in awe, taking note of their
lightening-quick follow-throughs and constantly moving feet.

Back home I have really wanted to play, but my clinic and my doubles game (like some of the Open) was canceled due to rain.

That's OK, because out on the court after watching a championship, I often play worse than before.

"Move your feet!" my inner coach says.

I reply, "They're too heavy. I'm doing the best I can."

And then from my inner coach again, "Don't direct the ball, follow through! You saw how they do it."

Me: "Duh, I know what I should be doing. My arm won't go that fast."

I'm sure I'll end up playing – and watching more of the US Open – this weekend.

It will be fun, as it always is. But I kind of liked sitting on the couch in Hidden Valley, just watching the tennis, eating M&M's and talking to friends with no thoughts of going out to play while I was there.

No longer an empty-nester

2011-09-01T19:02:00.000-07:00

Things have changed since I embarked on my new life as an empty-nester this time last year.

Last year, Katie had just started college, Joe was returning for his senior year, and Ben was out in the working world. After a busy summer with two kids around, it was suddenly just me and the dog. I stood in the quiet house and cried. But pretty quickly, I adjusted to the rhythm of life on my own, just as people said I would.

This year, as I drove Katie back to Brandeis (on Monday), she remarked on how it was so different from last year. She had been nervous, and I was, well, I was trying not to freak out. On Monday, she was so excited that she was practically jumping up and down in her seat. I shared her excitement – it felt like I was going back to school – and I also knew that I would not sink through a hole in the floor when I went home without her, although I already miss her.

People had also said – as I well knew – that they come back, sometimes to stay.

The two youngest did, of course, come back for the summer, and now it turns out I will have company for the whole year.

Having gotten a job as Youth Initiatives Coordinator at the American Cancer Society's regional office in nearby Holyoke, Joe will be living at home.

We all know how hard it is to find work, and I am so proud of him for finding this very meaningful job. He took the terrible experience he had with my illness and turned it around so that he can use what he learned to help others.

While he's home, I expect him to continue helping me with all of my stupid computer questions.

Speaking of cancer

2011-08-28T14:39:00.000-07:00

A column in today's New York Times, headlined "Cancer: Fighting Words," revisits the topic of combat metaphors about people with cancer, as in saying that they are fighting, or battling an invader.

The author, Daniel Menaker, a recurrent cancer patient, says he supports "the demilitarization of cancer talk." He says it seems "more calming, less victimizing," to think of the disease as a problem to be worked on. He says that by putting the disease into the context of a fight, those who die might be considered losers, and he quotes a blogger who asked, "Does it mean that if I croak it's my fault?"

On the other hand, Menaker writes that he understands how it got this way – cancer does invade different parts of the body while other diseases stand still. And he gets that warfare language helps provide motivation for the task ahead.

He reasonably suggests that there is room for looking at it both ways, but falls short in suggesting "a rational, problem-solving approach" in public discourse and a martial attitude in more private or interior contexts.

His proposed segregation of attitudes doesn't work for me.

When I was battling for my life, according to this author I should have said I had "a problem" while being quiet about my knowledge that an "invader" (a military term) was seriously threatening me.

It was more than a problem. I wasn't dealing with leukemia the way I dealt with my foot problems.

I do think that in using warfare terminology, people need to be more clear that a patient is a not loser when treatment fails.

Also, most everyone talks about the need for a positive attitude, but some go overboard on this. Of course a positive attitude helps, but if you don't have it every day, or if cancer gets the upper hand, does this mean you haven't been cheerful or strong enough?

I think often about my beautiful friend Ann, who died of lung cancer in her 40s and who was one of the most positive, cheerful people I ever knew. Sure she complained about things, but she was just naturally an "up" person.

When I hear this garbage about "positive attitude or else," or detect an implication that death means not having fought hard enough, I think of Ann and know that's not how it works.

She survived much longer than expected, and even on days when she felt sick, if you asked her how she was, she'd say, "Good." She'd lengthen out the word on bad days, but that was the only sign she often gave.

So yes, modify fighting metaphors when appropriate, and leave room for people who prefer a problem-solving approach, but don't tell cancer patients to talk openly about their "problem" while whispering about their fight.

Birthday celebration

2011-08-26T06:43:00.000-07:00

Had a good "original birthday" on Wednesday.

Tennis clinic, dog walk with Deb, coffee at Starbucks, a little reading and writing, sitting at the computer watching the Facebook greetings roll in (only kidding, sort of, but it is fun), talking to friends/family, missing my parents but appreciating their wonderful lives, dinner out with Joe at Joe's Pizza and Spaghetti House in Northampton (Katie was working), talking to Ben on the phone, and then, back home, watching an episode of "The Gilmore Girls" with Katie.

And celebrating another year of life.

Wonderful weekend in Wellfleet

2011-08-23T15:26:00.000-07:00

The beach at Maguire Landing in Wellfleet

There is nothing like a walk along the beach for letting the breeze blow all your cares away.

I took that walk on a beautiful long weekend in Wellfleet. We scheduled it so that all three kids could come; as they get older that gets harder to do, and it was such a pleasure to have them together.

We got a lot in: Sitting and walking on the beach, jumping into the still-cold Atlantic ocean, a walk/swim on the bay, a little shopping, a little hanging around, and dinner at The Beachcomber, a restaurant on the beach. Diane, David and Sam came later on, and we had a fire on the beach at night under a canopy of stars and made s'mores while watching the harvest moon appear like an orange apparition that changed shape as it rose in the sky.

Ben, me, Katie and Joe

We also walked over Uncle Tim's bridge, a wooden footbridge over a marsh leading to a path along the harbor. We stopped, as we have in previous years, to sit on a bench and enjoy the view of town across the water. We browsed through and wrote in the "bench book," left there by a local resident who started a tradition of visitors stopping by and writing in it.

I had made a face the day before upon mention of my upcoming birthday, and Katie had said, "Why wouldn't you celebrate another year of being alive?"

I thought of her words again in that beautiful spot.

There is a lot to celebrate.

Katie and Joe with the bench book

Views from the bench

Diane in front of Hatch's Produce.

Bicycling becoming more of a breeze

2011-08-18T19:23:00.000-07:00

Recently Katie and I went for a "real" bike ride, as opposed to the toodling around I did last time.

We went up and down hills to McCray's Farm in South Hadley, one of our favorite destinations (by car) when the kids were little. These were not killer hills, and they never bothered me before, but, as I said to Katie and Joe before we headed out, "I'm only 2 1/2 years old now."

At the first hill, I thought, "This is going to be too hard, I can't do it." But then I remembered a motto from my longer-distance running and biking days: Don't look too far ahead at the hill or you'll freak out. Look down and only a short distance in front of you, glancing up ahead from time to time. Of course you want to enjoy the view, but look around only when you're cruising along.

It occurred to me that this tactic of looking only a short distance ahead applies to most of life's challenges. When I got diagnosed, I thought, "I'll never be able to do this." The days when I was able to narrow my focus were the best days mentally.

Anyway, I got to McCray's with a little huffing and puffing, but no worse for the wear. Once there, we enjoyed the view, visited the animals for old times, and since it is after all a creamery, had ice cream.

On the way back, I thought how beautiful it is in the Pioneer Valley, not the intense beauty of the ocean or of high mountains but the calm beauty of rolling hills.

Last Sunday, when I was in the Boston area for my checkup, I cycled through more beautiful countryside when I took a ride with my college friend Rook starting from his home in Weston. It rained lightly on and off, but that was OK. We went almost 20 miles, and I really got into the rhythm and overcame the fear of falling left over from last summer when my balance was out of whack and I actually was falling.

We went through Lincoln and Concord, passing Walden Pond and other historic sites. As Rook said, it was hard to believe we were just 30 miles from Boston.

There were some small hills and one big one, and although I went pretty slowly, I didn't get off.

When I picked up speed or cruised along, I remembered why I had liked cycling so much. It's that feeling of being free, of flying along, of clearing your mind and of seeing your surroundings so much more vividly than when you're driving.

Monday report

2011-08-16T07:17:00.000-07:00

I go to Dana-Farber for a checkup every five to six weeks now, and yesterday was my day.

Everything was good except for GVHD acting up a little in my liver, meaning I have to increase the prednisone again to 7.5 mg. a day. Every time I go down past this level, my liver function numbers increase slightly, causing me to have to go back up.

It could be much, much worse, but it's frustrating because I need to stay on several other drugs while I am on prednisone. I thought it was a bad idea to stay on prednisone too long, and Dr. Alyea said that while it's true at higher levels, many patients just have to hover in the single digits indefinitely.

Otherwise, my white blood count was normal at 8.1, hematocrit almost normal at 31.4 (normal is 34.8-43.6), and platelets up a little to 86 (normal is 155-410).

My assignment was to go to the U.S. Open and report back to him.

As for the optometrist who left that odd message Friday, it turns out that, given my mother's glaucoma history, he wanted me to schedule an additional test to measure peripheral vision so that we could use it as a reference point later.

He apologized for the alarming call.

No, I didn't really think my brain was going to ooze out through my eyeballs, and I did settle down and figure that it was something procedural. Yet I did want to advise him, but refrained, that if you want to call patients late on a Friday afternoon when they can't return your call, just say, "I wanted to schedule additional tests as a reference point given your history," rather than, "I need to talk to you about the film I took of your eye."

Why create any unnecessary concerns?

A little bit crazy

2011-08-12T20:34:00.000-07:00

My mother and father both had glaucoma, and so my sister and I get our pressure checked regularly.

My father's was controlled by drops, but my mother had the misfortune of having been misdiagnosed by a trusted family opthamologist who said she had a cataract. Seeking a second opinion, she went to another doctor who told her she actually had glaucoma and that my mother, a painter, had already lost some of her peripheral vision (lawsuit followed, but the damage was done).

My optometrist did my regular exam this week. The pressure checked out fine. Then he took a photo of my inner eye to double-check and use for future reference. He showed me the photo, pointing out my optic nerve and my brain. I couldn't distinguish it very well, but I got the idea. Pretty cool.

That looked fine, too, he said, although it was close to a marker at which we would have to keep an eye out, so to speak, for glaucoma.

Merrily, I went my way, making an appointment for next Tuesday to do a contact lens recheck. Back home, I announced, "Hey, I saw my brain!"

This afternoon I went out for a while and came back to see a message late in the day from the doctor. He wanted me to call him to discuss the films he took.

I called him back, but he was gone for the day.

What the .....?

He leaves this at the end of the day when I can't get in touch with him when he knows my whole health history – not just my parents' glaucoma – and knows that I am supersensitive about everything? My heart skipped a beat.

I corralled Joe and told him the story.

"Great," said Nervous Nellie, a.k.a me, so named by my sorely missed wonderful nurse friend Vytas. "So what if my brain is about to pop out through my eyeballs or what if I really have advanced glaucoma and am beginning to lose my eyesight or what if....?"

Joe said to hold on, that if it was serious he would not just say casually to call back later, and that it was probably just a technicality or some other minor thing.

We went through several rounds of this before I finally gave it up ... sort of.

I still don't understand why a doctor would leave a message like that when he knows I can't get ahold of him and when he also knows I'll see him next week anyway.

I guess I'll find out when I call on Monday.

Annoyed by weeds, appreciating flowers

2011-08-11T07:09:00.000-07:00

And now for something trite but true:

In life as in gardening, acknowledge the weeds, but enjoy the flowers.

I have been telling myself this lately as the weeds in my garden have a field day. The flowers are pretty, too, and I have enough to make an arrangement for the kitchen table, but the weeds seem to cry out, "Pull us, pull us, or we will annoy you until you do."

As noted before, I am not supposed to pull weeds until I am off prednisone. My compromised immune system makes me more susceptible to inhaling fungus from the dirt, and since I've already been there, done that and had a fungal pneumonia excised from my lung, it's important to stay away.

But sometimes I can't resist, and I bend over and yank out a few, turning my head or holding my breath. (And then there's someone in particular who has to listen to me panic and ask "Am I going to get sick and die?" and who then reminds me that I probably breathe in worse things at the shopping mall...thanks, Deborah.)

My kids are supposed to weed, and they do, to a certain extent, but unless I had them out there for hours, it would never get done. I drive myself, and them, crazy by nagging them. Good Morning! Pull weeds, pull weeds!

And then, the darned things grow back. I asked a friend who has done it before if she would do a little weeding; she said yes but hasn't called back. It's probably not high on her list, and I can see why.

Finally I broke down and asked another friend who does work on the house if I could pay him to clean up the garden. He said sure, he could. He's scheduled to come in a few days.

I think it will be worth it.

In the meantime, on the positive side, I am enjoying the flowers on the table: yellow and white zinnias, pink and yellow snapdragons, and a hydrangea that I separated into clumps of blue, green and blue-green. Last year the hydrangea blooms were all blue, but this year they are blue, green and even a little pink.

The hydrangea is humongous this year, growing so tall and wide that it is threatening to become the hydrangea that ate the house.

I need to clip it back from time to time, or else I will have another problem to worry about.

Running in loops

2011-08-07T13:58:00.000-07:00

Running one large loop is no problem. Once you get half-way around, there's no point in turning back because, obviously, you would still have to go the same distance as you would by completing the circle.

Running smaller loops is a different matter. Unless you are in a rhythm, or unless you are extremely disciplined, you might be tempted, every time you come around to your starting point, to call it a day.

It presents advantages and challenges to people who are either starting fresh or who, like me, are trying to start again after a break due to illness, injury or some other reason. It's good that you have a place to stop and go back home if you just don't feel up to it, but not so good if you stop because you can't give yourself the extra push needed to keep going.

Beginning, or beginning again, is sometimes rewarding and sometimes just plain no fun. I guess it's like running, or life for that matter, in general. You have to slog through the bad days to get to the good ones.

I thought of this today after deciding to get up early and go for a run. I've been doing other things, but I haven't run in the heat. After healing from my stress fracture, I had built back up and set three miles as my basic run to build on after I felt comfortable with it. Obviously not a long distance, but long enough for me at this point.

Many people run to music, but I never did. I like listening to the sounds around me and letting my mind wander.

With so much to look at, running in New York or Boston is easier. But there's always something, first and foremost, of course, the sound and feel of your own footsteps and the rhythm of your breath.

Today the first loop around the lake (one mile) was fine, but as I neared my starting point I thought, "It's getting hot already, I did enough, I'm going home." But then I did a systems check. Feeling OK? Yes. Feet hurt? No. Out of breath? No.

So? Your excuse? Um, nothing. OK then.

I passed by my starting point and distracted myself by paying attention, exchanging greetings, and picking up bits of conversation.

Sun on leaves. Water rippling. Birds calling.

A couple comes around in the other direction. I say, "Getting hot already."

"At least you're wearing the right hat," he says, acknowledging my Red Sox hat.

Two college-age women speed past me.

"Oh my god," I mutter.

Correction: "Hey, you never ran that fast, anyway."

Behind me, a man tells a woman, "Somebody really hates me."

The students pass again.

They are laughing. One says, "...when I was running three hours a day..."

An older guy running about my speed comes along in the opposite direction. He gives me a big hello.

That's more like it.

The second loop done, I head back, past the bushes that smell like the beach, around the Mount Holyoke Campus a little, up some small hills. I have something left for the incline leading to my house and even speed up, which is probably like my old slowest pace or even slower, but, again, that was then and this is now.

Home sweet home.

I drink water and eat a little watermelon, and then it's coffee time.

When do you stop playing the cancer card?

2011-08-03T19:16:00.000-07:00

First of all, I know it's not a game, but that's the way many of us refer to it, partly in jest but partly seriously.

The question comes up when you have enough distance to wonder under which circumstances you might be tempted to use cancer as an 'excuse' for perceived weakness.

A larger question is at what point you stop mentioning it so frequently. This is not the same thing as 'playing the cancer card,' but I noticed that when talking with someone new the other day, I didn't even mention it when we discussed our running routines.

In a way that surprised me, because I am used to describing myself at least partially in the context of my medical odyssey. I was pleased that I had enough distance to describe myself in another capacity, i.e. runner.

If I had provided any caveat, it might have been that I am coming back from a fractured foot rather than I am coming back from my fourth bone marrow transplant and a coma. (We did get onto the subject of stress fractures, and this die-hard marathoner had me beat, having already suffered four.)

I'm more likely to use the cancer card when playing tennis with good friends. I'll say jokingly, "Sorry I missed that ball, but I was in a coma not too long ago." I try not to do it often, because a little joking about that goes a long way.

I thought about this today at our Wednesday clinic with George. It's like camp for grown-ups. We do drills for hand-eye coordination and racquet control and play little games before we actually get to play doubles. (It's a pretty inexpensive camp: More than three hours of drilling and playing on clay courts overlooking the Connecticut River for $10 each.)

In one of our games today, George placed a tennis ball on a pretty high post at the center of the net. We played mini-tennis (using only part of the court), and if you hit the post without letting the ball bounce, your team won the game.

I hit it twice, and our team won two games to one.

We reported our scores (and told him which of us on the three courts had hit the post) and sat down for a break. George said everyone was welcome to return at 6 for a similar clinic.

"Ha!" I said.

He looked at me quizzically.

"You New Englanders are all the same," said George, who happens to be one too. "You wait all winter for summer to come, and then all you want to do is sit inside your air-conditioned homes."

Hey George, we were outside right then in the heat, but what the heck.

Now that I write it, his comment sounds kind of harsh, but if you knew him you'd know not to take him too seriously and accept comments like that as part of the banter.

I didn't speak loudly enough to share this with the group, but I did lean over and say to him just as we were about to return to the courts, "People tell me I should try not to overdo it. You know where I came from."

He does know, because he helped bring me back each time.

He looked at me blankly.

"You think I'm far enough past it that I should stop using that as an excuse?" I asked.

"Yes, anyone who can hit the post twice doesn't need to do that."

OK then.

Running after tennis balls

2011-08-01T07:28:00.000-07:00

I still haven't gotten back into any running routine. I'm waiting for the heat wave to pass...whenever that will be.

But over the weekend I ran as much on the tennis court as I might have done around the lake.

On Saturday I played with Donna on the beautiful clay courts at the Field Club in Longmeadow. Our doubles game fell through, so we decided to hit together. After a while we decided to play some singles.

Way back in the day, I was a speedy singles player, but this is now. Still, it went really well. We both had fun and actually had some real singles points.

Running to the net on clay is so much easier. You hardly feel the stress on your feet. I surprised myself by how easily I got up there.

So there we were playing singles. When we stopped, we talked about how Donna had helped me come back on these very courts. At first she repeatedly reminded me to take only one step in each direction (so I would not fall.) Next time I was allowed to take two steps. And so on and so forth, until this past Saturday, there were no "rules" except to enjoy myself.

Once or twice I glanced over to the next court and watched the yellow ball float against the blue sky. I just loved the sight. Later we talked about how lucky we are to love this game so much. Of course, I said, I should have been looking at the ball on our court, but what can you do.

Yesterday I hit on the hard courts at Mount Holyoke College with a 21-year-old college student and former high school player who was nice enough to put up with me. Seth, my friend Nancy's son (they live in Syracuse, N.Y.) is working at Mount Holyoke for the summer. He's a really nice kid.

We hit for almost two hours. He was out of my league, but I think I gave him some good rallies and practice hitting overheads and serves.

I was getting pretty tired by the end, getting to the point when I should stop already. But I wanted to finish with a good rally. Most of us are like that, but there was an added layer here.

"Do you really need to exhaust yourself trying to impress your friend's 21-year-old son?" I asked myself.

The answer: Yes.

When I got home, I lay down on the floor.

All's Well That Ends Well

2011-07-29T08:51:00.000-07:00

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.

Exjade and other excitement

2011-07-23T21:40:00.000-07:00

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.

Closet shopping takes you places

2011-07-20T21:00:00.000-07:00

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.

To glom, or not to glom

2011-07-16T05:27:00.000-07:00

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."

Whoa.

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.

Good tennis, good counts

2011-07-12T20:46:00.000-07:00

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.

The fear that lurks beneath the surface

2011-07-09T12:15:00.000-07:00

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.

Taking baby steps a little faster

2011-07-05T07:30:00.000-07:00

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.

Hello bike

2011-07-04T06:51:00.000-07:00

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.

I have a new idol

2011-07-01T10:46:00.000-07:00

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.

Getting back into the swing of things

2011-06-28T09:19:00.000-07:00

I didn't mean to run so soon after getting my boot off, but the other day as I was walking around the lake with Maddie, my feet just started jogging. (Really!)

I went once around (a mile), with Maddie by my side, and then walked another mile. I felt fine, and I made sure to just walk the next couple of days.

On Sunday, I played two sets of doubles on a clay court with Donna, Deb and Korby, friends from my tennis team. The clay felt great under my feet, like playing on cushioning. The first set, I felt rusty, and Korby and I lost 6-1. I was happy to be out there, but I slipped into some "negative self-talk"...can't do this, can't do that.

"Hey, we're just out here having fun," Korby said.

And Donna reminded me, "Look at where you came from. We thought we'd never see you out here again."

Oh, right!

Either I warmed up or the reminders relaxed me or both, but the second set was fine. Korby and I brought it to a tie-breaker which we ended up losing 9-7, but obviously at that point it could have gone either way, and I had found my groove and started having fun.

It got hot, and by the end I was ready to stop and have a frozen lemonade. Actually, true confessions, I was dragging a little.

I summarized for Meryl this morning, partially in jest but partially serious, "I played hard and then the next day I thought I was dying of something."

She reminded me that age is a factor here too. Oh, right again! Sometimes I kind of forget about that.

Today I will probably just walk again and try to do some exercises. (Boring.) Tomorrow I might go to a tennis clinic with George.

Maddie has been enjoying her walks. She always goes for a swim, and we have been meeting all sorts of interesting dogs. The other day we came upon a young woman with a chihuahua puppy named Little Dog. Sometimes Maddie doesn't react well to little dogs, so I warned the owner and pulled back on the leash.

But Maddie usually just gets ornery when a small dog is aggressive and barks. This one seemed oblivious, so we let them say hello. Maddie was very polite, seeming to understand the need for gentleness with a creature that was not much bigger than her head. They lost interest in each other quickly; I'm not sure they even realized they were the same species.

Things have been falling into place here, the long days providing a sense of ease.

The other night, we were are own little version of domestic harmony.

Joe cooked on the grill, Katie weeded in the garden and sang, and I made salad and puttered around.

All was well.

Different ways to look at luck

2011-06-24T22:46:00.000-07:00

When I went for my cleaning today, my dentist said, "You are one lucky woman."

He was referring once again to the fact that I have any teeth left at all after being immunosuppressed for so long. Instead, I have had to lose only four teeth.

Dr. Debian had started my dental drama when he told me months ago that four teeth were so decayed that they would need to be extracted. I was not very happy to hear this.

A short recap: I had two teeth extracted by a local dentist and then the remaining two removed by a dental surgeon at Brigham and Women's Hospital in Boston after it was determined that I would need a platelet transfusion before the procedure because my platelet count had dropped too low to ensure proper clotting. Both times, the dentists pulled the teeth just with Novocaine, although I did get a lot of help from a hefty dose (2 mg.) of Ativan.

It was after that second extraction that the dentist said he noticed a lesion that he wanted to biopsy for possible tongue cancer. The results came back inconclusive, and I was sent to a head and neck oncologist at Dana-Farber who ordered a throat scan and said she would need to remove the spot in a two-hour procedure under general anesthesia.

I was relieved when the throat scan came back negative for cancer, but I was not feeling especially lucky about the whole thing.

The May 31 surgery went well, and at my follow-up visit a week later, the surgeon, Dr. Laura Goguen, said that she had found severe dysplasia (pre-cancerous cells) over an area causing her to remove more of my tongue than she had expected. On "normal" people these type of cells could probably just be ignored, but on someone with a history like mine, they are more likely to turn cancerous.

By the way, the area is not really that large, but she took a noticeable scoop out from the side of my tongue.

She told me I was very lucky. "That was a good catch by the dentist."

My tongue hurt a lot, and it is still causing me enough pain that I haven't gotten off of the percocet. (Dr. Debian said today that because the area is so sensitive, it is likely to hurt for a while.)

Sometimes I look at the many people who have not been through the wringer, and I do not feel especially lucky at all.

But of course I know the many ways I am lucky, starting with the fact that I am alive to write this and that I am doing well and feeling good. And then there are all my many other blessings.

I guess it's all a matter of perspective.

Yes I am lucky to still have so many teeth, and yes I am lucky that they found the spot before it turned into cancer. And I am also lucky that at my cleaning today, nothing turned up to give me more trouble.

On my way out, the billing clerk said I owed nothing for the visit because my insurance covers cleanings but not fillings or anything else.

As I turned to leave, I said with a smile, "I guess I'm lucky that I have fewer teeth to get cavities in."

From tennis to television

2011-06-21T11:42:00.000-07:00

I was asked to substitute in a doubles game yesterday morning, and I wouldn't have played two days in a row, but I couldn't resist.

I joined three women outdoors in Longmeadow for about an hour and a half of play – two sets of doubles – and held my own and had a good time. They were all very good but fun and low-pressure, just right for me. It was a beautiful day, sunny with blue skies, and it was great to be playing outside.

Anonymous (who I wish would say his or her name) wrote after my last post that I am already over-doing it. Actually I am trying to keep in mind that, having just gotten out of the boot, I need to start back slowly. Of course "trying" is the operative word here. Yes, I do get carried away.

Yesterday afternoon Katie and I went to Northampton for an errand. Afterwards, we agreed it was too nice to go straight home, so I got a cappuccino and she got a mocha, and we walked around.

It was late afternoon when we got home and headed to the lake. I took Maddie for her walk, and Katie ran circles around me. A lot of people and dogs were out. I stopped and talked to a man with a tan and white puppy that I wanted to take home (the puppy, not the man.) Maddie also liked the dog, whose name was Rosie, and ran circles around her.

We continued on our way.Len Brouilette, the high school running couch, came running up behind us.

"Hi Maddie," he said as he passed.

Len often walks his dog, Simba, around the lake, and a lot of us say hi to the dogs rather than to the people.

A woman I know was also jogging, and we exchanged a couple of words while she passed.

Katie and I ended up together at the end. She had done three loops (a mile each) to my one, which was really a stroll and not exercise.

We walked home together and had a dinner of leftovers. Then we continued in our marathon viewing of the entire "Gilmore Girls" series. We had watched some seasons that she had received as birthday gifts; now we are on the fifth season, which we took out of the library.

Usually we watch one, maybe two episodes at a time. The odd thing is that, having watched the seventh and last season, we know how it turns out, but the characters are so well-drawn and the series is so well-written that it feels like you don't know what will happen.

(Are you laughing at me? No, it is not high-brow, but it is terrific.)

We each got a snack and settled in for an episode (about 40 minutes). It was very unsettling, (OK, romance-wise for Lorelai and Luke), so we agreed to watch another in hopes of a happier resolution...and of course we had to get another snack.

This one ended up even worse. What to do?

Katie wanted to watch another.

"But we're running out of food!" I said.

True confessions: It was late, but we went for a third, a record for us, accompanied by corn chips.

Things didn't turn out any better, but at least there were funny parts, and we went to bed tired but smiling.

My stress fracture has healed

2011-06-19T13:06:00.000-07:00

I am happy to report that I was released from the air cast on Friday.

The podiatrist (yes, Seinfeld fans, he is a doctor) said the bone on my foot healed very well, probably because it was strong from running and tennis.

Taking my first steps without the boot felt odd, but I adjusted quickly. Now I have to remember to start back slowly...not an easy thing for me to do. I don't think I'll run for a while; I'll just walk farther with Maddie and maybe throw in a few jogging steps every now and then.

I went to yoga yesterday, and today I hit for about an hour and a half with George, our coach. It's a beautiful day here, and we played outside on clay courts near the Connecticut River. It was so great just to be there.

George said I did very well. He said my arm seemed strong, which made me especially happy because it shows that my weight-lifting over the past month has paid off.

I felt good, except for getting winded after hitting a lot of balls. I had a fleeting crazy thought, as I often do when I get tired exercising. It goes something like this: "Oh no, I'm tired, maybe my red count is going down and maybe other things are too!" Then there is the correction: "No, you just hit a lot of tennis balls after being away for more than a month, and now pay attention or the next ball is going to go flying by." Maybe it never ends. Sigh.

George plays a little game in which you can't progress to the next drill without hitting a certain number of balls in a row, depending on the date.

So, today being the 19th, I had to hit 19 forehands before we could work on backhand. Then 19 backhands and then 19 alternating.

I got into trouble on the backhands and kept hitting into the net somewhere around 10, 11 or 12.

"Four more tries, and if you don't make it you do 19 push-ups," he said with an impish smile.

Ha. That will be the day.

I got the 19 on the next try.

Two of a kind

2011-06-16T19:57:00.000-07:00

Ellen and me on the steps of Kendall Hall
at Mount Holyoke College.

Turns out my friend Ellen O'Neil is in an air cast also. Ellen, Smith College's cross-country coach, is uncertain exactly what has been causing her pain; she thinks she aggravated an old ankle injury by running and will find out for sure tomorrow.

I also have an appointment tomorrow to gauge how well my stress fracture has healed. My foot has been feeling pretty good. My only concern is that after Ellen and I met on the steps of the gym yesterday and today, I walked with her a little farther than I have been going because I am getting antsy and because both days were nice. Now I am feeling a few twinges. I have remembered not to use the comfort of the cast as an excuse to overdo it; I hope I didn't blow it the past couple of days.

Anyway, we did have two nice walks, talking about a lot of different things other than our matching leg gear.

I'm still taking Percoset; without it my tongue still hurts too much. It is healing well, but as you can imagine, it is a sensitive area. I am taking less than I did immediately after the surgery a little more than two weeks ago, and I am no longer watching the clock to see when I can take more.

The day began and ended with sitting on steps.

Maddie has been shedding a lot and needs to be brushed frequently...or else you just end up vacuuming or sweeping her hair up off of the floor. The sun was just beginning to set when I finally got around to it today. I took my coffee outside and sat on the step in front of the back door with the dog in front of me. The grass looked extra green, the flowers bright. Maddie sat patiently, sniffing the crisp air and watching the cars go by. It was one of those small moments where everything seems right.

Plus, I sat down and got up without getting into any more trouble. It wasn't so long ago that once I got down, I needed help getting up.

My day in court

2011-06-12T16:50:00.000-07:00

Jim and I went to court Friday to modify our child support agreement, and while he gave some information to one clerk, I talked to another who was gathering other papers.

It was early at Hampshire Probate and Family Court in Northampton,

and we were the only customers. "My" clerk admired my purse. I told her where I got it (Skera Gallery in Northampton), and she said she got hers at a similar store. We both agreed we loved these little works of art that are always a conversation piece and are a style called Great Bags made by Maple Leather Company.

No, I have not mistakenly set out to write a post hawking purses. So you might wonder why I am talking about my purse.

Because I've been to that courthouse with Jim too many times to count, and not all have been under circumstances so relaxing that I can chat with a clerk about my purse.

The first time, we went before a judge to file our divorce papers in 1997. There have been modifications since then, and sometimes we were so angry that talked through our lawyers and could barely look at each other.

Friday's was a routine visit to decrease support upon Joe's graduation from college. I wasn't happy about it, but I wasn't emotional. We simply arranged a time when we could both go, and Jim wrote in an e-mail that it was his turn to buy the coffee and muffins afterward.

We didn't know what the exact amount would be; although we could have done the math, we asked the clerk to run the pertinent figures (mainly income and number of children) through the Child Support Guidelines.

Then we waited for the information to print out.

He thought it was going to be lower.

I thought it was going to be higher.

But as we've heard before, plain and simple, "The guidelines are the guidelines."

I sighed.

"I'm going to have to buy less cereal for the children," I said.

"I'll be able to buy more gas for my car," he replied.

With that, we went to Esselon for coffee and blueberry scones.

We've been in a calm period for a long time. We still have two major things in common: the kids, of course, first, and newspapers, second.

I'm a freelance writer and therefore not directly involved in daily journalism anymore, but I can talk about it for hours. (I've been gone from the Sunday Republican for years, but when I talk to friends who work at the paper, I still say "We," as in "We need to do such and such.)

Jim – and Ben – both still work for papers, and I can talk shop with them for hours about certain papers in particular and the business in general.

So Jim and I talked in a relaxed and comfortable manner. During these times you remember that the qualities that drew you together – and that kept you together for years – never really go away, and you're lucky to plug back into them. Of course you divorce for a reason, and so you unavoidably remember why you hated your former spouse, but this doesn't happen all the time.

Jim, who lives in Connecticut, slept on our den couch Thursday so that the drive to the courthouse in Northampton would be shorter Friday and so we could go together. He got here after work and watched TV in the den with Katie and Joe. Katie sat next to him on the couch, looking happy as a clam (whatever that means.) Maddie, having been displaced from her normal spot on the couch, didn't look as happy, but she wanted to be in there. Joe was in good form. I wandered in and out. It was all very lively.

When I came downstairs in the morning, Jim had made a pot of coffee.

Goodbye Dori

2011-06-09T08:49:00.000-07:00

The Internet provides immediate closeness to people with this terrible disease. You don't have to get to a support group or plan meetings. Click and you have found a new kindred spirit.

That's the way it was with Dori Brown, who died Tuesday of AML, the same kind of leukemia that I had. We never met or even talked, but thanks to the words of husband Jim on his blog Run for Dori, I felt like I knew her. I also felt like a knew Jim. He is a runner who participated in races benefiting the Leukemia and Lymphoma Society and other organizations seeking a cure for blood cancers, and he drew attention to the need for more people to become bone marrow donors.

He chronicled in words and pictures Dori's four-year battle with leukemia, letting us into their life as parents to two children, writing about the effects on the kids, and as an extra benefit to runners, taking us with him on his runs on the good days and the bad days and speaking candidly about how they helped him, or didn't, depending on the day. He gave a full picture of a family going through the leukemia journey.

Dori's smile was always with us, most often in photos showing her having fun with her family. Jim's writing was expressive yet never excessive, realistic and informative and showed how this couple navigated the ups and downs with grace.

I loved it when he wrote after she came home from the hospital for the last time that she was the most beautiful cancer patient he had ever seen. She seemed tremendously warm and loving, like someone who really enjoyed and appreciated life. And without ever being maudlin, Jim wrote about how much he loved her. You could also see how much her kids, Will and Kathryn, loved her, and you could see how they have the strength to be OK.

I really thought Dori was going to make it. When I saw Jim's latest headline, "Rest in Peace," I was floored. And there was Dori's smiling face. I'll miss her, and him too. It would be understandable if he signed off from the blog, but I hope he continues writing for a while so that his big support group can keep in touch.

Percocet chronicles, tongue update

2011-06-07T14:04:00.000-07:00

As I sit here at the kitchen table, I just fell asleep with a bite of coffee cake in my mouth and my fork in my hand. It's because I took 10 mg. of percocet this morning; without it, my tongue hurts so much that I can't eat or even hardly think. It makes me loopy, so I hope this makes sense.

I had to choose between lying down and forging ahead with my plan to write. I made more coffee and decided to write.

I didn't want to take percocet near bed-time last night because the other night I had hallucinations that large objects were coming at me from all directions. I even thought that large objects were filling my room and crowding me on the bed.

I tried two Tylenol alone at bed the other night, but that didn't take the edge off the pain, and I couldn't sleep that way either. Last night I took 10 mg. of percocet a couple of hours before bed and followed with half an Ativan, hoping it would undercut the weirdness of the percocet. It worked. Oh, and I also took a Benadryl to try to stop the itching from my rash. More on the rash in a minute. (Bet you can't wait!) Anyway, I got pretty zonked out.

On Monday, Joe drove me to Dana-Farber so I could see Dr. Goguen, who did my tongue surgery, and so I could get bloodwork and check in with Melissa.

Dr. Goguen said my tongue looks the way it should and said the biopsy report was good. She had removed more than she had expected because of a large area with severe dysplasia. She got clean margins but left a little spot of mild dysplasia in order to avoid digging deeper. Apparently mild dysplasia is unlikely to do any harm.

The pain could persist for a couple of weeks. I guess the tongue is a particularly sensitive area.

I had gotten bloodwork before that appointment, so when I went down to see Melissa, she had my counts. They were fine for me: platelets, 74; white blood count, 9.6; hemoglobin, 10.2, and hematocrit, 29.8. I did wonder why my hematocrit (and hemoglobin) had dropped; the last few times it was in the low 30s and close to normal, which is 34.8-43.6. (For hemoglobin normal is 11.9-15.0.)

She said it really wasn't a significant drop, but she would double-check with Dr. Alyea if I wanted. My liver is stable, but she said it wasn't a good time to lower the prednisone. She promised to check with Dr. Alyea on that also.

So, back to the rash. My torso and face have an interesting collection of spots and blotches; discreet red spots on my face, the splotches of red on my arms from the prednisone, now joined by smaller dots; a genuine rash on my stomach and something around my ankles. Definitely not beauty-pageant material, although possibly interesting to a pointillist exploring use of different kinds of dots.

When I first noticed the new tiny spots a couple of days ago, I panicked and thought they were petechiae, a possible sign of low platelets. I thought I needed a transfusion. Petechiae are a trigger for me, a sign of all things going downhill. My mind did its crazy doom and gloom thing.

I called Dr. Alyea and he said it wouldn't hurt to get a blood test and meet with Melissa. (We talked on Sunday, the day before my appointment with Dr. Goguen.) I asked if we should plan in a possible transfusion, and he said he doubted that would be needed.

Then we talked about the Federer-Djokovic match at the French Open, which took my mind off everything as I watched it on the couch Friday. Federer won the semi-final 7-6, 6-3, 3-6, 7-6, but lost in the finals Sunday to Rafael Nadal, 7-5, 7-6, 5-7, 6-1. I watched that one too.

The more I studied my dots, the more I realized that they were all part of a rash. I was delighted when I discovered that they itched (not a quality of petechiae). Now the itching is getting old.

Dr. Goguen took me off the antibiotic, clindamycin, although it does not usually cause rashes. It might be the percocet, but I'd rather itch than ache. It will probably end up being one of those "rashes with unknown origin." As for my face, which has a different kind of larger red dot that does not itch, I will probably schlepp back into Boston to see my dermatologist, Dr. Linn.

Well, I have to go now and take more percocet. Maybe a Benadryl is in order too.

Another saga

2011-06-03T18:10:00.000-07:00

This is the first time in days that I've felt like writing, and even though I feel better, it still hurts to talk.

My tongue surgery Tuesday went well, and I felt a little out of it, but mostly OK on Wednesday. Yesterday, I woke up vomiting and with a terrible headache and pain in my very swollen tongue. My throat also hurt; the doctor had inserted a scope to look around (she told Diane that everything looked fine.)

I figured out that the vomiting came from the anesthesia and the Percoset (Oxycodone plus Tyelenol, well actually Roxicet, the liquid form). I went to the high end of the dosing – never above – but it was probably too much to take on an empty stomach. I couldn't keep even a sip of water down, so I checked with Melissa and she said that I was probably dehydrated and should go to the ER. Joe got ready to take me.

Joe said that since he frequently takes me to the hospital right after he gets home, I'm probably allergic to him and should in the future take an allergy pill. At least he got me to laugh when we were leaving the house.

We waited in the ER at Baystate Medical Center for about two hours when I finally got taken in and began getting the first two bags of IV fluids. Joe then had to leave, and Katie took over. I got Morphine for the pain intravenously plus Zofran for nausea. They said to make sure I kept drinking when I got home, which ended up being around 9:30 p.m.

Then I started to itch. I remembered that as a reaction to Morphine, so I took an allergy pill. By 11 p.m., I was happily watching The Daily Show.

But when I woke up this morning, I felt like I had been hit by the proverbial Mac Truck. My heart was racing, and I was in a lot of pain. I used my handy blood pressure cuff to take my bp: It was 144/94 – high. I took 50 mg. of Atenelol, my usual dose of bp medicine, and drifted back to sleep. When I checked again, I felt lightheaded, and here is why: It was low, at 89/62.

I asked Joe to put on water for coffee, got a drink, and called Melissa. She said it made sense to have taken my usual amount of Atenelol, but because I hadn't taken any for two days, my body was probably hyper-sensitive to it, and that tomorrow I should take half.

She also said to take the anti-nausea medication an hour before the Percoset and to drink plenty of water and try to eat a little something. That worked well.

There were, as there are for many things, several bright spots.

The first, as all of who have dealt with cancer always notice, is the fact that it had nothing to do with leukemia. Well, the tongue dysplasia was a byproduct of having my immune system manipulated so often, but once I got over the initial concern, I realized that it's nothing major.

Second, the kids were great.

Third, the Boston stay began in a festive mood with a lovely cookout at Margaret's for her birthday, out on the deck overlooking their big lawn and gardens surrounded by woods. The peach pie was out of this world.

And last was a small act of medical kindness on the part of the young anesthesiologist who prepped me for the surgery. Instead of sticking an IV in directly as most do, he gave me a tiny injection of numbing medicine before putting in the IV. Wow. Did that make a difference. I thanked him and told him that I don't usually get IVs that way. And he said something that makes sense. "The IV is really the only part of surgery that you remember, so it might as well be a good memory."

And it was true. As they wheeled me out, they inserted a dose of "happy medicine," and I don't remember anything after that.

Obviously it is not time-effective (or, I'm sure, cost-effective) to give that little bit of extra anesthesia all the time before putting in an IV. Most slip in without too much trouble, but with quite a few, they have to nudge it around before hitting the right spot, or, even worse, they miss the vein and have to stick you again.

So, I have survived. Today I never left the house. I made stewed fruit that reminded me of the days after transplant when I couldn't eat fresh fruit. My mother used to make it for me. Katie says she likes it too: another bright spot.

Didn't he just graduate from kindergarten?

2011-05-30T14:17:00.000-07:00

Katie, Joe and Ben after Bates graduation.

Katie, Diane, Joe, Ronni and Ben.

We had a great weekend in Maine for Joe's graduation from Bates.

It's hard to believe. Seems like only yesterday that he was a little boy in a white cap and gown, graduating from kindergarten. I'm going to dig out that photo and post it along with one from yesterday.

He had a wonderful college experience, making many friends, playing hockey and doing well academically in the face of adversity. It was during his sophomore year that I almost died. He repeatedly drove more than two hours to Boston that snowy, cold winter; one time he had just returned to school and had to turn around and drive back to the hospital upon getting a call that I might not make it through the night.

He persevered with grace and a sense of humor, putting in a lot of hard work. I'm very proud of him, and of the other two also. I loved being there all together. Diane came too, and I was happy to have her there.

The graduation ceremony itself was short and sweet.

President Elaine Hansen began with a Garry Trudeau quote: "Commencement speeches were invented largely in the belief that outgoing college students should never be released into the world without being properly sedated."

By way of bucking that trend, instead of one speaker, the three recipients of honorary degrees spoke briefly. Most audience members didn't know them, but the format worked out well. They were:

Frank Glazer, Bates artist-in-residence and lecturer and an internationally known pianist; Evelynn Hammonds, Dean of Harvard and a scholar on the intersection of race and medicine; and Robert S. Langer, an MIT researcher who did ground-breaking work on cancer treatment.

I'm writing this from Diane's house in Newton. We have to be at the hospital at 6 a.m. tomorrow for the surgery on my tongue. It's scheduled for 7:30, and I'll probably be ready to leave around 2 p.m. More on that later.

Calm

2011-05-27T07:19:00.000-07:00

It was such a beautiful day yesterday, the breeze seemed to caress your face. After all those soggy days, it was especially welcome.

Katie weeded and planted, and I followed after her watering. She sang as she worked. We did it later in the day at the magic hour, keeping at it until it was almost dark. We stopped to admire the colors in the twilight sky. These long days are so nice, especially when it's not raining.

I wrote before that I felt out of sorts due to my inability to exercise or go to yoga, or even do much yoga on my own because I can't put too much weight on my fractured foot. Yesterday I remembered a meditation CD that I got in the hospital which includes brief calming exercises. I'm just not good at meditating; I either get antsy or I fall asleep.

But these were short exercises that anyone could do. So I tried Dr. Andrew Weil's relaxation technique, a variation of one type of yoga breathing. He said he recommends it to all of his patients.

You let all of the air out of your mouth, then breathe in through your nose quietly to the count of four. Hold for seven breaths and exhale to the count of eight with a whooshing sound. Repeat this for four cycles, twice a day, increasing to up to eight cycles as you get more comfortable. He said you can also do this when you are especially stressed or if you're having trouble going to sleep.

I tried this yesterday, and the calm did indeed permeate the day. Also I tried to remember throughout the day to stop and breathe deeply when my mind got all chattery.

One of my stresses is the eruption of a bunch of purple marks on my forearms due to thinning of the skin from prednisone. They are puddles of blood close to the skin; one oven broke open and bled. Last night I noticed a particularly angry-looking one larger than a quarter.

My first thought turned to suddenly lowering platelets, but I know the sign of those are petechiae, a cluster of small dots. I double-checked with Melissa today and she said not to worry and that it's common. I may have even bumped against something without knowing it.

Still, it feels like backtracking, even though it doesn't mean anything.

We're heading to Maine this weekend for Joe's graduation, and the spots pose a wardrobe dilemma. It's going to be warm, and I wanted to wear a sleeveless top. But I don't want to show my arms; I worry it looks like I have leprosy. It's a variation on the theme of a teenager getting a pimple on the tip of his/her nose before a big date.

The solution is easy, of course. I closet-shopped for a nice light sweater and a jacket.

Small potatoes.

The focus is on Joe's graduation and on being there as a family to celebrate a great accomplishment.

This and that

2011-05-24T17:08:00.000-07:00

Top, a display at Andrews Greenhouse, above, the view,

and below, how I wish my garden would look.

The major events so far this week have been giving the dog a bubble bath, buying flowers for the garden and obsessing over why the New York Times cut a paragraph out of the letter that I had in the Science Times section today. The link goes to two letters; mine is the second. I'm actually happy the letter got in, and my problem with the omission falls into the "Will you please get a life" category. I will explain more below, but first:

Maddie has been scratching a lot, and the vet said she is probably allergic and would benefit from an oatmeal (shampoo) bath. Normally I take her to the groomer, but they were booked, so Katie and I did it ourselves.

It's been a long time since I ran a bubble bath for anyone. It made me a little nostalgic, and I even thought about bringing out some of the bath toys I saved. Yes, I actually did save the colored letters that stick on the side of the tub and some other floaty things. They're right in a cabinet in the bathroom in case anyone needs them.

Maddie seems to have sensed what we were up to, because each time we called her up, she ran to the top of the stairs and then ran down. I tried to pull her up by her collar, but she backed out, a tricky move that brings to mind the way toddlers make their bodies limp so you can't buckle them into the car seat. (So much of this dog-raising is like bringing up a kid.)

Finally I put the leash on and lured her up with pieces of a dog biscuit. Katie and I each took an end, hauled her in, and the fun began. She was actually very good and stood there quietly, except for the few times she shook and got us soaked and the time she was done and we had to push her back in. I wanted to take a picture of the wet rat look, but I gave up because she wouldn't stand still enough.

Now she is smooth and shiny and seems to feel better.

Today we went to Andrews Greenhouse in Amherst to buy flowers for the garden. I like it as much for the setting and the view as for my purchases, which usually don't look so great by the end of the summer. I'm still not allowed to garden, so Katie will do the planting. It's because my immune system will be compromised as long as I'm on prednisone, making me susceptible to breathing in fungus from the dirt. I'm not a big gardener, but I would just love to pull some weeds.

I'm a little out of sorts because my fractured foot has kept me from exercising. The air cast enables me to walk without pain, but you're not supposed to use that as an excuse for overdoing it. I did walk a short way today to meet a friend for coffee; it felt like a big adventure. Maddie came too and sat outside. I hope that when I get back to exercising, I won't have lost too much ground.

The letter I referred to above addresses a column from last week's Times about why runners keep going despite pain. I had written that after my bone marrow transplant and lengthy hospitalization, I had wanted to prove I could run again. The editors deleted the part about the bone marrow transplant and simply left in that I wanted to prove I could do it again.

It's fine without the impetus in there, and to a reader it makes perfect sense. OK, it was only a silly little letter, I'm done with it, and I'm going to go watch the first episode of "The Good Wife." I missed the whole first season and got a free month-long trial from Netflix to see how much I can watch before I cave in and pay up.

The end of "The Good Wife" for the season has left a really big gap in my life. Talk about getting a life...

Year in review

2011-05-21T07:42:00.001-07:00

The contents of Katie's dorm room have spilled out and tumbled throughout the house.

She is cleaning up bit by bit, but yesterday she said she might as well stop because when the end of the world starts with an earthquake at 6 p.m. tonight, everything will spill right back out.

Ha ha. For those of you who have managed not to hear, thousands of people around the country believe in the predictions of Harold Camping, host of the Family Radio network, who has said that believers will be transported up to heaven today as a worldwide earthquake strikes, followed by five months of torment for everyone else, culminating in the end of the world.

Well, just in case this doesn't happen, she really needs to clean up. Joe graduates from college next week and will add his stuff to the mix while he stays home for a while, regrouping and figuring out his next step.

In any case, my first empty-nest-year has passed, and I survived. I was worried that it would be terrible, but everyone said that I would get used to it quickly and that, before I knew it, it would be over. I cried on and off for a couple of weeks, and then, voila, I was fine. I'm also very happy to have Katie, and soon Joe, home, as long as I don't injure myself tripping over their stuff.

It's interesting how, when you have or have had kids in school, your "year" follows the school calendar. Maybe other people do this also, I don't know.

I had set some goals for my year that I am happy to say I accomplished.

First of all was getting stronger and healthier.

Next was getting my resume and my LinkedIn page in order and writing some stories to update my clips, which stop abruptly in 2007 upon my first relapse. I also wanted to make sure I still "had it" in terms of my interviewing skills, writing and reporting.

My story on a day in the life of a pediatric oncology nurse appeared in the spring/summer issue of the Dana-Farber Cancer Institute's Paths of Progress magazine. I also wrote two stories for Beth Israel Deaconness Medical Center's website, including how to eat right for bones and joints and the controversy over whether taking calcium supplements is good for you or not.

I'm working on some other projects and even plan to continue doing so today despite predictions of the end of the world.

Confessions of a crazy runner, cont.

2011-05-18T08:11:00.000-07:00

On Friday, I received the results of the bone scan I had gotten the day before: I have a stress fracture on my foot.

So on Monday I got an air cast that I am supposed to keep on all the time except for when I'm driving or showering. It should take four to six weeks to heal. Katie says it looks like a duck.

I don't want to bore you with repeating the cause of the fracture, which I described in the post "Finishing with a Flourish." If you're just dropping in, I'll summarize: I ran six miles despite pain in my foot. Why? It never occurred to me to stop. Now I am paying for it.

I know others have done similarly stupid things. And yesterday, Gina Kolata's column in the New York Times, "One Runner's Suffering is Another's Inspiration," , reminded me that running through pain is a common thing to do.

Kolata says she runs for the euphoria and will keep going to achieve it. Other reasons: "In races, for example, many of us keep going because we want to see how well we can do. Some do it because they are stubborn."

I guess all of those apply to me.

She mentions Japanese writer Haruki Murakami, who wrote in his book "What I Talk About When I Talk About Running" that he wants his epitaph to read, "At least he never walked."

Well, I personally wouldn't go that far.

Kolata explores new scientific research addressing the question of pain in exercise, not coming up with definitive answers but raising interesting points.

So, no tennis, no dog-walking, no running, and not even any swimming. Just a lot of sitting around, eating, drinking coffee, getting out of shape and kvetching.

Close encounters of varying kinds

2011-05-16T08:04:00.000-07:00

The graduate, Lily, center, with Diane, to her right, and

aunts, Suzanne, left, and at right, Mel and me.

I had a wonderful though rainy weekend in St. Paul, Minneapolis, for my niece Lily's graduation from Macalester College.

Lily is Diane and David's daughter and the same age as Joe, who graduates in two weeks from Bates. So there is a whole lot of celebrating going on this month, alongside musings about where all the time went.

It is so nice when family gathers for happy occassions. I sat near Lily and her friend at dinner one night and got a chance to talk to them about their interesting plans as geography majors. We saw some of the sights in the Twin Cities and ate a lot of good food (it seemed like we were always planning our next meal!) Found some good coffee places, too.

I also met some very nice people whom I'll never see again...strangers coming together for brief connections.

The first "encounter" was on my flight from Hartford. I used to like flying, then I got afraid of flying, and now I think I'm OK again, not that I do it very much.

During my scared days, just a little bit of Ativan helped. I had brought some with me this past weekend just in case, but I didn't take it in the airport. As I sat on the plane waiting for takeoff, I thought maybe I should reconsider. (It doesn't work right away, but including a layover in Philadelphia, it was a five-hour trip.)

I called a friend who has a similar problem.

"Take it," she said.

A woman sitting across the aisle had heard my question, and she leaned over towards me and said, "Don't take it. Just breathe. You can do it."

The man in front of me turned around and gave me a thumbs up in agreement with the woman across the aisle.

The woman next to me, who told me later that she is a medical librarian at Yale, said maybe I should take it but that if I didn't and I got nervous, she would hold my hand.

I joked that maybe I should ask the whole plane.

I didn't take it. My new friends asked me a couple of times if I was OK. The librarian and I chatted a lot It was a smooth flight, and indeed I was OK.

I had another brief friendship Saturday morning at the hotel, where a free breakfast is included. The coffee, no surprise, was pretty bad. I drank a cup and then was sorry I had.

I asked a woman at the front desk if a Starbucks was nearby, and learned that there is one, but not in walking distance. The woman said I could wait for the van driver to return from an airport run and then he would take me there.

The driver was a man who looked to be in his late 20s or early 30s. He told me that he is from Ethiopa but doesn't mind the winters in Minnesota. He just bundles up and then looks forward to spring and summer, which are beautiful.

He works part-time at the hotel; his main job is as a collector for the phone company. "I'm the bad guy," he laughed. He is also pursuing a college degree in fine arts from the University of Minnesota.

When we pulled up in front of Starbucks, he said, "Tell them Amby says hello."

I did, and the two young women behind the counter smiled and said to say hi back. I was all set to go with my capuccino, but they said to wait a minute, they had one more drink.

It was Amby's usual, a skim vanilla latte (or something like that).

He broke into a big smile when I gave it to him.

"I am blessed, blessed, blessed," he said.

I feel blessed by the major events this weekend and by the anticipated ones in the coming weeks and by the small ones too.

The girl who cried wolf

2011-05-13T13:19:00.000-07:00

Downtown Amherst, Mass.

The dogwood trees and flowering bushes are in full bloom here in Western Massachusetts.

It's a beautiful time of year. My mother always liked to visit around now, and the scenery inspired her to tell and retell a story about me.

I was a crybaby at Vassar during my first two years when I wasn't very happy. It's interesting that I have turned out to be relatively stoic about my illness (in contrast to my foot problems, about which I complain noisily.)

One time as my father drove me back to school along the Taconic Parkway, about a two-hour trip, I said that I was sick sick sick, and he needed to take me back home to NYC.

(Yes, he turned around, and my parents pampered me for one night.)

In the spring of my sophomore year I developed a problem that really was something to cry about. I got a terrible case of strep throat, with a high fever and piercing pain.

I ended up in the infirmary, and I called my parents from bed, crying on the phone that they had to come because I was suffering and miserable. They came the same day, only to find me in an infirmary surrounded by beautiful trees and bushes and cared for by a sweet nurse who spoon-fed me ice cubes and placed cool compresses on my forehead.

My mother laughed and said I had made it seem like some sort of dungeon. But my parents gave me what I wanted, a special kind of TLC that only they could give.

Yesterday when I walked Maddie past the Mount Holyoke infirmary, surrounded by similarly beautiful landscaping, the story replayed in my mind.

I wish my parents were here to laugh with me about it.

Relay for Life successful event

2011-05-11T18:06:00.000-07:00

First, a medical update: The scan of my neck came back negative, meaning that the abnormal cells on my tongue are self-contained.

Now I just have to deal with removal of a small area on the surface of my tongue, or as someone near and dear to me calls it, my tongue removal, under general anesthesia on May 31. Speak now, or forever...

I also wanted to report that Joe organized a successful Relay for Life event that took place Friday at Bates College.

About 15 teams raised close to $17,000 to benefit the American Cancer Society. Joe captained the Bates Men's Hockey Team; donations are still being accepted through his personal fund-raising page.

Here's how the American Cancer Society describes its signature fund-raising event:

The American Cancer Society Relay For Life is a life-changing event that gives everyone in communities across the globe a chance to celebrate the lives of people who have battled cancer, remember loved ones lost, and fight back against the disease. At Relay, teams of people camp out at a local high school, park, or fairground and take turns walking or running around a track or path. Each team is asked to have a representative on the track at all times during the event. Because cancer never sleeps, Relays are overnight events up to 24 hours in length.

After dark, we honor people who have been touched by cancer and remember loved ones lost to the disease during the Luminaria Ceremony. Candles are lit inside bags filled with sand, each one bearing the name of a person touched by cancer, and participants often walk a lap in silence. As people take time to remember, those who have walked alongside others battling cancer can grieve and find healing.

Meeting my donor

2011-05-09T15:09:00.000-07:00

Me and my donor, Denise Ledvina

How do you thank someone for saving your life?

I posed that question when I met Denise, my donor, while I was in Philadelphia.

"Thank you" seems insufficient. But that's what I said, repeatedly, and Denise thanked me too.

"How many times do you get to say that you saved someone's life?" she asked.

We met for coffee when I was in her neck of the woods for our big 10-mile race (my six-miler). My high school friend Tami came with me, because, as I wrote earlier, Denise happens to be in Tami's book group, and they live near each other in South Jersey, close to Philadelphia.

Denise and I have e-mailed since we first learned each others' identity a year after my transplant on Jan. 31, 2009. Some people travel far to meet their donors, but when you consider the world-wide reach of the National Marrow Donor Program (NMDP), we are practically in each others' back yard.

We're about five hours apart, but only about an hour and a half from New York, which I consider my second home. I had stopped in New York on my way to Philly, so Denise was just a short bus ride away.

She actually registered through The Gift of Life, an associate registry of the NMDP, in a donor drive for the late Michael Brecker, an internationally-known Philadelphia jazz musician who died of leukemia in 2007 after failing to find a donor. Once you register, your name and information stay on the list, which is how she ended up with me.

I learned of our connection when I first told my friends that I had learned my donor's name. That's when Tami exclaimed, "I know her!" (We are trained to almost always use the word "said," but in this case, she really did "exclaim.")

We have so many things in common that I felt like I already knew her. And of course now that her strong healthy cells have populated my bone marrow, in a way I am her. We hugged and smiled and teared up and then, along with Tami, just chatted away.

We're about the same age and share a similar background. We both also have a history of the crazy-making plantar fasciitis. Mine had been quiet for years until recently, and I joked with her that maybe she gave it back to me with her cells. Bad joke. Sorry.

I can see that she is a strong woman. And I am so grateful that I carry her strong cells within me.

Just so I don't get bored

2011-05-07T14:01:00.000-07:00

I spent a good part of the day yesterday – about five hours – hobbling back and forth between Dana-Farber and Brigham and Women's Hospital for pre-op testing in advance of my tongue surgery, now scheduled for May 31.

I parked at Dana-Farber and walked across the street to the Brigham, getting there exactly on time for my 12:30 p.m. appointment. Then I waited for about an hour. I needed to move along, having also been scheduled back at Dana-Farber for a 3:45 CAT scan of my neck. When I finally inquired about the wait, a woman said that according to her schedule, I was supposed to be there at 7:15 a.m., so they had pushed me back after all the other people who had arrived in the 12:30 vicinity. All I know is the I had been told to arrive at 12:30.

Anyway, somewhere around 2 I finally got in to see a nurse who took my entire health history, all the way back to age 7 when Douglas Lublin, my friend Mary's older brother, gave me an "Indian burn" over the summer at Atlantic Beach.

(Do we still call it that? I don't know. Did the nurse really go so far back? No, but it sure felt like it.)

Then she had to transfer my lengthy list of medications from the computer onto another form. She couldn't pronounce them all, so I had to go over to the computer to help her and explain to her what all these meds were for. Sorry to whine, it just seemed like it took a loooong time. I got an EKG, then she took my pulse and pronounced my heart exceedingly strong. That was good to hear.

I finished with about two minutes to get to Dana-Farber's radiology department, where of course I waited.

The scan is to see if the abnormal cells on my tongue have spread to my neck. It makes me uneasy to use the "C" word here, so I won't. I am sure that this scan is procedural and no reason to climb on the anxiety train, but still, when Monday comes around and I am waiting for a call about the results, I might be a little jumpy.

The CAT scan room is actually very calming, with its ceiling of white clouds on blue sky. I've been under that machine countless times, including back during my hospital stay when I could barely move and they had to slide me from a stretcher onto the CAT scan bed. It was nice to just climb on board.

At least I didn't drive to Boston just for a day of testing. I actually went Thursday night to Brandeis (in nearby Waltham) to see Katie's a cappella group, Proscenium, perform its year-end show. (Then I spent the night at Margaret's.)

This extremely talented group of singers performed numbers from Broadway shows, ranging from funny to poignant. They did such a wonderful job, and what's more, you could see how much fun they were all having and how close they are as group.

And my daughter, what can I say, she looked so beautiful and happy that I had tears in my eyes and a smile on my face for quite some time. Well, to be exact, until those hours in pre-op testing.

Still, I am kvelling.

I love this word. I've used it before, and I'm sure I'll use it again when it comes to all three kids.

Finishing with a flourish

2011-05-03T18:38:00.000-07:00

Tami, Emily and me before the race.

Did I ever say I like to keep things interesting?

Well, my performance in Sunday's 10-mile Broad Street Run in Philadelphia attests to that tendency.

I ran it with my high school friends Emily and Tami and Emily's husband, Mike, along with more than 30,000 other runners in the largest race of its kind in the country.

I had run three miles several times at home and figured I could do that plus another two in a combination of walking and running. My feet felt OK at tennis Wednesday night, although when I started the race, the outside of my right foot felt iffy. The heel pain from the plantar fasciitis is much improved; this new problem seems to result from an over-correction to my gait, which I will need to investigate.

I began running slowly and made it easily through the first two miles. It's mostly downhill with some small uphills, so I never got winded. My foot, though, hurt right away, and by the second mile was increasingly painful. I could still manage, so I ran to mile 3, then walked much of mile 4 with a little running.

Many runners passed me, and I lamented to myself, "I used to be fast."

(Well, I was never really fast, but I was respectable enough.)

My sensible voice pointed out, "Yeah, but you also used to be almost dead."

I reminded myself that doing it at all was an achievement.

The beginning of the race goes through a bad area, and although race organizers sent me an e-mail saying that shuttles would take stragglers to the finish, I saw hardly any such vehicles, and I didn't think that stopping around that point was an option. Only a handful of spectators lined the route.

From mile 4 to 5, inspired by bands now playing along the way, I actually felt that I was running in an almost normal stride. I began having fun. I got used to the pain in my foot.

I told myself that I should stop if I wanted to play tennis this week, but since at that moment it was about the race, I kept going.

Philadelphia's impressive City Hall, with its statue of William Penn on top, grew closer, and with it the downtown part of the race and the promise of more activity.

So I went from 5 to 6. I started to think I might even make it to the finish, even if I walked...and even though I had told myself, and told Ken Holt (the orthotics guy) that I would stop at 5.

Tami had given me some jelly beans that were supposed to have added ingredients such as electrolytes, and I reached into my pocket for one. In that instant, I took my eye off the road and tripped on an uneven patch of pavement. I landed on my left side, hitting my face, my arm and my knee.

Some runners picked me up, asked if I was OK, and sat me down on the curb. An ambulance materialized. A paramedic gave me ice, bandaged my knee, and called for a ride to the finish.

She couldn't locate a van, so I had to take a police car. I got deposited at the finish, where I found my friends, who had all finished. As soon as I stopped running, my foot began to kill me. I now have a black and blue mark on my cheek and chin and a growing swath along the inside of my wrist.

It took a good part of yesterday to change my thinking from: "I ran six miles but I fell," to, "I ran six miles and I fell." Forget about the "but." So what if I'm a little crazy and a little klutzy?

Plus, the weekend wasn't just about the race. It was most of all about being with good friends.

My friend Margaret put it in perspective: "Compared to what you've been through, that's kind of like stubbing your toe."

Yesterday, I hobbled through my Dana-Farber appointments. First I saw Dr. Laura Goguen, a very nice head and neck specialist. She said she will need to remove the spot on my tongue under general anesthesia in the operating room, probably within the next two weeks. (Sigh.)

Next I saw Dr. Alyea, who said my counts were stable. My platelets went up a tiny bit, to 77, which is still way below normal, but with everything else OK, he is not concerned. My liver enzymes are down a little, so he said I could decrease my prednisone slightly, alternating 7.5 mg. with 10 mg. every other day instead of staying on 10 mg. daily.

He congratulated me about my run, saying with a smile, "show-off!" He didn't make a big deal about the fall.

When we had finished, he said my first doctor, Daniel DeAngelo, would want to say hi to me. As he turned to get Dan, he said, "Don't forget to tell him about the jelly bean!"

Whatever you say about my falling, it is kind of me.

In Sunday's mishap I scraped the same spot on my left shoulder where I have a scar from a jogging incident maybe 15 years ago. It was during the summer at Atlantic Beach. My kids were young, and my mother had taken them to the beach while I went for a run. I tripped and fell on a crack in the pavement, in front of a house where friends of my parents' lived. I knocked on the door and they gave me a bandage for my bleeding shoulder.

Instead of accepting their offer for a ride, I jogged back to finish my run and find my mother and the kids, all the while holding a paper towel to my shoulder to stem the bleeding.

And I'm the one who, in a break from chemotherapy during my first round of treatment, tripped and fell while lunging for a tennis ball during a doubles game, and, trying hard not to fall on the Hickman catheter implanted in my chest, fell even harder. A trip to the emergency room followed, and I checked back into the hospital the next day with my arm in a sling, having separated my right shoulder.

When Dan came to see me in my hospital room after my admission, he said, "What did you do now?" During that hospital stay, I took more pain meds for my shoulder than I did for any side effects of the chemo.

As I wrote in the "About Me" description of my blog, it's about falling down and getting up, falling down and getting up again. I meant it metaphorically, but I guess you could take it literally, too.

Ten-miler, here I come

2011-04-29T07:49:00.001-07:00

I am back in New York, en route to Philadelphia, where I am meeting my high school friends for our big 10-mile run on Sunday.

My energy is good, but my feet are still bothering me, and three miles is the most I have run. But I have figured out a way to finish. A student at MIT has created a device for me based on the concept in the children's story Chitty Chitty Bang Bang, about a car that can fly over anything in its way.

I will tie a computer chip to each sneaker and hold a small on-off button in my hand. When I have had enough running, I will press "on," which will cause my sneakers to send out wings that will carry me along, close enough to the ground that it won't be obvious. When I want to run again, I will press "off," and so on and so forth. I will make sure to be running at the end so that I look good and tired.

What's that you're thinking?

OK then, I'll start over.

In addition to the problems with my feet, there is the small matter of having been in the hospital for more than three months just a little over two years ago, and all that entailed: the coma, the time in bed, the difficulty of even standing up and walking even a few steps. I don't think that the statute of limitations has expired yet on using that "excuse."

I'm going to run some and walk some but not overdo it. I don't want to stumble away exhausted and having more trouble with my feet than I already do. I'm just going to be with my friends and get the feeling of being in a race again.

Race organizers said a van picks up stragglers along the way and takes them to the finish line. (I will resist the temptation to say to the other passengers, "Don't look at me, I was in a coma!) I'm also going to tuck $20 in my sneaker in case I want to take a cab. For good luck, I'm wearing my yellow T-shirt from the 2006 Saint Patrick's Road Race, the last one I ran.

I am spending the weekend in the area at my friend Tami's house with our friend Emily and her husband, Mike, who are also running. It's Emily's birthday weekend, so I'm sure a little toasting will be in order.

I don't want to make this an afterthought, so I'm going to devote a separate post to it, but I am also meeting my donor, Denise, who lives in the area and by strange coincidence (six degrees of separation) is in Tami's book group. Naturally, I'm very excited!

Quarters from heaven

2011-04-25T09:12:00.000-07:00

Having been to a seder on the second night of Passover, I hosted my own yesterday.

Technically, it was still Passover, and although it's traditional to do it on the first or second night, we figured it's OK to do it later if that's the only time people can come. It also happened to be Easter, making grocery shopping a potential problem.

I set out to do most of my shopping during the week, but I needed more things on Saturday. The store was packed. I ended up on a long line and started to feel very stressed, anticipating all the work that needed to be done. Hostessing does not come easily to me. I had just come from a yoga class, but the calm did not carry over.

Then I looked down and saw a quarter directly in front of my cart.

I have this feeling that my parents send me quarters to remind me that they're here...the inflationary equivalent of pennies from heaven. It's because they always stocked up on quarters to feed parking meters and ride the bus, and when I was in New York they helped me out when I ran short. So now they are helping me out with this sign.

I felt like it was my mother saying, "Calm down, you can do this."

I bought a 20-pound turkey to serve 12 people (with leftovers), so that I wouldn't have to roast two large chickens. I opened the packaging Saturday night around 9:15 to prepare the turkey, and I thought it didn't smell right. Katie came in and said it smelled like eggs. Yuk.

I called Big Y, the local supermarket, and a manager who answered said they were closed. I explained the situation and said I didn't want to sicken a bunch of people with this turkey; he said he only had five 13-pound turkeys left, but if I could be there in 15 minutes he'd make a switch. So I rushed to the store with the rotten turkey and was met in the empty store by my contact, who gave me two 13-pound turkeys, called the deal even, and rushed me out the door.

Here I was once again facing turkey trouble, a different kind but reminiscent of the near-fiasco on Thanksgiving when I decided to clean the oven and the door got stuck shut until at the last minute Jim (my ex-husband) pried it open, only after Joe had ripped off the handle.

Two of my new turkeys would be too much, but one might not be enough. I only had one roasting pan, so I put Turkey #1 in it and crammed Turkey #2 into a disposable lasagna pan.

On Sunday, all three kids were here, and through a team effort, we got ready. The turkeys were cooking nicely, although Turkey #2 ran into trouble when the pan sprang a leak and I fumbled it while trying to get it out of the oven to put foil underneath. I kept it in the pan, but the dog was very happy to discover that most of the drippings had escaped onto the floor.

Anyway, peace descended when we all sat down at the table and the seder began. I lit the candles, and Diane and David, in keeping with tradition, led us through the reading of the Haggadah.

We had our usual guests, my friend Deb and her daughter, Charlotte, who are like family, and special guests Bob (my cousin) and his wife, Lynne. Bob is famous for his rendition of "Go Down, Moses."

We alternate readings, and ever since my illness Diane has given me the one about how Passover is not only about celebrating the exodus of the Jews from Egypt but also about identifying the mitzrayim – the tight spots – in our own lives and in the lives of others and seeking liberation from them.

Having gotten out of some major tight spots, yesterday I got out of a minor one.

Everyone pronounced the turkey my best one ever. The second one was relegated to leftovers.

Subways, buses and cabs

2011-04-23T16:08:00.000-07:00

While visiting my Aunt Marge in New York, Katie and I went up to the top floor – the 38th – of her apartment building overlooking the United Nations and the East River.

We went out to the walkway around the roof and took in the spectacular view of the city beneath us. This was on our busy day, Wednesday, between shows. We had seen that matinee of "Anything Goes" and had gone to her apartment for dinner before our next show, "How to Succeed in Business Without Really Trying."

When we finally tore ourselves away from the rooftop view, I tripped and fell.

No, not off the roof. I missed a step coming off the roof into the stairwell. I guess my head was still in the clouds. I did a sort of somersault, almost hitting my head on the wall but protecting it with my arm. Maybe for me clutziness is another side effect of transplant. I can't blame it on my balance anymore. Especially in light of my low platelets, I have to look around more carefully. I have probably gotten overconfident that in some ways I am "normal" now, so I barrel ahead without looking. But really, although I've come a long way, I have a way to go.

Anyway, I picked myself up, got back to the apartment with Katie and grabbed an ice bag. My main concern was that I had messed myself up enough so that I wouldn't be able to run a part of next weekend's race in Philadelphia, but I was OK.

I had gotten a couple of three mile runs in, one day going twice around the Central Park reservoir and another doing three miles in a new place for me, the path along the Hudson River on New York's west side. My feet felt fine during those runs, but, annoyingly, acted up after the many more miles I put in just walking around the city and going up and down subway stairs. I've been home for three days now and although I've walked, I haven't run because of the stupid foot pain, but that is another story, so, back to New York.

Having succeeded in finding a good parking spot, I got just as invested in efficient use of public transit. We needed to go all the way cross town to get from my aunt's to the theater, and I had two bus passes left (worth $2.50 each) that would expire if I didn't use them the same day.

We were going to the theater with a mother and son from South Dakota who had never been to a Broadway show. When we started talking about how to get to the theater, I proposed that Katie and I use our bus passes so as not to waste the $5 and that they take a cab or bus and meet us there. They were perfectly agreeable to this.

Then I heard my mother's voice.

"What are you, crazy? You are going to the theater with these people who have never seen a show and you're going to make them go alone so you won't waste $5 after you spent how much on tickets? You really need to come to your senses and take a cab."

Totally right, not only because it would be easier for the South Dakotans but also because by now my feet had had enough, and my back and arm hurt from the fall. We got a cab without much trouble, and I rode with the ice pack pressed against my back.

The show was great. We all left smiling and humming. I threw the bus passes in the trash. So far I have remembered to look before I leap, um, I mean, before I step.

The art of parking in New York

2011-04-19T11:33:00.000-07:00

Greetings from New York. Katie and I are here for a seder, to see friends and relatives, to do a little of this and that, and to see a show. (True confessions: two shows, "Anything Goes" and "How to Succeed in Business Without Really Trying," starring Daniel Radcliffe, aka Harry Potter.)

We are staying in a different neighborhood, 16th between 7th and 8th, at the apartment of our cousin, Serena, who is out of town. First order of business when we arrived Sunday was to park the car...not in a garage, as Diane, a self-acknowledged parking wimp, does.

The need to find a good spot is a gene that I inherited from my father. It's a sport, a challenge, a connection with my father, and, of course, a money-saving way of doing business. I figured that if I parked on the street during our whole four-and-a-half-day stay, I'd save the amount of at least one theater ticket.

My parking karma was on when we arrived and I pulled into a spot on 16th between 7th and 8th, right near the apartment. It wasn't a perfect spot, because it was on the side where street cleaning takes place between 8:30 and 10 a.m. Monday, Wednesday and Friday. You have to sit in your car, move it out when the street cleaner comes through, and then continue sitting there until 10 anyway so you don't get a ticket. Or you have to move it to a whole other spot.

Uptown, street cleaning takes place for just half an hour. But in the spirit of the neighborhood, I got up a little before 8, picked up a New York Times and a muffin, took my book just in case I ran out of reading, and got in the car.

The street theater was entertaining enough that I barely finished the paper. There were only a few cars on my side of the street, which was apparently vacated by people who don't want to sit there so long. Around 9, cars began pulling up on the other side of the narrow street, double parking apparently to camp out until 10 so they could get one of the empty spots.

A police car pulled up in front of me, and the officer got out. I stuck my head out and asked if I was OK. "It says no standing," he said. "That means no standing."

I said someone had told me this is how it is done, and then I asked him if all the double-parked cars were waiting for spots, and he said yes, he figured they were. "They're illegal too," he said. "I guess that's how it's done in this neighborhood."

He turned his attention elsewhere and began stopping trucks and asking the drivers where they were headed. I'm not sure what he was looking for, but he continued in this vein until a truck pulled up in front of him and stopped. He got out of his car, walked up to the truck and spoke to the driver, then walked back and got into his car. At this point the truck driver got out and walked back to the officer, speaking in an agitated manner, as they say.

The officer told him to get back in the truck. The gist of the conversation was that the truck driver, who was smoking a cigarette, had told the officer he stopped because he thought he was having a heart attack.

"You said you're having a heart attack, so I called an ambulance. Now get back in your vehicle," the officer said.

Soon a fire engine pulled up behind me, lights flashing. Four firefighters got out and spoke to the officer, who said, "Guy said he's having a heart attack but he's smoking a cigarette. He's full of shit. Obviously just wanted to avoid the ticket."

The firefighters talked to the truck driver and came back smiling and shaking their heads. Then an ambulance came. (New York City tax dollars were clearly being used to their best advantage here.) The truck driver appeared again, shouting at the officer that he had no sense of how to deal with the public. Exit fire engine and ambulance, sans patient. Exit truck driver, with ticket.

Exit me, with a whole day of free parking.

Later in the afternoon, we had to move the car to drive to the seder at my cousin Betsy's apartment in Queens. Katie had to listen to me rant. "I earned this spot!" I said. I hated to give it up.

But when we returned about 10 at night, lo and behold, we found another spot. And it wasn't just any spot. Because of Passover, alternate side of the street parking was suspended for today, meaning that it didn't matter which side you parked on, because you didn't have to move for street cleaning.

Turns out the spot is good until Friday. We're leaving Thursday morning.

This is such a thrill I cannot even tell you.