Should I stay or should I go?

I have a dilemma about the Jewish New Year.

For every year as long as I can remember, my family went to Rosh Hashanah services in New York at the 92nd Street Y. We had a routine: a big family dinner at my parents’ apartment, the beautiful services the next day followed by a light lunch at the local Greek coffee shop, then a visit to my cousin Betsy’s on Long Island.

Dinner was accompanied by the traditional foods: a round challah for a year with no sharp edges, plus sweet food for a sweet New Year – honeydew melon, honey and honey cake.

When the kids came along, the tradition continued, with people sleeping on the floor in my parents’ two-bedroom apartment. I always loved returning to the “old country” on these occasions.

Now my parents are gone and the family is scattered. Joe is in school in Maine and couldn’t possibly make it. At Day +110, I couldn’t even think about going. Diane is going to services in Concord (Mass.) and then to lunch with her sister-in-law. Katie and I have been invited.

But Katie feels extremely connected to the New York services. Our cousins still go, and Ben, who lives in the area, will be able to join them.

I have arranged it so that Katie will be able to go. She is going to take a train to Penn Station tomorrow, and one of the cousins will pick her up. She will go to services, have the family dinner at a restaurant, and sleep over for two nights. Since there are not too many Jews in our area, school will remain open. She’ll miss two days, but she’ll make up the work, and I think this is more important.

I am not an observant Jew, but I feel deeply connected to the traditions. But I am still in semi-quarantine. Since I am past 100 days, I am now allowed to go into peoples’ homes and eat their food. I could, conceivably, go to Concord, not for services but for lunch. The “crowd” there is lively, it would be nice to be with Diane, and the food is great. But the drive is close to two hours. I’d be fine going there, but I’m sure I would be tired on the way back. And then there is the problem of germs. I really don’t want to get sick and endanger my progress.

I could also stay home, make a round challah, and share it with some friends. We could say some blessings. I might feel more sadness this way, but a little sadness wouldn’t kill me. I could listen to that meditation CD that I still haven’t unwrapped. I could commune with my parents.

I have been trying to tune in to my parents’ voices. I feel that my mother, especially, often speaks to me. I’m feeling a little static here when I try to listen. But I think she’s saying, “Don’t go. You’ll be exhausted. Stay home and think your thoughts.”

Either way, I will have the satisfaction of having worked it out for Katie.

I had a similar experience on her 16th birthday, which was in July. She really wanted to go to New York to see “[Title of Show],” a new show whose development she had been following. We went on the Internet and bought tickets for her and a friend, and the two of them took the train to New York. My cousin Jeanne met them and went to the show with them and her daughter, Amanda. Ben and his girlfriend joined them for a birthday dinner that I hosted in absentia. Jeanne did a great job of helping to put it all together.

I was sorry that I couldn’t be there, but I felt great about having facilitated it. When Katie came home, we had a cake. She also had a group of friends over, and I spent most of the night in my room, hiding from germs. But I did swoop in every now and then, and I enjoyed the sound of their laughter.

I guess it’s a matter of figuring out different ways of staying connected. It’s still a work-in-progress.

My Proustian moment: watermelon with seeds

I should have written this post a few weeks ago when it was still summer and my Proustian moment was fresh in my mind. But other things intervened, so please forgive me for being somewhat out of season.

Already you might be asking, what does watermelon have to do with anything?

Well, a few weeks ago, I bought a small round watermelon from a local farm stand. When I cut it open, I was surprised to see that it was the old variety with black seeds. My heart jumped with joy. (Sorry…slight exaggeration.) In my neck of the woods, it is nearly impossible to find watermelon with seeds.

With great anticipation, I cut it open and took a bite, and sure enough, the flavor was crisp and sweet, unlike seedless watermelon, whose taste I can only describe as “anemic.” As I relished the sight of the bright color (not the pale pink of seedless watermelons), I was transported back to summers before anything serious had happened to me.

It wasn’t even that long ago. I could picture sitting outside with my children, everyone spitting seeds onto the grass, juice dripping down our chins. And of course I could see myself doing it as a kid, having contests with the other kids to see who could spit the seed further. Sure it was messy, but it was fun.

Seedless watermelons, of course, aren’t exactly seedless. I read that those white seeds are just seed coats and would never develop into a mature watermelon. They are, in fact, edible. One thing they aren’t is good for spitting onto the grass.

Seedless watermelon has been marketed widely since the 1980s, although it was developed years earlier. I’m all for modern conveniences, so I might sound kind of hypocritical here. After all, I eat seedless grapes and use self-adhesive stamps and envelopes.

But they’ve done a good job making seedless grapes, and I doubt that many people associate good memories with grape seeds.

And as for licking envelopes, everyone familiar with a famous "Seinfeld" episode knows that if the glue is cheap, licking envelopes can kill you.

Lost and found on the way to the beach

On Sunday, the first day of fall, (and Day+103) I finally got to the beach. I never went last summer, because of my relapse. I didn’t go this summer, because I was still in the early recovery phase after my third transplant.

Since I had a clinic appointment in Boston on Monday, I planned to go to the beach just north of the city with Katryn, a good friend from my Vassar College days. She lives in Portland, Maine; we decided that Plum Island, Mass., (next to Newburyport), was about equidistant for both of us. We’d picnic on the beach and take a walk, and then I would spend the night in Newton, at Diane’s, so I’d only be about half an hour away from Dana-Farber, as opposed to my usual two hours.

One thing I do very well is get lost. Which is, of course, what I did on my way to meet Katryn. In my defense, I have to say that Google Maps sent me via some unmarked streets. When I got off the highway I found myself in Salisbury (Mass.), trying to get directions. I can go inside places now if I wear a mask, but I thought it would be easier to find someone to ask outside. Everyone seemed to be from elsewhere, so I finally went into a convenience store, where a very nice clerk gave me a different set of directions, including, of course, an unmarked road.

Lost again, I pulled up in front of a yard where an older couple stood. When I told them my plight, they said, sympathetically, that it looked like I had been driving around for quite some time. They gave me a new set of directions, but my eyes must have glazed over, because the woman offered to get into her car and drive me to the turn I needed to take. I thanked them profusely, took her up on the offer, and I was on my way. The turn-off to the island was unmarked, so I panicked and thought I was lost again.

I called Katryn, who was already there. “I’m NEVER going to get there,” I said. “Yes, you will,” she said. We stayed on our cell phones until I saw her standing in front of the parking area where we were to meet.

It’s a beautiful beach with a long stretch of shoreline. We walked for a long time, enjoying the breeze and the blue sky and the sun and the boats. We walked with our feet in the cold water, and every now and then a wave snuck up and splashed us.

It was great, and a real adventure for someone like me who for a long time has been nowhere except the hospital and the clinic.

On the drive to Diane’s, I thought about how my little adventure could be a metaphor for times when you're lost. You’re driving along unmarked streets and you feel like you’ll never get anywhere. Then a stranger (I hope I’m not sounding heavy-handed here by possibly even calling her an angel) helps you find your way. And, suddenly, the vista opens up and you arrive at a great spot!

The next day I had my clinic visit. My platelets went up to 148 – almost normal. My WBC was down a little, to 2.7, and my hematocrit was down to 30.9, earning me another shot of Aranesp. I wasn't really concerned about these counts, because they were pretty high for me. And It was not unexpected for my counts to go down, because I am taking Valcyte, an anti-viral which can suppress counts. I'm taking the Valcyte because I tested positive, for the second time, for CMV (cytomegalovirus), which affects people with weakened immune systems.

Before I got the car, I put on my mask and went into the nearby Starbucks to get a coffee for my drive home. It was my second time, and I still got a kick out of it. My counts weren’t normal, but I was doing things that made me feel like a “normal” person.

They used to say it's my birthday

Picking hydrangeas took my mind off the birthday that isn't.

Yesterday would have been my fifth birthday. Instead, I was 100 days old.

To back up: Sept. 18 was the fifth anniversary of my first bone marrow transplant. It also happened to mark 100 days from my third. It was an odd coincidence that made me think.

If I had made it straight through without relapsing, I would have been at the five-year mark, a major post-transplant milestone, at which the chance of relapse is extremely slight. I celebrated my Sept. 18th birthday three times and was a month away from my fourth when I relapsed.

That date is kind of a like a wedding anniversary after a divorce. You look back at all of the hope and promise, and you wonder why everything unraveled.

Yesterday marked the 100th day after my third transplant, which I had on June 10. It’s good to get past 100 days; you’re out of the most critical post-transplant period. Still, you don’t get many restrictions lifted, except for being able to go into peoples’ houses and eat their food. (Is anyone listening? I’m ready to be fed!)

Don’t get me wrong: I’m glad for the progress I’ve made. But yesterday, I allowed myself to wallow. All of the literature advises us to get past the “why me?” question that we ask when we are diagnosed. We’re supposed to move on to “why not me?” And most of the time we do. Stuff happens. It might as well happen to me as to the next person. But, still, these dates sometimes cause a little regression. You can’t help but ask again, “This happened HOW?”

I figured I was allowed to feel what I felt. I took a long walk with the dog. We went through the woods and up to a field where I sat and let my breathing quiet my mind. The dog sat next to me, looking regal as her gaze followed a butterfly. The sun warmed both of us. I put my arm around her and forgave her for her misdeeds.

Today, with the sadness still lingering, I picked some hydrangeas from my garden and a neighbor’s. My mother used to like the hydrangea harvest when she and my father came for a late-summer visit from New York. She was particularly tickled that you could get the flowers for free here and dry them yourself, while back in the city, florists put big price tags on dried hydrangeas.

Our friend across the street used to hang them in her attic for us, so I never dried them myself. This year I felt inspired. I pulled the leaves off, put twine around the stems and hung them upside down on push-pins from the beams in my kitchen. I’ve raised three children in Western Massachusetts, but I still consider myself a New Yorker, and I chuckled at the thought that here I was, a former apartment dweller, standing on a chair hanging flowers from beams. I actually felt sort of adventurous, like I had stepped into “Little House on the Prairie.” (It doesn’t take much.)

I doubt you could really mess this up, but since I’m not normally artsy-crafty, it did take a little extra concentration.

This gave me an idea for a way to take your mind off of difficult stuff: Do something a little different. I guess it works the same way for me when I try to cook creatively, such as making my own tomato sauce for a change.

Now the hydrangeas are shades of green and pink. It will be interesting to see how they turn out when they dry.

Jimmy Fund Walk, here I come

I'm honored to report that on Sunday, I'll participate in the 20th annual Boston Marathon Jimmy Fund Walk.

I won't be there physically; I'm not up to walking five miles, let alone 13.1 or the whole 26.2-mile route. But my photo -- the one with the dog, on my blog's front page -- will be there as one of the mile markers. Photos of Walk Heroes, current young Jimmy Fund clinic patients, mark every mile of the walk, providing inspiration and motivation to walkers. This year, in addition to children, organizers wanted to include some adult photos since the funds raised for the Dana-Farber Cancer Institute also benefit care for adult patients and research for all ages.

I guess someone saw my first-person story on the Dana-Farber website, accompanied by a photo of me and the dog. They probably thought the dog looked really cute!

Organizers expect nearly 8,000 participants to walk all or part of the marathon route. Last year, the event raised $6.4 million for Dana-Farber, and they hope to exceed that amount this year.

I just looked at a slide show of the young patients, and I would definitely call each and every one of them a hero.

When asked if they could use my photo, I was happy to help out. But I'm not comfortable calling myself a hero.

I've endured a lot and coped a lot. I've learned how to make lemonade from lemons. I've formed strong ties with people I never would have met. I think I've gotten stronger, more resilient and funnier. People teach college courses and write books about what it means to be a hero. It's debated in presidential elections. It's a deep topic. Sometimes a person is clearly heroic, such as the firefighter putting himself or herself at risk. Sometimes it's unclear what you need to do to earn the title.

I'm interested in other survivors' take on this.

The long wait was worth it

I always expect to wait in the clinic for a while before my checkup, but today the waiting time was close to a record: two hours. I came, as usual, prepared with today's New York Times, leftover sections from yesterday, the book I am currently reading ("The Story of Edgar Sawtelle") and my little blue notebook, in case I need to jot down a question or a random thought.

I went through the newspaper and was reading the book when I finally got into a room. Sometimes I get caught up in thinking that delay signals bad news for me, and then my heart rate picks up and panic sets in. Today, though, I did a pretty good job of keeping the lid on. Maybe it was because I was so tired. I almost fell asleep in the chair. I did, however, have to resist my impulse to run into the hall, grab anyone with a white coat, and say to them, "Please, just turn on the computer and tell me my counts!"

Today I was scheduled with nurse practitioner Melissa Cochran. Finally, she came in. I knew the delay wasn't her fault; sometimes the whole system just seems to get incredibly backed up. Melissa apologized for the wait and asked me how I was feeling. I said generally pretty good, although I've been having some stomach problems.

She turned on the computer.
Drum roll ...

My white blood count was up to 3.8, in the normal range of 3.8-9.2. I can't remember when my WBC was last in the threes.
Hematocrit was up to 31.1 (normal is 34.8-43.6). Hurray for Aranesp!

Platelets were down a little, from 141 ten days ago to 133 today. (Normal is 155-410.) But 133 sounds good compared to my low of 4 during my last hospital stay.

If the counts are low, I usually toss the printout.
Today, I kept it. After quite a bit of worrying during the past week, I was, naturally, very happy.

Plus, Melissa said I could get a coffee for the drive home. By now it was rush hour in Boston, and I knew that door-to-door the drive would be at least two hours, so I was happy I could get coffee.

For the first time, I walked into a Starbucks and got a coffee.
Now, that felt normal.

I've been worried about my mattress

After I came home from my last hospital stay, I noticed that my mattress was having some kind of breakdown. A valley had formed on the side where I usually sleep. I had turned it several times, but the valley would not go away. My sleep, which I badly needed for healing, was interrupted as I tried to “climb” to the high side to even things out.

Finally I asked myself, “Why are you doing this?”

I can’t go back to work until a year after my last transplant (June 10), but surely I can afford a new mattress, I reasoned.

My friend Margaret had been raving about her new memory foam mattress, so I got one for myself.

It’s been about two weeks, and I still can’t get used to it. The same valley forms around my body as before, only this time it’s supposed to do that. But, half asleep, I roll around trying to undo one valley and, in the process, I make another.

Was one bad memory leading to another?

Today I talked to Margaret. First I told her that I was getting a little jittery about my upcoming checkup, and then I launched into my mattress mishegos. Midway through, I realized that the conversation was sounding like it belonged in a “Seinfeld” episode.

“When you sit on the edge of a bed to put your shoes on, your mattress is not supposed to sag,” I said.

“But it goes back to its normal shape,” Margaret reasoned.

“Yes, but it’s bothering me, and I think I might exchange it. I’m losing sleep over it,” I said.

Over the many years of our friendship, Margaret has listened to me obsess about a range of issues, both large and small. She suggested I find out the return policy and then take advantage of any grace period to give the mattress a chance.

But then she said maybe it wasn’t such a bad idea to be obsessing about the mattress after all.

“It will take your mind off your checkup,” she said.

I guess there's something to what she said. Most of the time we try to distract ourselves with good thoughts and memories, but all aspects of everyday life offer an opportunity to focus on what's right in front of us.

When all else fails, make tomato sauce

My ingredients for tomato sauce,
and flowers from my garden

The source of today’s funk seems to be an increase in the amount of time between doctors’ appointments. At Day 93, I am nearing the 100-day mark when I will go every other week. There will be 10 days between my last appointment and my next visit, scheduled for Monday.

So my fretting self says that gives me three extra days for something to go wrong. My rational self says, THREE DAYS? And the rational self adds, worrying about your blood counts does no good and is actually even bad for me, at least in terms of blood pressure and general sense of well-being. And then there is this little reality: my blood counts already are what they are, and thinking about the has no influence at all.

Back before my relapse, I had graduated to going every three months. I’m sure I had the same hesitancy in the beginning, but by the time the appointments had gotten so far apart, I was used to it and happy to have the distance.

There, are, of course, mostly positives to going less often. You have fewer instances of checkup anxiety to deal with. You feel like you can spread your wings a little more. Right now, especially after the weird things that have happened to me, I’m still more comfortable with being tethered. I guess it’s like being a little kid being gradually pushed out into the world, with all the complicated feelings that entails.

My worrying has stepped up a notch. The past few nights have been cool, and Katie and I have put on sweatshirts and sweatpants. I felt a chill coming on. “Are you really cold?” I asked Katie, figuring that if she was chilled, my chill was perfectly normal. “Yes,” she said. “We could turn on the heat.”

“No heat until October,” I said.

I went upstairs and took my temperature. I put the digital thermometer in my mouth and waited, my mind starting to race in an unproductive direction having to do with fever equals hospital admission equals graft failure, based on my experience in April. It was taking a long time for the temperature to register. Bad news, I thought. The longer it takes, the higher the temp. Finally I pulled it out of my mouth and looked. Oops, I had forgotten to turn it on. I tried again, and, surprise, it was normal.

I was still anxious this morning, when I set to work making tomato sauce from scratch. As I’ve said, I’m no cook. When I follow a recipe, I have to concentrate extra hard.

First, I chopped carrots, celery and onion. I love chopping.
Then, I peeled and cut five beautiful red juicy tomatoes bought from a farm stand down the street.


Suddenly it was all about chopping and stirring and what we'd do for the rest of the meal. I decided I'd send Katie to the store for some crusty bread --frozen, of course, since I can’t eat bakery goods yet.

“This might actually be good,” I thought.
And all of a sudden I was not thinking about my doctors’ appointment.

Sometimes you just wake up in a funk

I awoke the other day to sun and blue skies. It was a beautiful day, with only good things planned. But I was in a funk. I had no idea why. I was almost 90 days post-transplant, and in many ways functioning at a nearly normal level despite a low hematocrit that continued giving me trouble with my energy.

I tried to shake it off. I had breakfast, congratulated the dog for not peeing on the floor, chatted with Katie and then put on my tennis clothes and went to meet my friends for a doubles game.

I played really well. One friend even asked if I had taken another lesson. I was enjoying myself. But I almost started to cry.

I took a minute for a quick “therapy” talk with my partner, Deb.

It’s great to have friends who will stop the game to give you emotional support. Deb listened while I said, “I’m doing all these normal things and feeling almost normal, but I forget that I’m still in the recovery process.”

I said it was kind of jarring sometimes. Part of me was having trouble keeping up with the other part of me. Plus it takes a lot of extra energy to do so-called normal things.

I’m not sure that makes sense, but it helped to try to express it. We finished two sets and then I went to Deb’s house and sat in her backyard for about an hour.

We talked some more, and I felt better. She gave me a purple popsicle, which helped wash away the funky feeling.

Eating a popsicle kind of makes me feel like the kid I was before anything bad ever happened to me.

On the way home from Deb’s, I had a raspberry popsicle.
That one tasted great too.

Later I thought about the times my late mother sat with me while I cried. My mother was with me during my first round against leukemia but “missed” the relapse and the graft failure.

“You’re entitled. It’s perfectly normal to cry,” she would say.
I can hear her saying it now.

Remembering is like reliving

I've been thinking about a story from last week's New York Times, headlined, "For the Brain, Remembering is Like Reliving."

The story was about an experiment showing that memory can be as powerful as experiencing the event itself. The experiment, performed on the brains of epilepsy patients waiting for surgery, showed that "spontaneous memories reside in some of the same neurons that fired most furiously when the recalled event had been experienced." Researchers concluded that for the brain, remembering is a lot like doing. The experiment was reported Friday in the journal Science.

According to the Times, "Though it did not address this longer-term process, the new study suggests that at least some of the neurons that fire when a distant memory comes to mind are those that were most active back when it happened, however long ago that was."

Which is why it seems so real when you start remembering serious "stuff" that you've been through. I can get extremely worked up when my mind starts playing this tape from last August: My doctor, Dan DeAngelo, walks into the exam room and says, "The leukemia is back." Even writing those words now, I feel like I am reliving them.

Many of us might not be professional experts in post-traumatic stress, but we are certainly personal experts, and this brain thing goes a long way towards explaining the power of those chilling memories.

The flip side, luckily, is that good memories bring us back, too.

So when we start to relive the bad times, we can try to switch the channel and let those happy neurons fire.

Friday morning tennis hits the spot

For as long as I can remember, weather and health permitting, Friday morning has been tennis morning. That usually means playing at 7:30 or 8 a.m., quickly showering and then dashing into work, hair still damp and mind still on the last point.

When you've had three bone marrow transplants and spent weeks in the hospital and months recovering, for a long time tennis is just a memory or something to watch on TV. Until, at last, you come back. I've had two successful comebacks and am now trying for my third.

Yesterday at my clinic visit (day 86) my hematocrit was up to 28, from 26 at my last visit 10 days earlier. I got my second shot of Aranesp , a drug used to treat anemia after chemotherapy. It's interesting that now I think of 28 as "up." Days before I was first diagnosed in 2003, I ran an entire 10-K road race with my hematocrit "down" to 28. I guess my conditioning was better back then.

This morning, as I headed out to play tennis with my friend Ken from work, I had that old Friday feeling. We just hit for a while, and then I proposed playing a set just to see what happened.

"Don't baby me," I said.

He didn't exactly baby me, but let's just say that although I won 6-4, it wasn't exactly fair and square. For starters, he said that due to a shoulder injury, he would serve underhand, so I should remember to stand closer up.

We talked for a minute about Michael Chang's surprise fifth-set use of an underhand serve in his comeback win against Ivan Lendl in the 1989 French Open.

Ken also said that due to being sore from a tough run the day before, his lateral movement was not great.

So basically, he was giving me my game plan.

Every time he was about to serve, I moved back to the baseline where I would normally go.
"Move up, move up," he kept reminding me.
Thanks, Ken.

I remembered to hit drop shots and move the ball around.
In between points I took a few deep breaths and walked around the court for a minute, letting the breeze brush against my face. It was really warm, sunny and humid, but it felt good to be out there.

I asked him if he wanted to play another set, but he said he didn't want to be the one to do me in.
And I remembered that I need to stop before I'm tired.

I went back to the house for my "second breakfast," warmed up peach cobbler and coffee. I don't remember as much as I should from Thomas Mann' s "The Magic Mountain," but I was struck by the elaborate second breakfast and many other meals served to tuberculosis patients in an Alpine sanitorium before WWI. (Second breakfast, apparently, is common in parts of Europe.) I enjoyed my second breakfast sitting at my kitchen table and reading the newspaper.

I miss my job as a daily newspaper reporter -- you can't return to work until a year post-transplant -- but I don't miss rushing to work.

And, really, there's nothing like playing an opponent who tells you where to hit the ball and where to stand.

Going for a drive on roads where I used to run

My daughter, Katie, is doing well behind the wheel

I realized that I’ve been writing much more about tennis than about running or biking. That’s because with a hematocrit of around 26 when last checked, playing doubles and walking the dog are all I can do when it comes to exercising outdoors. I have been doing some stretching, yoga and light exercises in the house.

With doubles, you don’t have to be constantly moving, plus you can save your energy by shouting “yours” to your partner. I took the bike for a little spin but couldn’t make it up a small hill, so I put it away for now. Just for a test, I’ve run maybe five or six steps, but I don’t have the energy.

Instead, I’ve been a passenger on the roads where I used to run. Katie got her learner’s permit earlier this summer, and she’s been practicing on quiet streets around us. Some of them are on my running route. The driving has actually been going fine; she’s my third child, and I am past the white-knuckle stage.

I kind of mumble the same thing every time, having a conversation with myself. “I used to run here,” I say. “Well, you will again,” I answer.

When the other runners glide by, I feel a pang of jealousy.

After we switch seats and I am driving again, I change my focus by retelling my own Driver’s Ed story. We did our on-roads on the streets of New York, navigating traffic while learning the basics. The instructor took us to the Gracie Mansion area (home of the mayor) because the streets around there were among the quietest. This part may be apocryphal, but this is what I remember: My friend Amanda and I are in the back seat, and our friend Johnny is in the front, taking his turn at the wheel. Manda and I lean our heads together and giggle. One of us pulls out a water gun and starts squirting Johnny. Somehow, nobody got hurt.

My mother loved to retell the story of the day I took my test. “I was wearing my good red wool suit. It got ruined because I was sweating so much,” she’d say. Then she’d explain that she had let me drive downtown to where I’d take the test, and I did a terrible job – hence the ruined suit. She hoped the instructor would fail me. But I passed.

“Just because you were pretty,” she’d say.

This is where I’d roll my eyes and say “Mommmmmmm,” just like Katie does today when she’s annoyed with me.

Now here I am watching my own daughter learn to drive. The running, I hope, will come. The driving outings are kind of fun.