Monday, May 30, 2011

Didn't he just graduate from kindergarten?

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.

Friday, May 27, 2011


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.

Tuesday, May 24, 2011

This and that

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...

Saturday, May 21, 2011

Year in review

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.

Wednesday, May 18, 2011

Confessions of a crazy runner, cont.

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.

Monday, May 16, 2011

Close encounters of varying kinds

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.

Friday, May 13, 2011

The girl who cried wolf

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.

Wednesday, May 11, 2011

Relay for Life successful event

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.

Monday, May 9, 2011

Meeting my donor

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.

Saturday, May 7, 2011

Just so I don't get bored

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.

Tuesday, May 3, 2011

Finishing with a flourish

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.