Wednesday, September 30, 2009


I made up for my transfusion-free clinic visit last week with a transfusion-full day this week. What's the equivalent of an all-nighter? An all-dayer? Well, that's what I had.

My hematocrit was 21, platelets 16 and white count 5.5 (normal). Melissa said not to worry about it because I had gone three weeks without a transfusion and that was pretty good. Meanwhile, she said, I was due for a bone marrow biopsy, one of my least favorite things. She emphasized that they did not expect to find anything. The last one was nine months ago, and it's just time for another. Waiting for test results is difficult, as I'm sure many people know. I am doing all that you're supposed to do, which is to keep busy, take care of yourself and refocus if you start to wonder "what if...." Still, it hovers.

Anyway, I got two bags of blood and a bag of platelets, and then Melissa did the bone marrow biopsy. It hurts, but after so many, you kind of get used to it. Also, it's short, about 15 minutes.

Katie was with me, and I felt bad that the day was so long, but she was a good sport. It was a beautiful day in Boston. She is learning the trolley system, so she took off for a while and went to Quincy Market for lunch. She also got a lot of reading done.

After getting to the clinic at 10 a.m., we left about 7 p.m., arriving home around 9. For part of the way back, it rained so hard I could barely see. Maddie had been home alone for way longer than we expected. We felt terrible about this. She hadn't left a mess – good dog! I took her out in the rain right away, and she was so anxious to get inside for some food that she jumped over the low stone wall along our driveway...and dragged me over the wall and onto the lawn, my umbrella landing on my head. As for the dog, I let the leash go, and she just stood there and looked at me curiously. Where's Lassie when you need help? Lassie would have gone to the door and gotten Katie's attention so she could help me get up.

I did manage to get up, blood dripping from my left shin. I had a long scrape, and part of it was a little gouged from the wall. I cleaned it up with water and a paper towel, got ice and put my leg up on a chair while nurse Katie ran upstairs and got alcohol, bandaids, cotton balls and bacitracin. She put up with my shouting when I put the alcohol on, then helped me apply three big bandaids.

Now it was about 9:30. Katie had eaten while I was finishing up with my blood, but I still hadn't eaten. She warmed up a plate of leftovers and put on the table so I could eat with my leg still on the chair. She was so sweet.

Silver lining to a long day of being poked, prodded and dragged by a dog: A child who takes care of you in just the right way,

Saturday, September 26, 2009

Acorns fall, tennis balls fly

It's raining acorns here in New England.

They roll around underfoot and shower from the oak trees so hard and fast that you worry about getting hit in the head. I googled "acorns falling early" and saw a ton of entries, dating back a couple of years. Many blamed it on the greenhouse effect and weird weather. We certainly had strange weather this summer: rainy and cold for most of June and July, stifling for a patch of August, and, lucky for us, beautiful weather for a couple of weeks, just when we were on vacation.

Anyway, you could almost call these acorns a health hazard. Sometimes I think, wouldn't it be "funny" if I tripped on an acorn patch and bled too much due to my low platelets and needed an emergency transfusion. It might reinforce my place in the category of "patients with weird problems."

I think I landed in that group (imaginary, of course,) when I went in for my second transplant with my arm in a sling. My major complaint that time was not about complications from the chemo but rather from the intense pain in my shoulder. I had played doubles the day before, determined not to fall on my Hickman catheter. Which of course is what I did. Wham. I tripped and could almost see the fall coming in slow motion. I tried hard to stay on my feet. That only made it worse. My friend Mike took me to the emergency room, where they said I had a separated shoulder. I have a bump as a souvenir. My doctor at the time, Dan DeAngelo, looked at me and asked, "What did you do?" I mumbled something about tennis, and he smiled. One of our tennis teachers later told me, "You have to learn how to fall." Hmmmmm.

I saw this same teacher the other day when I was going onto the courts to "play" doubles. He said he was glad to see me back on the court. I told him that I wasn't really playing, because I couldn't take more than a step or two and I was afraid of falling. "No excuses!" he said. "Get out there and run!" I didn't run, but I did smile.

I've played doubles a few times, and although it feels great to get my serve in, to hit a solid serve back and to actually get to the net for an angled volley, I let a lot go by. I think I should stick to just hitting with friends or playing an occasional set or two with people who know where I'm coming from and don't mind a slower game.

The other day I played with two of those and with a very nice woman whom I haven't seen for a while. She was on the other side. She's a good player and she seemed to have fun, but I felt bad that I wasn't giving her a good game. Also, maybe she couldn't help herself, but she didn't need to slam the ball at me so that I had to jump out of the way. She could easily have won the point by hitting a more controlled shot, just not one right at me. I don't want to be babied, although I appreciate and get a laugh out of an occasional "gift." (Thank you Donna for hitting it right at me at the net so I can put it away and feel so strong.) But I don't want to be killed, either.

Speaking of tennis, I made a tiny investment in the future. I've been afraid to plan anything, out of fear that the other shoe will drop. But I went to the Cape with the kids, and then to New York, and nothing happened other than a good time.

When playing tennis, I noticed my racquet really needed new strings. I can't describe it very well, but when the ball hit the strings, they seemed to complain. It wasn't a pretty noise. When I took lessons last fall from another of our coaches, he said not to restring until I was playing regularly. I don't think he anticipated the extended leave. So a few days ago, I took the racquet to a local tennis and golf store, and the man who took it for restringing said the strings were very soft, way below where they should be. After I get it restrung, it will take much less effort for me to hit.

So I made another small investment in the future. That should be good, as long as the acorns don't trip me up.

Thursday, September 24, 2009

No transfusions!

This week's clinic visit was a shocker, in a good way. I didn't need any transfusions! I had gone ready to spend the day, and I hardly knew what to do with myself. Well, I can say for the first time in a long time that I didn't spend the whole day at Dana-Farber.

Platelets were 21, still very low but up from 10 to 12, where I've been hovering. My hematocrit is pretty low – 25.3 – borderline for transfusion. But since I've been doing a lot of walking, and even a little tennis, I seem to have adapted, although I am kind of sluggish. The fewer transfusions the better, so they let me go because I feel OK. My white count is normal, 6.6, and my potassium and sodium are about where they should be, although the sodium is still low. I guess I need to eat more potato chips.

I stopped to get a Starbucks and drove home in a good mood. I needed to pick up a few things from the grocery store. I was thinking about how happy I was that I had made the small (OK, tall) coffee last the whole way back, and about how nice it was to feel calm. So calm that I drove right past the grocery store.

I was almost at the library, so I decided to drop in there to return a book that I had in the car. I wandered around a minute and saw all these DVDs, so I asked whether they had one I was looking for. I don't use the library enough. I was pleased and surprised that they said they could order it from another branch and it would be there in a few days.

I had been going through an annoying hassle over this DVD. I know, small potatoes, but annoying is still annoying. Katie and I have been watching "The Gilmore Girls" on and off, and she said it would be fun to watch the whole series from beginning to end. For her birthday, I ordered the first four seasons. I went on and got some of them from the independent sellers who have them used but in good or excellent condition. They're still expensive, but you can get a good price on one that may even be brand new.

We waited for the summer to end, because it's a fall kind of thing. When we opened it, we found that Discs 1 and 2 both started with episodes 5-8 and were missing 1-4. I called Amazon and they said that because it was past 30 days, they couldn't do anything. They said to e-mail the seller, which I did, but they did not respond. I guess my only recourse is to write a bad review of them on the Amazon site. I usually buy books from independent local sellers, but if I want a DVD I usually go on line. Next time, I might not use the independent sellers.

In the meantime, I was going to break down and rent the first season from Blockbuster. But my car had carried me to the library, saving me the trip to the video store. So, how about this for a moral: If you take a wrong turn, you might end up in a better place than the one you passed by. Of course I did end up back at the grocery store, but all was well (Dad's words) because of my good report and my library experience.

Monday, September 21, 2009

'Home' for the holiday

I took this photo Saturday with my cell phone at Bethesda Fountain in Central Park. A popular gathering place, it's frequently a backdrop in movies. Jeanne, Katie and I sat on a bench in the warm sun and could have stayed all day, but Katie and I had to head back home. The park visit was a part of our whirlwind Friday/Saturday visit to New York for Rosh Hashanah, the Jewish New Year.

When I was in high school, I hung out at the fountain frequently. Most of my friends lived downtown, so we tended to congregate more there. But I also went to the fountain, much of the time with my cousin Nancy, who lived uptown like me. Nancy was (and still is) nine months older and seemed so grown-up and cool to me. She hung around with a bunch of older kids, including a couple of guys who frightened and fascinated me. (What were they, probably all of 19?) I trotted along with Nancy, doing what teen-agers did at the fountain in those days. It was, as they said, groovy.

This past Saturday, a gaggle of college-age students in Speedos ran around the fountain, stopping in front of people to perform little songs and goofy dances for them, then holding out their hat. I told Katie that if some silly guys did that in "our day," we would have thrown them into the fountain. (Oh, will those aging baby boomers ever stop talking about the good old days?)

Around this time last year, I wrote a post, Should I Stay or Should I Go?, about my indecision about returning to the "old country" for the holiday. I was about three-and-a-half months past my third transplant, and although I was, and am, attached to the traditions and to going to services, I stayed home and sent Katie alone to meet up with Ben and cousins. I had a little get-together at my house where we ate a round challah with honey, symbolizing no sharp edges and a sweet New Year.

This year I actually went, although Dr. Alyea said I shouldn't go to the crowded services. Once again, as it has been for all my little getaways, the weather was perfect. Katie and I drove down Friday afternoon and moved our stuff into the apartment building where I grew up, and where we now stay with my mother's 93-year-old friend, Muriel, who has become like an aunt to us. Then we went to a restaurant called Deux Amis, where we had dinner outside with my real aunt, Marge; her husband, Bill; and my cousin Jeanne, who brought a round challah. I'm not supposed to eat in a restaurant, but I can sit at outside tables, and I can order cooked food (not salads or anything raw.)

The next day when Ben and Katie went to services, Jeanne kept me company walking around the upper east side, near the 92nd Street Y, where the services are. For lunch, we met another cousin, Joanne, at an outside cafe – most of the places have outdoor tables now – and then ended up in the park. We really didn't want to leave. It would be nice if there was a machine that would woosh you up to where you want to go, so that you could linger but still get back home at a reasonable hour. But alas, there isn't, and we ended up getting home around 9 p.m.

Two large school systems around us, Amherst and Longmeadow, have a sufficient Jewish population to close on the Jewish holidays. But South Hadley does not. It felt good to be in the city, where store doors carried signs reading "Closed for Rosh Hashanah" and people dressed for temple crowded the streets.

Back home, we felt good that we had said the prayer over the round challah, visited with family and maintained some tradition. It was, of course, different, because we grew up celebrating it with my parents, who hosted the holiday dinner the night before, and then took us to a relative's house after temple. I missed them. But I could still hear my father saying, "Here's to a sweet New Year with no sharp edges!" He loved to say that.

L'Shanah Tovah. Peace and good health to everyone.

Wednesday, September 16, 2009

The healing powers of dogs

Yesterday, I came into the house and, as usual, my dog, Maddie, ran over to greet me, her tail wagging as she circled to be petted over and over again.

I got down on the floor and gave her a big hug. Getting down on the floor, and getting up, is not so easy, but that's what I wanted to do. I held her there, feeling the warmth of her body and the beat of her heart. It was better than taking an Ativan. She likes to cuddle on the couch and rest her head on your leg, but she's not big on getting a bear-hug (dog-hug?) on the floor. Still, she stood patiently for a bit but then dashed out of my embrace. She went into her perfect downward dog, then ran off and brought me a toy. We played tug-of-war and she ran around and around the dining room table. Made me laugh. So I got two doses of medicine.

With the healing powers of dogness on my mind, I sat down at my computer to check on the blogs that I follow and saw that New York Times editor Dana Jennings, who writes on the Well blog about his fight against an aggressive form of prostate cancer, had just posted about the ways in which the family dog has helped him. In a post titled "Finding My Inner Dog Through Cancer," he writes that their 12-year-old miniature poodle, Bijou, has been a canine Zen master, teaching him to understand his "inner dog," napping in the sun whenever possible and not keeping his feelings buried inside.

And, echoing the thoughts that I had just been having, he writes, "So often, we — dogs and humans — just need to be near each other. We need the presence of another heartbeat, the inhale and exhale of another soul. Dogs understand the healing power of having your skull kneaded, and constantly raise their heads toward our hands, the way plants turn toward the sun."

In an earlier post, he wrote about how Bijou helped teach him how to live in the present, appreciating the simple pleasures of daily life.

Maddie, my two-and-a-half-year-old chocolate labrador retriever, has turned into a real pleasure. During her long puppyhood, I complained about her behavior, but now she's doing for me all the things Jennings writes about.

I let her off the leash when walking around the lake, where she runs into the water, dashes into the woods and comes when called. Usually I put her back on the leash when we are about three-quarters of the way around. I don't know if this was coincidence or training, but yesterday she stopped and stood at the spot where I usually leash her.

When I took my mini-vacations, she was a welcome overnight guest in the home of our friends, Jim and Jane Bloom. She runs around in the backyard with their dog, Blue, and then settles into the household routine. They are really early risers, and sometimes Jim takes a nap in the afternoon after work. Maddie gets in bed with him and rests her head on his shoulder. She stayed overnight once with our friend, Karen, and slept in the bed with her son. It's great to have a dog that people like to have in their home.

Good dog!

Friday, September 11, 2009

Visit to Serenity Garden breaks up long day

Topiary "Boo Boo Bear" at rooftop Children's Fairy
Garden at Brigham and Women's Hospital in Boston.

Instead of the usual Monday, I had my clinic visit yesterday, due to scheduling changes after the Labor Day weekend. As I suspected, my hematocrit was pretty low – requiring two bags of blood – and my platelets were 10, earning me a bag of platelets. At least the platelets stayed in double digits after 10 days between visits instead of the usual seven. My white count was good, 6.1, and I gained a couple of pounds.

So my worries about a system crash were just that, worries. Dr. Alyea is not concerned, although he would like those platelets and rbcs to start doing their thing. Also apparently I did not eat enough potato chips and crackers; my low sodium had risen after I followed instructions to eat salty snacks, but I slacked off after they said the level had risen, and then it started going down again. I don't have much of a "salty" tooth. Too bad my instructions aren't to eat a lot of cake and ice cream.

My friend Margaret, who works downtown, came to have lunch with me while I waited for my blood and platelets. We ate outside at the "secret garden," which is not exactly secret but is not

crowded either. It's a beautiful outdoor spot in Brigham and Women's Hospital's Connors Center for Women's Health, on the six floor at the neonatal intensive care unit, on the other side of the hospital from where I camped out.

One of my doctors had told me about it when I was in the hospital and really wanted to get some air and sun. This was a good way to do it without having to go out in the real world.

The garden was created and is maintained by a landscaper who lost one of his premature triplets about six years ago. (The other two are doing fine.) On one side is Linnea's Serenity Garden, a patio ringed by flowers and bushes. On the other side is The Children's Fairy Garden. They really are serene.

We sat in the Fairy Garden. Overlooking the rooftops of Boston's Mission Hall area, it also has a patio with tables and chairs, bordered by flowers and whimsical stone sculptures, such as the Frog Prince, and topiary such as Boo Boo Bear.

Margaret gave me a beautiful scarf which just happened to pick up the green in the sweater I was wearing as well as many colors on my necklace. The necklace has a story too: My friend Emily and her daughters Jessica and Samantha got it on a trip to Tanzania. It's a local craft made by women in many parts of Africa to empower the "Mamas" in the villages by providing them with an income. The colorful necklace looks like it's made of beads, but really it's paper. When Emily and Jessica came to visit me in the hospital, I admired the necklace, which Jessica was wearing. She took it off and gave it to me.

This was my second time driving myself, my drivers having returned to school. They gave me the transfusions with a little hydrocortisone instead of Benadryl, because Benadryl puts me right to sleep. (I need something because I am prone to reactions.) The drive is one-and-a-half to two hours, depending on traffic.

With help from Starbucks, I did not get sleepy on the way back, which is where I tend to get tired.

Biggest problem driving home alone: Opening the Odwalla bar that I got at the clinic.
Second biggest problem: Actually eating it. Yuk. I still haven't found one of those bars that I like. A chocolatey Balance Bar is palatable.

Last night I talked to my friend Ken, who "played" tennis with me the other day when I was pretty sluggish. I joked that now that my tank is full, we should play today so I could zip around the court just like the players we've been watching at the U.S. Open.

"OK," he said. "I'll be at your house at 11."

"I was only kidding!" I said.

"I know," he said. "See you at 11."

Gotta go get ready.

Tuesday, September 8, 2009

Cape Cod escape, Part II

Tennis friends, all dressed up: Standing, from left, Kit,
Donna, Debbie (mother of the bride) and Deb; seated,
from left, me, Korby and Nancy.

The Cape Cod trip with my tennis friends was great. This was my second Cape mini-vacation of the summer. The first was just a couple of weeks ago to Wellfleet. On this Labor Day weekend I went to Falmouth to celebrate the wedding of Kelly Rowe (now Flores), the daughter of my tennis friend Debbie.

We had plenty of sun. Donna and Deb and I shared a room at a motel with a tennis court. The beach was across the street, and a large pond was at the back of the grounds. We had time to go to the beach, take a walk along the water and even play some tennis. I actually played two sets. Donna, Deb and I started out just hitting. My racquet felt lighter than before, so I hit some decent shots. With my low platelets, I know not to run for anything, plus I don't think I could anyway, although I did take a couple of steps from time to time.

We gave each other names corresponding with players at the U.S. Open. I got to be Kim Clijsters, the 26-year-old Belgian who took a two-year leave from tennis due to serious injuries and the birth of a daughter. (I didn't have a baby, but you could say I had "serious injuries.) Clijsters defeated Venus Williams in the quarterfinals and then beat Na Li of China to advance to the semis.

Deb was Venus, and Donna was Serena (Williams). We shouted, "Come on, Kim," or "Way to go Venus," or "Good shot, Serena." I teased Deb (Venus) that I (Kim) had already beaten her.

An older man with white hair watched us from outside the fence. He walked back and forth, evaluating the scene. Finally he asked if we needed a fourth. We said sure and he went back to get his racquet.

Our new friend, 77-year-old Larry, was a good player with an exceptionally strong serve. We thought of asking him if he wanted a name, but we figured that might make us sound too crazy. I explained briefly that I was just getting back into tennis after not playing for a year. He played with Donna and I played with Deb. Larry was very gentlemanly, telling me to take an extra serve when I double-faulted. Actually I ended up getting most of my serves in, but anyone could see that I wasn't exactly in top-notch form. We lost 6-3, which actually wasn't bad. When I started in on "I cudda hit those shots a year ago," they reminded me to remember how far I had come from the days not so long ago when I couldn't even walk.

The bride displays a life jacket that
her brother made for her.

Of course the wedding was our reason for being there, and it was wonderful. I had been trying to decide whether to wear a mask, but I decided not to, having found a seat at a side pew near an open window and door that let in a nice breeze in. The ceremony was followed by a reception at a waterside restaurant. As evening fell, the lights sparkled on the water. Everyone was so happy. The bride, Kelly, and her mother, Debbie, both beaming, looked beautiful.

We sat a table where I felt pretty well protected from other people. I ate a little from various food stations; so far, so good. I couldn't resist going onto the dance floor a few times, even though that might not have been "allowed" because I was too close to people. Hey, but it was fun. My friend Korby and I did a great jitterbug. Also we found Debbie, formed a circle of tennis friends, and danced with our arms around each other's shoulders.

I bounced back from feeling sluggish (and anxious) a few days earlier. I hardly thought about platelets and rbcs. (Maybe the remedy is to be on vacation all the time?)

The next day we played a little more tennis with Larry and then went to the beach. We had a picnic there and couldn't pull ourselves away until around 3. It was warm, but the air had that late summer feeling, heralding fall, that makes you wistful.

It reminded me of a New Yorker cover from 1981 that my parents had framed and hung in their apartment. It shows a man bidding good-bye to the ocean around Labor Day. The man looked exactly like their good friend Bernie Glazer, who had died recently and who loved the beach. It was kind of eerie and kind of comforting.

Good-bye ocean, good-bye summer.

Friday, September 4, 2009

Eating blueberries, staying calm

Many people quote Thich Nhat Hahn's sage but simple advice for mindful living: "While washing the dishes one should only be washing the dishes." The author and Buddhist monk goes on to explain in his book, "The Miracle of Mindfulness," that if you are following your breath and are conscious of your actions, "There's no way you can be tossed around mindlessly like a bottle slapped here and there on the waves."

Focusing on the here and now is hardest for those like me whose minds starts to chatter the minute we wake up. But we can keep reminding ourselves and keep trying during the many opportunities that present themselves. (Many are described in the book.) Our dishwasher broke, and washing the dishes was a good place to practice.

I thought of this today when I was putting fresh local blueberries on my granola. This is the end of blueberry season, marking for me the end of what little summer we had. Most of my favorite farmstands have stopped selling them. The other day my good friend Nancy came for a short but sweet visit from Syracuse, N.Y., arriving mid-afternoon after a four-hour drive. I had an appointment and hadn't finished my shopping, so she came with me to look for the few things on my list, including blueberries. After coming up empty-handed at the farmstands, we drove about 15 minutes to a bigger store, Atkins Farms. They still had blueberries! I bought three boxes.

I had hoped it wouldn't turn into a wild goose chase for Nancy, but she said she was enjoying the drive in the country, and it turned out well because we got the blueberries. So?

When I was putting them on my cereal today, my mind drifted off onto how I needed to go to Atkins to look for some more, and what if they didn't have them, how sad it would be to switch to the smaller less delicious ones that come from Michigan. (Just so you don't think I lack perspective, please understand that I am exaggerating a little here about my level of concern.)

Then I remembered to enjoy the blueberries I have, to taste each one and savor it for what is rather than not even tasting it while ruminating on what may not be. This may sound silly, but it's a way of looking that's difficult to keep up but also very useful for cutting down worry.

Worry is something I'm very good at:

Tomorrow I head back to Cape Cod for two nights. I am going with two of my friends from tennis, Donna and Deb, to attend the wedding of the daughter of another tennis friend, Debbie. (Yes I know they're all D's.) We'll be right on the beach and it should be great. We are even bringing our tennis racquets. But worry is cutting into my anticipation.

When I went to the clinic on Monday, my platelets were 11 and my hematocrit was 24. White count was an excellent 7.2, and everything looked basically fine except for the pokey platelets and rbcs.

I got a bag of platelets and, instead of the usual two bags of blood, my doctor said I could try getting away with one bag and a shot. Yesterday and today I felt a little sluggish. I walked to and from the lake and around it, about one-and-a-half miles, and I wasn't exactly dragging, but I felt more tired than usual. My explanation: I should have gotten the two bags of blood. My crazy mind: Your counts are crashing and something bad is happening.

I called Dana-Farber and talked to one of the nurses in the stem cell transplant program. Trying to extract the soothing comment I was seeking, I told her my theory and said, "I assume that since I was there Monday and everything was fine, it's just the red blood and not a sign of some big crash, right?" I didn't get the big, "I'm sure you're fine!" How could she know, after all? She said probably it's nothing to worry about, but I should get in for a CBC as soon as I could. Between my schedule and theirs, that turns out to be five days from now, which turns out to be the time slot I already have, on Thursday, 10 days instead of the usual week from my last visit. Meanwhile they said of course to call if I start to feel really bad.

Obviously they don't think I'm ready to keel over. Obviously I don't feel that way. But it's so easy to get spooked. The way to handle it: Stop running scenarious. Settle on the logical answer, and then proceed, knowing that the problem will be remedied soon. Enjoy the friends over the weekend. Enjoy another chance to get to the beach, and, of course, the chance to share in the happiness of a beautiful bride.

Take a box of blueberries with me. Savor them one at a time.