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

Bad dog, silly me

2009-11-08T19:18:00.000-08:00

OK, OK, there are no bad dogs, just clueless owners. I actually think there are some bad dogs, such as my golden retriever, Charlie, who attacked me over a piece of banana bread years ago, raging at me and sinking his teeth into my thigh and stomach. He was a young dog and hadn't lived long enough for this to be a learned behavior; I think he was just cracked, perhaps the result of in-breeding. In any case, when I call Maddie a "bad dog" it's on a totally different level. To continue...

The "silly me" describes my lack of foresight in going for a walk in the woods at 4 p.m. My mind was still in daylight savings time, and I forgot that I didn't have that much time before darkness would start to fall.

I felt pretty perky after my relatively high (28) hematocrit level the other day, so I did something a little different at the lake. As I have before, I jogged from one tree to another, and it wasn't a big success. I'm doing my physical therapy exercises (although not every day) but my legs still have no bounce. I saw the wooded path that I used to take to a field. I'd run up the path, around the field and then back down. The path looks different because it's mostly covered with leaves, and some trees had fallen over it. As I climbed up a little further, I saw paths going different ways. It was already getting dark, and I realized that if I kept going up "my" path, I'd get confused on the way down.

I decided to just go back down at that point, but I couldn't find my own path. Maddie was being very good, running around but staying with me. I looked up a steep hill and saw houses on top, the road behind them. I figured that was the best way to get back to civilization. So I climbed to the top, with difficulty. Maddie got there first, and waited for me, until...We looked way down and saw someone with three labs. Maddie dashed all the way down to play with them. I called and called. No way I was going to go back there. Finally, she ran back up. She had rolled in something really stinky.

On the way back down to the road, I bumped into the woman with the three dogs, two black labs and a chocolate, and we had a pleasant dog talk. But the smell was getting increasingly unpleasant, and I took my leave to go home and give Maddie a bath.

This was a nasty job. Ruined collar, stinky dog, two kinds of shampoo, an unhappy me with mask and gloves and an unhappy helper, a filthy bathtub, a shaking dog spraying water all over the bathroom and then, at last, a happy clean dog dashing around the house.

I was tired, but I had to go to the supermarket to get her a new collar. The other one was just too smelly to go near. The one I came back with was too big, but it would have to do for the evening walk. The next morning I got her another one.

The sensible thing the next day would have been to keep her on the leash around the lake. But I couldn't do it. She loves to run through the woods. She picks up large sticks and shakes them, so pleased with herself that she prances. A dog like that has got to do what a dog has to do.

Silly me for letting her.

Clinic: The good and the annoying

2009-11-04T11:11:00.000-08:00

Monday was another rare no-transfusion day, but it was still interesting.

While waiting for my appointment with Melissa, I went into the infusion room to get my egg salad sandwich and bag of chips from the cart. I need to get it before I am scheduled for an infusion, which is usually around 3, when the sandwiches are gone. So I go in and get it from the cart and usually eat the sandwich in the waiting room.

A few different volunteers push the cart around. The main cart lady, whom I shall not name, is very moody. Once she told me to leave because sandwiches were for patients only and I couldn't take it out of the room. When I told her I am a patient, she said OK. Still, she makes me wait near the nurses' station because she doesn't like me following her cart. Last week I came in late, and she was very concerned about me. She had taken out my sandwich and chips and set them aside specially for me – good mood day.

Then on Monday she growled at me and said I couldn't come in and get my sandwich because most patients get theirs at the time of the infusion, and I should be sending someone from the desk in for the sandwich. I hadn't thought of bothering someone at the desk to get my sandwich, because I could get it myself. I explained that I couldn't pick it up at the time of the infusion because it would be too late. "I'll give it to you just this once," she said, gritting her teeth.

Subtext: "I am the cart Queen and you shall not come near my cart if I am not in the mood to let you near."

Geez. Everyone is nice at the Dana-Farber Cancer Institute, and so it's especially jolting to bump into someone who seems mean-spirited. It's small potatoes, but everyone is under stress, and it just adds to it to have to dance around someone's moods.

Weird episode number two: I got my good report from Melissa (details just below) and I was talking to my sister and laughing over the phone about the sandwich incident. I also told her that at the end of my exam with Melissa, when she told me I could go home, I said, "I guess I'll have to return my sandwich."

The patient sitting next to me laughed. After I got off the phone, he said, "I'll take that sandwich." We started talking about why we were there and he said he was being treated for one of the chronic diseases, CML – chronic myeloid leukemia.

When I told him I had been treated for acute myeloid leukemia (AML), he said,

"When I was diagnosed they told me it was better to have the chronic. They said the "C" was so much better. They kept saying 'It's good you didn't get the "A," the "A" is much worse."

I gave him a look. I think he realized what he had just said. I had previously told him I was doing well. "Oh, but it's great you're doing well," he said.

I cut off the conversation, turned to my newspaper and wished him luck.

My thought bubble: "Hey, buddy, turn on your filter. It's not that hard to do."

It didn't bother me that much, but it made me think about the need for more people to put those filters on. I won't get into the difference between acute and chronic and which is considered "better." I guess you can put a spin on any illness and say one is "better" than the other. But voicing your spin to someone who has the other is just not the thing to do.

It goes into the category of unhelpful (or, frankly stupid) things people say, not just pertaining to cancer. I remember when I was pregnant, there were people who just couldn't help telling me disastrous pregnancy stories. For that matter, it goes for many problem situations, as in, "I had the same thing happen to me and it turned out terribly!"

Anyway, back to the good part of the day, my appointment with Melissa. My white count was 7.5 (high normal!), my hematocrit was 28.2, and my platelets were 26. Those were still below normal, but they were good for me and high enough to avoid transfusions.

I also had an appointment with Dr. Francisco Marty, the infectious disease specialist who's followed me since my first fungal pneumonia in 2003. He examined me, looked over my numbers and said I could stop taking Voriconozole, the anti-fungal drug I've been taking since my long hospitalization last winter, when a got another fungal pneumonia. My liver function is slightly elevated, and it might be from the "Vori." So at this point it may be hurting me, and it's not helping me, because the fungus is gone now. To compensate, I need to double my Prograf to 1 milligram once a day.

Dr. Marty always makes me smile. Monday was no different. The "good vibes" I got from him stood in contrast with the bad vibes from the moody volunteer and the overly-talkative patient.

The creature, unmasked

2009-10-31T09:35:00.000-07:00

The other day I wrote about scary words coming from my basement.

Today it was scary sounds.

The Terminix man was here, making a racket. Pound pound pound. Chip, chip. Then, the sound of wood chips falling down. Maddie lay on her bed, her ears up. She looked anxiously at me, then to the basement door, then back to me.

The man's name was Gordon Barnes. Sounded to me like a character out of Hemingway. Terminix was supposed to send someone last week. I waited the three-hour window, but they stood me up. I didn't care. I didn't want to see them anyway, until every night I remembered the reason I had called.

The creature runs around in my walls and in my ceiling every night. It scratches, claws, scuttles. It is so loud that it wakes me up. I imagine a huge claw coming through the ceiling or a scary creature falling through. My friend Karen said it actually happened to a friend of hers: A raccoon fell through her ceiling. Thanks, Karen.

After the creature woke me up the other night, I decided to call Terminix again. We all need our sleep, especially those with health issues. Gordon Barnes called and said he'd be over.

First stop, the attic. He said he found mouse droppings and even one dead mouse. Although there is no attic over my bedroom, he said there is a vent through which mice could travel. So the creature is probably a mouse or mice. I asked him what he did with the dead one. "Left it up there. It's dead anyway," he said. "Ummmm, do you think you could get it for me?" I asked. He guessed he could, and he went up and brought it down in a bag.

Maddie went over to examine the Terminix guy's measuring

wheel. For back-up, she brought her teddy bear.

Next stop, the basement. The basement is unfinished, with big old tree trunks and ancient beams the major supports. Anyone who goes down there sees trouble. There is evidence of old powder post beetle and termite damage. Sure enough, Gordon came up triumphantly waving a piece of rotten wood showing the lines made by termites and the holes bored by powder post beetles.

"If you've never been treated, you really should be," he said, explaining that although he didn't see any evidence of present activity, you never know when there could be some. "I'm sure it's been treated at some time," I said. Yes, but...he went back to "If you've never been treated" and I said the same thing I said before. He still had that piece of rotten wood in his hand. I was getting itchy.

When he went outside to measure the house, I fished through some papers, and, miraculously, found the piece of paper saying Terminix had treated for powder post beetles in 2006. Ah ha! When I told him, he was surprised that they hadn't followed through with their promised yearly inspections. These are things I just don't remember to think about. So he said never mind about treating again and he will check in with the office about why they haven't followed through.

Anyway, he wants to charge $450 for a service contract that basically amounts to setting mousetraps now and spraying for bugs in the spring and summer. They do not come and reset the traps, although they will pick them up and throw them away. Sounds like a lot of money for not much.

Anyone want to come over and have a mouse-trap-setting party? I will supply coffee and dessert. It will be so much fun! Come on over, and I'll let you paint my picket fence if you give me an apple.

He also thinks I should treat for the non-existent termites ($1,281) and get the attic insulated with insulation made of boric acid, which repels pests and mice ($700, price negotiable.) He said I'm probably losing 30 percent of my heat through that attic. I'm thinking about doing the insulation, but I'm not excited about the termite treatment.

They use an insecticide called Termidor to get the termites. I asked Gordon for more information and he gave me a raft of papers. I am going to take it to Dana-Farber with me on Monday. Sounds pretty yukky to me...and like money I don't want to spend for something that's not there.

In the meantime, at least I know that my creature is only a mouse. Still, if it falls out of the ceiling before the mouse traps get set, I bet that Susie will hear me scream all the way in Australia.

Oy vey, I have shpilkes

2009-10-29T20:18:00.000-07:00

In light of my financial problems, the words that I heard coming up from my cellar yesterday were especially scary.

Having finally broken down and turned the heat on a couple of weeks ago, I really wanted heat on Tuesday, a damp, rainy day. I felt especially tired and was not happy to realize the heat on one side of the house was not working. We have two systems, one for the old part of the house (built in 1848) and one for the new part, an addition built in 1992 and comprising my bedroom and the kitchen. The new part was cold Tuesday. I called Bay State Gas, our heating contractor, and a technician replaced a broken part and said we were good to go.

We briefly had heat, but by yesterday it was broken again. So another guy came. After he went down to take a look, I heard these words: "Oh no! Oh no! Oy vey, oy vey."

This is a little like hearing the surgeon say, "Ooops."

I held my breath as he came up the stairs. "What's the problem?" I asked, imagining an expensive repair.

"Whoever put that burner in did a bad job," he said. "They put it in backwards so I had to stoop under the pipes and crank my head around to see the dials and it hurts my back. I'm too old for this."

By the way, he said, my problem was fixed. The previous tech had simply forgotten to clean off the sensors. He didn't look that old to me, but what can you say.

I still had the glow of the benefit, but the week started off so-so. When I saw Dr. Alyea on Monday, he said I was doing very well. He didn't seem concerned that my platelets were back down to 13 (still in double digits, however) and my hematocrit was 22. My white count continued to be normal – a good sign. He said there was an option for boosting the platelets and rbcs, and that's a stem cell infusion from the donor. But he'd rather not do that, because it includes the risk of more – and possibly more serious – graft versus host disease. So he continues to believe my marrow is just taking its time recovering, and that we should be patient.

I know, I know, but sometimes it gets to me, especially after a day like Monday. I got in a chair in the infusion room at 3 p.m. and got my bag of platelets pretty quickly, but there was some glitch at the blood bank and my order wasn't processed on time, so the blood didn't come until around 5:30. Which meant I didn't get out until after 7:30. I was so tired, I called Jim and asked if he could stay with Katie that night. He said yes, so I stayed at Diane's and left the next morning. Diane gave me a nice plateful of dinner, and we had a little slumber party.

I hate to keep complaining about long hours spent at the clinic, because I know it happens to most everyone. Still, the long day, combined with my tendency to catastrophize about the low counts (I won't even go there) kind of brought me down.

I tried to describe my unease to my friend Deb Doner. "You mean you have shpilkes," she said. "What?" I asked. "You know, shpilkes." I didn't get the spelling of this great Yiddish work right, so Meryl and Danny told me, and I looked it up in a Yiddish dictionary. Shpilkes: pins and needles. Zitsh oyf shpilkes: Sitting on pins and needles.

This bit of research caused me to relax a bit. Somehow it's comforting to know there's a Yiddish word for my state of mind.

And, as my father liked to say, "This too shall pass."

Put more bluntly, even though he'd never say this: Stop kvetching.

Big hug

2009-10-25T18:28:00.000-07:00

A big thank you to those who participated in the fund-raiser last night. That includes Erin and Pat, who organized it, and Erin's family and all the friends, family and neighbors who came and/or donated. There were two tables of incredible raffle prizes, plus music, dancing and a buffet. I am still overwhelmed. Although Dr. Alyea had advised against it, there were lots of hugs and kisses. It couldn't be helped, and it was good medicine.

To back up: I met Erin Kelly in 2003 while healing from my first round of treatment for leukemia. I attended a class at her Ahimsa Yoga Center here in South Hadley, and found it calming and rejuvenating. I've continued going to class (except for now when I'm not allowed in an inside group), and we've become good friends.

Months ago, she sat at my kitchen table and asked, "How would you feel if we put on a benefit for you?" My answer: "Embarrassed."

Over tea one day, I had told her this saga: I had recently been terminated by The Republican newspaper and had begun paying the high premium for my insurance through COBRA. The newspaper "terminated" me at the end of June at the same time as they laid off about a dozen employees. All of them got severance packages, but I got nothing because they said that technically, they only needed to hold my job for 12 weeks. I gave 25 years of good service, but because I got sick, I walked away with nothing. I was devastated. I don't know when I can begin looking for a job, and I can't collect unemployment until I can look for work. I do get Social Security. I didn't mean to go into this, but it provides background on the fund-raiser. Also, seeing the work people, both employed and unemployed, brings it back.

I had told Erin about my worries, and she and her neighbor, Pat, started talking about the idea of a fund-raiser. I told her that I didn't want it to seem like I was asking for money. She said that people like to do this kind of thing, that it brings the community together. "Just think of it as a big hug," she said.

Because of the embarrassment factor, originally I had hoped I wouldn't be allowed to go. But Dr. Alyea gave the green light, and the more I thought about, the more I liked the idea of seeing many of my friends.

Margaret came that afternoon to go with me and hold my hand. As she drove me to the Holyoke Country Club in the pouring rain, I began to whine. "Nobody's going to come," I said. "It will be so pathetic." (Thanks Margaret for keeping me from going over the edge.)

We drove down a dark, winding road and suddenly saw twinkling lights up ahead. As we drove up, we saw lots and lots of cars. The lights were decorating the entrance to the function room. The sound of music, laughter and talking came through the windows. There were lots of people inside.

Erin greeted me at the door with a corsage. I looked around and was astonished to see so many friends from the community along with friends from work, tennis and baseball (from Joe and Ben). Diane and David came, and it was good to see them too.

Everything went off without a hitch. In addition to being a warm, generous soul, Erin is a good organizer. She told me today that 167 people attended.

I'm not sure what I'll do with the money, but I have so many bills to pay, I'm sure it will go to good use. Plus I might buy myself one tiny little treat. (You know, good for the healing process also.)

I was pretty tired by the end of the night, but it did feel good, like a big hug.

Torture

2009-10-21T09:25:00.000-07:00

I dreamt I was in a line of people slowly walking. Somebody pulled me aside and said I was going to be tortured. "Why me?" I asked. "Just because," he answered. He told me they were going to put needles through my eyeballs and do other painful things to me.

I was terrified, but I had no choice about going. Then I figured if I took two Ativan, I could get through it.

This was obviously a cancer dream. You can't fully get over it, although with the passage of time it haunts you less.

Another train of thought got into my head that night. I had just finished reading Anita Diamont's new novel, "Day After Night." She tells the story of four young women refugees from Nazi Europe, who, in 1945, got to Palestine, then ruled by the British. Each woman has suffered terribly, in different ways. They thought they were heading towards a new life of promise, but instead they are locked up in Atlit, a British detention center for illegal immigrants. The novel is based on an actual event, the rescue of more than 200 detainees and their placement in various kibbutzim.

I often have nightmares after reading books or watching TV shows or movies about the Holocaust. Who wouldn't? But maybe the dreams are more intense for descendants of survivors and for those whose relatives died in the Holocaust. In my dreams, I am usually being chased by Nazis. In my dream the other night, I was being herded in a line.

My maternal grandfather was from Germany and had a large family there. He came to the U.S. before trouble started and urged his siblings to join him when the situation worsened for Jews in Germany. They were professors and businessmen, and they said, "Our boys will never hurt us." Of course, their "boys" did hurt them. Many perished in concentration camps, while a few fled to Israel. My grandparents stayed safe in the U.S., where they lived in the New York area and had three children, two girls and a boy. My mother, the middle child, told and retold the stories to my sister and me.

So there I was being pulled out of a line, about to be tortured by needles. It felt pretty raw. When I told Katie, she had a positive interpretation. She focused on my will to survive: In the dream, I accepted the situation and was determined to get through it with help from my good friend Ativan.

It could also be a sign that I should be doing ads for Ativan.

Betwixt and between

2009-10-18T11:00:00.000-07:00

The other day I went to pick up a prescription at our pharmacy in the Big Y supermarket. It didn't look crowded, so I didn't put my mask on. My white count has been steadily good – 6.9 at last week's visit – and I'm eight months out, so sometimes I make a judgment call on the mask.

I've had a zillion prescriptions filled at that pharmacy. Clare, the friendly pharmacy assistant who knows all about my history, said, "It's great to see you with your mask off." Then, she looked at me sternly and said, "Now put it back on. You have to be careful of Swine Flu and all the other things going around."

"Okaaaaay," I said. She watched me put it on and kept her eye on me as I went down an aisle to pick up a few things.

I am betwixt and between.

On Thursday, I went to look at a college with Katie. I try to keep up with the tour guides, but this one was exceptionally energetic. I had to push myself, but I did keep up. We went up stairs, down stairs, in buildings, out of buildings at a decent clip. I was wearing a knit hat, and it was hard to put the mask on with the hat on. So every time we entered a building, it was hat off, mask on. Then mask off, hat on. I held tightly onto railings, applying hand sanitizer after every exit. I thought the other visitors would look at me strangely, but they didn't. It's probably not that uncommon to see people wearing a mask these days.

I was happy to sit on a couch at the admissions center (very empty, no mask) while Katie had her interviewl. I'm supposed to do my physical therapy exercises twice a day, but I figured that the tour could take the place of one set of exercises.

I learned that there was no Starbucks nearby, which is too bad because I judge the colleges partially on their proximity to a Starbucks. Also high on my list: visibility of roadside signs directing you to the school. It's a relief to put down your directions and just follow the signs. (Only kidding, sort of.) Anyway, on the way home Thursday, I knew that Katie would sleep and that I would get tired. I had a feeling for where the Starbucks was in the next town, so I set out looking for it. Of course I got lost, and the detour cost us about 20 minutes. Still, I got my strong coffee.

The physical therapist came shortly after we got home. "Uh, the dog ate my homework," I said. "I was at the clinic in Boston all day Tuesday and away looking at a school today so I didn't do as much as I could have." He didn't seem to care. We went through my exercises and added some new ones. I had my yoga mat on the living room floor, and Maddie came and lay down next to me with her stuffed green teddy bear.

Walking the dog in the rain, which is on my list of things to do today, is much more appealing that doing the exercises. But if I want to walk without wobbling and get my strength back to where I can run, I better do them.

Moving forward, moving backward

2009-10-14T11:02:00.000-07:00

Yesterday I got the final results of my bone marrow biopsy. Everything is normal, and I am 100 percent donor. Yay!

Still, it was a down day in terms of platelets and hematocrit. Last week I had 27 platelets and left without a transfusion; this week I had 13 and needed a transfusion. This week my hematocrit was 22; last week it was 24 and I snuck by without getting blood. This week I needed two bags. White count remained normal (another yay).

I asked Melissa how it could go from 27 to 13. She said the good news is that my bone marrow is fine, and that given all I've been through, it makes sense that my marrow is taking its time producing platelets and red blood cells. In a sign of either being a persistent reporter or a pushy person, I asked her again, using slightly different wording. She gave me the same answer (duh). I understand that I'll get the same answer every time, but I feel compelled to ask. I don't really mind going there once a week. Everyone is lovely, and it gives me a chance to put on normal clothes and some jewelry. Still, it can get frustrating, and especially since I'm going alone now, it can make for a very long day.

Margaret had met me for lunch, a nice diversion in a long day. The waiting room overflowed with people like me whose Monday appointments were canceled due to Columbus Day, and with patients who normally came on Tuesday. After Margaret left, I waited to see Melissa and then waited about an hour and a half for the blood bank to send over the "product." By the time I got out of there, it was 8 p.m. I had to get a high-test coffee; it was either that or fall asleep. Got home around 9:30, dashed through the grocery store and had a sandwich for dinner at around 11. I slept through some of the transfusion; that and the coffee had left me pretty wide awake even after midnight. So I took half an Ativan and went to bed around 1. Next thing I knew, it was 11 in the morning.

On another topic, at the last minute the insurance company approved four visits by the physical therapist. I ran out and got an exercise ball and went through the exercises with the therapist, Keith. I have my work cut out for me. When I tried to balance on the exercise ball, I rolled over onto the floor. He tied a Thera-band to the post at the bottom of the staircase and told me to loop it around my waist, lunge backwards and then come forwards with control. Instead, I catapulted towards the stairs. There are others, none of them too much fun.

Be careful what you wish for.

I'm supposed to do most of them three times a day. Yesterday was a washout, so today's the day. I'm exhausted. But I guess I better start. I can't remember everything he said, so it's a good thing that he printed them all out, with diagrams. Now I have to find that piece of paper.

Too weak or too strong?

2009-10-09T18:24:00.000-07:00

Dr. Alyea put in an order for home-based physical therapy for me because, in addition to weakness in my legs just from being in bed so long, the issue is now compounded by prednisone, which can cause muscle weakness.

Although I am slowly tapering the prednisone, which I've been taking to control mild graft vs. host in my digestive system, my legs are very wobbly. My breathing is OK, allowing me to walk the dog and hit some tennis balls, but my legs feel wooden. When I tried jogging between trees the other days, my legs provided no shock absorption, and I could feel the jarring right up to my stomach. My balance is off; sometimes in the house, I sway into a wall and right myself with my elbow.

A nurse from the VNA came the other morning with forms to sign and questions to answer, followed that evening by the physical therapist, who evaluated my strength and flexibility. The plan called for doing the physical therapy in the house because I can't go to a facility filled with germs.

The nurse was extremely nice, asking me all sorts of questions about my usual day. I told her I split the grocery shopping with Katie, but I wore a mask and just ran in and out. I said I was walking a lot and hitting some balls, and then I told her the problem with my legs.

Keith, the friendly physical therapist, measured my leg strength and flexibility. After each test, he told me that for a young person (I liked that!) I was way off where most people would be. I couldn't resist his pressure: "We have a lot of work to do here," he said. I couldn't bend my knee beyond a certain point. "We have a lot of work to do here," he said. Etc. He said I should get an exercise ball and he would return Monday. He clearly thought the exercises were important, and he understood why I had to do them at home.

After he left, I said to Katie, "In other words, I'm a total mess."

Katie corrected me. "That's not what he was saying at all," she said. "You've come a long way. He's giving you the exercises so you can get even better."

This morning, a nurse from the VNA woke me up with this news: Because I was too active, Blue Cross/Blue Shield would not authorize the PT. She said that because I could shop, walk and play tennis, I could make it to a facility. I said that's ridiculous: I'm not really playing tennis, I'm standing in one place hitting the ball. And yes I'm walking, but it's difficult, and it's OK because it's outside.

She said she'd pass that on. About 15 minutes later, an evaluator from BC/BC called. "How are you today?" she asked. By now I was catching on. "Well, I'm OK but I'm still in bed," I said, which was true. I re-explained to her that I could not go to a facility. I also realized that they had a picture of me running around a tennis court. I repeated that this image was not true.

I realized later that I should never have been so chatty with that first nurse. She was looking for signs of immobility and examples of being housebound. I was trying to give her the more nuanced picture. This of course is small potatoes, and I'm lucky they paid for my major procedures and all the charges that went with a long hospitalization. But still, they should be more open to patients' needs after the crisis has passed. It will save money in the long run. For example, someone like me could feel unsteady and fall, and that would lead to more costs.

A similar thing happened when I first got out of the hospital this spring after being in "the big house" for three and a half months. When I first got out of bed I could barely walk. They wanted to get me out of the hospital, and the first idea was to send me to a rehab facility. Instead, they decided to send me to my sister's in nearby Newton, with visits to the clinic for transfusions three times a week. They put in a request for a physical therapist to come to Diane's house.

The woman came once and taught me some exercises. By that time I could walk a little, so she held my arm while I walked (with difficulty) about half a block, my maximum. I returned to the couch, exhausted. The next day word came that PT at the house was denied because if I could walk, I could get to a facility. They did not seem to understand that I could not be around germs, and that my level of walking left a lot of room for improvement.

The care coordinator and my nurse at Dana-Farber said they would fight it. At that point I could barely get off the couch, and fighting with the insurance agency over PT was not up my alley. So I told them to drop it.

On the phone this morning, the evaluator from BC/BS seemed to finally get it. She said she was confident they would give me at least a few visits to get started, and they would call me back with the final answer. So far I haven't heard anything.

Next time I'll remember to sound my worst and take out my smelling salts.

Resistance...or not

2009-10-07T19:18:00.000-07:00

The penultimate harvest of flowers

from my garden.

Yesterday, as I was eating breakfast in my usual spot at the kitchen table, I looked out the sliders and watched the pine needles float onto the trowel still on the table in the backyard. This of course also means that the table, umbrella and chairs are still out there too. So is the grill cover, thrown over the back of a chair instead of being on the grill where it belongs.

All are covered with a dusting of pine needles.

It's the intersection of summer and fall. You could call it laziness, as in, "Someone please put that trowel away and cover the grill! (That means either Katie or me.) The table and umbrella fall into the "wait until Joe comes home category." Still, it also has to do with resistance towards letting summer go. It wasn't the best summer, with a lot of rain followed by a period of high humidity and heat. But there were beautiful days, and we were lucky to have most of them on our mini-trips to New York and Cape Cod. The sunny days definitely helped keep my mood upbeat.

The garden is mostly shot, but some flowers are hanging in there. The other day I picked one bunch, and I think I can get one more. I like my perennials, but I have to say, those zinnias and snap dragons are the best for picking. I'm still not supposed to dig in the dirt, (out of fear of picking up a fungus) and in the spring I wouldn't even go near the garden to cut a flower. But now I think it's OK to pick a bouquet. It will be one last "summer" experience.

Fall, of course, is beautiful here. What I don't like is that it presages dreary November, when your spirits can really dip. But there's nothing not to like about this time of year. The leaves are brilliant colors. We've had a few cold days, but mostly they've been sunny and warm. Yesterday when I hit tennis balls with my friend Ken, the trees were vibrant against the blue sky. The sun, not the kind that scorches you in summer, makes you warm and toasty.

"This day is so beautiful," I kept saying.

No, I was not stalling...I really meant it. I was having fun. Ken, like my other tennis-playing friends, is really good at hitting it to me or within reach if I take two steps. Yesterday we joked about the two-step rule. Three steps and I don't bother. He said it helps him too, because he can cultivate accuracy by trying to keep it within my reach.

Thinking back... When I got my homeward-bound coffee at Starbucks on Monday, I was delighted to see that they had pumpkin scones. I don't usually like to buy pastry there, because it is overpriced and not great. But pumpkin scones – and other things pumpkin – are among my favorites of the season.

Maybe I'm not so resistant to fall after all.

I bought the scone and enjoyed it on the way home. This, for the record, is the crazy way I ate the scone. It has too much vanilla icing, which, although tasty, is too intense even for someone like me with a big sweet tooth. I took some full bites, but I also, like a squirrel attacking a nut, took some small pieces and chewed out the insides, leaving the sugary coating on my lap. (And imaging how odd my behavior would look if there was a camera in the car.)

Then I went back and started on the discarded sugar chunks, because they were too good to throw away. I did make myself stop before I got to them all!

Transfusion-free day #2

2009-10-05T19:28:00.000-07:00

Today I had my second transfusion-free day at the clinic, and, to balance out last week's marathon, it might have been my shortest visit too. I was in at 11 a.m. and out at 1:45 p.m. I hardly knew what to do with myself.

My platelets were 27, a high for this round. Red blood count was pretty low – 24 – but I feel OK and have been getting around fine. So I just got a shot of Aranesp. White count was normal, 6.9.

It reminded me that a day of downs like I had last week does not signal down, down, down. We should not expect recovery to be a straight upward line, even though some of us get frustrated when it's not. It's called a rollercoaster ride for good reason.

I asked Dr. Alyea about the peculiar way my hair and my eyelashes are behaving, or, should I say, misbehaving. The lashes on half of each lower lid fall out, then come back in, then fall back out and come in again. Currently I am in the half-off phase, and it looks kind of odd to me. As for my hair, it has stayed in the fuzzy duckling stage for longer than after past transplants. Also it is very thin, and I have a couple of bald spots. What I do have that I remember from before is the Denis the Menace cowlick. I actually have enough hair in some places that I could use a trim, and tomorrow I'm going to see my hairdresser in hopes that cutting it shorter might help it thicken. Small potatoes, but still ...

Dr. Alyea said it might be some mild graft vs. host disease, which is actually not a bad thing.

Anyway I got home on time to take Katie to the runner's shop in Northampton for a badly needed new pair of running shoes. I looked at all the clothing and general running stuff and felt anxious to get back into it. A wall of gloves and mittens drew my attention. I continually buy those and lose one. I was going to go look, but then I thought, well, I'm not running, so why spend the money, which is a variation of, I don't really deserve these. My mother's voice did not rescue me by saying, "Oh, go ahead, buy the mittens, you'll wear them soon," so I didn't do it. I can always go back some other time.

When we got home, it was getting dark, but it was still warm, and the sky and trees looked beautiful. Before dinner, I took Maddie for a quick twilight walk around the lake. Inspired by the trip to the runner's shop, I jogged between two trees that were kind of far apart for me. My legs still haven't regained their spring, and it was more like a fast walk, but it felt like an accomplishment. Later in the walk, I "jogged" again. It feels like starting from scratch. But I assume that when you get going, your muscle memory comes back and helps you out.

In any case, those little steps felt pretty good.

Should I call?

2009-10-01T20:10:00.000-07:00

First of all, don't worry. I will explain the photo further down.

In the meantime: Last night I started mulling over whether I should call Melissa today to ask about the early bone marrow results, or whether I should tough it out until my appointment. She had said either I could call or I could wait until Monday.

I figured I wouldn't call. If it was bad news, it would ruin my weekend, and nothing could be done immediately anyway. And if it was bad news they would call me. I told myself I should realize, however, that if I saw the Dana-Farber number on caller ID, I should not have palpitations, because sometimes they call with good news or just a minor question or piece of news. But then I figured that I should call because there was no reason to expect bad news, and I wouldn't have to worry about it over the weekend. Hold on!

I know patients should never have this discussion with themselves. I've heard this from many people, and I agree with it: If you want to call, then call. Don't waste time worrying about how you'll sound or whether you're displaying weakness by calling.

Still, the mind can be a weird place. Also, this was a hard one for me because I hadn't had one in a long time, and I've had too much experience in getting bad news from them. I decided I needed to do something to chill out. My options were (a) going into my room and doing a little yoga and meditating, or (b) having an Ativan and lots of sugar. I chose (b). I cut the Ativan in half, but doubled up on the sugar via my still-favorite, Klondike bars. I've discovered the kind with chocolate ice cream and extra thick chocolate coating. I got to sleep fine.

I was awoken around 5:30 p.m. by the stupid alarm that goes off whenever the mood strikes it at the little museum across the street. So I walked the dog and went back to sleep until around 10:30, pretty late for me these days.

I called Melissa around 11:30, but hung up on her voice mail. While dialing, I could feel my heart beating despite saying to myself, "It's only a phone call!" I didn't want to leave a message, so I took the dog for a walk. On the way back, she grabbed a big tree branch with two forks and started shaking it in delight, whacking my leg as if she were in a fencing match. Now this is the same leg bandaged in three places from the fall she took my on the other night. I separated the stick into a smaller one and carried it down to my yard so I could throw it for her. She ran a few laps, shook the stick and ran into the neighbor's yard (where I've caught her before stealing sneakers). Once there, she found something to roll in. I walked down and got her, and she smelled pretty bad. Later, when Katie came home, we gave her a little outside bath.

Don't get me wrong about her. She is great these days and is mostly well-behaved. I think sometimes her exuberance just takes over.

Anyway, I decided to call after my podiatrist's appointment. This is not very glamorous, but I have an infected ingrown toenail. Dr. Alyea prescribed Bactrim and said I should go to a podiatrist. They had a quick opening, hence my visit today. The podiatrist said he would anesthetize the area and cut away a piece of the toenail. I've known him for a long time through our kids, and he's a friendly guy.

"I hate needles!" I said. Coming from one who has been stuck more times than I can count, that's a strange thing to say. But I guess you could still hate them, or hate them even more, if you've gotten a lot. Also I don't like the idea of being stuck in the toe. Anyway the podiatrist smiled at my declaration. We chatted about our kids while he slowly did the injection, and it really wasn't so bad. I didn't feel the rest.

So now I am really bandaged up. Hence the smiley-face toe above.

When I went home, I called Melissa again. No answer, so this time I paged her. In the meantime, Maddie and I went to Deb's for our "playdate," with running around in the yard for the dogs and Deb's good coffee with Evelyn's good apple crisp for the "moms." Melissa called while I was there. She said two of the early test results were in, and they were both great.

Big outbreath.

Tomorrow Katie and I head to Maine. We are stopping for an overnight at my college friend Katryn's in Portland, a cool little city. The next day we're going to see Joe at Bates, around 45 minutes away in Lewiston. We'll see him in the morning and for lunch, but then he'll need to go because he is announcing the football game.

I will be able to breathe easily.

I will not be taking the dog.

Ouch

2009-09-30T09:19:00.000-07:00

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,

Acorns fall, tennis balls fly

2009-09-26T19:44:00.000-07:00

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.

No transfusions!

2009-09-24T14:30:00.000-07:00

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 Amazon.com 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.

'Home' for the holiday

2009-09-21T20:36:00.000-07:00

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.

The healing powers of dogs

2009-09-16T08:38:00.000-07:00

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!

Visit to Serenity Garden breaks up long day

2009-09-11T07:02:00.000-07:00

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.

Cape Cod escape, Part II

2009-09-08T08:09:00.000-07:00

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.

Eating blueberries, staying calm

2009-09-04T14:14:00.000-07:00

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.

My connection to Ted Kennedy, and other thoughts

2009-08-30T18:42:00.000-07:00

Many people are talking about their connection to Ted Kennedy.

Here's mine. Well, it's not exactly mine. It's my mother's, but it has become part of the family lore and therefore feels like my connection.

I was at Brigham and Women's Hospital in Boston in 2003, during my first round of treatment for leukemia. It was early fall, around the time of my stem cell transplant (Sept. 18).

My mother came up to my room, all smiles. "I just bumped into Ted Kennedy!" she said. He had apparently been visiting someone at the hospital and was going out as she was coming in. She stopped him in the lobby. My mother asked if she could shake his hand, and he said, of course, yes.

The Democrats were in disarray, doing a lot of soul-searching after their losses in the 2002 midterm elections.

Mom said to the Senator: "I love you very much. But can't you tell those Democrats to get their act together?"

Kennedy chuckled.

"I'm trying, I'm trying," he said.

I got a chuckle out of it too.

Meanwhile, here are some observations based on things that happened to me in the past few days:

Ways not to unpack a bag after vacation: Pull clothing out of overstuffed bag one piece at a time. Move bag from one side of the room to the other so as not to trip on it. Take remaining clothing out of bag and put it on the floor, hoping that it will fly into your dresser drawers when you are sleeping. Realize that actually putting everything away is less painful and probably quicker than what you're doing. Procrastinate a little more.

How not to fill out forms and gather documents: Put it off until late in the day. Start printing papers and answering questions when you are bleary-eyed. Print two copies of one thing and none of another. Attempt a remedy, then get confused about which pile is which. Accidently delete something and reach for hard copy. Search for hard copy for more than an hour. In an instant, realize that it is two chairs down from you, in pile #2 rather than pile #1, which is in chair next to you.

How to quickly subvert a resolution: Start the day by vowing to cut down on sugar. Immediately add brown sugar to your oatmeal and follow with coffee cake.

How to get rich quick: Realize your wallet has $1 in it when you are just back from a vacation in which the twenties seem to have flown out the window. Son having left for college earlier that morning, check the top of his dresser for change. Find it scattered there. (Never look in drawers, only surfaces.) Pick out bunch of quarters and remember to return for small change. Go into bedroom sporadically occupied by older son. Jackpot! Help self to quarters strewn on dresser. Remember to return for small change if the going gets tough.

How to lose track of your limitations: Having lost the taste for coffee and then happily regained it, go about regular routine of taking coffee cup around with you all morning. Feeling like a big shot, go up stairs carrying laptop in one hand and coffee cup in the other. Lose balance and start to fall backwards. Make correction leaning forwards, stumble and almost splash coffee on stairs. Luckily, make it upstairs without big spill, vowing not to try that again for a while.

How to eat dinner alone and at a crazy hour: Do who-knows-what all day and go to store around 6 p.m. for missing ingredients needed to make lasagna that you vowed to make last night but never did. Start cooking around 7. Figure daughter will have to wait for dinner after returning from concert, but figure it's better than nothing. Stand there when daughter comes home with friend and says she's just grabbing some stuff and heading to another friend's house for a sleep-over. Look shocked, then realize she already told you she might do this. Eat while reading a book, at table still strewn with papers from above-mentioned project, around 9:30.

Realize that, after a period when you had to force food down, you are thankful you have an appetite for the lasagna, it turned out well, and there are leftovers to share with daughter tomorrow.

Cape Cod mini-vacation

2009-08-29T10:08:00.000-07:00

Wheeeeeee! Vacation is fun!!!!!!

The harbor in Wellfleet. We walked along a path that you

can't see in the photo.

We had three great days on our mini-vacation to Cape Cod.

Blue skies and warm sun greeted us in Wellfleet and stayed with us during our stay. A rainy front was kind enough to wait until we got home, where it is now pouring. We walked on the beach, skipped stones, swam at the bay, ate ice cream and had dinner outside at The Beachcomber, a waterfront restaurant and one of our favorite places. (Melissa, my nurse practitioner, had given me permission to order fish and chips because we could assume it would be cooked at high heat.)

Ben, Katie and Joe outside The Beachcomber.

We also had time to hang around and read the newspaper and make some headway in our books. I followed through on my assignment to eat salty snacks and drink liquids with salt in them, in hopes of raising my sodium level. Thursday I got my blood checked at a lab on the Cape, and the results on Friday showed my levels had improved. I guess that means I have to keep eating potato chips.

Katie and me at one of our favorite bay beaches, South Sunken

Meadow in Eastham, one town west of Wellfleet.

On the way home, we listened to the WEEI/NESN Jimmy Fund Radio-Telethon, a fundraiser for the Dana-Farber Cancer Institute. It was great to hear my doctor, Edwin P. Alyea, along with a patient who like me had more than one transplant. We were listening to interviews with survivors and family members when I heard a man speaking and said to myself, "Hmmmm, that sounds like Dr. Alyea." (I hadn't heard them introduce him or the patient.) My ears really perked up when host Glen Ordway said in response to something the patient said, "Well, Ted, what do you think of that?" Dr. Alyea sounded terrific.

Now, alas, we must do laundry and get ready for school. Joe leaves Sunday for Bates. This will be hard for me, but the time has come. Katie starts her senior year of high school on Tuesday. Yikes. Thank goodness for Maddie.

They say it's my (regular) birthday

2009-08-24T19:15:00.000-07:00

Top, birthday girl, today with my sister, Diane, and

at my party around age 7.

In transplant land, there are two ways to look at birthdays. One is the date on which you are born. Your regular birthday? The other, of course, is the date of transplant, marking the day when you receive your stem cells and get the chance for a new life.

Well, today is my regular birthday. I guess I can just say it's my birthday and most people get the idea. I've since had four other birthdays, the last on Jan. 31, about seven months ago. (In transplant lingo, that's seven months out.)

I celebrated with platelets and cake. It was a good day spent mostly in my favorite haunt, the Dana-Farber clinic. Joe drove me to Diane's, where she made a great variation on a Nicoise salad that I was happy to be able to eat. She then drove me to the clinic. I needed platelets (they were 12) but not red blood cells (hematocrit was 29). White count was normal at 6.3. I thought it would be a short day. Turns out that now my sodium is low, which sometimes happens post-transplant. I got an infusion of saline solution, and so by the time I got out of there it was after 5. Oh well, that's actually a pretty short day, since I didn't arrive until 1.

My instructions are to eat salty snacks and drink beverages other than water, which I was guzzling in the heat. Lemonade and Gatorade are two good ones. I usually have to water those down because they're so sweet, but I guess I should go a little closer to full-strength. Melissa said changes in intake will probably fix it, but I need to get my blood tested in a couple of days to make sure.

While I was getting my platelets, the nurses came over with a cake and a bottle of sparkling grape juice and sang Happy Birthday. That was very sweet.

Diane drove me home and dinner was almost ready, courtesy of Joe, who was making linguine with chicken, broccoli and carrots. Yum. Then we all had chocolate cake and vanilla ice cream. Katie and Joe dimmed the lights, brought the cake over and the three of them sang happy birthday, Katie surprising us with a lovely harmony at the end.

Tomorrow we head for Cape Cod, where we will meet Ben for three nights in Wellfleet. I'm looking forward to it.

I guess I forgot to say how old I am. Oh well, it's my birthday and I can do what I want to.

Home with Joe and Katie and the cake, and below, earlier

today getting platelets at the clinic, where Kerri and other

nurses have just sung Happy Birthday and delivered cake

and sparkling grape juice.

Out to lunch

2009-08-22T19:19:00.000-07:00

Out to lunch with Tami.

I've been busy having lunch this week.

And tea and crumpets. Or rather, coffee and pastries.

On Wednesday, I met Tami, one of my friend/sisters from high school. It's part of our summer routine when she spends two weeks at her family lake house in Connecticut.

I feel very normal when I get in the car to go anyplace other than Dana-Farber, even if it's just a little bit out of my "zone."

Tami lives outside Philadelphia, and we used to take turns going to each other's houses over the summer when she's closer in Connecticut, about a two-and-a-half-hour drive. Then we decided to meet somewhere in between. On one of the sweltering days that we've been having, we sat outside a restaurant at an outdoor shopping mall. She got a sandwich and brought it out; I ate a sandwich that I brought along. It would have been nice to sit inside in the air-conditioning, but I'm still being careful about germs and I don't think I should go in.

As usual, it was great getting together. The sisters and I don't live close to each other, but we see each other as often as possible. When we talk, it feels so natural, just like we're continuing a conversation that we started when we were teen-agers.

When I neared home (a Starbucks in hand, also making me feel normal), I headed for my favorite farmstand, Breezy Acres, run by a wonderful woman named Evelyn, who greets you by name as soon as you come in the door, even if she's in the kitchen in the other room and she's seen you through the window. (She once talked me over the phone through making a blueberry pie, an adventure for a non-cook, but that's another story.) Anyway, on the way there, just a few blocks from Evelyn's, I saw my friend Mike with his adorable 2-year-old-daughter, Maeve, and I shouted through the window that I was coming over with snacks to enjoy their central air.

So I bought blueberry coffee cake and cookies - my latest favorite dinner-spoilers - and had a good visit with Mike, his wife, Ellen, and their baby, Mairead. We actually ended up outside on the deck, but it had cooled down enough that I didn't miss the air conditioning.

On Friday I had lunch with my tennis-friend/sisters, Deb, Donna and Debbie. (Yes, they all have "D" names. Kind of funny when we're taking a group lesson.) We were going to hit some tennis balls, but it was about 95 degrees out. I kind of wanted to do it anyway, but I didn't put up much of a protest when they wouldn't allow it. Debbie modeled her elegant mother-of-the-bride dress - her daughter's wedding is over Labor Day weekend - and tried on different necklaces. We all agreed on the "winner," a beautiful piece which I won't describe in case she wants it to be a surprise. It was an honor to be part of a decision-making committee. We had some laughs and a nice relaxing couple of hours.

Today my cousin Betsy and her husband Michael stopped by for lunch on their way from their apartment in Queens to a sojourn in the Berkshires. We don't see each other that much, but it's very fulfilling to keep the family connection going. Katie joined us and we shared funny stories about our dogs and caught up on family members' comings and goings. After I cleaned up, I went to see Deb, one of my neighborhood sister/friends, for coffee, Evelyn's blueberry bread and Deb's daughter Charlotte's lemon squares. The dogs played outside, giving each other a good workout. Back home, the kids went out and I had dinner European-style, around 9:30.

Sorry if I'm blathering about food. I'm so glad that the nausea and my fear of food have passed and I have a good appetite. And I'm glad that I'm getting out and about more.

One piece of bad news: "The Daily Show" and "The Colbert Report" are each taking three weeks off! How dare they? We need them to make fun of our crazy politicians and our whacky world.

Sunny days, cloudy days and how to clear the air

2009-08-18T12:58:00.000-07:00

Yesterday's quote of the day:

"It's always sunny here in CAT scan, even on a rainy day."

Spoken by a friendly technician when I was getting a scan to check on the status of the lung fungus that kept me hospitalized for two weeks several months ago.

I had been admiring the translucent photo on the ceiling above the scanner. You lie down and look up at a large back-lit photo of cherry blossom branches against blue sky and white clouds. I'd seen it before, but for some reason it really caught my eye yesterday. I told him it was so relaxing, I wanted to stay there for a while after the quick test.

I liked his response after I told him how much I liked the photo. I thought, wouldn't it be nice to always have a sunny mind, even during all the rain? Impossible, of course. But it is possible to achieve inner lightness in the face of dark episodes. Some of us just have to work at it more than others.

Today's New York Times had an interesting story by Natalie Angier headlined, "Brain is a Co-Conspirator in a Vicious Stress Loop." Angier reports on new research showing that "the sensation of being highly stressed can rewire the brain in ways that promote its sinister persistence."

If you read the story, beware: Portugese researchers did nasty things to rats to show that when over-stressed, they get stuck in a rut, doing the same thankless things rather than seeking new solutions. Then they gave the rats a "vacation," and they returned to their normal selves, able to innovate and, generally, chill out.

"The stress response," Angier writes, "is one of our oldest possessions. In most animals, a threat provokes the fight or flight response, which dissipates when the the threat disappears... In humans, though, the brain can think too much, extracting phantom threats from every staff meeting or high school dance ..." she writes.

The good news is that like the rats in the study, the human brain should be able to rewire itself when you take a vacation or practice other forms of healthy stress-relief that work for you. Bottom line: The new findings demonstrate a principle that many researchers have been studying: "The brain is a very resilient and plastic organ."

Yesterday's counts: Platelets 12, (still yuk but better than last week); hematocrit, 24 (quite low); white count, 5.9 (normal, yay!). Everything else looked fine.

Basically it meant another whole day at Dana-Farber, what with the CAT scan, a bag of platelets and two bags of blood, plus, while I was waiting for my "products" to arrive, a visit to 6A to say hello to nurses and to PJ, who looks and sounds great.

On the way home, Joe and I got pizza from a Papa Gino's at a Mass Turnpike rest stop. Eating it from a box on my lap, I enjoyed every bite of the two pieces and could have had some more.

We got home around 7:30. It's really hot here. After dark, when it had cooled down, Katie and I took Maddie for a walk. Then we came home, ate Klondike bars, and listened to songs and watched videos from Woodstock on Youtube.

Not a bright and sunny day, but not cloudy either.