Saturday, November 28, 2009

A spectator and a finisher at Talking Turkey Race

Ben, wearing a sweatshirt he bought at Joe's school,
after finishing the 31st annual Talking Turkey Race
in Holyoke today.

This morning I put on my running clothes and headed to Holyoke (Mass.) for the 31st annual Talking Turkey Race, held at the beautiful Ashley Reservoir.

Normally I would be running myself, but today I went with Katie as spectators. We were there to cheer on Ben in his second big race. I felt so proud to see him run and finish. He hadn't run in two weeks, but he looked good, finishing in 1:03 and vowing, like a true runner, to train more and do better next year. I said I'd run it with him.

Regarded as one of the region's elite races, it attracted 1,281 runners on a sunny and windy day. Along with the St. Pat's race in March, it's a staple of the local running scene, and I ran it many times. My parents, who came from New York every year for Thanksgiving, went with me to Holyoke for the race. I was never super-fast, but I did well enough. In 2001, I ran it in 51:32. I can still hear them cheering at the finish line.

I missed 2003, the year I was first treated for leukemia, but came back in 2004 – my first post-cancer race, when I finished in 1:02. The next two years I did better each time, but then I had to stop again when I relapsed.

My legs are just beginning to feel better. I fooled around a little at the race today when all the runners had passed by, and my legs felt like they had a little more bounce in them.

I really wanted to be back with the pack, but it was great watching Ben and a bunch of my friends finish, including Bob, Stuart and Laura Chipkin, Walter Hamilton, Joanne Instrum, Mary Kate Sullivan and Jen Hylemon.

Congratulations to everyone!

I hope to join you next year.

Monday, November 23, 2009

Down and up and the meaning of 'the'

Donna leant me a book, "Breakfast with Buddha," by Roland Merullo, that I am taking back and forth with me to the clinic. It's about Otto, an editor of food books, living in comfort with his wife and two children. Everything is good for him in the suburbs of New York, but he is nagged by a feeling that something is not right.

His sister tricks him into driving her guru to their family farm in North Dakota, and although Otto is annoyed at first and doubts that the Mongolian monk is the real thing, he begins to believe in the guru, and in his lessons about life.

The book had a role in last week's visit, which I didn't write about. My hematocrit was 20 – about the lowest in recent memory – and I needed two bags of blood. (I didn't need platelets, which were 21.) I read the book while I was getting the blood. When my nurse, Kerry, was disconnecting the IV at the end of the transfusion, a tiny bit of blood dropped on a page (sorry, Donna). Only half-joking, I said, "Let's see what word it fell on. It might be a sign."

It had fallen on the word "the."

I can't explain it, but it felt like a Zen moment. I laughed, the nurse laughed, and I went to get my car, a small smile still on my face.

I didn't get to read much of the book today, but I had a large smile on my face when I left. My numbers were great for me, and I didn't need anything. Platelets were 33 (up on their own from 21) and hematocrit was 26.7 (up from 20 with a transfusion). White count was normal, 6.7.

In Dana-Farber time, I didn't have to stay long. I was soon back on the Pike, and I even got home in the daylight.

Thursday, November 19, 2009

Fun in Philly, misadventure on the road

The wedding in Philadelphia over the weekend was great, but getting there and back was not so hot.

I was scheduled to fly Friday at 1:25 p.m. so that I could meet up in Philly with Emily and take a cab to the hotel in downtown Philadelphia or possibly go straight to the rehearsal dinner held at an old bicycle manufacturing factory-turned-art gallery in a borderline area of downtown where artists are moving in.

On my way to the airport, Emily called to say that my flight was canceled due to bad weather in Philly. I could either take the 5 p.m. flight, in which case I would miss the dinner but get there in plenty of time for the next day's wedding, or I could drive – between 5 and 6 hours. I was so psyched to get there, I decided to drive, even though it was raining on and off. I talked to Ben about stopping in Trenton, N.J., where he is an editor and writer at The Trentonian, a daily newspaper. The paper is on the way, and we decided I would come by and he would look up directions to the reception.

The drive down was fine. Different things kept me entertained. One of them was the traffic report. Out here in Springfield, Mass., I laugh at the traffic report; we have about three big buildings and about five main roads. They make a big deal about announcing the traffic, which takes probably less than two minutes. Coming from New York, I know what a traffic report should sound like, and as I approached the George Washington Bridge and got onto the New Jersey Turnpike, I listened to it over and over. It is a work of art, tying together arteries and exits and bridges and tunnels and all the roadways. The announcer does it at a fast clip. It could be come kind of song.

The stop at the Trention was wonderful. Ben took me around and introduced me to his co-workers and showed me his desk. I was one proud mom. I also felt like diving in and working; it made me realize how much I miss newspapers.

We printed out directions to the gallery and I was off. By this time it was dark. Either I missed a turn or the directions were bad, because I soon found myself in a very seedy part of the city. I went into a deli where the two customers and the guy behind the desk looked at me with curiosity, as if saying, "Why are you here?"

They gave me directions which got me lost again. A police car's siren blared, and the streets were mostly empty. I pulled over and got directions from the nicest-looking group of (apparent) drug dealers I could find. These directions got me even more lost. I ended up at the top of a deserted street and decided to give in and call Emily. But I couldn't find my phone. So this is how it ends, I thought. Finally I found the phone. Emily passed it to Tami, who gave it to Heath, the father of the groom, who calmly talked me out of the neighborhood. When I finally found the place, I hugged him.

The next day Emily, Nancy and I walked around a little, exercised, and found a great place for brunch. Philadelphia is really a wonderful place. Made me have that "I need to live in a city"
vibe. Onwards to the wedding: The bride, Sarah, was beautiful, and she and her new husband, Walker, looked very happy. Tami was gorgeous too, and beamed through the whole evening. Sarah was our high school group's "first baby," making it even more special.

I headed out the next day after brunch. I was tired, and the drive was much more difficult. While it was still daylight, I pulled over and took a nap. I stopped once for coffee and a take-out sandwich, but I felt like I was fighting fatigue the whole time. It was dark when I got off the highway, and when I was just about 15 minutes from home, I must have let up my guard. I fell asleep and ran over a curb. Bump bump bump. That woke me up. I had two flat tires and one wrecked rim. It shook me up, but of course the good news is that I didn't hit anyone, I didn't hurt myself and I didn't damage any property except the car.

A tow truck brought me and the car to the shop and then brought me home. I needed two new tires and a new rim.

In hindsight, I guess you'd say I should have flown. But I was anxious to get there, and I didn't want to miss anything, so I just kept on going.

It was good to be on the road.

Friday, November 13, 2009

No transfusions for second week in a row

On Monday I got my blood drawn in "Danny's Room." This is a small room down the hall from the major infusion room. It can fit two patients, or sometimes three, and is presided over by a cool nurse named (duh) Danny. He works with another nurse, or, sometimes, two others. I was never really sure why Danny got his own room, but in any case, it's usually fun going in there.

Danny wears an earring and sports an irreverent attitude. He is also incredibly sweet. He usually has something funny to say, and Monday was no exception. Danny was drawing blood from a young man who had a Hickman catheter. The patient didn't look too happy. He was very thin, his eyes were half-closed, and his head hung down. I was in the opposite chair, being drawn by another friendly nurse whose name I don't remember.

The other patient held one of the tubes for a minute as it filled with blood, and he said, "Wow, it's really warm." Danny replied, "That's good, because if it was cold, you wouldn't be telling me about it."

The patient started to laugh. Then he laughed harder, not loud guffaws, but very quiet little bursts. It was contagious. My nurse started to laugh, and then I joined in. "I hope mine is warm too," I said. "I'll bet you a million bucks it will be," Danny said.

For a moment, we all sat there laughing.

I think the other patient and I were refreshed, ready to face the rest of the day. It's great to have nurses – and there are plenty of them – who make you laugh. It's probably good for them, because if they don't lighten up, it must be extra hard to work all day around some serious stuff – and it's definitely good for the patients. It's as though they've been given permission to not take themselves so seriously.

I got out of there for the second week in a row without a transfusion. My counts were actually about the same as last week. Platelets were just about the same, whites were up, and hematocrit was actually down, from 28 to 25. , but they would rather skip the transfusion if they can, so off I went.

Diane brought tuna sandwiches which we ate together. It was nice visiting, plus the homemade sandwich gave me a chance to avoid the egg salad lady. I was going to follow PJ's lead and make my own sandwich, but I was running late as usual and didn't have time.

It was early, about 4 p.m., when I got on the road, but for some reason I was incredibly tired and started getting that urge to close my eyes as I drove towards the turnpike on Route 9. I had planned to stop at a Starbucks on my way to the highway, which I did, but first I pulled into a spot and konked out for about half an hour. Then I got my coffee and I was fine for the rest of the way home.

I dashed into the supermarket and picked up Maddie at doggie daycare, aka Jim and Jane's house. She runs around in the backyard most of the day with their big dog Blue, who, according to Jim and Jane, likes the exercise. Then she makes herself at home and gets on the bed with Jim, who works part time. She takes a nap with him, her head on his shoulder.

Sorry this post is late. I've been pretty busy all week. Last night my book club met here, and it took a while to pull it all together with making the living room presentable (getting Katie to help me move all the stuff that gathers there) and then buying cheese and crackers, fruit, cookies, etc. We discussed Anita Diamant's "Day After Night," a novel about four women, refugees from Europe in World War II, who are imprisoned by the British in then-Palestine in an internment camp called Atlit for illegal immigrants.

It's based on fact, so we had an interesting discussion about a piece of history most of us hadn't known about. Next up is Olive Kitteridge by Elizabeth Strout.

Well I have to go pack for a flight to Philadelphia for Tami's daughter Sarah's wedding. Dr. Alyea gave permission for me to go as long as I wear a mask on the plane. Tami is among the "sisters" I've known since high school. Emily, another "bff" from Friends, is flying from Pittsburgh and connecting with me in Philly. She is worried that I will miss the plane. She gave me a wake-up call this morning and I was already up. Ha. I really need someone here telling me not to procrastinate by doing such things as writing on the computer. So I guess I better sign off. I'm going to catch that plane!

Sunday, November 8, 2009

Bad dog, silly me

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.

Wednesday, November 4, 2009

Clinic: The good and the annoying

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.