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.

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 Diamond'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!

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.

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.

The creature, unmasked

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

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

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.