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.

Torture

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

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.