Wednesday, December 30, 2009

From one week to two

My counts from Monday were so good that they're letting me skip a week, so I'll be going to Boston every other week instead of every week. Haven't done that in a long time. Naturally then I have to deal with "separation anxiety" and the fear that something could develop in two weeks, but I'll take it. It would be great to untether myself so that I could focus on other things.

My white blood count was 8.3. (Normal is 3.8-9.2.)

Hematocrit was 33.0 (Normal is 34.9-43.6). My "crit" has actually been climbing without help. This means I am finally making red blood cells, a fact supported by the growth in reticulocytes. That's all I know about "retics," a new word for me, but whatever, I'm happy about it!

Platelets were hanging out at 60. They took a big jump and for now they haven't moved much. (Normal is 155-410.) I hope they follow the reds and come close to normal too.

I am still struggling with the prednisone. My liver function is better, and it would be beneficial to keep me on the higher dose of 40 m.g. a day, but when I complained about my mood, my low energy and my weakened legs, they said I could try going down to 30.

Ann had a good post on chemo brain, which made me think again of a similar frustration that I expressed, as have many others. I know part of it is about aging or just personality, but I really think increased fogginess can be attributed to chemo brain. It's about not being able to wrap your mind around the right word, doing things more slowly, being more forgetful. It's frustrating.

Sometimes I joke with the kids that they're probably keeping tabs on me. And sometimes I wonder aloud after I've done something spacey, "You're not going to put me away now, are you?" Ha ha.

But actually it's not always that funny.

Friday, December 25, 2009

New and old friends brighten day

Maddie met a new friend, Theo, a Golden Retriever.

Theo wants to show who's boss.

Carolyn tries to get the dogs to focus.

Last night my kids were at their father's for a Christmas Eve sleepover into Christmas Day. After my first round of illness, we all did Hanukkah and Christmas here, but it didn't work out very long, so we went our separate ways again. Last year I was in the hospital, so that didn't count.

I knew I would miss the kids, so it was nice that my friend Korby invited me over for Christmas Eve. It was a little far, about 45 minutes, but I'm glad I went. I joined Korby and husband Pete and family and friends for a wonderful smorgasboard. (I'm still eating the dessert that she sent home with me.) The fire was warm and the company, mostly her relatives who feel like family, was very comfortable to spend time with.

When I got home, the house was dark and quiet. I went to sleep pretty soon after but woke up several times with this odd feeling: the house was quiet. It was as though it was not breathing. I tried to remember what was wrong, and then I realized it was that I was alone.

I guess I will deal with this again when Katie goes to college next year (waaaaaah, don't want to think about it) and the house will be strangely quiet for a long time. But anyway, I got up this morning ready to do something.

I put Maddie in the car and met Barry in Springfield at our friends Carolyn and Chip's house to meet their new Golden Retriever, Theo, who is about four months and an adorable bundle of fur. We ate bagels and drank coffee and playied "watch the dogs," a game similar to "watch the babies," where you just sit and move your eyes around trying to keep track of "the kids." Two of the Chipkins' three lovely daughters, Laura and Deb, were there and joined in the puppy focus group. A lot of people, including me, can do this for a long time.

Then Barry and I walked Maddie around the neighborhood's Forest Park. It has an annual event, Bright Nights, that routes traffic through 2.5 miles of the park decorated with lights arranged into shapes on a variety of themes. Part of it is Dr. Seuss characters, because the characters' creator, Theodor Geisel (aka Dr. Seuss), lived in the neighborhood.

It was interesting to walk under the unlit lights early in the afternoon. We let Maddie run around. She met two Springer Spaniels and we had an interesting discussion with the owner. Then we went back to say good-bye to Carolyn, Chip and Theo.

I headed home and did a few things. I was kind of waiting for the kids to get back. I wanted to cap the day with a traditional Jewish meal – Chinese food on Christmas – but I didn't know if they'd eaten. They came in a couple of hours later and yes, they did want Chinese food.

The house woke up. A couple of hours later, Joe ordered it and got it. We ate it while watching "A Christmas Story." Gotta love that movie.

We got it all in. Food, family, friends, Christian traditions, Jewish traditions. Wrapping paper still on the floor, presents and serving pieces still to put away, and candy and leftover desserts on countertops and tables. Makes it still look festive. I think everyone likes it like that...for a few days, anyway.

Wednesday, December 23, 2009


After I waited for about an hour in the clinic Monday, Melissa finally came into the exam room where I sat after progressing through the layers of the system. (Sit in waiting room. Get blood drawn. Back to waiting room. Get called into exam room. Wait in exam room.)

She stood at the door, a copy of my blood counts in her hand. "Well," she said, while my heart fluttered for a second. "These are GREAT counts."

My white count was 8.8, hematocrit 31.9, and platelets 61. Saved! (Saved from my imagination, but still, saved is saved.)

I had let the beach ball of my anxiety rise to the surface (Wendy Halpern's suggestion) and then I had tossed it to several of the many people who will put up with me. The "problem" was that my visit Monday was on Dec. 21st, the year anniversary of my relapse, and since I hadn't felt well last year and I didn't feel great this year on this particular date, I tied everything together.
(In other words I was worried that I would learn on Monday that I had relapsed.)

Some responses: "Don't DO that. Think about something else."
or "Ronni, this is negative magical thinking. It's not real. Stop doing that."
"It's just a day like any other day. You'll be fine."

So I was OK and I could move along. Big sigh of relief.

My liver function test was down slightly, but Melissa said to stay on the 40 mg. of prednisone anyway while it hopefully continues to improve. We talked about prednisone: She said it's an amazing drug that fixes many problems, but it creates problems in many areas too. So just as you can credit many improvements to the prednisone, you can blame many problems on it too.

For example, as the dose has risen, my legs have gotten weaker. I have been more tired, and also moodier. I can blame that all on the prednisone. Still, this week I've been able to be busier, and that has helped. For logistical reasons, we squeezed our Hanukkah party in last night, when it was no longer Hanukkah. You can't do that with the major holidays, but you can do it with Hanukkah, or at least we do, planning it around when the college "kids" come home and the working "kids" can get away.

Diane and David and their two children, Lily and Sam, came to our house last night from Newton for dinner, lighting of the candles and a present exchange. Joe is home for his winter break, and Ben managed to come for a few days. I, obviously, was already here with Katie.

They will laugh if they read this, because it is an understatement: I am not too well-organized. In addition, I am especially spaced-out these days. So, I'm lucky that Ben was around all day to push me faster through my errands, and that, after jockey practice, Joe stepped in to help make the dinner and hors d'oeuvres (which featured Kosher pigs-in-blankets).

Everyone, including of course Diane, stepped up in some way. It was a genuine family affair, and everyone seemed to have a good time.

Diane and I had to laugh about the way we set the table in our own heads. When we were growing up, it was always "Us four and ...." meaning our mother, father and us two sisters as the basic unit, adding on however many guests were coming.

Now as Diane parsed it out, it was "Us four and..." meaning her and David, Lily and Sam, plus the others, such as my three kids and me. I pointed it out as she said it aloud. To me, it's a different "Us four," meaning Ben, Joe, Katie and me, and then the others.

The building blocks are the same, just arranged differently. I'm glad that I'm still in the mix.

Sunday, December 20, 2009

Whine time

It hasn't been a very good week. I've felt sick on and off, with low energy, nausea, vomiting and stomach pain. At least the headache went away.

Melissa returned a call one day when I was still in bed at 1:15 p.m. I had no idea. She said to get up and at least drink something. Most days I haven't gotten up that late – usually around 10:30. When I get up, I take two Maalox and wait to feel better. Usually it works.

I was at Deb's the other day and she said to give in, chill out, lie on the couch. I've written about this before, and so have other people. I don't want to lie down. It makes it seem like I'm sick. So I didn't follow her advice. Instead, I played indoor tennis with my friend Joe. Most of the time I did get the ball over, but I popped a lot of shots into the air on my side. I felt pretty bad and apologized. I asked if I could have another chance, and he said of course and pointed out that I had just gotten out of the hospital. I bought him a coffee and we shared a cookie, and I felt better, but still kind of embarrassed.

It was freezing all week. The next day, the heat konked out in the kitchen and my bedroom. Those two rooms are in different zones – the addition we built when Katie was born. This has happened before. I like it cool in the house, but this was really cold. A called our local heating company, and for some reason the man who came over was totally flummoxed. From upstairs I heard cursing, banging and clanging. He said we needed a part that he just happened to have. When he went to install it, he ripped a piece off. More cursing. He said he couldn't stand it anymore and called his boss. The boss came over and fixed it. This took hours of turning the thermostat on and off.

Yesterday I needed to do a little shopping. Once again I wasn't quite up to it, but I did it anyway. I took Maddie, who is not a city dog. She went crazy, pulling every which way. It wasn't fun for either of us. Before I finished I put her in the car. When I came home, I fell asleep on the couch, the phone in my hand.

It's 2:30 and I'm going to walk the dog, even though I don't feel like it. I think it's a little warmer now.

Also I think all week I've been trying to prove something. I may have the lingering effects of the virus, but I am not sick.

I was sick a year ago today, and now I'm doing that pernicious thing, sick=relapse. Most of us are suspicious about bad anniversaries and optimistic about good ones, when in fact, it's just a day. Dec. 21st (tomorrow) will be one year since I relapsed. It was snowy weather like this when Joe drove me to Diane's, who took me to the emergency room. On the drive over, I kept saying, "I'm not going to see my grandchildren." I was admitted to the hospital, where I stayed for three and a half months.

Joe is home from college now, which is great. He's going to drive me to Dana-Farber for my check-up tomorrow. We'll listen to sports talk on the radio, just like we did when he drove me in the summer. I hope that will be a good enough distraction.

P.S. I am enabling a "comment moderation" feature because I have getting a lot of spammers. I am sorry if this is a pain for most readers, who are not spammers. As for the others: GO AWAY! I am only going to delete your comment anyway.

Wednesday, December 16, 2009

Some highs, good; other highs, bad

After getting home Saturday, I turned around and went back to the clinic Monday. Dr. Alyea said he was very pleased with my counts: White, 12.5; hematocrit, 29.5; and platelets, 64.

The white was actually higher than normal. I asked about that, and he said it was probably a sign that I was still fighting a virus.

So again I was able to leave without a transfusion. That was good news.

But I left a little bummed out because my liver function number, which was slightly lower the past week, had actually doubled this week. I had already increased the prednisone from 10 to 20 mg. a day when that number had been too high a few weeks ago; now I will double it to 40 mg. a day. I hope it is better next week. Diane said maybe it was high because I missed a few doses during that crazy week at her house when we couldn't get ahold of all of my drugs, one of them being prednisone. (Once I got into the hospital I got all of my drugs.)

When I talked again about the hospital week with Meryl, she said, "You had a virus just like everyone else. You're so normal!"

Interesting way to think of it.

I had left Maddie at Jane and Jim's house so I could have a weekend where I didn't have to stay up late and get up early to walk the dog – their idea. What good friends. They said she totally fits into their routine with their two other dogs, Blue and Shelby. Blue sleeps in their room, but he has a big crate downstairs. When they start getting ready for bed, Maddie runs into Blue's crate and settles down for the night.

Their hours are kind of the opposite of mine. They get up at 4 a.m. and go to bed at 8 p.m. When I came to get Maddie, she looked back and forth between Jane and me, like she couldn't make up her mind. I felt bad, like I was stealing her away. I also wondered if she was going to be on different hours, but she was fine, staying up until around 11 p.m. and sometimes sleeping or just hanging out until 10.

Good dog.

Friday, December 11, 2009

Testing, testing, 1, 2, 3, 4, 5

The last thing Melissa said before leaving on vacation on last week was, "Let's hope it's a quiet week."

Ha. I spent part of the week in a bed at Diane's head either sleeping or holding my aching head, part in the emergency room and part in the hospital.

Monday my platelets were high for me - 36 - but my hematocrit was 19.2. (Normal starts at approximately 35.) I had skipped getting blood the week before because although I was low, I felt fine. So a week later I needed three bags of blood. It took until 7:45 and I went to Diane's because it was too late to drive home.

Next day I woke up – if you could call it that – with the worst headache I can remember. I also threw up every half hour or so. Mostly I slept, unable to lift my head. I called Dr. Alyea and he said to go to the emergency room for tests. They gave me some strong pain and nausea medicine and administered an MRI, a CAT scan of my head and a lumbar puncture. Ouch.
Preliminary results were normal, so I went back to Diane's.

Next day, same thing. This time Dr. Alyea said I should be admitted into the hospital. So I did. I had another MRI at around 5 in the morning. I had two sets of neurologists come in and ask me to touch my index finger to theirs and then to my nose, then to follow their finger while they moved it back in forth in front of me. Then more tests: months of the year backwards, etc.

Several other teams examined me. Chin to neck. Good, no meningitis.

On Thursday, they said they couldn't fine anything and I could go. It was probably a virus or a drug reaction. I will find out more when I return on Monday.

Well, they are certainly thorough. I stayed at Diane's one more night because it had gotten late. Katie, who was in Brookline visiting her cousin, drove me home. Now I am just feeling kind of beaten up. I am, in fact, falling asleep sitting here. So I am going to take my book and go to bed.

Saturday, December 5, 2009

Riding in cars, walking in snow

"I wanted to go for a ride, but I'm worried now because
Katie went in that door and hasn't come out."

We got up early today to get Katie to the SATs by 7:45 a.m., not early for some but the crack of dawn for others. I promised I would make breakfast and be ready on time. Not always known for my punctuality, and recently known for sleeping through my alarm, I was under extra pressure. It didn't help that I stayed up late again. The destination was Amherst Regional High School, around 15 or 20 minutes away.

I did, in fact, sleep through my alarm, which is set to NPR. I never even heard the people talking, and they were talking LOUD. I have tried obnoxious AM radio, and that is no better. I think the answer is to get more sleep, but anyway....

Katie woke me up and asked if I could still make breakfast. Yes indeedy. I got myself downstairs, stiff legs and all, made and served the scrambled eggs, toast and fruit, jumped in the car with Katie, got there around 7:42...and waited in the parking lot until the doors opened around 8.

Katie asked me to return around noon. They said the test would end between 12:30 and 1 p.m., but you never knew if it might be early. So I went back home, crawled into bed and slept until 10:30.

When I went to the door to leave, Maddie and I had a staring war. I told her she was staying home, but we'd go for a walk later. She stared back. I hesitated and studied her face. So-called conversation:

Dog: Just take me now and I'll ride in the car.
Me: No, it will be easier if I get you later.
Dog: I want to go now. It's better than sitting around the house.
Me: OK, OK, let's go.

I grabbed the leash and she happily hopped in the back seat.

Nearing town a little after noon, I thought I might get bagels at our favorite local spot, Bruegger's Bagels. Internal conversation:

Me: I think I'll just get the bagels first because she'll never be ready at noon.
Me: Yes but she asked you to be there around noon and she thinks you're always late. You should try your hardest to be on time.
Me: OK, I'll get the bagels later.

We got to the parking lot, pulled up in front, and waited about 45 minutes. Maddie looked anxiously out each window, whined a little and then curled up and went asleep. I read our latest book club book, "Olive Kitteridge," by Elizabeth Strout.

When Katie finally came out, she said the test had started an hour late, hence the late exit time. She wondered why Maddie was in the car, and I told her about the staring contest. Now Katie stared at me as though I am some crazy dog lady. "Maybe she was looking at you because she just didn't want to be left," Katie said. "No, I'm sure she was telling me she wanted to go for a ride," I said.

We circled around for the bagels and for a sandwich for Katie and finally headed home. It had gotten pretty cold and dark, even though it was only about 3. I felt like I owed the dog a walk, and that I needed to take one too. I haven't felt that well for most of the week. I have a stomach ache that comes and goes, and I am dragging. These are combining to keep me in a funk. I feel that if I keep taking walks, as opposed to lying on the couch, I will feel a little better.

So I headed off. Maddie dashed through the woods. I pushed myself. It was kind of snowing, but not pretty white flakes. They were thin little flakes, and when they landed they slapped me on the face and formed puddles on the ground. I kept on going, but I wasn't having any fun, plus my stomach hurt and my breath was short. I thought my symptoms were either due to A: a reaction to doubling up on the Prograf and Prednisone; B: I probably need blood and will feel better after I get some on Monday; or, C (crazy mode): My liver is about to explode or shut down.

Once you've started around the lake, you can't call for help, because there is no automobile access to the mile-long path.

I wondered if I should have Katie pick me up at the parking lot near the gym. This at least cuts off the walk home (it's between one-quarter mile and one-half mile.) Macho me said, "You haven't called for a ride in ages, and you don't need to start doing it now. You always walk home. It's just a little farther. Just go." Reasonable me thought about a comment on my blog saying I don't need to prove anything, and that if I'm tired I should act accordingly rather than push it.

So I called. The dog seemed happy to stop, jumping up on the drivers' side door. I felt pretty happy too. We stopped to get ginger ale and then went home. I had a sandwich and the ginger ale, finished this morning's New York Times, and was glad to be sitting inside. The stomach ache went away. I was still tired, but not tired enough to rest on the couch.

Tuesday, December 1, 2009

Some downs, some ups

Yesterday when I got my blood drawn at the clinic, the nurse asked if I thought I needed any "products." I said no. I've been feeling fine the past week and even managed a few short walk-runs (and I mean short). My legs felt a little more bouncy.

So I was unpleasantly surprised when Melissa said my hematocrit was 22 and I needed blood. My platelets – up to 33 last week – were back down to 20, but I could get away without a transfusion. Dr. Alyea came in and said that since I felt fine and looked good, I could get away without a blood transfusion too.

In the "if it's not one thing it's another" department, they said my liver function numbers had been increasingly higher the past several weeks. I don't know anything about liver function, but it turns out that higher numbers are not good. Dr. Alyea said it was probably a sign of more graft-versus host, and he increased my dose of prednisone from 10 mg. a day to 20. I had already been taking 20 and then had cut back to 10. I am also increasing the Prograf, in hopes that the higher dose will help me be able to decrease the prednisone soon. Sorry if this is confusing. I have just been looking at my pill boxes and finding it a little confusing too.

Imagine puffy cheeks here. Actually, puffier, because I already have a bit of that chipmunk look.

He said he thought that maybe the liver problem was contributing to the lower counts, and that he was "very optimistic" that this would all work itself out. He also gave me a little talk about falling asleep at the wheel, having learned about my mishap on the way home from Philadelphia when I fell asleep, ran up on the curb and got two flats.

It would be terrible if I hurt myself, and super-terrible if I hurt someone else, he said. Bottom line: stay well-rested.

I wasn't well-rested that day. I knew I had to get up early (OK, 6:30 isn't early for most people, but it is for me), and I vowed to get in bed by 10 or even 11 on Sunday night. But I get that second wave of energy and I keep doing things. Our friends Jim and Jane are looking for a small rescue dog, and they don't have a computer. So Sunday night I went "off task" and looked at to help them find one. Jane told me they were fine just reading ads and checking through word of mouth. But I did it anyway. WHY? No good reason. Then all of a sudden I'm moving laundry, finishing the morning's forgotten paper...and doing who-knows-what...and before I know it, it's 12:30 a.m.

When the alarm went off in the morning, I could hardly move. I called Meryl and she did the one, two, three....get UP! with me.

Anyway, on the way home I was going to take a nap at Diane's, but I had had a quick lunch with Margaret, and then gone back into the clinic to talk to a financial aid advisor about problems with my insurance. It was raining and already getting dark around 3 p.m., so I thought I'd just push on through. After about 15 minutes I realized I couldn't do it, so when I pulled into the Starbucks parking lot in Waban, I pushed my seat back and promptly konked out. After a power nap of about 20 minutes, I was fine. I went in and got my strong coffee and headed home with no problem.

When I stopped at a store near home to do some quick shopping, I ran into an acquaintance who asked how I was doing. I told him that overall, things looked good. He smiled at that. Then he said, "Well, at our age we're all pretty much looking at the end." He's a little older than I am, but still, I don't consider any of us baby boomers as being close to the end. And this guy looks great. Love that sense of humor.

In the car, I called Ben for some other reasons and ended up talking about the appointment. I told him Dr. Alyea had said he was "very optimistic," and that although that sounded pretty good to me, I wanted certainty.

Ben said Alyea's words were terrific and the best anyone could want. "You can't say anything better than that," he said. "I'm looking at my clock and it says 5:51. I am very optimistic that it will soon say 5:52. But can I guarantee it? No. Nobody can guarantee what will happen next. So forget about it!"

Back home, I made dinner and then tried hard to eliminate unnecessary projects. I did a little better than the night before, getting to bed before midnight. I guess every little step helps.

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.

Saturday, October 31, 2009

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.

Thursday, October 29, 2009

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.

Sunday, October 25, 2009

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.

Wednesday, October 21, 2009


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.

Sunday, October 18, 2009

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.

Wednesday, October 14, 2009

Moving forward, moving backward

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.

Friday, October 9, 2009

Too weak or too strong?

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.

Wednesday, October 7, 2009

Resistance...or not

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!

Monday, October 5, 2009

Transfusion-free day #2

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.

Thursday, October 1, 2009

Should I call?

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.

Wednesday, September 30, 2009


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

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

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

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

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

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

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

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

Saturday, September 26, 2009

Acorns fall, tennis balls fly

It's raining acorns here in New England.

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

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

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

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

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

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

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

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

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