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.