Sunday, August 30, 2009

My connection to Ted Kennedy, and other thoughts

Many people are talking about their connection to Ted Kennedy.

Here's mine. Well, it's not exactly mine. It's my mother's, but it has become part of the family lore and therefore feels like my connection.

I was at Brigham and Women's Hospital in Boston in 2003, during my first round of treatment for leukemia. It was early fall, around the time of my stem cell transplant (Sept. 18).

My mother came up to my room, all smiles. "I just bumped into Ted Kennedy!" she said. He had apparently been visiting someone at the hospital and was going out as she was coming in. She stopped him in the lobby. My mother asked if she could shake his hand, and he said, of course, yes.

The Democrats were in disarray, doing a lot of soul-searching after their losses in the 2002 midterm elections.

Mom said to the Senator: "I love you very much. But can't you tell those Democrats to get their act together?"

Kennedy chuckled.

"I'm trying, I'm trying," he said.

I got a chuckle out of it too.

Meanwhile, here are some observations based on things that happened to me in the past few days:

Ways not to unpack a bag after vacation: Pull clothing out of overstuffed bag one piece at a time. Move bag from one side of the room to the other so as not to trip on it. Take remaining clothing out of bag and put it on the floor, hoping that it will fly into your dresser drawers when you are sleeping. Realize that actually putting everything away is less painful and probably quicker than what you're doing. Procrastinate a little more.

How not to fill out forms and gather documents: Put it off until late in the day. Start printing papers and answering questions when you are bleary-eyed. Print two copies of one thing and none of another. Attempt a remedy, then get confused about which pile is which. Accidently delete something and reach for hard copy. Search for hard copy for more than an hour. In an instant, realize that it is two chairs down from you, in pile #2 rather than pile #1, which is in chair next to you.

How to quickly subvert a resolution: Start the day by vowing to cut down on sugar. Immediately add brown sugar to your oatmeal and follow with coffee cake.

How to get rich quick: Realize your wallet has $1 in it when you are just back from a vacation in which the twenties seem to have flown out the window. Son having left for college earlier that morning, check the top of his dresser for change. Find it scattered there. (Never look in drawers, only surfaces.) Pick out bunch of quarters and remember to return for small change. Go into bedroom sporadically occupied by older son. Jackpot! Help self to quarters strewn on dresser. Remember to return for small change if the going gets tough.

How to lose track of your limitations: Having lost the taste for coffee and then happily regained it, go about regular routine of taking coffee cup around with you all morning. Feeling like a big shot, go up stairs carrying laptop in one hand and coffee cup in the other. Lose balance and start to fall backwards. Make correction leaning forwards, stumble and almost splash coffee on stairs. Luckily, make it upstairs without big spill, vowing not to try that again for a while.

How to eat dinner alone and at a crazy hour: Do who-knows-what all day and go to store around 6 p.m. for missing ingredients needed to make lasagna that you vowed to make last night but never did. Start cooking around 7. Figure daughter will have to wait for dinner after returning from concert, but figure it's better than nothing. Stand there when daughter comes home with friend and says she's just grabbing some stuff and heading to another friend's house for a sleep-over. Look shocked, then realize she already told you she might do this. Eat while reading a book, at table still strewn with papers from above-mentioned project, around 9:30.

Realize that, after a period when you had to force food down, you are thankful you have an appetite for the lasagna, it turned out well, and there are leftovers to share with daughter tomorrow.

Saturday, August 29, 2009

Cape Cod mini-vacation

Wheeeeeee! Vacation is fun!!!!!!

The harbor in Wellfleet. We walked along a path that you
can't see in the photo.

We had three great days on our mini-vacation to Cape Cod.
Blue skies and warm sun greeted us in Wellfleet and stayed with us during our stay. A rainy front was kind enough to wait until we got home, where it is now pouring. We walked on the beach, skipped stones, swam at the bay, ate ice cream and had dinner outside at The Beachcomber, a waterfront restaurant and one of our favorite places. (Melissa, my nurse practitioner, had given me permission to order fish and chips because we could assume it would be cooked at high heat.)

Ben, Katie and Joe outside The Beachcomber.

We also had time to hang around and read the newspaper and make some headway in our books. I followed through on my assignment to eat salty snacks and drink liquids with salt in them, in hopes of raising my sodium level. Thursday I got my blood checked at a lab on the Cape, and the results on Friday showed my levels had improved. I guess that means I have to keep eating potato chips.

Katie and me at one of our favorite bay beaches, South Sunken
Meadow in Eastham, one town west of Wellfleet.

On the way home, we listened to the WEEI/NESN Jimmy Fund Radio-Telethon, a fundraiser for the Dana-Farber Cancer Institute. It was great to hear my doctor, Edwin P. Alyea, along with a patient who like me had more than one transplant. We were listening to interviews with survivors and family members when I heard a man speaking and said to myself, "Hmmmm, that sounds like Dr. Alyea." (I hadn't heard them introduce him or the patient.) My ears really perked up when host Glen Ordway said in response to something the patient said, "Well, Ted, what do you think of that?" Dr. Alyea sounded terrific.

Now, alas, we must do laundry and get ready for school. Joe leaves Sunday for Bates. This will be hard for me, but the time has come. Katie starts her senior year of high school on Tuesday. Yikes. Thank goodness for Maddie.

Monday, August 24, 2009

They say it's my (regular) birthday

Top, birthday girl, today with my sister, Diane, and
at my party around age 7.

In transplant land, there are two ways to look at birthdays. One is the date on which you are born. Your regular birthday? The other, of course, is the date of transplant, marking the day when you receive your stem cells and get the chance for a new life.

Well, today is my regular birthday. I guess I can just say it's my birthday and most people get the idea. I've since had four other birthdays, the last on Jan. 31, about seven months ago. (In transplant lingo, that's seven months out.)

I celebrated with platelets and cake. It was a good day spent mostly in my favorite haunt, the Dana-Farber clinic. Joe drove me to Diane's, where she made a great variation on a Nicoise salad that I was happy to be able to eat. She then drove me to the clinic. I needed platelets (they were 12) but not red blood cells (hematocrit was 29). White count was normal at 6.3. I thought it would be a short day. Turns out that now my sodium is low, which sometimes happens post-transplant. I got an infusion of saline solution, and so by the time I got out of there it was after 5. Oh well, that's actually a pretty short day, since I didn't arrive until 1.

My instructions are to eat salty snacks and drink beverages other than water, which I was guzzling in the heat. Lemonade and Gatorade are two good ones. I usually have to water those down because they're so sweet, but I guess I should go a little closer to full-strength. Melissa said changes in intake will probably fix it, but I need to get my blood tested in a couple of days to make sure.

While I was getting my platelets, the nurses came over with a cake and a bottle of sparkling grape juice and sang Happy Birthday. That was very sweet.

Diane drove me home and dinner was almost ready, courtesy of Joe, who was making linguine with chicken, broccoli and carrots. Yum. Then we all had chocolate cake and vanilla ice cream. Katie and Joe dimmed the lights, brought the cake over and the three of them sang happy birthday, Katie surprising us with a lovely harmony at the end.

Tomorrow we head for Cape Cod, where we will meet Ben for three nights in Wellfleet. I'm looking forward to it.

I guess I forgot to say how old I am. Oh well, it's my birthday and I can do what I want to.

Home with Joe and Katie and the cake, and below, earlier
today getting platelets at the clinic, where Kerri and other
nurses have just sung Happy Birthday and delivered cake
and sparkling grape juice.

Saturday, August 22, 2009

Out to lunch

Out to lunch with Tami.

I've been busy having lunch this week.
And tea and crumpets. Or rather, coffee and pastries.

On Wednesday, I met Tami, one of my friend/sisters from high school. It's part of our summer routine when she spends two weeks at her family lake house in Connecticut.

I feel very normal when I get in the car to go anyplace other than Dana-Farber, even if it's just a little bit out of my "zone."

Tami lives outside Philadelphia, and we used to take turns going to each other's houses over the summer when she's closer in Connecticut, about a two-and-a-half-hour drive. Then we decided to meet somewhere in between. On one of the sweltering days that we've been having, we sat outside a restaurant at an outdoor shopping mall. She got a sandwich and brought it out; I ate a sandwich that I brought along. It would have been nice to sit inside in the air-conditioning, but I'm still being careful about germs and I don't think I should go in.

As usual, it was great getting together. The sisters and I don't live close to each other, but we see each other as often as possible. When we talk, it feels so natural, just like we're continuing a conversation that we started when we were teen-agers.

When I neared home (a Starbucks in hand, also making me feel normal), I headed for my favorite farmstand, Breezy Acres, run by a wonderful woman named Evelyn, who greets you by name as soon as you come in the door, even if she's in the kitchen in the other room and she's seen you through the window. (She once talked me over the phone through making a blueberry pie, an adventure for a non-cook, but that's another story.) Anyway, on the way there, just a few blocks from Evelyn's, I saw my friend Mike with his adorable 2-year-old-daughter, Maeve, and I shouted through the window that I was coming over with snacks to enjoy their central air.

So I bought blueberry coffee cake and cookies - my latest favorite dinner-spoilers - and had a good visit with Mike, his wife, Ellen, and their baby, Mairead. We actually ended up outside on the deck, but it had cooled down enough that I didn't miss the air conditioning.

On Friday I had lunch with my tennis-friend/sisters, Deb, Donna and Debbie. (Yes, they all have "D" names. Kind of funny when we're taking a group lesson.) We were going to hit some tennis balls, but it was about 95 degrees out. I kind of wanted to do it anyway, but I didn't put up much of a protest when they wouldn't allow it. Debbie modeled her elegant mother-of-the-bride dress - her daughter's wedding is over Labor Day weekend - and tried on different necklaces. We all agreed on the "winner," a beautiful piece which I won't describe in case she wants it to be a surprise. It was an honor to be part of a decision-making committee. We had some laughs and a nice relaxing couple of hours.

Today my cousin Betsy and her husband Michael stopped by for lunch on their way from their apartment in Queens to a sojourn in the Berkshires. We don't see each other that much, but it's very fulfilling to keep the family connection going. Katie joined us and we shared funny stories about our dogs and caught up on family members' comings and goings. After I cleaned up, I went to see Deb, one of my neighborhood sister/friends, for coffee, Evelyn's blueberry bread and Deb's daughter Charlotte's lemon squares. The dogs played outside, giving each other a good workout. Back home, the kids went out and I had dinner European-style, around 9:30.

Sorry if I'm blathering about food. I'm so glad that the nausea and my fear of food have passed and I have a good appetite. And I'm glad that I'm getting out and about more.

One piece of bad news: "The Daily Show" and "The Colbert Report" are each taking three weeks off! How dare they? We need them to make fun of our crazy politicians and our whacky world.

Tuesday, August 18, 2009

Sunny days, cloudy days and how to clear the air

Yesterday's quote of the day:

"It's always sunny here in CAT scan, even on a rainy day."

Spoken by a friendly technician when I was getting a scan to check on the status of the lung fungus that kept me hospitalized for two weeks several months ago.

I had been admiring the translucent photo on the ceiling above the scanner. You lie down and look up at a large back-lit photo of cherry blossom branches against blue sky and white clouds. I'd seen it before, but for some reason it really caught my eye yesterday. I told him it was so relaxing, I wanted to stay there for a while after the quick test.

I liked his response after I told him how much I liked the photo. I thought, wouldn't it be nice to always have a sunny mind, even during all the rain? Impossible, of course. But it is possible to achieve inner lightness in the face of dark episodes. Some of us just have to work at it more than others.

Today's New York Times had an interesting story by Natalie Angier headlined, "Brain is a Co-Conspirator in a Vicious Stress Loop." Angier reports on new research showing that "the sensation of being highly stressed can rewire the brain in ways that promote its sinister persistence."

If you read the story, beware: Portugese researchers did nasty things to rats to show that when over-stressed, they get stuck in a rut, doing the same thankless things rather than seeking new solutions. Then they gave the rats a "vacation," and they returned to their normal selves, able to innovate and, generally, chill out.

"The stress response," Angier writes, "is one of our oldest possessions. In most animals, a threat provokes the fight or flight response, which dissipates when the the threat disappears... In humans, though, the brain can think too much, extracting phantom threats from every staff meeting or high school dance ..." she writes.

The good news is that like the rats in the study, the human brain should be able to rewire itself when you take a vacation or practice other forms of healthy stress-relief that work for you. Bottom line: The new findings demonstrate a principle that many researchers have been studying: "The brain is a very resilient and plastic organ."

Yesterday's counts: Platelets 12, (still yuk but better than last week); hematocrit, 24 (quite low); white count, 5.9 (normal, yay!). Everything else looked fine.

Basically it meant another whole day at Dana-Farber, what with the CAT scan, a bag of platelets and two bags of blood, plus, while I was waiting for my "products" to arrive, a visit to 6A to say hello to nurses and to PJ, who looks and sounds great.

On the way home, Joe and I got pizza from a Papa Gino's at a Mass Turnpike rest stop. Eating it from a box on my lap, I enjoyed every bite of the two pieces and could have had some more.

We got home around 7:30. It's really hot here. After dark, when it had cooled down, Katie and I took Maddie for a walk. Then we came home, ate Klondike bars, and listened to songs and watched videos from Woodstock on Youtube.

Not a bright and sunny day, but not cloudy either.

Saturday, August 15, 2009

Driving while eating

This is kind of silly.
Or maybe, kind of normal.

I have all day to accomplish just the few things that must get done. Yet, I often find myself in a crunch, racing to get someplace when you'd think I'd have the time to get there in a leisurely fashion.

When I get up in the morning, I end up spending hours at the kitchen table, which has kind of become my office. (Filing system: Bills on one chair, newspapers on another, stack of books on the table, odds and ends on the stool.) I read the paper, talk on the phone, check e-mail and blogs that I follow, do some writing and some "work," talk to the kids, gaze out at the garden and tell the dog to be patient, we'll go for a walk soon. There goes the morning.

The other day I had plans in the afternoon and the evening. I was going to Deb's at 3:30 for a doggie play date and coffee and cake, and then to Meryl and Danny's for dinner around 7. I had told Meryl I would bring bread. I didn't want to bring just any supermarket bread; I was looking for a nice baguette or sourdough.

Suddenly I realized I wouldn't have time to eat lunch. I shouldn't skip it, either. So I threw together a sandwich, wrapped it up and took it in the car with a bottle of water. Ate half on the way to Atkins Farms Country Market, went in but didn't like the bread. Got back in the car, Purelled, ate the other half and headed into Amherst to the Black Sheep, a deli and bakery. Found a good baguette there, headed home, realized I forgot to get local blueberries (got to eat them while they last), went back to Atkins, then home to get the dog and on to Deb's.

This rushing, and the eating while driving, is contrary to what everyone tells you. You are supposed to eat at the table, not on the run. It's better for digestion. If you are into mindfulness, it's good for that too. It's better for concentration on the road.

I'm sure I'm not alone. I learned it when the kids were young. You get them fed and then realize, oops, I forgot to take care of myself. So you grab something for the road. I perfected it when I was working. To get my morning run in, I often didn't have time to sit down for breakfast. So I grabbed a bagel and coffee and ate in the car. I had to have a poppyseed bagel. Hence, poppy seeds all over the car. And as a reporter sometimes rushing from one assignment to another, I often had no time for lunch. I ate on my lap while I drove from one place to another. I got so good at it, I could even eat a salad or pizza on the run.

So when I ate my sandwich in the car, I felt kind of silly but kind of normal.

Tuesday, August 11, 2009

Coping with chemo brain

Last week, Jane Brody of the New York Times explored new scientific findings about chemo brain, the foggy thinking and forgetfulness that afflicts many cancer patients after treatment. Today,  she offered advice for patients in "Taking Steps to Cope With Chemo Brain."

"Nearly every chemotherapy patient experiences short-term problems with memory and concentration. But about 15 percent suffer prolonged effects of what is known medically as chemotherapy-induced cognitive impairment," she wrote last week. "The symptoms are remarkably consistent: a mental fogginess that may include problems with memory, word retrieval, concentration, processing numbers, following instructions, multitasking and setting priorities."

In today's story, her suggestions about coping including making lists and doing one thing at a time instead of multi-tasking as in the past.

Sometimes I experience that fogginess myself. The kids tell me, "You just asked the same question" or "You told us that three times." In general I'm pretty high-functioning, as they say, but I have lapses. Sometimes I just shrug and say, "Chemo brain, sorry." Or, sometimes I say, "I know I've asked you five times in a row. If I hadn't asked you 10 times over the past two weeks or so, maybe I wouldn't repeat myself!"

The question is: Can you attribute these things  to chemo brain, or are they a sign of aging, or just a quirky personality trait, or perhaps the kind  thing  that happen to most people on and off? (Once before cancer, after writing a story about early Alzheimer's, I diagnosed myself with it, but let's not go there.

The kids' list of slightly dopey Momisms predates cancer, leading of course to the question of why they make fun of me, but let's just assume it's because they find me so endearing. One of their favorites came out of my mouth when I was giving one of many lectures about never let a drunk person drive you home, always call me, I will not lecture, etc. etc. It came out, "Never get in a car with anyone who drives!"

The other day, I asked Joe to move a soda can off a wood table, "before the moisture vaporizes."

"Did you mean condense?" he asked. The word had escaped me. "Whatever, you get the idea," I said. (As in, "Give me a break. Just move the bleepin' can!"

Before cancer, I got lost while driving, even sometimes, I'm sorry to admit, when dropping one of them at a friend's house where I had been many times. Today I space out sometimes too. So what else is new?

In any case, if you think you suffer from chemo brain, you might want to check out Brody's suggestions. One of my favorites is making lists. I keep a pad near my bed and write down the names of people to call and things to do.

It's actually something I've done for a while, again, even before cancer. Occasionally I wake up at night, turn on the light and write something down. Sometimes in the morning, I can't understand exactly what I wrote. And of course just because you write something down, doesn't mean you'll do it. But it takes the pressure off your mind from worrying that you're forgetting something. At least you see the list in front of you and the you can go from there.

Sunday, August 9, 2009

Escape to New York

                                   With Serena (left) and Joanne
                                   at the Central Park reservoir.

At the last minute, I went to New York Friday on a quick trip that we scheduled for Katie to see NYU and Columbia. The plan was for Katie and Joe to drive down, pick up Ben and Meg uptown and then continue down to tour NYU on Friday. I bought tickets for them all to see "Hair" on Broadway that night along with our cousin, Serena, and  found a restaurant for their pre-show dinner  (where they ended up not going). They'd tour Columbia Saturday morning and return that day. I would stay home, my involvement finished with the planning stage. 

I had thought of going, but it felt too complicated: I couldn't go to the show, couldn't take public transportation, couldn't pop into a deli for a sandwich. I also wondered if I had enough energy. I would be glad they were having fun, but I would feel a little left out. I told Katie that I was the puppeteer pulling the strings but not participating in the action. (It was a joke, but you know what they say about there being some truth to this kind of comment.)

I told this to Melissa, and she asked why I didn't just go. When I told her my reservations, she had an answer for each one. Transportation? Take a cab. What to do when they go to the show? Visit with someone else. Food? Well, there's always pizza (safe because it's cooked in such a hot oven). So I ventured out, feeling both wary and excited. 

During part of the NYU tour on Friday, I sat on a bench in Washington Square Park, one of my old haunts in high school. I walked along with the tour a bit, but I had trouble keeping up, and each time they went into a building, I wasn't sure what to do with myself. At the dormitory stop I put on a mask and followed the group. We climbed three sets of stairs to see a dorm room. It was too much for me.                     

Friday  night, Joe, Katie and I stayed at 1200 Fifth Ave., the apartment building where I grew up. With my parents both gone, going there was strange but comforting. We stayed with my mother's friend Muriel, who is now sort of like an aunt to us. At 93, Muriel is elegant in an old New York style. She has a beautiful art- and book-filled apartment on the 15th floor, overlooking Central Park.

She bought us bagels and lots of fruit, just like my parents would have. She also set out a box of Lu biscuits – Petit Ecolier with dark chocolate. My mother loved those, and we'd often squeeze into our small kitchen and eat them after seeing a show. When I thanked Muriel, she said she had gotten them because she knew my mother liked them. 

Her apartment in the pre-war (WWII) building shares certain subtle characteristics with our old apartment, 4C. The wood floors creak just the same way. The older faucets make the same sound when turning on. The cabinets in the kitchen are the same, and even the sound of the front door opening and closing sounds like "home." To be honest, that part of it is a little odd. It's like you're home and you're not home. But I got used to it, and it was great spending some time with Muriel.

Things fell into place. When the kids went to the show, my cousin Jeanne and I found a good restaurant with tables outside, where I felt comfortable ordering dessert. We walked around a little and later I met up with the kids at Muriel's.
                                       With Jeanne in Westport, Conn.

I was a little embarrassed to wear my Red Sox hat after two (later to be three) losses to the Yankees, but nobody bothered me. I did stand for a long time trying to get a cab, with many empty ones passing me by. I thought it might be the hat, but when I took it off they still failed to stop. When I changed locations (hat off) a cab finally did stop. Odd.

One of the things that really makes me feel like my old New York self is parking the car. Finding the right space and following the regulations for that particular spot is an art that obsesses many New Yorkers. My father and I used to have long conversations that started the minute I entered the apartment when I visited from Massachusetts. His first question: "Did you get a spot?" (You hope to never have to give in and use the garage.)

The street cleaner comes by in the morning, and you have to either be in your car or move. First thing to take into consideration: If you park in front of the building, you need to be in your car from 8 to 8:30 a.m. Across the street along Central Park, you have to be in the car from 8:30-9 a.m. We parked across the street to get the extra half-hour sleep.

I went down at 8:25 with a book and got in the car. It was musical cars out there, with the 8:30-ers watching to see if the 8-o'clockers in front of the building would pull out so we could take their spot and not have to sit for the whole half hour.

The street cleaner came along a little after 8:30 and signaled some, but not all of us, to move out so he could clean along the curb. The idea is that you go back into your precious spot, but sometimes cars follow the street cleaner and dash into your spot before you can back in. That didn't happen on Friday. You can imagine the commotion when it does happen.

 Meanwhile the traffic police came along and ticketed cars in which nobody was sitting. I happened to be talking on my cell phone when the officer walked up the line of cars. I guess I was slouching and he didn't see me, because he walked over and took out his tickets. Yikes! I sat up straight and he walked away.

A car did pull out across the street, and I tried to make a go for the spot, but the car behind me was faster and got there first. You have to have your wits about you. Then all you have to do is feed the meter quarters every two hours. It worked out well, because when the kids went to Columbia Saturday morning I walked around the reservoir with Serena and our cousin Joanne. 

Hope you don't mind the parking story. The ritual is part of my heritage!

On the way home, we stopped in Westport, Conn., to visit my aunt Marge and her husband Bill. We stayed for a cookout and then headed home to South Hadley. 

I was pretty beat, but I'm glad that I did it.

Wednesday, August 5, 2009

Tennis skirt is more than just a piece of clothing

Yesterday's big question: Should I wear the tennis skirt or not?
Obvious answer: Wear whatever you want!

It was a little more complicated, due I guess to the symbolism of the black Nike skirt with the biker shorts underneath. The last time I wore it, I guess that would be fall of 2008, I was playing a pretty good game of doubles. Not long after, I had relapsed and was in the hospital, the skirt left behind with the rest of my life. The other day, I found it crumpled and dirty on the floor in the back of my closet. I fished it out, washed it and hung it up to dry. 

Donna came over yesterday to hit some tennis balls, visit and walk Maddie around the lake. This was my second visit to the tennis court. We planned to hit just for 15 minutes or so. It was really hot, and regardless of the weather, I don't have the stamina, strength or balance to be out there longer. 

Did putting on the tennis skirt mean I was acting like someone who was really playing tennis? Was it like someone who dresses up for a sport that he or she can't really play? Should the tennis skirt wait for real tennis? 

Well, it was  hot out and I couldn't find my shorts. I've been mostly wearing capris to keep the sun off my legs as much as possible. 

I'm not sure I can explain the hesitancy very well. I think maybe we have complicated connections to items that tie us to life before cancer or to a time before a setback. The clothing connection goes both ways. I can't imagine wearing some of the T-shirts that I wore in the hospital. They make me feel like I should get back into bed.

Anyway, I was not planning on  dressing up in some fancy tennis outfit, but rather just putting on the black skirt and a T-shirt. I overcame my qualms and wore the skirt. More women seem to be wearing something like it these days anyway in the form of a skort. The shorts underneath were baggy, which felt kind of odd because they used to fit snugly. But it's very comfortable. 

Donna and I hit for a little more than 15 minutes. She was the mother, telling me that we should stop soon. I kept saying, "Just these three last balls until we get a good rally." We did that a few times over and then stopped, went back to my house for a cold drink, and took Maddie back to the lake. It was good to be on the court. I could see how far I've come but also how far I have to go.

Back to the closet: I've been thinking for ages that I have to clean it out. When I was in the hospital and very sick, it crossed my mind that I should have cleaned it, because if I died, people would discover how messy I was, and they would also find it a real pain to clean up. 

Like many women, I have too many shoes, most of them black. Some of them I bought because I thought they would help soothe my  plantar fasciitis, an excruciating heel pain that tormented me for about a year. The shoes might have been good for my feet, but they were too ugly to wear. The closet floor was also cluttered with old pairs of running shoes, a couple of them not even matched.

The skirt on the floor motivated me. But I couldn't do it all at once. I made myself do it by taking a few pairs of shoes (and some old purses) out, putting them on my floor, then coming back later in the day for a second round. This might be considered a way of prolonging the work, but, whatever. I finally got everything out, made a bag for the Goodwill, went downstairs to get the broom and a mask, got distracted and forgot about the whole mess.

When I went up for bed, late as usual, I was almost surprised at all the shoes and purses. I sort of knew I would end up finishing late at night. Anyway, it got done and I fell into bed. The closet looks better. But I still have to do the clothes. I think I will do it all at once.

In the meantime, I wore the tennis skirt again today just for hanging around the house and walking the dog. It felt fine, so I guess I'm over that one.

Monday, August 3, 2009

Monday clinic report

After having my blood drawn today, I went across the street to visit PJ at Brigham and Women's Hospital, where she is having her second transplant. I met her through her blog, on which she is, with eloquence and humor, telling her story. We discovered that we have some amazing similarities and have, with a group of other friends from the blogosphere, been supporting each other ever since.

It was good to see her and meet her husband and two sons. She seems comfortably situated on 6A, my home-away-from-home for much of this past winter. Her room is next to my old one. I can clearly remember lying in bed staring out at the pod, watching patients walk around and wondering when I could do that again. It's been a long haul since I took my first faltering steps with a walker, got half-way down the pod and had to pause to catch my breath before moving with difficulty to the end of the pod, and then turning around and looking longingly back at my room and my bed, which seemed pretty far away.

Naturally you go back to a place like that with mixed emotions.

I was glad to check in with PJ's nurse today, Christina, who happened to be my nurse on one of my darkest days when they weren't sure I would make it. I appreciated that I was standing up talking to her instead of lying in bed. None of my other regular nurses were there, but I was happy to see other old friends, including nutritionist Paula, who helped find me things to eat when I could barely tolerate anything, and personal care assistant Donna, who buzzed my hair for me when it was falling out in tufts.

After that, I returned to the clinic and met with Melissa and Dr. Alyea. My counts were: platelets, 10 (at least not in single digits); hematocrit, 23; and white, 4.9. This is lower than last week, but they said it was fine. Dr. Alyea lowered my Prograf from .5 mg twice a day to the same dose once a day. He said he hoped that would help my body stop chewing up platelets and red blood cells. Next, I got a bag of platelets and two bags of blood, almost closing the place down..again.

Oh, by the way, Melissa also said not to worry about the two spots on more forehead. They are already fading and were probably a reaction to bug bites, as my rational mind tried to tell me. 

Saturday, August 1, 2009

Out, out, damn spots!

It's interesting how you can be calm one day and crazy the next.

Well, I can be that way, anyway. I'm sure there are people who are steadier. The majority probably have fluctuations, often unexpected, because that's life. Slow and steady wins the race, but let's assume other characteristics can get you across the finish line, as long as you learn to steady yourself when that crazy feeling comes along.

Anyway, I've been appreciating how calm I've been in the last couple of weeks. I haven't obsessed about my counts. I feel I've settled down a notch. But my mind can be so annoying.

Yesterday I got a little crazy. I have two red spots, the size of a medium freckle, next to each other on my forehead, separated by about an inch and a half. I joked to somebody that if I were Frankenstein, that's where the screw holes would be. Ha ha, very funny. 

Yesterday it was very buggy, and I got a lot of bites around my head. I figured the spots could be bites that reacted that way because even if they are high for me, my platelets are still low. Bleeding on the brain? From TWO dots? Very unlikely. Possible petechiae, signaling a plunge in platelets after I just got them Monday? I guess that what bothers me most. So I keep staring at them to try to figure out if they are petechiae, those tiny burst blood vessels that look like little dots. But these are too big,  I don't have any others, and with low platelets I usually get clusters of them. 

So what? Rational mind says if my platelets are low, I will get transfused on Monday. It's just that it's frustrating to see them low, and when they're  higher I feel so much better. I can't do anything about this except for sending my platelets good energy, yet when they are down I feel somewhat responsible, and when they are up I feel like I've done a good job.

I have gotten kind of OCD-ish about this. I was doing my yoga and stretching in my room, and I actually got up to examine the spots again in the mirror. They were still there, just like they were five minutes ago! Duh. I tweak the OCD-ish behavior by scolding myself. 

I tried to do a Sun Salutation, one of my favorite yoga sequences because it uses most parts of the body. It's difficult for me because my getting up and getting down is not so great. I have to admit that I forgot part, so I looked it up in a Rodney Yee book that had a good diagram. On parts where you are supposed to support your body with your arms, I spent a lot of time on my belly, but I think I'll keep practicing.

I guess as always I must also continue practicing the art of dealing with the crazy stuff, too. I've been walking around a bit without my hat or scarf, because I have a pretty good covering of hair, even though it looks like duck fuzz and there are a couple of bald patches. I figured out a way to keep myself from checking my spots too often: Keep the baseball hat on. Of course I can always take it off if I need to check whether they're smaller or faded...