Thursday, October 28, 2010

Good counts, good sandwich, good travels

My clinic visit yesterday went well. My next appointment is in three weeks.

The kidney doctor said I was doing fine and that he was "releasing" me. I don't have to go back unless I need him. Then I saw Melissa, who said my counts were good, although my liver numbers were elevated, not too much but suggestive of GVHD. Dr. Humphreys (the kidney doctor) pointed that out too.

Melissa said that meant I couldn't decrease the Prednisone at this time. They will recheck in three weeks, and if it isn't better, then I might have to increase the Prednisone again. Sigh.

Somehow this is connected to my lower platelet count. It was 64 after being in the 90s the past few weeks. (Normal is 155-410.)

My hematocrit went up a bit, to 29.3 (normal is 34.8-43.6). I'm still pretty anemic, but up is good. My white count was 7.3 (normal is 3.8-9.2).

I have been off the high blood pressure pill Lisinopril for a couple of weeks. It was a suspect in my crazy nighttime coughing, and sure enough, the coughing has mostly stopped. In the meantime, although my left fractured ribs finally healed, my right ribs now hurt a lot, to the point where I have trouble turning over. Melissa said I probably pulled some muscles when coughing.

I like to add some "fun" things to these visits. I headed east on Tuesday and stopped at Brandeis to see Katie for about an hour. It was a warm, glorious day. I got a coffee and she got a hot chocolate and we sat outside. She is having a wonderful time, and it was wonderful to see her.

From there I went to my friend Margaret's house in nearby Needham. Margaret made a nice dinner, and it was good to spend some time with her. I slept over, heading into Boston the next morning.

My appointments were at 12:30 and 1:30. My plan was to hopefully get out of there in time to get to Enfield for my 5:30 practice with George. Things were falling into place with plenty of time to spare, but I unfortunately could not shake off my craving for a Reuben, which for some reason often hits me after a good clinic visit.

I got myself to nearby Brookline, heading for Coolidge Corner, near where I lived back in graduate school. Leave it to me to pass the restaurant, Zaftigs, that has the good Reubens. (Yes, New York skeptics, you can get a decent Reuben in Boston.) Poor Diane had to put up with a cell phone call where I said something like this, spoken rapidly as though it was one long word: "I can't talk so don't ask me any questions but I'm in traffic and I think I might have passed Zaftigs so where is it thank you."

Turns out I had just passed it. Diane calmly told me to turn around and to look for certain stores which were just ahead. I found the restaurant and by that time had to get the sandwich to go (along with crispy French fries). They only served Pepsi, so then I needed to make another stop to get a Coke.

The sandwich was delicious, but probably not the best thing to have before running around on a tennis court. In any case, I got to tennis just in time and had a lot of fun. I was almost on a par with the other women there, but not quite, because my ability to run is still limited.

Afterwards I went out for a drink and a shared salad and pizza with my tennis friend Barbara, who I hadn't seen for a long time. We left the restaurant around 9; Barbara had me call her when I got home. The half-hour drive was fine, and although I was tired after the long day, I felt good.

Maddie has been at her second home with our friends Jim and Jane since Tuesday morning, so I didn't have to walk her. She's staying with them through Sunday because I'm leaving tomorrow for one more Wellfleet weekend.

The weather will be cool, but the forecast is for sun. I'll go to sleep tonight thinking of crystal clear ponds, long stretches of beach and tall grass waving in the wind on the marshes.

Tuesday, October 26, 2010

Bad day for teeth and toes

OK, let's start with the teeth.

My dentist told me early last month that because I was immunosuppressed for so long, my teeth were in bad shape. He suggested pulling three molars, recommended a surgeon, and said he was surprised those teeth didn't hurt.

Smart people would make the appointment before the teeth start to hurt.
Many, however, would put it off. Who wants to rush into getting teeth pulled? I guess that makes me normal. Hurray! The more normal, the better, unless of course it leads to a tooth-ache.

Also there is the question of whether I should have local or general anesthesia. I had general for my wisdom teeth, and that's my only experience with getting teeth pulled. The dentist said he didn't think they'd come out easily. I have a vision of a surgeon with a set of pliers, bracing himself against the chair and yanking with all his might. I know it doesn't happen that way, but still, I might want to be asleep.

I put off making the appointment until, sure enough, those three teeth started aching. I couldn't get in until next week, and that is only for a consult. I want to make sure all three really need to be pulled. If you are going to have general ($300 more), you need to have the consult anyway ($100-something). The whole thing is out-of-pocket. I guess if I can find the money in my pocket to go to JJill, I can find it for the surgeon.

Meanwhile, I went to my friendly podiatrist yesterday for treatment of my pesky ingrown toenail. If you don't want to read about toenail surgery, stop here.

He already performed surgery on this nail twice, cutting off a strip of my nail (what fun!). But when it came back again he suggested permanent removal with a chemical that kills part of the nail. That's what he was doing yesterday. This requires a lot of numbing; the needles going into your toe are the worst part of it.

For added fun, the next toe in also had an ingrown nail and was infected. So he numbed that one up too and cut out part of the nail.

He bandaged them together and said to stay off my feet for a couple of days.

But hey, I couldn't feel a thing. So I made a quick trip to the mall. Still numb. Cool. I came home and walked the dog around the lake. Smart me said to call it a day, but I went around a second time because she likes it so much, and so do I. Still numb! Went to Northampton to get my hair trimmed, and ran into the shoe store for a second. Starting to feel a little pain.

This made me think of my third Caesarean, when they put morphine in my IV. "Wow, this is great, I thought afterwards. I don't feel any pain. This is going to be easy." And then, ka-pow, the pain began to shoot through me.

Which is what happened yesterday. This in addition to the fact that for some reason, the neuropathy in my feet is getting worse even though I take a pill called Neurontin three times a day. It feels like pins and needles, with an occasional jolt like a lightening strike. This is a result of the chemo.

Anyway, I had one more thing to do: I wanted to drive to Mary's to pick up a paint chart I had lent her. On the drive over, I found some Tylenol in my purse and popped a couple. I didn't have great expectations and thought I might have to resort to Oxycodone, which I don't like. But the Tylenol actually worked.

Poor Mary and Jerry had to listen to the foot saga. Mary gave me dinner (thanks, Mary!), and when she saw that my eyelids were drooping, she offered to drive me home. So she drove my car and Jerry followed.

It was a good thing, because as soon as I got home (about 8:30, too early for bed), I fell asleep on the couch, my feet on top of the dog. When I woke up about 20 minutes later, she had moved to the other part of the couch. I think she didn't like being used as a foot rest.

I could say I've learned my lesson, which is probably not true.

I guess it's good that I felt well enough to run around, even though it was bad for me.

And my toes feel better today.

I'm heading eastward to make a quick stop at Brandeis to see Katie. (About an hour-and-a-half drive.) Then it's on to Margaret's (in nearby Needham) for dinner and an overnight. She lives within 30 minutes of Boston, so tomorrow I will go from there to my check-up at Dana-Farber.

Friday, October 22, 2010

Thoughts about believing in the future

On Wednesday, in addition to my regular clinic appointment, I have an appointment with a nephrologist (kidney specialist).

I saw Dr. Humphries over the summer when my ankles were really swollen. Because my sodium is too low, I have been taking salt tablets; he told me to go from three a day down to two. Then he told me to make an appointment for October.

"Wow, I thought, he thinks I'll still be alive by then."

Here it comes, and, sure enough, I'm alive and feeling pretty good.

I thought about this as the buzz began over my 35th Vassar reunion, coming this May. I got an e-mail from an old friend asking me if I wanted to go. He said he had gotten an e-mail from another classmate. I ran it by Katryn and Alice, classmates who I saw this weekend, and asked them their thoughts.

I've been to many high school reunions, but only to one college reunion. We stayed in a dorm, had big buffet meals under a tent, reconnected with old friends and wandered around. It was fun to talk to people, but a little stressful. And staying in the dorm didn't do too much for me.

Anyway I realized yesterday when walking Maddie that my thoughts about the reunion have been about if it would be fun, not about whether I'll still be here in May.

I think the fear of relapse will always be with me at some level. And when I'm waiting for my counts on Wednesday there will be that moment when I hold my breath.

But I took it as a good sign of moving forward that I now at least assume I will be alive and well in May.

Writing this makes me afraid that I will jinx myself, just like I feel when I make plans that seem a little too far in the future. But hey, I just wrote it, and I'm not going to take it back!

Tuesday, October 19, 2010

Out and about, from witches to water

"Fried dough. Welcome to Salem."

That is one of the first signs that caught my eye as I struggled through the crowded streets of Salem, Mass. on a warm sunny day Saturday.

The city is home to the Salem Witch Museum, which contains exhibits about the tragic events of 1692, when more than 150 women – and men – were imprisoned on charges of witchcraft. Fourteen women and five men were hung.

I visited the museum ages ago when it stood in a relatively quiet city. I don't know when this happened, but the place has turned into a zoo. Banners advertise ghost tours, seances, haunted this and haunted that. I nearly bumped into a walking Frankenstein.

I ended up there because I was meeting my friend Katryn from Vassar. Our birthdays, which are in August, are just two days apart, and we try to get together every year to celebrate. So this was our birthday celebration.

Katryn lives in Portland, Maine. We try to pick a half-way point, and Boston or its environs has often been our meeting place.

Katryn said she wanted to see the Chinese house at the Peabody Essex Museum, located in Salem. I wasn't exactly sure what she meant, but I thought, hey, a Chinese house in the middle of Salem sounds interesting to me.

As soon as she saw the commotion, she apologized to me, but I didn't really care, because it made for an interesting visit, and I had nothing pressing on my time.

The museum is an oasis in the middle of this crazy place. It is so odd to walk up to its doors and find an actual regular art museum there. As it turned out, the house, called Yin Yu Tang, is an actual structure, built in China 200 years ago and then taken apart bit by bit and moved to Salem.

It is connected to the museum, and when you enter it, it is like entering a different world. We took a self-guided tour that was extremely informative.
Anyway, after Salem we spent about an hour walking in beautiful Marblehead, about 10 minutes away and home to beautiful harbor views and narrow lanes. The photo shows us in a little park above the water.

From there we headed back south, spending the night at Diane and David's house and then meeting our friend Alice, also from Vassar, for brunch in Newton.Katryn and I have done a lot of things together. When we both lived in Boston, we celebrated our birthdays on a "booze cruise" around the harbor. Once we rode out bikes around Nova Scotia.

Later we were room-mates in Northampton. We lived in a funky apartment with no cabinet doors; the kitchen was perfect for the sprouts we grew in the window. We had some, ahem, interesting parties there.

We've also visited at each other's homes. I have one of those adorable/embarrassing photos of our naked baby children in the bathtub together. Always a good thing to hold over your kids' heads in case you need to blackmail them. (Only kidding.)

We happened to plan this trip kind of last-minute, which is sometimes easier than making plans that often end up being broken. It was so easy to do, we both said we should do it more. I hope we do. It's good to get out and about. But maybe we'll leave out Salem.

Saturday, October 16, 2010

Back to basics with the dog

Maddie watches Simba swim in the lake.

Nobody likes to go backwards. But as we learn through challenges large and small, it's often one step forward, a step back and, hopefully, another step (or two or three) forward.

I say this because I took a step back with Maddie, which I will explain shortly. The miracle dog is a delight, but she drives me crazy in perpetuating an old habit, leaving a little "present" on the floor overnight.

I don't need to be cleaning up after a dog. Plus it makes me dislike her, starting the day on a downer. The dog is three years old. Enough already.

She doesn't do it all the time. A trainer told me to keep a log of when she does it, to see if there's a pattern. But there isn't. I take her out at night between 11 and 11:30. She has the run of the house, and comes up to joyously get me out of bed between 6:30 and 7 a.m. We go downstairs, and sometimes I find nothing and sometimes I find a little pile.

The vet said the only solution was to get a crate and retrain her. I resisted. I thought I was done with crates. It's kind of like putting your child back in diapers.

But finally the other day I had enough. I came down and there it was again. "That's it," I told her. "You're going in a crate tonight."

She wagged her tail.

I took her to a big pet supply store where they showed me the right size crate. I usually have only plain dog biscuits, but for the occasion I splurged on a "party sack" of Snausages in beef, bacon and cheese flavors. I later realized they were shaped like cars, hydrants and shoes. Do dogs really notice these things? For good measure, I got another special treat: A pig's foot. Yum.

The first night – the night before last – I put her blanket in the crate along with two of her favorite toys. I was afraid that after having so much freedom she would complain, so I talked up her new bed big time. This might sound a little nuts, but I think they react to your tone.

Then I threw in a few Snausages and the pig's foot, turned out the light, and went upstairs to bed.

I didn't hear a peep from her until she yelped around 7 a.m. Same thing last night.

Oh happy day. Nothing to clean up. Good dog!

Yes the crate is a step back, but it already feels like a step in the right direction.

Tuesday, October 12, 2010

2 houses, 1 driveway and an exiled Russian poet

The Sycamores, front, with a black and white sign
announcing the Joseph Brodsky photo exhibit.
In rear, across a driveway not visible here, is my house.
You can see the two stone posts between which the driveway passes.

My troubled relationship with the South Hadley Historical Society took a big turn for the better on Friday.

As the owner of a historic house myself, I never thought I would have any issues with the local historical society, but I did, which is a long story that I will sketch below. Fences have long since been mended, but still, I can't erase the fact that it happened.

The interesting turn of events began when a police officer stopped traffic for me on Woodbridge Street when I crossed after my mini bike ride. My very own crossing guard!

Then I noticed he was there to help the nicely dressed crowd who had parked in the Skinner Museum parking lot across from The Sycamores, a historic house across the driveway from me.

The reason: Part of a two-day celebration, "Joseph Brodsky: A Poet and his Place," at Mount Holyoke and Amherst Colleges and at Rawson House, where the exiled Russian poet lived and wrote for the 15 years he taught at Mount Holyoke until his death, at 55, in 1996.

Rawson House, the oldest house in South Hadley, is now attached to The Sycamores after being moved from another lot just down the street. Brodsky, who won the Nobel Prize for Literature and a MacArthur "genius award," would have been 70 on Friday.

The Sycamores, built in 1788 and originally the home of Col. Ruggles Woodbridge, was later a dormitory for Mount Holyoke College students and, after that, a home for inner city school-girls attending South Hadley High School through the A Better Chance program. After that it provided accommodation for male guests of Mount Holyoke students (don't know how much use it got in that department) and after that was a warehouse until 1996. After that it was empty.

It looked pretty bad until the South Hadley Historical Society purchased it from Mount Holyoke College in 1999 and began renovating it.

My house, built in 1848, is new by comparison.

On Friday, a balmy night, I stood in my driveway watching a crowd gathering in the courtyard. Someone was speaking into a microphone, to much applause. Photographers took pictures.

This was something new. They often have sparsely-attended open houses and meetings. I hesitated to investigate, partly because I was in my sweats and partially because I just don't wander over there too much.

My problems started on Oct. 19, 2004, when the historical society had Rawson house moved down the street after it was donated by the new owner of a larger house to which Rawson House was attached. I was as interested as the next person in watching it arrive on wheels on a rainy muddy day. Unfortunately, the house got stuck in the mud at the end of the driveway. It stood there for about a week while workers got it the rest of the way in.

If people sought directions to my place, I said, "It's the one next to a house stuck in the mud."

Ha ha. Actually it wasn't that funny. I was still recovering from my first stem cell transplant a year earlier, and I didn't always feel great. Workmen kept me awake making noise at crazy hours of the night. Once I went over there in the dark and asked them to stop. They said they had a deadline and refused to stop. I went back to bed and put my head under the pillow.

After that came the start of what I called the Driveway War. Mount Holyoke College, which owned the Sycamores when we bought our house, owned a small triangle of land including the foot of our driveway. They would not sell it to us or to the previous owner. When the historical society took over, they didn't want to sell it either. When they renovated, instead of using the gravel driveway leading directly to The Sycamores or putting one in on the other side of their house as I had been led to expect, they planned to run the new driveway cutting through the entryway of my driveway.

Lawyers got involved. Hackles went up. I could not believe I was wasting so much energy fighting about a driveway. Hey, I'm from New York. There are cars and commotion all over the place. But when you live in a small town, you don't expect to have to worry that your children might get hit by wayward cars coming too far into your own driveway.

In the end, I lost the battle because they owned the land. They promised that they would limit the number of cars parked in their driveway.

At first it was chaotic. Cars backed up trying to get into their parking lot and occasionally ended up on my part of the driveway. Katie was a little girl, and it drove me crazy that cars were coming near her when she was outside playing. Occasionally someone left a car blocking my way in or out. I strode across the driveway and found a meeting in which the offending party was participating; I was totally polite but inwardly fuming.

"I knew this would happen," I harumpphed to the kids. The Sycamores finally got the idea to direct cars across the street to the Skinner Museum. Problem fixed, except for the straggling driver who still doesn't get it.

So it was that on Friday night I was surveying the crowd and feeling irresistibly drawn across the driveway. I wandered over and heard a woman speaking in Russian, followed by a translator. People around me murmured in Russian. For non-cosmopolitan South Hadley, this indeed had turned into quite the affair. Mount Holyoke president Lynn Pasquerella was among those attending.

The gist of the speeches were thank-you's all around for the collaboration between the Anna Akhmatova Museum in St. Petersburg, which owns the contents of Rawson House along with some 2,000 items of "Brodskiana" (who knew?), and Mount Holyoke College and the South Hadley Historical Society, which arranged for photos from Brodsky's life to be displayed on the walls of the otherwise empty Rawson House.

The exhibit also includes photos of the space while Brodsky's possessions still occupied it.

Ken Williamson, chair of the Sycamores Committee of the Historical Society, also spoke. He saw me in the crowd and came over afterwards, smiling a big smile. He explained that about 30 people from St. Petersburg had come for the Brodsky celebration. Then he invited me in for a drink and refreshments that were being served at the opening.

I said I needed to go back home and put on proper clothes. He said that one of the earlier speakers had been wearing jeans, and that I shouldn't hesitate to go right in.

I went inside the main building and admired the braided dining room rug that I had donated before the "war." I got a Sam Adams and walked into the attached Rawson House, helping myself to a piece of fried shrimp and some concoction of roast beef and carmelized onions on crackers. The photos were interesting, as were the guests.

I had had my own crossing guard, an interesting evening, a drink and hors d'oeuvres, and I had gained a new respect for the South Hadley Historical Society.

It's probably time to let bygones be bygones.

Wednesday, October 6, 2010

Clinic results

My clinic visit Monday was (relatively) short and sweet, and my results were good.

White count was steady at 7, hematocrit was hanging in there at 28 and my platelets – fasten your seatbelts – were 98. Two thousand more until I hit 100. Go platelets go!

Everything else that they look at was OK. Kidneys, sodium and potassium were fine; liver function was slightly elevated, but Dr. Alyea said that was OK. I got a CAT scan to see if there was any explanation for the cough that's been bothering me, especially at bed, when I feel like I cough all night.

The results came back negative. There was an interesting finding: I have fractured ribs, dating back to my last fall over the summer. They hurt for a long time, and sometimes even now they hurt. If they had known about the fractures back then it wouldn't have mattered, because fractured ribs heal with no attention. But still, the finding helped explain the pain.

I am going to try stopping the Lisiniprol, one blood pressure pill that may lead to a cough.

Anyway, I'm really tired, so I'm going to sign off.

I did an annoying thing: I stripped my bed and washed the sheets, making a mental note to make the bed before it got too late. Went out to a tennis clinic with George and forgot about the sheets. It's 11:22 p.m. and now I have remembered. Just gotta get up off this couch.

Sunday, October 3, 2010

Rejuvenating weekend

Higgins Pond, Wellfleet

I spent another rejuvenating weekend in Wellfleet, possibly my last for the year. I'm not complaining; I've been there four times since the summer.

This weekend's trip was part of a larger plan. I drove to Newton in the pouring rain Friday after playing a decent game of doubles in Enfield with Korby, Gail and Deb. I'm improving each time and moving around the court better.

My friends seemed fine with it. We had breakfast at a cute restaurant near the club, and I ordered my usual, blueberry pancakes with an egg over well.

I left on time to get to Newton without rushing. David, Sam (my nephew) and I then drove to Wellfleet, Diane having left earlier in the day. It rained the whole way and took us three hours – longer than usual – but we chatted most of the way and the drive passed quickly enough.

Saturday was beautiful. We walked through the woods, passing a string of ponds where the water sparkled in the sunlight. We ate lunch at a picnic table at the harbor and later walked along the bay. After an hour of "free time" (as our father called it) we drove to Lieutenant's Island to have dinner with friends who live amid the marshes. You have to watch the tides when coming and going, because the road before and after the bridge floods at high tides.

It's beautiful over there too. Around sunset we walked along a sandy path and stopped at an inlet where we were spellbound by the streaked sky.

Now I'm back in Newton. I have an appointment tomorrow at Dana-Farber, conveniently about 15 minutes away from here. As I'm writing this, I get butterflies about the appointment, but I can think about the images from the weekend and stay pretty calm.

After the clinic I'm going to stop at Brandeis to go to the book store and have coffee or hot chocolate with Katie. Later in the evening her a cappella group performs at a coffee house; Jim is going to drive out and meet Katie and me for a quick dinner on campus before the performance.

I hope I'll still be in a good mood.

Lieutenants Island sunset

Windswept sisters

Beach yoga. I only fell over once, and I got up without help.