Saturday, March 31, 2012

Gold medal winner

Although I'm captain of our seniors tennis team, Sets in the City, I haven't put myself in the lineup that much.

Someone asked me about it the other day, and I said, "I think I'm a better captain than a player." Also, I said, "It's hard for me because I'm only three years old." I reminded her that after transplant, since you have a new immune system, you are considered to be like a baby. But, she said, I'm also a senior because all our team members are over 50.

"Yes," I said, "That makes it even harder. I'm a baby who doesn't have the shots and a senior who is confused."

We said at the same time, "I'm a baby, I'm a senior, I'm a baby, I'm a senior."

I've written before that I just don't have the confidence about playing 3.5, because it's my first year back and it's a higher level than I played before.

Yesterday I got a little confidence boost, winning a "gold medal" at the Friday morning round robin. The gold medal is in quotes because you don't really get a medal, although you do get a can of tennis balls.

We play doubles with three different partners, and at the end Michael totals everyone's individual wins. I played well yesterday, as did  each of my partners. When Michael announced that I had won the gold, I grinned like a little kid.

I said I was going to have a parade for one, holding my can of tennis over my head.

I didn't do that, but I did keep relishing the memory of my last drop shot that caused my partner and I to get the decisive win. I celebrated with a Starbucks coffee and a scone.

Thursday, March 29, 2012

Neuropthy, revisited

My experiment with lowering the dose of Neurontin used to treat my neuropathy lasted about two days.

I'd be taking a walk and get a shooting pain in one of my feet, a pain so sharp that I had to cry out. Even with the higher dose, the feeling in my feet ranges from pins and needles to barely any feeling at all. Sometimes my feet feel like they're made of wood, and I massage them to wake them up.

I've been told that it's hard to treat. It might wear off, but it's been three years, so this might be as good as it gets. And of course I am lucky that I function well. Who knows, maybe the numbness serves as a cushion that makes it easier to run?

I'm revisiting the subject because it made me think about how many people must have similar side effects from chemotherapy – not the major stuff, but still enough to create a bothersome background noise.

You're alive and you're doing fine, which is of course the most important thing. I guess you just learn to live with this other stuff, but sometimes it can be wearying.

Imagine this:

"How are you?"

"I'm fine but my feet are driving me crazy."

"Uh, sorry to hear that." Thought bubble: "Why are you telling me about your feet?"

You could substitute many other things that are on the annoyance level...and that nobody really wants to hear about.

Peripheral neuropathy, caused by damage to the peripheral nerve fibers, has many causes other than chemotherapy. I was surprised when looking into the topic again on the Internet to find a site called The Neuropathy Association. Apparently neuropathy can be severe. The association has even created a network of support groups. Who knew?

On a lighter foot-note, the other day I had a momentary panic after I went running and took off my socks.

I looked down at the bottom of one foot and saw red...lots of blood!

Or so I thought. Then I looked again and remembered that I was wearing white socks with the brand name stitched near the bottom in red. So I was seeing the inside of the stitching.

I don't even know what I was worried about, probably a low-platelet moment.

I assume other cancer survivors have these panicky moments where they jump to judgment based on some silly misperception.

You just have to laugh when you realize your mind has played a joke on itself.

Saturday, March 24, 2012

Recovery after running

I felt sluggish this week, and with my calves still tight after the race, I didn't feel much like running.

On Wednesday and Thursday, my early days when I tutor, I did what I often do: I fell asleep in the car on my way home. It's not a long drive, but I get so sleepy I feel like I just have to pull over. Wednesday, it happened twice. I took a brief cat nap at the gas station and then, after I parked in my driveway, fell asleep again.

I've been pretty good at going to bed early enough that I get almost eight hours of sleep, but maybe I need to go to bed even earlier. Also, when I see Melissa in two weeks, I'm going to ask if we can go over my meds for pills that cause sleepiness. I know that Neurontin, the drug that I take for neuropathy in my feet, causes sleepiness, and since it's not a "must have" pill, I am experimenting with decreasing the dose.

Anyway, I ran Thursday for just about 3 1/2 miles and felt OK. But in keeping with that hard-to-kick habit that many cancer survivors have, I had wondered if possibly my fatigue signaled a drop in my red blood count and was a sign of relapse.

I told that to Barry, who always listens patiently and then presents the rational answer.

"Maybe it's because you ran a race on Saturday," he said.

"But I always recovered more quickly than this," I replied.

Obvious answer: I'm older and that was before cancer and coma, and this is after.

Coincidently, I was just going through some saved newspapers from the week and came across this headline in Tuesday's health section of the New York Times: "Road to Race Recovery is Littered with Variables."

Columnist Gina Kolata, who was trying to figure out her recovery time after her first marathon, looked into different theories on race recovery time after her coach told her it would take four weeks to fully recover.

"One popular notion holds that however many miles you race, that's how many days it takes to recover. A 10-mile race requires a 10-day recovery," she writes.

She quotes an exercise physiologist who says that theory was never proven, but it works for me because it explains why I wasn't so perky this week.

Well, actually, my 6.2 days ended yesterday, unless you hold over the .2 into today.

But wait. None of us are machines, and if some theory gives us a certain number of days to feel a certain way, we have to remember that we might not fit this mold.

Tuesday, March 20, 2012

If the shirt fits

I love my new lime green T-shirt from the race.

I wore it to tennis yesterday and was happy to discover that the blue stripes match a bluish-purple skirt that I don't wear much because I don't have many shirts that go with it.

Plus, I had a brainstorm this year. After all those years of getting medium shirts, it finally occurred to me to get a small. The mediums are baggy, so I don't wear them much, although they do make good nightshirts.

Yesterday I saw two people in Starbucks wearing the shirt. We smiled at each other and said "Nice shirt." Then I saw a woman jogging down the street in one.

They're kind of a runner's badge of honor.

I had already worn it Sunday, so yesterday made two days in a row. It's the only thing I wanted to wear.

Of course I planned to wash it, I just wasn't sure when that would be. I spilled coffee on it during my drive home yesterday, so my decision was made for me.

Reluctantly, I took it off. I flashed back to having little kids who did not want to be separated from a new shirt that they had decided was the only thing they would wear.

I would cajole, reason with them, and make deals, and sometimes, alas, just yank it off while they protested. At some point around kindergarten, one of my sons (no names) got so attached to a particular undershirt that he screamed bloody murder every time I tried to take it off of him.

At the time, this proved to be a vexing problem. Our pediatrician, who obviously saw the big picture, said to just leave it on him for as long as he wanted and nothing terrible would happen. He was right, and eventually the child lost interest.

Anyway, I washed my shirt, folded it and put it away...and then put it back on today.

Sunday, March 18, 2012

Mission accomplished

I finished the Saint Patrick's Road Race yesterday with no mishaps, and for my efforts got a nice lime-colored T-shirt that I want to wear all the time.

It was fun being back with the pack; there were some 6,000 runners, and, at the start, we were really packed in. I went with Ben and some of his friends and stood with Ben at the start. The weather was good for running, and the crowds and music were energizing.

Ben and me after the race, with
Holyoke City Hall behind us.
For the first couple of miles, I didn't feel great, but then I never do at the start of a run. Once I got my stride, I thought, "I'm doing this!" And then came the hills. I ran up all of them, but I went so slowly I might just as well have been walking. But I went pretty quickly down the hills, while still holding back a little in keeping with one of my goals: No tripping.

And after all that worry about my feet, they didn't bother me at all.

I wasn't even going to think about the time, but when I crossed at 1:23, although I was happy to finish, I did think, "How did I get so slow?" My time, after all, used to be in the 50s at my best best and although slower with time, it was usually under an hour...except for the 2003 race when I was much slower, went to the doctor, and ultimately was diagnosed with leukemia.

When my father slowed down in his 80s, he used to say, "I'm a shadow of my former self." I'd say, "Dad, you've had two heart surgeries and you're a little older. You're doing great."

I guess I inherited some of my father's competitive streak. I'm sure it helped me get through a lot of the things that were thrown at me. But still.

Of course I know how I got so slow. I'm a little older and haven't run the race in five years. And three years ago I was in a coma, bedridden for months, and unable to walk when I could finally get out of bed.


Anyway, people did finish behind me.

I'm alive and feeling well, and I earned my new green shirt.

Thursday, March 15, 2012

To run, or not to run

I went to a tennis clinic Monday, and on Tuesday, I ran only on soft surfaces – part-way around the lake, uphill through the woods, around a field, back down through the woods and then the other part of the lake.

This was a good plan, except that the woods were really muddy, and my sneakers got soaked. My feet didn't hurt, though. Maybe the mud bath was therapeutic.

That was supposed to be it for the week – my resting period before the St. Pat's race Saturday –  but I got offered a spot in a doubles game today, and of course I couldn't refuse. My feet felt fine during the game, but when I am walking or even sitting around the house, I can feel a little throbbing in my right heel (the old plantar fasciitis spot) and soreness around the bottom of my left leg.

A tutoring friend who runs a lot said I probably got a little shin splint in my left leg because I started favoring it to head off pain in the right. She said if she was trying to decide about the race, she would pick up her T-shirt, go to the post-race party and call it a day.

This would be very hard for me to do.

Katie didn't tell me not to run, but she lectured me on the absolute need of stopping if I'm in pain and reminded me I have nothing to prove. "You're already a winner," she said.

"Do you want to get another stress fracture and be out again for six weeks?" she asked.

"Well, that's more interesting than just dropping out," said maddening mother.

Joe weighed in too: "Just don't fall!"

After tennis today, I came up with a brilliant idea: Put a tennis court on top of a truck and have someone drive it to the finish while I run around the court. That would suit me better.

I have to admit that I did not come up with this kind of solution all on my own.

Before our 10-miler last May, Emily had been training on a treadmill, and she said she wished she could just put a treadmill on top of a car and run the race that way.

She ended up running all the way on the ground and finishing.

So, alas, no moving tennis court. No way I'm going to skip the race, but if my feet hurt a lot during it, I'll think seriously about stopping. And if the crowds move me along, then, so be it, if I get injured it wasn't my fault.

Saturday, March 10, 2012

A week until St. Pat's race

Over the past month or so I've comfortably finished hilly runs of a little over six miles, so I think I should be OK for the race.

My goal, naturally, is not to set any speed records. It's to feel good and enjoy the run.

But the past week hasn't been so great. Last weekend, I changed my route and ran one of my old five-mile loops, with steeper and longer hills than the six-milers I have been doing. It's along a street that we drive on all the time, and sometimes I can't keep from saying to whichever child is in the car, "I can't believe I used to run up this," to which the child usually says, "You'll do it again."

So I did it!

That was the good part. The next part is the runner's version of pride coming before a fall.

Then I looped around to the easier part, which still has a hill, and I was focusing so hard that I tripped and fell on a branch that was sticking out onto the street. It was a good fall, but my knee hurt. When I got home I told Joe about my accomplishment...and about the fall, which I really should have left out of the story.

Joe, who is not his brother's keeper but who is his mother's, got understandably upset, seeing as how he was the one who took me to the emergency room when I fell on my back and hit my head on the pavement a couple of years ago, and he is the one who's been home when I've fallen in the driveway, among other places.

"If you don't watch where you're going, you're going to hit your head and really hurt yourself one of these days," he said. He said we should put a chart on the fridge noting every time I fall. I think I'll pass on that one.

Anyway, I remained a little sore after that. Then, after walking in clogs from the T to a doctor's appointment in Boston on Tuesday, my left shin began hurting. A nurse even pointed out that I was limping.

And THEN after a run Thursday I got some twinges of plantar fasciitis pain in my right heel. Anyone who has had that ailment knows how alarming it is when you feel a twinge.

I'm going to take it easier – tomorrow maybe run a few miles around the lake where the surface is soft – but I still want to get in one longer run.

I hope that after all my hard work, I don't limp through the race.

Wednesday, March 7, 2012

Doctor double-header

I saw two specialists yesterday in Boston, but although it was like a double-header, I didn't have the luxury of staying in my seat.

One appointment (with the eye doctor) was at 10:45 in downtown Boston, and the other (with the dermatologist) was at 3 in Chestnut Hill, on the outskirts of Boston.

I thought I would have a bit of time in between, but with travel time and waiting time, I only had about an hour and half.

I spent Monday night at Diane's, then took the T down to Government Center and walked to the Mass. Eye and Ear Infirmary (on the campus of Mass. General) to get checked out by Dr. Reza Dana, a specialist in Graft vs. Host of the eye. Walking quickly down Cambridge Street in clogs turned out to be my exercise of the day.

When I last saw him four months ago, Dr. Dana said it was unclear whether I was developing GVHD of the eye. Yesterday he said my eyes looked much better, telling me to continue with frequent use of eyedrops (including the prescription drug Restasis) and to add warm compresses for 10 minutes twice a day. Haven't quite gotten to that yet.

Then, more clogging back to the train and enough time at Diane's to eat and read the paper. As I left to get in my car to drive to Dr. Jennifer Lin's office, I told Diane I would stop back and take a nap if I was too tired to drive home. But, no surprise, I had to wait, so I laid my head against the wall in the waiting room and took a nap.

I should list "napping in noisy places" as a special skill on my resume.

I originally saw Dr. Lin for possible GVHD of the skin, and she said yesterday she decided I definitely do not have it. So I guess I only have GVHD of the liver.

What I also have is at-risk skin from all my previous sun exposure, chemotherapy and a weakened immune system from the prednisone.

She was happy with the results of the Photo Dynamic Therapy (PDT, or, as I like to call it, face fry) which she did last month, but she said she still saw problem spots that could turn into skin cancer. She froze some (ouch!) and then scheduled another PDT session for three months from now.

Dr. Lin and I have a mutual admiration society; she always compliments me on my jewelry, and I compliment her on her shoes. Yesterday I told her I loved her maroon suede boots (worn with matching maroon tights), and she said she liked my silver watch with the band made out of blue glass.

We have fun with this, but still...Only three months until another PDT session?

I hope she will be wearing some really cool footwear to take my mind off of the burning of my face.

Sunday, March 4, 2012

Words of wisdom

Here's something I meant to write about before, but other stuff intervened, and now I have some time to go to my back burner, so here it is.

I heard an NPR interview a while back with childrens' book author and illustrator Eric Carle about his most recent book, "The Artist Who Painted a Blue Horse," and it made me think of a saying that is good to live by.

My mind wandered to the time I interviewed Carle while he lived and worked in Northampton. As I climbed the stairs to his studio, I saw this poster that he had made with pieces of colored tissue paper, the way he does all his work.

His rendition of an Irish proverb was so beautiful, and, I thought, directed at me...and of course at all worriers and over-thinkers and people who can't proceed with what they want to do because they are stuck in their own mind.

The Carle collage would be a good thing to put on our desks or on our kitchen tables or wherever we can see it.

By the way, I did not just stand in the staircase mesmerized by the poster. I went into the studio, where the author of "The Very Hungry Caterpillar" and other beloved books was incredibly gracious and talkative.

He showed me the drawers where he kept his tissue paper, separated by color. Then he took a sampling of papers, put them in an envelope, and gave them to me. I felt like I was holding an envelope full of gemstones.

The rule at the paper was "Don't take anything from anyone."

Therefore, if someone sent you flowers or a fruit basket as thanks for a story you did about them, you were supposed to scoot right over the a hospital or nursing home and donate them. Also never take tickets, etc. Most people kept the flowers or shared the fruit and candy with the rest of the office. As for me, I laughed at how the rule really could not apply to an envelope of paper scraps, but I did think about it when I went home.

Katie, who had been reading the books, was thrilled. I gave her pieces of paper to use for her own art projects and made some collages of my own, until eventually (and sadly) all the paper was gone.

But back to my point. I thought of the saying last week when I realized I had spent months worrying about something over which I had no control, only to find out that the outcome was the opposite of what I had worried it would be.

I was relieved, but I also regretted the waste of time where I could have been doing something productive.

Oh well, all you can do is keep trying.