Sunday, August 28, 2011

Speaking of cancer

A column in today's New York Times, headlined "Cancer: Fighting Words," revisits the topic of combat metaphors about people with cancer, as in saying that they are fighting, or battling an invader.

The author, Daniel Menaker, a recurrent cancer patient, says he supports "the demilitarization of cancer talk." He says it seems "more calming, less victimizing," to think of the disease as a problem to be worked on. He says that by putting the disease into the context of a fight, those who die might be considered losers, and he quotes a blogger who asked, "Does it mean that if I croak it's my fault?"

On the other hand, Menaker writes that he understands how it got this way – cancer does invade different parts of the body while other diseases stand still. And he gets that warfare language helps provide motivation for the task ahead.

He reasonably suggests that there is room for looking at it both ways, but falls short in suggesting "a rational, problem-solving approach" in public discourse and a martial attitude in more private or interior contexts.

His proposed segregation of attitudes doesn't work for me.

When I was battling for my life, according to this author I should have said I had "a problem" while being quiet about my knowledge that an "invader" (a military term) was seriously threatening me.

It was more than a problem. I wasn't dealing with leukemia the way I dealt with my foot problems.

I do think that in using warfare terminology, people need to be more clear that a patient is a not loser when treatment fails.

Also, most everyone talks about the need for a positive attitude, but some go overboard on this. Of course a positive attitude helps, but if you don't have it every day, or if cancer gets the upper hand, does this mean you haven't been cheerful or strong enough?

I think often about my beautiful friend Ann, who died of lung cancer in her 40s and who was one of the most positive, cheerful people I ever knew. Sure she complained about things, but she was just naturally an "up" person.

When I hear this garbage about "positive attitude or else," or detect an implication that death means not having fought hard enough, I think of Ann and know that's not how it works.

She survived much longer than expected, and even on days when she felt sick, if you asked her how she was, she'd say, "Good." She'd lengthen out the word on bad days, but that was the only sign she often gave.

So yes, modify fighting metaphors when appropriate, and leave room for people who prefer a problem-solving approach, but don't tell cancer patients to talk openly about their "problem" while whispering about their fight.

Friday, August 26, 2011

Birthday celebration

Had a good "original birthday" on Wednesday.

Tennis clinic, dog walk with Deb, coffee at Starbucks, a little reading and writing, sitting at the computer watching the Facebook greetings roll in (only kidding, sort of, but it is fun), talking to friends/family, missing my parents but appreciating their wonderful lives, dinner out with Joe at Joe's Pizza and Spaghetti House in Northampton (Katie was working), talking to Ben on the phone, and then, back home, watching an episode of "The Gilmore Girls" with Katie.

And celebrating another year of life.

Tuesday, August 23, 2011

Wonderful weekend in Wellfleet

The beach at Maguire Landing in Wellfleet
There is nothing like a walk along the beach for letting the breeze blow all your cares away.

I took that walk on a beautiful long weekend in Wellfleet. We scheduled it so that all three kids could come; as they get older that gets harder to do, and it was such a pleasure to have them together.

We got a lot in: Sitting and walking on the beach, jumping into the still-cold Atlantic ocean, a walk/swim on the bay, a little shopping, a little hanging around, and dinner at The Beachcomber, a restaurant on the beach. Diane, David and Sam came later on, and we had a fire on the beach at night under a canopy of stars and made s'mores while watching the harvest moon appear like an orange apparition that changed shape as it rose in the sky.

Ben, me, Katie and Joe
We also walked over Uncle Tim's bridge, a wooden footbridge over a marsh leading to a path along the harbor. We stopped, as we have in previous years, to sit on a bench and enjoy the view of town across the water. We browsed through and wrote in the "bench book," left there by a local resident who started a tradition of visitors stopping by and writing in it.

I had made a face the day before upon mention of my upcoming birthday, and Katie had said, "Why wouldn't you celebrate another year of being alive?"

I thought of her words again in that beautiful spot.

There is a lot to celebrate.
Katie and Joe with the bench book
Views from the bench

Diane in front of Hatch's Produce.

Thursday, August 18, 2011

Bicycling becoming more of a breeze

Recently Katie and I went for a "real" bike ride, as opposed to the toodling around I did last time.

We went up and down hills to McCray's Farm in South Hadley, one of our favorite destinations (by car) when the kids were little. These were not killer hills, and they never bothered me before, but, as I said to Katie and Joe before we headed out, "I'm only 2 1/2 years old now."

At the first hill, I thought, "This is going to be too hard, I can't do it." But then I remembered a motto from my longer-distance running and biking days: Don't look too far ahead at the hill or you'll freak out. Look down and only a short distance in front of you, glancing up ahead from time to time. Of course you want to enjoy the view, but look around only when you're cruising along.

It occurred to me that this tactic of looking only a short distance ahead applies to most of life's challenges. When I got diagnosed, I thought, "I'll never be able to do this." The days when I was able to narrow my focus were the best days mentally.

Anyway, I got to McCray's with a little huffing and puffing, but no worse for the wear. Once there, we enjoyed the view, visited the animals for old times, and since it is after all a creamery, had ice cream.

On the way back, I thought how beautiful it is in the Pioneer Valley, not the intense beauty of the ocean or of high mountains but the calm beauty of rolling hills.

Last Sunday, when I was in the Boston area for my checkup, I cycled through more beautiful countryside when I took a ride with my college friend Rook starting from his home in Weston. It rained lightly on and off, but that was OK. We went almost 20 miles, and I really got into the rhythm and overcame the fear of falling left over from last summer when my balance was out of whack and I actually was falling.

We went through Lincoln and Concord, passing Walden Pond and other historic sites. As Rook said, it was hard to believe we were just 30 miles from Boston.

There were some small hills and one big one, and although I went pretty slowly, I didn't get off.

When I picked up speed or cruised along, I remembered why I had liked cycling so much. It's that feeling of being free, of flying along, of clearing your mind and of seeing your surroundings so much more vividly than when you're driving.

Tuesday, August 16, 2011

Monday report

I go to Dana-Farber for a checkup every five to six weeks now, and yesterday was my day.

Everything was good except for GVHD acting up a little in my liver, meaning I have to increase the prednisone again to 7.5 mg. a day. Every time I go down past this level, my liver function numbers increase slightly, causing me to have to go back up.

It could be much, much worse, but it's frustrating because I need to stay on several other drugs while I am on prednisone. I thought it was a bad idea to stay on prednisone too long, and Dr. Alyea said that while it's true at higher levels, many patients just have to hover in the single digits indefinitely.

Otherwise, my white blood count was normal at 8.1, hematocrit almost normal at 31.4 (normal is 34.8-43.6), and platelets up a little to 86 (normal is 155-410).

My assignment was to go to the U.S. Open and report back to him.

As for the optometrist who left that odd message Friday, it turns out that, given my mother's glaucoma history, he wanted me to schedule an additional test to measure peripheral vision so that we could use it as a reference point later.

He apologized for the alarming call.

No, I didn't really think my brain was going to ooze out through my eyeballs, and I did settle down and figure that it was something procedural. Yet I did want to advise him, but refrained, that if you want to call patients late on a Friday afternoon when they can't return your call, just say, "I wanted to schedule additional tests as a reference point given your history," rather than, "I need to talk to you about the film I took of your eye."

Why create any unnecessary concerns?

Friday, August 12, 2011

A little bit crazy

My mother and father both had glaucoma, and so my sister and I get our pressure checked regularly.

My father's was controlled by drops, but my mother had the misfortune of having been misdiagnosed by a trusted family opthamologist who said she had a cataract. Seeking a second opinion, she went to another doctor who told her she actually had glaucoma and that my mother, a painter, had already lost some of her peripheral vision (lawsuit followed, but the damage was done).

My optometrist did my regular exam this week. The pressure checked out fine. Then he took a photo of my inner eye to double-check and use for future reference. He showed me the photo, pointing out my optic nerve and my brain. I couldn't distinguish it very well, but I got the idea. Pretty cool.

That looked fine, too, he said, although it was close to a marker at which we would have to keep an eye out, so to speak, for glaucoma.

Merrily, I went my way, making an appointment for next Tuesday to do a contact lens recheck. Back home, I announced, "Hey, I saw my brain!"

This afternoon I went out for a while and came back to see a message late in the day from the doctor. He wanted me to call him to discuss the films he took.

I called him back, but he was gone for the day.

What the .....?

He leaves this at the end of the day when I can't get in touch with him when he knows my whole health history – not just my parents' glaucoma – and knows that I am supersensitive about everything? My heart skipped a beat.

I corralled Joe and told him the story.

"Great," said Nervous Nellie, a.k.a me, so named by my sorely missed wonderful nurse friend Vytas. "So what if my brain is about to pop out through my eyeballs or what if I really have advanced glaucoma and am beginning to lose my eyesight or what if....?"

Joe said to hold on, that if it was serious he would not just say casually to call back later, and that it was probably just a technicality or some other minor thing.

We went through several rounds of this before I finally gave it up ... sort of.

I still don't understand why a doctor would leave a message like that when he knows I can't get ahold of him and when he also knows I'll see him next week anyway.

I guess I'll find out when I call on Monday.

Thursday, August 11, 2011

Annoyed by weeds, appreciating flowers

And now for something trite but true:

In life as in gardening, acknowledge the weeds, but enjoy the flowers.

I have been telling myself this lately as the weeds in my garden have a field day. The flowers are pretty, too, and I have enough to make an arrangement for the kitchen table, but the weeds seem to cry out, "Pull us, pull us, or we will annoy you until you do."

As noted before, I am not supposed to pull weeds until I am off prednisone. My compromised immune system makes me more susceptible to inhaling fungus from the dirt, and since I've already been there, done that and had a fungal pneumonia excised from my lung, it's important to stay away.

But sometimes I can't resist, and I bend over and yank out a few, turning my head or holding my breath. (And then there's someone in particular who has to listen to me panic and ask "Am I going to get sick and die?" and who then reminds me that I probably breathe in worse things at the shopping mall...thanks, Deborah.)

My kids are supposed to weed, and they do, to a certain extent, but unless I had them out there for hours, it would never get done. I drive myself, and them, crazy by nagging them. Good Morning! Pull weeds, pull weeds!

And then, the darned things grow back. I asked a friend who has done it before if she would do a little weeding; she said yes but hasn't called back. It's probably not high on her list, and I can see why.

Finally I broke down and asked another friend who does work on the house if I could pay him to clean up the garden. He said sure, he could. He's scheduled to come in a few days.

I think it will be worth it.

In the meantime, on the positive side, I am enjoying the flowers on the table: yellow and white zinnias, pink and yellow snapdragons, and a hydrangea that I separated into clumps of blue, green and blue-green. Last year the hydrangea blooms were all blue, but this year they are blue, green and even a little pink.

The hydrangea is humongous this year, growing so tall and wide that it is threatening to become the hydrangea that ate the house.

I need to clip it back from time to time, or else I will have another problem to worry about.

Sunday, August 7, 2011

Running in loops

Running one large loop is no problem. Once you get half-way around, there's no point in turning back because, obviously, you would still have to go the same distance as you would by completing the circle.

Running smaller loops is a different matter. Unless you are in a rhythm, or unless you are extremely disciplined, you might be tempted, every time you come around to your starting point, to call it a day.

It presents advantages and challenges to people who are either starting fresh or who, like me, are trying to start again after a break due to illness, injury or some other reason. It's good that you have a place to stop and go back home if you just don't feel up to it, but not so good if you stop because you can't give yourself the extra push needed to keep going.

Beginning, or beginning again, is sometimes rewarding and sometimes just plain no fun. I guess it's like running, or life for that matter, in general. You have to slog through the bad days to get to the good ones.

I thought of this today after deciding to get up early and go for a run. I've been doing other things, but I haven't run in the heat. After healing from my stress fracture, I had built back up and set three miles as my basic run to build on after I felt comfortable with it. Obviously not a long distance, but long enough for me at this point.

Many people run to music, but I never did. I like listening to the sounds around me and letting my mind wander.

With so much to look at, running in New York or Boston is easier. But there's always something, first and foremost, of course, the sound and feel of your own footsteps and the rhythm of your breath.

Today the first loop around the lake (one mile) was fine, but as I neared my starting point I thought, "It's getting hot already, I did enough, I'm going home." But then I did a systems check. Feeling OK? Yes. Feet hurt? No. Out of breath? No.

So? Your excuse? Um, nothing. OK then.

I passed by my starting point and distracted myself by paying attention, exchanging greetings, and picking up bits of conversation.

Sun on leaves. Water rippling. Birds calling.

A couple comes around in the other direction. I say, "Getting hot already."

"At least you're wearing the right hat," he says, acknowledging my Red Sox hat.

Two college-age women speed past me.

"Oh my god," I mutter.

Correction: "Hey, you never ran that fast, anyway."

Behind me, a man tells a woman, "Somebody really hates me."

The students pass again.

They are laughing. One says, "...when I was running three hours a day..."

An older guy running about my speed comes along in the opposite direction. He gives me a big hello.

That's more like it.

The second loop done, I head back, past the bushes that smell like the beach, around the Mount Holyoke Campus a little, up some small hills. I have something left for the incline leading to my house and even  speed up, which is probably like my old slowest pace or even slower, but, again, that was then and this is now.

Home sweet home.

I drink water and eat a little watermelon, and then it's coffee time.

Wednesday, August 3, 2011

When do you stop playing the cancer card?

First of all, I know it's not a game, but that's the way many of us refer to it, partly in jest but partly seriously.

The question comes up when you have enough distance to wonder under which circumstances you might be tempted to use cancer as an 'excuse' for perceived weakness.

A larger question is at what point you stop mentioning it so frequently. This is not the same thing as 'playing the cancer card,' but I noticed that when talking with someone new the other day, I didn't even mention it when we discussed our running routines.

In a way that surprised me, because I am used to describing myself at least partially in the context of my medical odyssey. I was pleased that I had enough distance to describe myself in another capacity, i.e. runner.

 If I had provided any caveat, it might have been that I am coming back from a fractured foot rather than I am coming back from my fourth bone marrow transplant and a coma. (We did get onto the subject of stress fractures, and this die-hard marathoner had me beat, having already suffered four.)

I'm more likely to use the cancer card when playing tennis with good friends. I'll say jokingly, "Sorry I missed that ball, but I was in a coma not too long ago." I try not to do it often, because a little joking about that goes a long way.

 I thought about this today at our Wednesday clinic with George. It's like camp for grown-ups. We do drills for hand-eye coordination and racquet control and play little games before we actually get to play doubles. (It's a pretty inexpensive camp: More than three hours of drilling and playing on clay courts overlooking the Connecticut River for $10 each.)

In one of our games today, George placed a tennis ball on a pretty high post at the center of the net. We played mini-tennis (using only part of the court), and if you hit the post without letting the ball bounce, your team won the game.

I hit it twice, and our team won two games to one.

We reported our scores (and told him which of us on the three courts had hit the post) and sat down for a break. George said everyone was welcome to return at 6 for a similar clinic.

"Ha!" I said.

He looked at me quizzically.

"You New Englanders are all the same," said George, who happens to be one too. "You wait all winter for summer to come, and then all you want to do is sit inside your air-conditioned homes."

Hey George, we were outside right then in the heat, but what the heck.

Now that I write it, his comment sounds kind of harsh, but if you knew him you'd know not to take him too seriously and accept comments like that as part of the banter.

I didn't speak loudly enough to share this with the group, but I did lean over and say to him just as we were about to return to the courts, "People tell me I should try not to overdo it. You know where I came from."

He does know, because he helped bring me back each time.

He looked at me blankly.

 "You think I'm far enough past it that I should stop using that as an excuse?" I asked.

"Yes, anyone who can hit the post twice doesn't need to do that."

OK then.

Monday, August 1, 2011

Running after tennis balls

I still haven't gotten back into any running routine. I'm waiting for the heat wave to pass...whenever that will be.

But over the weekend I ran as much on the tennis court as I might have done around the lake.

On Saturday I played with Donna on the beautiful clay courts at the Field Club in Longmeadow. Our doubles game fell through, so we decided to hit together. After a while we decided to play some singles.

Way back in the day, I was a speedy singles player, but this is now. Still, it went really well. We both had fun and actually had some real singles points.

Running to the net on clay is so much easier. You hardly feel the stress on your feet. I surprised myself by how easily I got up there.

So there we were playing singles. When we stopped, we talked about how Donna had helped me come back on these very courts. At first she repeatedly reminded me to take only one step in each direction (so I would not fall.) Next time I was allowed to take two steps. And so on and so forth, until this past Saturday, there were no "rules" except to enjoy myself.

Once or twice I glanced over to the next court and watched the yellow ball float against the blue sky. I just loved the sight. Later we talked about how lucky we are to love this game so much. Of course, I said, I should have been looking at the ball on our court, but what can you do.

Yesterday I hit on the hard courts at Mount Holyoke College with a 21-year-old college student and former high school player who was nice enough to put up with me. Seth, my friend Nancy's son (they live in Syracuse, N.Y.) is working at Mount Holyoke for the summer. He's a really nice kid.

We hit for almost two hours. He was out of my league, but I think I gave him some good rallies and practice hitting overheads and serves.

I was getting pretty tired by the end, getting to the point when I should stop already. But I wanted to finish with a good rally. Most of us are like that, but there was an added layer here.

"Do you really need to exhaust yourself trying to impress your friend's 21-year-old son?" I asked myself.

The answer: Yes.

When I got home, I lay down on the floor.