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.

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.

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.

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.

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?

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.

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.