24 November 2009

Me, You, Bullfighters & the Biscuit:
Living 'All the Way Up'

PROMPT: A memorable quote from a book, movie or interview. See where it took me...

This Thanksgiving week marks the end of my dealings with doctors and hospitals for the year (I hope). The end of January, it starts over. This is the pattern of my life for the rest of my life. I can't change it, but I'm going to try in these few months off to learn to think about it differently. Maybe I'll get lucky and my feelings will follow my thoughts, because I want to live "all the way up."

In Ernest Hemingway's novel The Sun Also Rises, one character says to another, "Nobody ever lives their life all the way up except bullfighters." I want to be a bullfighter (minus the animal cruelty).

The gist is that bullfighters face death every day, and that makes them live differently. It's often been cited to explain why Hemingway's characters and Hemingway himself may have been so adventuresome and often reckless. If you can stare death in the face or even laugh at it, then you get a rush of some sort, and sometimes you get hooked on that rush.

I heard this Hemingway quote last night in a segment of American Experience on PBS about the legendary racehorse Seabiscuit and his hard-luck jockey Red Pollard. Both horse and man, linked, overcame incredible odds--and ridicule--to achieve grace and greatness. Pollard's daughter recounted how her father was someone who kept coming back, who lived his life "all the way up," like Hemingway said. I want to be a Seabiscuit or a Red Pollard.

It all reminded me of a passage in Anne Lamott's book on writing, Bird by Bird. When Lamott's friend Pammie was dying, Pammie's doctor told Lamott, "Watch her carefully right now, because she's teaching you how to live." To me, what Lamott goes on to describe is the true meaning of all the way up: "To live as if we are dying gives us a chance to experience some real presence. Time is so full for people who are dying in a conscious way, full in the way that life is for children. They spend big round hours."

I had a bout with thyroid cancer four years ago this month. I was never anywhere close to death. I had two surgeries and my surgeon hid the incision so well in the existing wrinkles at the base of my neck that no one, me included, could find it six months later. Most thyroid cancers grow slow and are easy to treat. They remove the gland, lace some iodine with radioactive material, and the patient drinks up. Thyroid cells suck up iodine like kids do candy on Halloween, so the radioactive part of the cocktail kills any cells the surgery missed--theoretically anyway. You don't lose your hair, the pain is mild and short-lived, you're only toxic to people and small animals for about a week (!), and most people never have a recurrence.

But there are downsides: (1) You become identified to both health-care workers and others as someone who's had cancer and is therefore more likely to have it again, and (2) finding a hormone dosage both you and your doctor can live with will become the scourge of daily life.

Once you've had cancer, doctors go into attack mode. I'm not saying I don't want them to look out for me; I just wish they could understand how the way they do it ripples through the rest of my life. They scrutinize labs and follow up any blip with various imaging procedures. A small shadow of something on one sort of scan calls for other scans and appointments with specialists to interpret results and rule out worst possible scenarios.

Days to weeks go by while you wait to hear those results. Weeks to months pass while you wait for an appointment with a specialist. Going back and forth to the hospital for tests lulls you into living in the zone of "worst possible scenarios" when nothing could be further from the truth.

Through it all, you try not to worry that some microscopic something inside of you might be trying to do you in. You don't feel sick, so maybe you start to mistrust your feelings as well.

Most people don't know what to say to you, so some will say things that, though well-meaning, make you feel worse. Other people find reasons to isolate themselves from you, as if they could catch what you had. Some of those will cling to reasons other than their own fear of death to explain their withdrawal--that is, they blame you, if only in a veiled way.

You worry most about the people closest to you--a spouse or partner--because of what "being strong" for you is doing to them. And you'll be cranky, because somewhere in this mix you'll be angry about pretty much everything--and that's normal.

These are stages experienced by most people with a chronic illness or a serious injury. What’s unique to thyroid cancer and nobody gives much thought to is that the thyroid gland is your body's furnace, except now you don't have one. Sure, there are pills to make up for it, but it's not the same, and no one prepares you for how this will impact your daily life.You spend a considerable amount of time either hypothyroid or hyperthyroid--never feeling exactly normal again.

Hypothyroid is where the doctors want you for treatments and some scans. You'll be very tired and have trouble waking up from sleep. Normal body functions slow way down, you'll be cold a lot, and all this will make you irritable.

Most of the time, though, they'll want you hyperthyroid, which is standard for deterring the growth of cells the nuclear cocktail missed. It's where you'll live most of the rest of your life. It will make you very tired, too, but this time, because you can't get or stay asleep. Body functions speed up, you'll be intermittently hot and cold as your body frantically tries to compensate for the swings, and all of this will make you--guess what?--irritable. Maybe even aggressive. It's a lose-lose.

In the midst of my last round of tests, which started in August, I dreamed I was a hostage in "The Thyroid Zone." Sounds like a plot for a sci-fi thriller, I know. In the dream it showed up as a title on the cover of a book. I wrote about it today to remind myself it’s okay to laugh about it. That's probably why I dreamed it. I needed to vent.

I should be glad I'm alive, you say, and believe me, I am! In the midst of the madness, I experienced fleeting moments of great presence: Moments when I watched simple things--like my husband undress or a squirrel nibble a crust of bread, and my heart pounded with the sheer beauty of it! They were moments I might have missed if not for "The Thyroid Zone."

Now that I've lived there a little, I want more. I want to live all the way up more often than not.

The small shadows that keep appearing and disappearing inside my neck reflect the nature of neck lymph glands, which are chiefly for drainage. Doctors will pore over mine the rest of my life, looking for anomalies. So far, all that’s turned up is my gaping need for perspective. I need to let the uncertainty I can’t escape teach me how to live those big round hours Lamott talks about because, as she so succinctly puts it, "the truth is we are all terminal on this bus."

The truth is, we can all strive to live all the way up without illness or injury or bad luck. As I see it, we are all bullfighters already. We are all Seabiscuit. We are all down-on-our-luck jockeys looking for our next best ride. The truth is, as long as we're here (and then some, I think), we always have at least one more chance and we may as well keep trying to get it right.