Monday, January 28, 2008

Hi, I'm Jody, and I've Had Cancer

I was musing this morning about the fact that Zach and I are knee-deep in the process of getting our lives back on track in what we hope (hello, Fate!) is The Era After the Era of Misfortune.

And I was feeling grateful for the fact that although we are contending with some tough stuff (like trying to climb out of the crater that used to be known as our finances), it is nothing like contending with a bad diagnosis, or yet another surgery, or regular dates with an IV bag full of poison.

And it dawned on me that recovering from cancer is like other forms of recovery—the kind that typically follow an addiction of one sort or another.

I am not comparing cancer to, say, alcoholism or drug abuse.

But I am saying that the process of recovering from cancer is just that—a process—and those going through it might well benefit from the same kind of structured programs that help recovering alcoholics or drug addicts.

In fact, I'm surprised that there hasn't been some kind of national or international movement toward such a program, especially given the popularity of blogs and Internet forums and, of course, traditional support groups, where cancer veterans share their stories and offer their own strategies for dealing with life during and after cancer.

But perhaps that's because large-scale survivorship is a relatively recent phenomenon—advances in screening and detection and treatment have turned many forms of cancer into curable or at least chronic diseases. There are now an estimated 10 million cancer survivors in the United States, and that kind of critical mass is starting to get attention.

The National Cancer Institute has an Office of Cancer Survivorship, which is co-sponsoring the fourth Biennial Cancer Survivorship Research Conference later this year. And there is a burgeoning new medical specialty that focuses on this population and its particular issues.

Still, I think there is a need for something at the grassroots level—a kind of halfway house, minus the house, for that period of re-entry that immediately follows the end of treatment. That's the time you are expected to parachute back into your life, except that the "after" version of you doesn't necessarily fit so well into the "before" picture of your life. And there are all sorts of practical things to deal with that can easily overwhelm: maintaining your health, resuming your relationships, returning to work, regaining your financial footing, and getting to know your possibly new and probably not improved body, for starters. It's like the aftershocks that follow an earthquake: they're less dangerous but can wreak more havoc because you're not prepared to deal with them.

It is just as much of a transition to go from patient to veteran as it is to go from healthy person to patient. The difference is that a cancer diagnosis automatically triggers a whole team of people to help you through it—doctors, nurses, social workers, family, and friends—whereas the end of treatment is, by definition, an anticlimax.

It's the milestone that you and your team have been gunning for. But once you reach it—no matter how spectacularly you celebrate the triumph—the assumption is that you're finished. The crisis is over. Everyone can return to their regularly scheduled programming.

And by and large, you are on your own.

Saturday, January 26, 2008

What's Yellow and Square and Kind of Sticky?

It's been a month (or so) since my rheumatologist had me halve the dosage of my anti-inflammatories, and I just got the OK to give them up entirely.

I'm taking a moment to focus on the fact that it's been almost exactly 18 months since my sudden-onset joint pain began, the result of acute estrogen withdrawal following my otherwise uneventful oophorectomy.

A year and a half is a long time to be dealing with a side effect, even if meds made it fairly manageable after the first month or two. That's the length of two pregnancies, half the duration of law school (or J-school, in my case), or one NHL season (or does it just feel that way?).

It's so long that it becomes the norm, and you forget that things ever were, or could be, different. And by "different," of course I mean "better."

But different has returned! Better is back!

Our "cause for celebration" threshold is pretty low right now, but this would qualify under any circumstances.

At the very least, I'm going to put another Post-it® on the wall. It's been a few months since the last one went up, which was a couple of months after the one before that.

I'm hoping the intervals will be much shorter from now on.

Tuesday, January 22, 2008

In a Normal Year (Whatever That Means)

In a normal year, Zach and I would be spending our January (and, let's face it, early February) evenings writing out the New Year's cards we'd spent weeks creating.

We love doing this—coming up with a cool concept and design, figuring out the copy, and then writing personalized little notes to the friends and family we wish we saw more often.

Last year, we put together a great card but ended up sending out only a fraction of our usual number—a compromise we had to make in the face of all of the circumstances that were extenuating at the time.

This year, we thought we'd be able to return to our usual practice and had even sketched out an idea for the card.

But soon we realized that we just couldn't manage it, no matter how attached we are to the tradition. Time and money and energy—especially energy—are in short supply, and we've really got to ration.

We've made our peace with it, as we have with so much else of late. But tonight I couldn't help but think of the cards I had hoped to be writing this month.

Instead of jotting messages of good cheer, I've been writing thank-you notes—long-overdue thank-you notes—for all of the kindnesses we received following my dad's death.

They have been easier to write than I had expected, and I am filled with renewed gratitude for all the love and support that has come our way. I've tried to convey that to each person as best I can.

Nearly all of these notes will go to friends and relatives who would otherwise have received our New Year's greeting. Fortunately, they have small envelopes, and I don't expect that anyone will mistake them for one of our exuberant holiday missives, the way I mistook condolence cards for seasonal greetings a month or so ago.

I am reluctant to tempt fate, but I do hope our New Year's cards will be back in 2009.

And that our exuberance returns long before that.

Saturday, January 19, 2008

Fault Lines

Zach and I are approaching the three-year mark on The Era of Misfortune, throughout which we have been beset by a streak of illness, death, and straight-up bad luck so relentless that it has bordered on the farcical.

I am not by nature a superstitious person, but I find myself of late hesitating to utter (or write) sentences that begin with, "Zach and I are planning. . . ." It seems as though every time we resolve to do something that might be considered forward progress, lightning bolts take immediate aim at our heads and unleash another round of destruction.

Nevertheless, we do appear to be—at least momentarily—between health crises. (I sincerely hope that sentence contains enough hedging to prevent Fate from even noticing, let alone being tempted.)

That means we have been able to turn our attention to other matters: items that simmered along while we dealt with all the truly important stuff and are now threatening to boil over any second.

My old boss had a term for this. In one corner of his desk he kept something called "the bite-me pile." Every single item in that stack could, at any time, turn around and bite him because he hadn't yet taken care of it. And he hadn't yet taken care of it because he was busy handling truly urgent matters.

Sometimes things found their way out of the bite-me pile only after they'd bitten him—typically when his boss or some other higher-up called to ask why something hadn't been done. Sometimes, when all the emergencies had momentarily subsided, he was able to tackle the pile in a more ordered fashion and "get out in front" of this item or that.

At the moment, life seems like one enormous bite-me pile. I cannot think of one area in which I am not egregiously behind.

And while I see small bits of progress, there is a gaping chasm between where I am today and where, even with repeatedly lowered expectations, I'd like to be. That goes for everything from big-ticket items like family and career to prosaic concerns like getting caught up with e-mail and phone calls and all the reading I want to do.

I'm sure that some of my angst is affected by the overwhelming uncertainty around us: the election, the economy, the environment, the general instability in the world.

But much of it comes from within. The tectonic plates of our lives have been shifting so much these past few years that it's been impossible to find solid footing. And this perpetual upheaval has diminished not just my energy and enthusiasm and determination.

It has also, in some undeniable way, diminished me.

Tuesday, January 15, 2008

Stats

As part of a work project today, I had to scour the blogosphere for breast-cancer blogs.

I went straight to Technorati, which tracks all things bloggy, and got a bunch of great leads.

While I was there, I checked to see if this blog is being tracked.

It is, in fact.

Along with 23 other blogs of the exact same name.

That's 21 more than I found the last time I went looking for homophonic blogs.

Turns out that Technorati currently tracks 112.8 million blogs, and that 175,000 new ones are created every day.

What's amazing is that the site also ranks the blogs it tracks, and this blog somehow charts among the top 4%.

That sounds pretty grandiose until you find out its exact ranking.

It's, well, um . . . it's 4,446,976th.

To Know Thine Enemy...

...is the first step to defeating it.

A guest post from Zachary to say that I'm fine, really, although I'll be typing with nine fingers for a few days.

The culprit in this case was a Benriner brand mandoline ("as used by Rachel [sic] Ray!"), and I was using it to slice some onions up for carmelization.

Please note the CLEAR INSTRUCTIONS, stamped into the plastic on the mandoline in English and Japanese, which I failed to heed (click the image to enlarge):


One is never too old to learn, I suppose. No matter how you slice it.

Monday, January 14, 2008

I Squeam, You May Not Squeam

Zach had a small household mishap this evening involving a mandoline (the kitchen tool) and the tip of his right ring finger.

He was the one who was hurt.

He was the one in pain.

He was the one bleeding (not profusely, thankfully).

Yet I had a near breakdown.

I'm not sure if it was the mental image of the mishap (I didn't witness it, fortunately), or the yelp he let out a split-second after impact, or the momentary prospect of visiting yet another emergency room.

Whatever it was, it incapacitated me for several minutes.

I had to sit down for fear that I might faint.

I burst into tears.

I fumbled through our first-aid supplies in something like a state of shock. Zach—aka the injured party—had to talk me through opening up gauze packages and tearing off strips of adhesive tape.

If he had needed real medical attention, I have no doubt that I would have been able to snap out of it. I could have gotten us to the ER and dealt with everything that that entails.

But for whatever reason, for about 10 minutes I was laid out by some kind of acute PTSD.

I'm fine now. Just wiped out.

And somewhat bewildered by the whole experience.

Tuesday, January 08, 2008

For This Cancer Patient, Accuracy Goes a Long Way

May the wonders of 2008 never cease—I actually read the Science section of today's New York Times today (as opposed to, say, six weeks hence).

My eye naturally fell on "For Cancer Patients, Empathy Goes a Long Way."

Hmm.

Is there anyone for whom empathy does not go a long way?

Are there people out there who prefer to be misunderstood? Or to be treated callously?

My mystification only grew when I read the article.

It's not really about how much empathy helps cancer patients. Instead, it's about how doctors—in particular, oncologists—are less than adept at displaying this trait. The story is based on a study of doctor-patient interactions in which the patients all had advanced cancer.

The headline might more accurately have read "For Cancer Doctors, Empathy Takes Practice."

Or "Empathy Elusive Among Cancer Doctors."

Or, you know, something that conveyed the actual subject of the piece.

Lest you fear, the story wasn't entirely discouraging:

"The good news, [researchers] said, is that most doctors can be taught to respond in more helpful ways."

But let's not set the bar too high:

"Brief, empathetic responses will suffice."

Thursday, January 03, 2008

Happy Birthday to Me

My entire head appears to have been colonized by some kind of mutant germ.

I have a sinus infection, an ear infection, conjunctivitis, and intermittent laryngitis. I'm coughing, sneezing, and blowing my nose in three-part harmony, minus the harmony.

Whoever heard of a 41-year-old with an ear infection????

So much for a happy and healthy new year.

Or birthday.

Or 15th wedding anniversary.

Or vacation, which is what we are ostensibly on.

Oh, and I just fell asleep—and began snoring—in the midst of this post. I doubt I'd have woken up before morning if Zach hadn't nudged me.

You have won, mutant germ. I surrender.