Living It

On Friday morning, I interviewed a very cool physician for my master's project. He's so cool that I am hoping to do a separate story entirely about him someday.

For one thing, he doesn't wear a suit or even a tie. For another, he doesn't wear a white coat. For a third, he insists, approximately one second after you meet him, that you call him by his first name.

At the beginning of the interview, I explained my interest in the topic, which has to do with caregiver-patient relationships. I told him, briefly, about my first go-round with breast cancer, about starting J-school, about my original master's project (which was on an entirely different but related subject), about my second go-round with breast cancer, and finally about my dad's recent illness.

I described the past year, as well as 2001, as "medically intensive."

He put it better. He said I had been "living medicine," not just writing about it.

Too true.

After I left his office, I rode the elevator two flights up to interview yet another doctor.

And then I rode the subway home and tried to force myself to sit down and write the second draft of my master's project—the one that had been due the previous Monday and for which I'd gotten a week's extension. This was the new, pragmatic Jody—the one who surrendered to reality and tried to follow her academic adviser's advice: "Take every extension you can get."

I was feeling horrible about the draft. After working on it all this time—five months so far—I still didn't feel like I had a handle on the story. Or I had too much of a handle on the story and couldn't find a way to tell it simply and dramatically. And suddenly I could see all of the holes in my reporting—all of the things I would have to fill in between the second and third drafts, eating up time I already didn't have.

My top priority for the months leading up to my return to school was to finish my master's project before the semester even began, to give myself the breathing room I knew I would need for the all-consuming weeks ahead. When my dad's surgery and complications made that impossible, my revised goal was to do a first draft that was so complete and polished that the required second and third drafts would be formalities—just opportunities to polish the piece and maybe do a small amount of re-reporting just for the exercise.

What I wanted to avoid at all costs was having to do substantial reporting between the first and second drafts and to have to do any reporting between the second and third drafts. I just wanted to get the thing done. Done well, of course, but above all done. Because I had such a mountain of other assignments to get to that finishing the master's project wouldn't make the rest of the semester easier—it would just make it slightly less impossible.

But when I got home from the interviews on Friday, I knew I was completely screwed. My second draft would suck. It wouldn't even address some of the feedback—important feedback—I'd received from my master's project adviser. I would spend all weekend working flat out, and it wouldn't matter. I'd gotten an extension, and it didn't help. And turning it in would give me no relief because a few weeks later I'd have to repeat the whole exercise again. The prospect was so overwhelming that I just sat here, at the keyboard, and despaired.

A phone call interrupted my self-indulgent misery. It was my mom calling—reluctantly, because she knew that I was trying desperately to apply my nose to the grindstone—to let me know that my dad had just been rushed from the rehab facility to the hospital.

Let me pause to say that there is something very, very wrong when your mother is hesitant to call you with such news.

How in the world had I come to elevate the importance of this assignment to the point that it even entered my mother's brain before she dialed my number?

I have some reckoning to do.

In the meantime, I left the keyboard and headed to the hospital, which is about an hour away. My sister happened to be en route from Massachusetts for a surprise visit, so she met us there. Fortunately, my dad had pretty much stabilized before I had even gotten to the subway, so I did not have to ride in a complete panic.

If he had not been fairly stable, I'm not sure what we would have done. The paramedics had to take him to the nearest emergency room, which happens to be in what appears to be a fifth-rate hospital. I have now spent a lot of time in hospitals, with my dad, with Zach, as a patient myself, and as a reporter. Based solely on emergency rooms, this was the worst I'd ever seen. The nurses were pretty good, but the doctors inspired no confidence whatsoever. Several of the medical residents appeared to be older than I am, which made no sense at all.

The place was LOUD. Some of the noise came from equipment being wheeled around and from monitors beeping, but most of it came from various patients, who moaned or shouted or cursed or cried.

My dad was one of 25 patients in a very crowded space. He at least had a parking spot-like place of his own. Several patients were on gurneys in the hallways. Others were relegated to chairs. When the place got really crowded, a security guard enforced the visiting hours—10 minutes per hour—and kicked us out, dispatching us to one of two inhospitable waiting rooms until the the 10-minute window opened again.

Inside the ER, there was no place for visitors to sit, so we appropriated empty patient chairs whenever we could. Most of the time, we had to stand at my dad's bedside. He was just as uncomfortable, so we raised and lowered the back of his bed and tried to re-position him as effectively and as often as we could. In the rehab facility and in every other hospital, he had had a minimum of three pillows, sometimes four or five, arrayed under his arms and behind his head and back. One made the trip with him in the ambulance, and we used that as creatively as we could. We asked for others but were told that there were no pillows in the ER. We were given rolled-up sheets instead.

When we weren't with my dad, we sat in waiting rooms where televisions blared and icy breezes blew in through the automatic doors. We ate Munchos from the gift shop and tried to get service on our cell phones. On Friday, my sister and I were accosted by two different and equally unstable patients. We were also reprimanded by another security guard for using a passageway to get from the main waiting room to the ER. We were supposed to go outside and walk around, he said.

After that, we lurked in corners of the building, trying to evade security guards and crazy patients in equal measure. Yesterday we foraged for food outside the hospital, finding only a cornucopia of fast-food outlets. Meanwhile, my mother befriended the clerks in the admitting office and begged them to find my father a bed. We had tried to get him transferred back to the original hospital where he'd spent so much time—the first-class hospital with all of his doctors and records—but had been stymied by bureaucracy and by the fact that all of this was happening over a weekend.

Back in the ER, the paramedics continued to arrive with new patients. The EMTs who had transported my dad kept stopping short when they saw him.

"He's still here?" they asked my mom. "Can't you get him transferred?" They seemed almost apologetic. They didn't know that the woman in the bed next to my father's had been in the ER for two days.

Finally, last night, a bed became available in the post-ICU unit upstairs. It took another 90 minutes for my father to be moved.

He had been in the ER for 30 hours.

We waited outside while the nurses got him settled in the new unit. There was no waiting room, but we gathered three errant chairs and sat together in the hall. Finally, we were able to go in and say good night.

He has a nice spot, a curtained-off area in the corner of a large and fairly peaceful space that looks a lot like a post-surgical recovery room. There are eight patients in all. He is second from the left.

My sister drove me back to Brooklyn, and I picked up a burrito for dinner—my first real meal of the day. I sat down on the couch, with my plate on the coffee table in front of me. I turned on the TV and looked to see what was waiting for me on TiVo.

I scrolled past the first two entries on my "Now Playing List," then hit "Select" and "Play" on the TiVo remote. I cut into the burrito and took my first bite as the newest episode of "ER" appeared on the screen.

I sat back and watched.

Ascending the Throne

For about a week now, I have been counting down the days to graduation. The magic number today is 83.

Forget about PMS, IVF, or any other hormonally charged time in life—they are no match for the J-school. I have been having mood swings that, were they attached to a bat, would obliterate the single-season home-run record into the 24th century.

A few days ago, I extracted a promise from Zach that he would, every day until graduation, persuade me all over again why I shouldn't just drop out.

That sounds dramatic, I know. And I'm not a drama queen. Wasn't a drama queen.

But it's all angst, angst, angst these days, and ridiculously so. The important things in my life are going well. It shouldn't matter if school is a nightmare.

But somehow it does. So when I am not falling apart about a story or a deadline, I am as resentful as a teenager, finishing my assignments with clenched teeth and and a perma-scowl.

This is not a successful strategy. I have way too many deadlines left to get through on disgruntlement and bitterness alone.

It's just that I am having a hard time embracing this atmosphere as part of the learning experience. A friend of mine described it as boot camp, and that's not far off. My reaction? My character doesn't need any more building right now, thank you very much.

Zach would say that I'm giving this place, and these people, too much power over me. And he's right. It's just that even with the corners I have forced myself to cut, I am constitutionally unable to turn in craptastic stories and feel OK about it. I don't care if none of it ever gets published—it still has my name on it, it's still about real people, and I feel a deep responsibility to do them justice in my work.

I know that that's what will make me a good journalist. But it is making me a miserable journalism student, one that is questioning the entire enterprise and beginning to look fondly upon the prospect of artisanal cheesemaking as an alternate career choice.

And I already have one graduate degree that I don't use. I certainly do not need another.

Haiku Returns

School is relentless.
Eighty-six days still to go.
Why did I do this?

Sorry/Grateful

About five years ago, shortly after I finished all of my original treatment, I was asked to speak to a group of medical students about my experience as a breast-cancer patient. I was one of three panelists, each of whom represented a different demographic. I was the "young" patient.

The first thing I said to this group of a hundred or more students was, "A good doctor saved my life."

I said it a second time, for emphasis.

A good doctor saved my life.

And then I proceeded to tell them about my gynecologist. She had been my doctor since December 1988, except for the three years that we lived in California, so she knew me well.

Every time she examined me, at least once and sometimes twice a year, she took careful notes. In January 2001, I was seeing her again for the first time since we had moved back to New York two months before. This time, when she did the exam, she noticed a subtle difference between my otherwise identical breasts.

She looked back at all of the previous exam notes she'd taken over the years. None of them reflected any kind of asymmetry.

And that was it. That's what prompted her to send me for a mammogram, despite the fact that I was a year away from the recommended age. And that's what ultimately led to my initial diagnosis, and then to my revised diagnosis, and then to all of my treatment, and then to almost four cancer-free years.

If she hadn't paid close attention during that exam, and every other exam she'd ever given me—well, I don't like to think about that.

But she did.

More than one other doctor subsequently marveled at the fact that my gynecologist had detected anything at all. In fact, she didn't even know what she had detected. She wasn't even worried about it. She just knew it was something that should be checked out, even if the odds were overwhelming that it would turn out to be nothing.

She didn't take a chance. And that meant I had every chance.

I saw my gynecologist today for a routine check-up. At the end of the visit, as she was leaving the exam room so that I could get dressed, it occurred to me that I hadn't thanked her often enough. I started to tell her that—that I hadn't thanked her often enough—but I immediately got choked up.

I'm sure I caught her by surprise. We had been having this lighthearted conversation up until then, and suddenly I had gotten all serious, and then I had gotten all teary.

I suppose it is awkward to be acknowledged for saving someone's life, especially six years after the fact, because she gave me a self-effacing sort of a smile and then waved me off and backed her way out of the room.

I know that some of that awkwardness stems from the fact that despite her clinical skill, despite the subtlety of the finding, she still could not spare me from this disease. I know this because we had a long talk after my first diagnosis, when I was second-guessing my doctor in California for not detecting the cancer sooner, even though it had almost certainly been undetectable six months earlier, when I'd seen him last. We talked about how natural it was to try to find an explanation for the unexplainable, to try to find someone who was to blame.

It was then that she confessed that she'd been unable to forgive herself for not finding the cancer during the three years I had been in California. It was a completely irrational thought, and she knew it—not only hadn't the cancer been detectable, I hadn't even been back to see her in all that time—but it haunted her nonetheless.

I can only imagine how she felt when I told her about the second diagnosis a year ago.

It is a strange thing to be grateful to someone who feels guilty about the very thing you are grateful for. But it is so hard to make sense of any of this, really. Sometimes I think it is foolish even to try.

Corners, Not Quite Intact

People talk about being "in the zone," that place in which inertia takes over and everything is just effortless—in which it feels like it would be harder not to run another five miles.

If there is such a place, I have yet to find it.

Instead, I am in a mode in which everything is a struggle, in which I feel like I have to propel myself from one second to the next in some kind of desperate attempt at perpetual motion.

It is fruitless, of course. Still, I feel breathless in a way that would have other people turning to drink or drugs, either to prolong the feeling or to blunt its relentless tug.

The way I see it, my only chance is to project-manage my way to graduation (92 days and counting). I've got to map everything out—every assignment, every task, every deadline—and then operate like some hyper-efficient machine to get them all done.

And I have to be strategic.

That means choosing stories less because they are fascinating and more because they are practicable. That means doing writing exercises on subjects that require the least amount of time and effort to report. That means going against every element of nature or nurture that shaped my personality and made me always gravitate to the most difficult and challenging way to do anything.

And that means cutting corners if I have to.

Not ethical corners—I neither would nor could do that (Hi, have we met?)—but the other kind. The kind that never let me turn in anything other than my best work. The kind that prompt people to say, "You know this is all pass/fail, right?" The kind that made me the go-to person in my past professional life.

For the first time, I am working down to reasonable standards instead of up to my own.

It is purely self-preservation, completely necessary, and utterly unfulfilling.

But if I want to graduate in 92 days, it must be done.

Lest You Worry

I am fine.

My dad is fine.

Everything else is irrelevant.

It's just that "everything else" has kept me from posting for almost a week—the longest I think I have ever gone.

I have tried to borrow or even steal time to do it, but I have found no stockpiles from which to skim.

And this doesn't even count, because this isn't a real post. It's an excuse for a post—for several posts, really. And I have a strict policy against meta-posts like this, a policy I am chagrined to be breaching right this very second.

But these days, when someone hasn't heard from me in a while, she or he is likely to assume the worst. And I wouldn't want you to do that.

(posted by Zachary for Jody)

Caveats Elucidated, Part One

As promised:

Zach flew in last weekend not only to see me after a four-week hiatus (note that I am employing industry lingo, which is entirely different than corporate-speak), and not only to celebrate the last of a year's worth of Herceptin treatments, but also to be with me for my first meeting with one potential successor to MOSWO.

There is another potential successor to MOSWO. I had a consult with him a couple of weeks ago, but it wasn't a big deal to go on my own, because Zach and I knew him from way back, when he and MOSWO worked at the same institution, and we already knew he was great.

Neither of us had ever met this other doctor, but MOSWO had suggested her as another option, and since I barely tie my shoes without a second opinion these days, I made an appointment. And then Zach booked a plane ticket.

Fast-forward to last Thursday, the day before the appointment—and the night of Zach's arrival. I had been out of the house all day, visiting my dad and going to class and attending mandatory lectures up at the J-school. I got home around 10PM. When I did, the light on my answering machine was flashing. It was a message from a secretary at the cancer center—someone I'd never met.

Apparently, the doctor I was supposed to see the next day was going to be out of the office, and I'd have to reschedule my appointment.

Inconvenient, perhaps, but not the biggest deal in the universe. It wouldn't be hard to coordinate a new appointment with Zach's next visit home. And if it was, if going by myself turned out to be unavoidable, so be it. As far as I was concerned, this was an audition, and I was the casting director. (See? More lingo!)

Then I heard the rest of the message. The upshot? Since the doctor—the doctor of record, that is, at least for the moment—wasn't going to be in, and therefore wouldn't be able to examine me and then write the specific orders, I'd also have to reschedule my treatment.

Until sometime the following week.

After Zach had left.

That did not exactly go over well with me. Nor did the fact that the message was time-stamped 12 hours earlier, especially given the fact that my cell phone number is all over my medical chart, and we were talking about the next day.

It took one message that night and two conversations with the secretary and a conversation with MOSWO's nurse practitioner the following morning to resolve the situation. I am not proud of the fact that I cried during the conversation with the nurse practitioner, to the point where I had to hand the phone to Zach. And by "not proud," I don't mean to imply that I manufactured the tears for purposes of manipulation. I just mean that behaving like a three-year-old with a quivering lip was not my finest, let alone most age-appropriate, moment.

It turns out that the tears played no part in resolving the situation. Deploying the words last and flew in from Los Angeles are what made the difference, I think. In the end, some very nice oncology fellow, to whom MOSWO was a mentor, agreed to examine me and write the orders for the Herceptin.

So we went in, I had blood drawn, the fellow examined me, I had the treatment, and we left. Maybe it would have felt more momentous if MOSWO had been there, or if we'd actually gotten to see the other doctor, or if I hadn't fallen apart a few hours earlier.

I'll never know.

Bereft

In the fall of 2001, in the midst of our first go-round with breast cancer, this was still a household of six: Zach and me, plus the family of four cats that had been with us, at that point, for 10 years.

The matriarch of the family, a gorgeous Siamese named Brittany, came to us with a daughter, whom we called Normandy. (We had gone on a big trip to France the year before.) Brit, in a surprise development, also turned out to be pregnant upon her arrival, and soon had three more kittens, of which we ended up keeping two: Bistro and D'Artagnan. All of this happened before Zach and I were living together, and while they began as his cats, it was clear that, before long, they'd be ours.

Zach and Brit had a particularly close relationship. Once he found out that she was pregnant, he made all of the appropriate preparations, including putting together a whelping box for her in his bedroom. She ignored it for weeks.

Then, one night, she climbed in. She started meowing, loudly, in a way only a Siamese could, and Zach began stroking her fur to soothe her. This went on for a long time. Long enough that Zach started to doze off, more than once.

Each time his eyes closed, and his hand stopped moving across her body, Brit would let out a meow that jolted him back awake, back to his midwifing duties. He comforted her throughout the night, until the last kitten was born, and watched as she licked the three tiny creatures clean. Then, finally, he went back to sleep.

Brit was the Grace Kelly of cats: beautiful, demure, slender, and effortlessly regal, even without a Rainier of her own to make it official. She was the alpha feline of the house, and we adored her.

A decade after the kittens were born, almost exactly, Zach brought Brit in to see the vet. He had been petting her one day and noticed a bump on her undercarriage.

I don't know where I was that day. I do know that I wasn't with him when he carried her to the vet, nor when he sat in the waiting room while they examined her. But he told me about it later that day. How someone came out from the back and broke the news to him that she, too, had breast cancer.

Up to that point, Zach had been a rock. For eight months, from the moment I told him about the biopsy through the first diagnosis, through all of the consults with all of the doctors, through the mastectomy and the revised diagnosis, through the chemo, the reconstruction, and the radiation treatments, his support and his fierce optimism never flagged. Whatever fears or doubts he had, he held them back, held them in tight, buried them so deep that I saw nothing but love and determination in his eyes, heard nothing but confidence and strength in his voice.

But when he heard about Brit, Zach lost it. Every emotion he had been suppressing came surging out, a torrent of pent-up grief and anger and worry and dread.

The poor veterinarian could not have known how combustible Zach's psyche was that day, how emotionally exhausted he was after so many months in the cancer trenches with me. How unprepared and ill equipped he was to hear even one more piece of bad news, let alone devastating news, let alone this devastating news all over again.

Six weeks ago, that story came rushing back to me in my own emotional-dam-bursting moment.

I had gone in to see MOSWO (my oh-so-wonderful oncologist) for a routine check-up before a scheduled Herceptin treatment. He had recently "graduated" me to seeing him only every nine weeks, so we had some catching up to do. In my case, that mostly meant updating him on how my dad was doing, telling him about the saga of the last couple of months. I also told him about getting ready to return to school the following month, about how Zach was doing out in L.A., and about the state of our house in Phoenicia.

I think all of MOSWO's patients adore him. He's the closest thing to a 21st-century Marcus Welby that you are likely to find on this planet—an excellent physician, yes, but also an exceptional human being.

Among all of his patients, though, I think I may be his greatest fan. It doesn't hurt that we have a lot in common, including houses in the country, a love of the theater, and a worldview that values people and feelings over power and money. We're also contemporaries, which provides an easy cultural shorthand for our conversations. And he and Zach are great pals. If, in that alternate universe of which I'm so fond, I'd met him in college or at a cocktail party or on a vacation somewhere, I have no doubt that we'd have become lifelong friends.

Instead, I met him in a hospital, and we became partners of an entirely different kind.

I was devoted to him from the start. When MOSWO told me, a few months after we'd met, that he'd be moving from that hospital to a different cancer center, I barely let him finish the sentence. He had started to lay out all of my options, but I didn't need to hear them.

"Is one of them going with you?" was all I wanted to know.

It was, and I did.

Since that time, he has seen me through a lot—more than he or I ever could have anticipated. I think my re-diagnosis was almost as difficult for him as it was for Zach and my family and me. There is no one else who could have guided us through it the way he did.

So when he sat me down six weeks ago to tell me that he was leaving the cancer center, I expected a reprise of the conversation we'd had five and a half years before. He'd start to tell me my options, and I'd cut him off and volunteer to follow him wherever he was planning to go.

When he told me that he was leaving practice altogether, that he was going to work on behalf of cancer patients in poor countries, that I would need to work with another oncologist, suddenly I was Zach in that waiting room at the vet's office five years ago. This façade, this emotional house of cards I'd been keeping up for the past few hyper-stressful months, just collapsed. The weight of my dad's illness, of Zach's absence, of the pressures of returning to school, the pain in my joints, the abject exhaustion I'd been feeling, the endless work on the house in Phoenicia, the medical bills to be paid, the insurance claims to be filed, and everything else with which life had been pummeling me—all of that rushed to the fore. I could take all of that, it seemed, but not one thing more. And certainly not this.

I kept it together long enough to finish the conversation and to get dressed and go outside for a bite to eat before my treatment began. But as soon as I was down the cancer center steps, I called Zach, and I just bawled. Into his voicemail, as it happened.

A fog of woe had descended, enveloping me for the next several weeks. My emotions remained raw, refusing to scab over. Most of the time, I felt like a puddle. Finally, a friend explained it to me.

I was in mourning.

And she was absolutely right. MOSWO's departure was a loss, and I was grieving, in a way that I hadn't for my own, more personal losses—of my breast, my ovaries, my fertility. Of all of the time breast cancer had taken from me—past, present, and future. Of the luxury to be careless and carefree. Of my identity.

I am feeling better now. The news has sunk in. School is distracting me. Life is hurtling along.

But I am still in mourning. I know because yesterday was my last Herceptin treatment. And even though Zach flew in for the occasion, even though everyone in the treatment area made a fuss, even though we celebrated by bringing gifts for the nurses who have been taking care of me all year, I could not rejoice.

MOSWO was not there. And I missed him.

Liveblogging From Treatment Central!

In Jody's last treatment, the Herceptin appears to be turning her green:



Or perhaps that's just the limited white-balancing capabilities of the camera in my Treo.

No matter the colors. This, after a very looooong year, is what a final treatment looks like!

WOO HOO!

Fluffed and Folded

With two caveats that I'll elucidate in a future post, I'm very pleased to announce that tomorrow is scheduled to be the last treatment in my yearlong course of Herceptin.

Zach is on his way home right this minute so that we can celebrate this milestone together.

In preparation, I have done a load of cold-water wash so that you-know-what are at the ready.

Feel free to wear your own pair of celebratory unmentionables in solidarity!