Only then I did. I took vast pleasure in having this good, kind, witty, smart, handsome, and endlessly playful man (playful, so long as the play didn’t involve that game at the oyster bar) who would take me out to dinner and do the driving after. I could plan trips to places like Paris and Positano—the place I’d hauled my three suitcases up that long run of steps, alone, the summer I’d sent Doug packing, when the old Italian man had called out his question to me, “Where is your husband?”
After all those years, I’d found him.
I also liked the part about getting up in the same bed every morning with the same person at my side—a man I loved—and sometimes going out for brunch together on Sunday mornings, setting the New York Times on the table next to the fresh-squeezed orange juice and the plate of smoked salmon and bagels while we divided up the sections, looking up from mine now and then to share some interesting piece of news, or to tell about some new movie that sounded worth seeing.
For me—a woman who had long feared marriage, and then late in the game discovered its pleasures—marriage to Jim had meant comfort, pleasure, safety, ease. Marriage—this one, at least—allowed for the ability to make plans, see into the future and know whom I’d be sharing it with. All that, combined with my usual round of solo adventures, at the end of which he’d be there to pick me up at the airport and take me out on the town.
Then came the diagnosis, and in all my years of envisioning a relationship, I had never imagined a life like the one we lived now. I had not seen myself sitting in some doctor’s waiting room for the fourth time that week, standing in the bathroom injecting Lovenox into my husband’s hip or buttocks—wherever I could find a little fat for my needle. Soon there was none.
Sometimes now, I was angry. Not at Jim, but at life. I moved through my days with a chip on my shoulder, ready to take on whoever got in the way of getting Jim what he needed. I needed to be tough now. I hated it that this was so.
Pancreatic cancer is not an illness a person can readily take on alone. There needs to be another person, preferably one like me—pushy, demanding, relentless, all the traits of mine that had been among my least attractive in some other context. Now my ability to push hard—the same thing I’d done to get us through the crowds at the Hardly Strictly Bluegrass festival—was the reason we’d gotten the Boston surgeon, the better health insurance, the fecal transplant, the second opinions. I was tenacious as a dog pawing the dirt for a bone.
Sometimes, when Jim was in the hospital, if his nurse that night was late delivering his pain medication, I haunted the nurses’ station, checking my watch every thirty seconds to make my point. Jim was the lawyer. But I was the advocate. “I wouldn’t be alive without you, baby,” he told me. It was a heavy weight to carry, the knowledge that this might be so.
There was no going back. There was no place on earth I could run away to, where I could stop worrying about Jim.
Not all at once, but gradually, over the months, another revelation came to me: None of that other stuff, much as I’d loved it, was what made a marriage. Not restaurant dinners or romantic vacations. Not walks on the beach or visits to the wine country in the Boxster. Not oysters and martinis or moonlight over the Bay Bridge.
This was marriage. As uncomfortable and inconvenient and devastating as it might be to live as we did now, we inhabited this place together. I could register envy sometimes (daily, in fact) reading the Facebook posts of all those people I knew who were off taking trips and sailing in the bay, or visiting grandchildren. But comparing my life now to anybody else’s would accomplish nothing.
And here was the other part. As much as I hated what had happened to Jim, and to both of us, I had never felt closer to him. I would like to think we would have reached this place without the discovery of a tumor in his pancreas, but I wonder if we would have.
It came to me one day in one of those doctors’ waiting rooms, awaiting the results of some test or other, that I no longer viewed what we were doing now as some kind of departure from of our real life. This was our real life. I stopped thinking about the way I spent my days as an interruption of my work. This was my work.
As the months passed—endoscopies, infusions, blood tests, scans, hospitalizations, port flushes, infusions again—I could no longer fantasize as I once had about escape, because I could no more escape Jim’s illness than I could escape my own skin. There was no separating Jim’s story from mine anymore. Whatever it was that lay ahead, Jim and I would go through it together. Lying in bed next to him one night, I could hear the beating of a heart and no longer knew to which of us it belonged.
68.
That November we flew back to Boston for a scan to check—as always—on whether there’d been a recurrence of the cancer. It was an event we underwent often now. Each time, excruciating. Put the gun to your head, with a bullet in one of the chambers, and spin. Squeeze the trigger, see if you’re still alive after. If so, you’re free and clear for another three months, at which point you do it all over again.
We sat in the waiting room for close to an hour that day, and as we did so, I studied the people around us. It was never hard to know which person in a couple was the cancer patient. That would be the man whose neck was so thin now his shirt collar no longer touched his skin, or the woman whose pants hung like laundry on a clothesline, as if there were nothing inside them.
One in particular I remember—a woman a few years younger than Jim and me, from the looks of her, though it was never easy guessing the age of a pancreatic cancer patient. She was not a new patient evidently, because the staff all knew her. She had come with her husband and two daughters to receive the results of her most recent scan, or maybe an MRI. She sat there in her too-big Red Sox sweatshirt for a few minutes, holding her husband’s hand. Then the receptionist called her in.
I knew about visits like this one by now—the little rituals you perform, sitting on your hard plastic chair while waiting your turn, the bargains you strike to receive good news. If it could just be neuroendocrine … If his CA19-9 numbers can just be down under a hundred, if they will just tell us he can have the surgery, here are all the things I will do.
Waiting for a verdict, praying for a good one. Good having taken on a new meaning, of course: Good was hearing no bad news.
Jim and I were still waiting to see Dr. Moser ourselves—Dr. Moser and Dr. Mancias and the rest of the team—when the woman in the Red Sox shirt emerged from her appointment. One look and we knew: The news she and her family received must have been the kind every pancreatic cancer patient dreads above all else, the moment they learn the cancer has returned following a Whipple procedure. Or maybe a scan had indicated the presence of a metastasis that would now preclude the Whipple. Either way, the family had walked in the room looking anxious but hopeful. When they left ten minutes later, the daughter was crying and the parents could barely hold each other up.
It was a scene—or a variation on a scene anyway—I relived on many occasions. We were like passengers on the Titanic, hovering in the frigid night air of the north Atlantic, all hoping to get into the lifeboat.
Not that, quite. We were all of us travelers on the same impossibly rugged path—one that made climbing San Sebastián look like a cakewalk—but at different stages in the journey.
Every now and then you looked up and saw one of your fellow seekers falling by the wayside. When you did, it had the effect of witnessing a glimpse into your own future. Your possible future anyway. Today we would be spared news like what that woman and her family received. But who knew what tomorrow would bring? Or six months from now, or twelve, if we were lucky enough to even be here twelve months from now?
I looked at that woman and her husband—he, the one in my shoes, me the one in his—then looked away. It was as if I’d heard the sound of footsteps on my own grave. Or that of the one I loved, which was almost the same now.
69.
Over the months that followed Jim’s diagnosis, one of the things people often said to me
—both friends and strangers alike—was that I needed to take care of myself too, while caring for Jim. I lost count of the number of times some well-meaning friend would cite the example of the passenger on a flight in which turbulence occurs. “You have to put the oxygen mask over your own face first, if you’re going to be of help to anybody else,” they reminded me. Then they’d suggest a pedicure or a massage. Maybe a walk around the reservoir. All good ideas, no doubt, though seldom if ever implemented by me. The sorrows that surrounded me would not have been diminished by a visit to a nail salon.
For me, as a person who had spent her whole adult life telling about her experiences, it was impossible not to be sharing this one. But that fall and winter, and the spring that followed, were not a time for writing books, or articles even. I could not write a novel, I discovered, because I was so consumed by the real-life story we were living. Every time I’d start to consider an idea, my brain would turn instead to some thought I’d had about a new treatment or drug or doctor who might conceivably be helpful to Jim. This happened enough times that after a while ideas related to my own projects and dreams no longer came to me anymore, almost as if my brain acquired the habit of short-circuiting creative thoughts because the impossibility of sustaining concentration would leave me too frustrated.
Still, I had not stopped being a writer. Writing about what happened to me had become, for me, the way I made sense of my life. And so, many times over the months, I turned to the unlikely community of readers on Facebook to share the story of what Jim and I were going through. One day, I posted a long meditation on what it meant to be a caregiver.
I was calling out into the darkness with an unspoken question, awaiting some word of response, same as I always did. “Is it just me?” I was saying. “Is there anybody else out there who understands?”
So one day I posted this on Facebook:
When a person you love is diagnosed with cancer, the sense of sorrow and fear—for him—is so vast and consuming that to speak at all of your own losses is likely to come across (to your own self, first, and maybe to others) as pretty selfish and narcissistic.
“What right do I have to complain about anything?” says the wife of the man with pancreatic cancer, “when my husband is facing the possibility of death and the virtual certainty of pain for months on end? Perhaps forever.”
So, caregivers are supposed to put their own smaller sorrows aside. And mostly, we do.
But it has been my way—as a woman, but also as a writer—to speak of the kinds of human experience so many of us are taught to believe we should keep hidden. I am speaking here of those so-called “shameful” emotions like envy, anger, self-pity, vanity, pride—the moments I believe all of us experience in which we display our least heroic but possibly most human selves.
Over my many years as a writer, I have written about plenty of those moments in my own life: small vanities, large failures. I could name a few thousand inglorious moments I’ve chronicled over the years.
You could conclude from all of this that I am just a bad person. Or a deeply flawed, foolish and weak one, anyway, and no doubt I am all of those things on occasion. But it is always my hope, when I write as I do, that my words may reach someone out there—maybe some teenage girl, or some woman whose children don’t speak to her, or some boy who can’t tell his parents he’s gay—who has experienced his or her own brand of shame over the failure to live up to the standards of perfection or selflessness or nobility or simple “normalcy” we aspire to, and the persona so many others around us work so hard to maintain. I’d like them to know they’re not alone.
So I will tell you now that along with sorrow of the most profound variety over what Jim has been going through—and rage at the unfairness of it, for my husband—I sometimes grieve, and sometimes rage, on behalf of my own self too.
I think about the man or woman out there, reading my words, who may also be serving as the caretaker to a well-loved person as he or she confronts a devastating illness. I would never want to leave such a person believing—in the midst of his or her own struggle—that I am some kind of selfless hero who tirelessly tends to the needs of her ailing husband with no thought to any need of her own.
Sometimes I look in the mirror and the thought that comes to me is this shallow: Cancer has added ten years to my face. Sometimes I register impatience at how slowly my husband is walking, or the fact that he is too cold to have dinner outdoors the way I’d like, or the fact that we’ve had to cancel some plan I was looking forward to a lot because he isn’t up to it. Sometimes I want to jump in the car and drive away.
I never do. But I think these things.
I will now say what some people in this situation may feel unable to admit. I believe that however much we love someone, and despite the pledges we have made to her or to him, none of us gives up our individual personhood. I am Jim’s wife, Jim’s partner, the one he counts on to be here in his darkest moments—and I will be that person for as long as he needs me—but I am also me, the same person I was for the fifty-seven years before we met. Same as he is, at the end of the day, his own autonomous and separate person too.
The voice of that woman I was, who used to be in charge of her life, and is now ruled by an illness that does not reside in my own body, has not disappeared. It calls out sometimes, and sometimes it practically screams: What about me? Where did my life go?
Nobody understands this better, by the way, than Jim. Who grieves for my losses as he grieves his own. More so, sometimes.
One of the hard parts of these past nine months—not as hard as watching the man I love in pain, and certainly not as hard as being that man—has been the loss of something very dear to me: my freedom to do the work I love. More than anything—more, even, than my friends, or my children—the constant for me over the last forty-some years has been my ability to sit at my desk, open my laptop (or, before that, face my typewriter) and write.
I need to work. Lucky for me, I also love to work. And for close to a year now, it has been almost impossible to concentrate on anything besides pancreatic cancer for more than an hour or two at a time. Frequently less. Anyone who has ever loved and cared for a person with a serious illness will understand what I mean.
At the point we received Jim’s diagnosis last November I was nearly done with the revisions of a novel due to be published the following spring. Then everything stopped in our lives—Jim’s work, my work, so many of our plans—as we got to work fighting this disease and figuring out how best to vanquish it. Months passed in which I did not set foot in the room where I write. All that long, hard winter and well into the spring I did not open the manuscript of my novel.
In the end I managed to finish it. But I don’t think I’ll be starting anything else for a while. My mind is somewhere else.
I wish I could say I never complained about this to my husband. But I did. Because he is not simply the reason for my sorrows, but the man I go to when I need to talk about them.
This morning as I write we are back at the hospital to clear one of the frequent blockages Jim experiences in his bile ducts. (Next week it will be something else.)
And I—a woman who used to say she couldn’t take an hour off for lunch—now interrupt my life, day after day for cancer. No, I do it for Jim.
Sometimes I rail against all this—rail against cancer, rail against hospitals, rail against the loss of my freedom to work, my freedom to go swimming in New Hampshire last summer, my freedom to be happy and carefree with the man I love, the disappearance of our dreams. But the larger truth is, I am here. This is not the experience I wanted, but as with every other experience in my life, I do not intend to sit this one out, or to pretend for one moment that it isn’t happening.
This is my life, and at the end of the day, I don’t want to miss a minute of it.
70.
For many people, it turned out, that Facebook post touched a nerve.
Though my words appeared nowhere but on Facebook, and to nobody but
the readers who found me there, the reaction to my words was intense. A great many readers, including many who’d never visited my page before, shared the post. Many people wrote to thank me for my words, and—if they were living the life of a caregiver themselves, or had done so in the past—for acknowledging a truth too seldom mentioned in the world of cancer treatment.
But there were others who expressed shock and anger over what I’d written. For a woman whose husband was suffering a life-threatening illness to admit to resentment or frustration was unacceptable, as it had been even to one of my dearest friends. Some people who wrote to me in the aftermath of my posting those words chastised me in particular for how guilty I must be making Jim feel when I spoke of the losses in my own life, brought about by his illness.
Maybe I’ll never know the truth. But what I believed to be true was the same thing I had believed all my life, long before Jim’s diagnosis. Long before knowing Jim, I believed in telling the truth about what was going on in my life. No experience is so terrifying, I’ve always said, once you turn on the light, and take a hard, clear look at the thing that most terrifies you.
There could be no pretending to Jim that I did not miss my old life—consumed as I was with my worries about his.
All I knew to do about that problem was to talk about it with the person closest to me in the world. That would be Jim.
We had shared so much over our time together. Now we shared this.
“I know how hard it is for you that you aren’t writing any books at the moment,” he told me. “But one day you will tell this story.”
71.
A letter in the night from my friend Deborah, known to me only through the connection of e-mail and the telephone, and the shared experience of loving a man with pancreatic cancer. From the time stamp on the e-mail I gathered she’d been up at three A.M., as I often was on my own coast.
The Best of Us Page 23
