These Things Accumulate

"The Clearing," by Robert and Shana ParkeHarrison

“The Clearing,” by Robert and Shana ParkeHarrison

It’s difficult for me to write about cancer. The irony of that statement is that cancer is the topic du jour; my family’s recent experience with cancer, and particularly my fiancé Jaylan’s brain cancer, which has outweighed every other concern in my family’s collective life for nearly two and a half years, is the impetus for this column in the first place; which is to say that, when invited to write regularly for Bark, the only thing I could commit to thinking about regularly was cancer. I wish I could think of other things. Barring that, I wish it were easier to write about cancer.

Others seem to do it well, or at least, prolifically. Type the word cancer followed by the word blog into your search bar and Google will deliver no fewer than 250,000,000 results in .21 seconds. It seems everyone is writing about his or her experience with cancer. Women write about what it’s like to transition from being a person with breasts to one with tumor-laden breasts to a newly breast-less person, and they write about loving the color pink, or hating it. Parents write about their children’s struggles with leukemia and bone cancers, describing the particular challenge of making choices about their children’s care when pursuing anything but the standard of care may lead to courtroom battles with the state, which has predetermined the “right” path for minors undergoing cancer treatment. Men explain with veiled insecurity the way that the hormone therapy prescribed for their prostate cancer emasculates them; they wax courageous:

“Now, I’ll tell you straight up, no doctor ever sits you down and says, ‘Son, to cure you, we might have to kind of turn you into a woman.’ I suspect that some men would almost rather die than have hot flashes and larger breasts.”

Results can be filtered by type, by age of diagnosis, by aggregate – “The Best Cancer Blogs of the Year,” for instance. Google Trends shows cancer as the sixth most trending topic today.

In a survey of cancer blogs, a pattern quickly emerges: I/my loved one was diagnosed with a form of cancer. Here is how we suffered. We learned things. We won and lost battles. This is how it ended, finally, or for now.

Of the current six most viewed blogs on the New York Times “Well” blog, three are about sex; how many of the “most viewed” would have to be listed for cancer to break into the list. Six? Ten?

Some relevant statistics from cancer.org:

  • 14.5 million: the number of Americans with a history of cancer who were alive on January 1, 2014.
  • 1,658,370: the number of new cancer cases expected to be diagnosed in 2015, not including a few cancers that aren’t required to be reported to registries.
  • 589,430: the number of Americans expected to die of cancer in 2015. That’s 1,620 people per day. 67.5 per hour.

It’s easy to get lost in the numbers, and I do. How can one person die from cancer in this country every minute of every day, all year long? I heard somewhere that for every baby born, seven stars explode.

On the day of his diagnosis, the doctors told us that Jaylan likely had about one year to live. Jaylan was nearly twenty-nine years old at the time. That day was twenty-nine months ago.

The numbers mean nothing, and they mean something.

The numbers mean nothing. People are not statistics. As individuals, we are not numerically reducible, though we are finite; though we may fit into numerically described categories, our value may not be measured quantitatively, and statistical outcomes applied to an individual life cannot possibly take into account the number of permutations created by the variation of circumstance. Doctors, in other words, don’t know when you’re going to die. They just don’t. Don’t pay attention to the numbers.

On the other hand, the numbers are meaningful: There’s a very good chance that every person who reads these words will have already been affected by cancer in some way. Maybe it came to you in the form of an acquaintance from high school who died of cancer, unimaginably, just a few years older than you are now, throwing you unexpectedly forward into a new age bracket: the group in which it’s possible to be diagnosed with a deadly disease, and to die from it. Maybe it came to you in the form of a beloved family member; maybe you are now a primary caregiver. Maybe it was your own body that betrayed you, and you know viscerally what I am describing only vaguely. Maybe, like me, it was all of the above.

If you have no personal connection with cancer, reader, then it is my sincere wish that it remain so. But chances are, you or someone you are connected to have a cancer story to tell.

Someone who’s telling not only her story of cancer but the story of cancer is Susan Gubar, author of the 2012 Memoir of a Debulked Woman and ever since, the New York Times “Well” blog “Living with Cancer.” Scrolling through Gubar’s nearly three years of regular, often weekly entries, reveals her work in “Living with Cancer” to be at once personal and universal. Whether you are a caregiver, a patient, or a parent, grieving the loss of your loved one or the multitude of limitations that cancer has introduced to your life; whether you seek information about the process of drug trials, validation of the emotions or symptoms you or your loved one experiences, or direction about the relative wisdom of drinking alcohol while undergoing chemotherapy; whether you feel positively or negatively about your hair, your scars, the recommendations of others, advocacy groups, and those ubiquitous ribbons, Grubar has written a column for you.

In my struggle now – to explain, to demonstrate, to illuminate – I find that Grubar has written columns for me, as well.

Grubar’s earliest post of “Living with Cancer” written nearly three years ago, and one from this past January, examine one of the many disorienting aspects of cancer: the language used to describe it. In the former, “Not a Cancer Survivor,” Grubar articulates, in sharp focus and in far fewer words than I’ve already expended, the problems posed by words like “survivor”:

Does the celebration of the triumphant cancer survivor cast those who died from the disease in the role of victims who somehow failed to attain the requisite resiliency to overcome it? An American propensity to circulate stories of valiant individuals triumphing over great odds must make people coping with recurrent, chronic or terminal illness feel like duds.

In the more recent post, “Coming to Terms,” Grubar returns again to the failure of language to tell us who we are in relation to cancer. She writes, “The paucity of the language at my disposal stymies me, as does its obfuscations.” The term in question here is “maintenance,” as in, the thing you must practice, when you have cancer, in order to continue to be. Like “survivor,” the word “maintenance,” Grubar argues, “does not shed much light on the situation.” At the time of her writing, maintenance for Grubar meant the continuation of an experimental drug.

Reading Grubar, I am comforted and disturbed. Here is a woman brilliantly and cogently unpacking the minutia of life with cancer, as the name of her blog implies. I recognize my experiences in hers; indeed, having had many of the same conversations her blogs explore, I find in Grubar a close companion. On the other hand, I hope that years down the road, Jaylan and I are not still struggling with what to call all this; I hope that years from now, we are not struggling to name ourselves. Mostly, I simply hope for years and years.

In the meantime, Jaylan and I, like Grubar, like 1.6 million more Americans this year, are steeped in this stuff, constantly working to make sense of it all.

It often feels necessary to have some kind of a ready answer, a sound bite to use in response to the attempted small talk others initiate about cancer, a topic I find it impossible to talk small about.

“How’s Jaylan doing?” people ask. Not long ago, I would have responded with unsolicited verbosity because it seemed impossible to answer any other way. I would detail the research I’d found, rattle off polysyllabic, Latinate drug names with the fluency of a chemist. I found it impossible and inaccurate, simply to say “Fine, thanks!” when others asked, out of collegiality or kindness, but with limited time or concern for my response. Nearly two and a half years on, I still haven’t figured out how to distill a precise answer, but “Fine, thanks” is more accurate than it used to be. Jaylan actually is doing fine.

“Some of the vocabulary swirling around cancer,” Grubar writes, “leaves me feeling what I never wanted to feel or unable to think what I need to think.”

Cancer, I think, leaves us with clichés. “Survivor.” “Maintenance.” “Fine.” Loss piles up in the wake of these words, creating a universe of grief and grievances I hoard for lack of knowing how to give them away.

When cancer is a part of your life, even those who know your feelings intimately, who care about you the most, lapse into clichés. They mean well. They want only to access your experience for the purpose of empathizing as much as they can.

Recently, I caught up with an old friend, which meant summarizing the past few years of illness and sorrow.

“But you cherish every day,” she responded, the statement landing like a question. Her voice carried a tone of self-soothing. Two and a half years into life with cancer, I didn’t want to self-soothe, nor did I hesitate in not soothing her in return.

“No,” I replied.

It wasn’t for lack of knowing sorrow that my friend had such faith in platitudes. But in the way I was experiencing then, she hadn’t known grief. It seemed that grief, for her, was a follow-up, a response, indicative of a moment of present pain but past events, which belief led comfortingly to the next platitude; that with time, pain subsides.

In a letter once and then in a poem, a different, particularly insightful friend wrote of grief: “Some words mean nothing until they come to you.”

A journal entry from 2014 begins this way: On March 27th, I began mourning my relationship with Jaylan.

We were side by side on the plane that day, Jaylan and I, separated by an armrest, a sense of propriety that wouldn’t allow for making a scene, and our own privately held suffering. The air between us was tense.

Are you ok? He had asked, in a voice that implied he didn’t much care to hear the answer.

Yes, I lied, matching his tone.

I didn’t tell him how I felt I was doing my best – had been doing my best all along, and getting better at it, too. I didn’t want to answer truthfully in case it would reveal to the young businessman in the aisle seat, busy flipping through his dossier on aerospace solutions, that Jaylan had cancer and that the cancer was, for today, ruining our lives. I felt I couldn’t tell the truth without making Jaylan feel bad, feel less than; that is, although I felt that cancer was ruining our lives at the moment, I didn’t want to lay that burden on Jaylan, as if he weren’t already feeling limited, inadequate, cared for more than was dignified – taken care of. I didn’t want to reveal myself to be selfish, needy, or incapable of the necessary level of compassion and self-denial that caring for someone with cancer often seems to require. So I lied. And I grieved.

I grieved the tension, the stress, and the reasons for all that anxiety, the tangled network of currents leading back to the source: cancer. I grieved the ruined day, and my lack of appreciation for what were so clearly the good things in our lives at that moment, among them that we were alive, we had the use of all our limbs, and we were being flown, by the endless generosity of my parents, to San Francisco for a weekend getaway and visit with my brother and his fiancée. I chastised myself for complaining and being difficult, and then I grieved my lack of ability to just let myself feel however I felt.

Grief, I know now, is a daily part of life with cancer. It neither negates nor prevents joy; nor does it seem ever to recede. It is common to talk about grieving the loss of loved ones after they are gone, as though by convincing ourselves not to grieve until death occurs, we might avoid taking a single moment for granted. It is not so.

Recently, I heard about a photo sharing app targeted at health care professionals. Called Figure 1, the app allows health care professionals to share and comment on (non-identifying) photos of patients. (They must also obtain consent). Reviewed in an episode of the newish podcast, Reply All, the Figure 1 app is likened to an Instagram of medical horrors. The hosts of Reply All attempt to come to terms with what seems to be the exploitative nature of the app, explaining that:

Gradually, people who work in medicine . . . learn how to feel enough that they’re still human, but not to feel so much that they’re overwhelmed and can’t help their patients. They develop a way of talking about the world as they see it. And they mostly keep that language secret from the rest of us. Because we won’t understand it – and we don’t want to understand it.

The argument seems to be that too intimate a knowledge of medical problems creates distance as much as familiarity. From where I sit, steeped in two and a half years of the experience and language of cancer, this seems absolutely true.

There are other truths, too. Some of the platitudes do resonate, particularly the ones that describe life as a rollercoaster or a pendulum. The comfort in those metaphors, I know now, is that the rollercoaster undulates into perpetuity; the pendulum swings forever. There are valleys and mountains, and over a long enough ride, they may feel equally distributed.

I often find myself climbing out of the valley as soon as I’ve begun to notice the depth of it.

A few hours after we deplaned that March afternoon in San Francisco, Jaylan and I found ourselves on the Blue and Gold Fleet ferry tour of San Francisco Bay. The sun filled the water with sky, the ferry clipped cleanly along, and I felt something in me soften and release, buoyed by a sense of expanded time and space. Momentarily, we were not the couple whose lives were being ruined by cancer. We were like every other couple, shoulder to shoulder, listening carefully to the recorded narration, turning our heads with dutiful interest to see the old cannon turrets in the low, squat building on the shore beneath the bridge, the hulk of the U.S.S. Jeremiah, the thick cables that held up the Golden Gate and could wrap around the Earth’s equator three times.

Fathers leapt around the boat, photographing their children who stumbled across the deck on weak sea legs, and mothers leaned back against the hard benches. Gulls rode peaceful currents of air just out of reach. The captain reminded us not to feed the gulls – it was illegal, he said, and they would bite. And keep an eye on your children, he urged. The water could turn rough at any moment.

How I try to avoid rough water. How it finds me anyway. How I grieve.

2 Comments

  • -Wow! This piece slayed me. Especially this “I hope that years down the road, Jaylan and I are not still struggling with what to call all this; I hope that years from now, we are not struggling to name ourselves. Mostly, I simply hope for years and years.”

    -My mom was first diagnosed in 1991. She’s still alive. She still has cancer. For a long time, and sometimes still, people correct me when I describe her cancer state. “You mean, she’s a survivor,” they say when I describe her illness as “chronic” or “in remission.” Because, that’s what the media teaches us about cancer. Either you die or your survive. We don’t hear about the stories when someone lives a long life with the disease constantly in the background, foreground, to the side–but always there.

    -My family has had many more years with my mom than we first hoped to get. And we are still angry. And we still grieve. And the big C word seem to always be present in our existence as a family. And there are moments when we forget all about the disease and are just a family. Those are the moments I love most.

    • Nicole says:

      Asa, thank you so much for sharing your family’s experience. I think coping with chronic conditions is, as you say, a hidden narrative. As Grubar mentions, we honor the survivors and grieve the loss of those who have passed. I think we often ignore those struggling over the long term. I’m happy to report that today’s MRI was stable, which makes three since the cessation of chemotherapy!

      I continue to struggle with the language of it. On a FB message board, people use language like “so and so ‘earned’ his wings today.” EARNED. I can’t even. There have been unexpected gifts of insight and peace along the way, but a lot of small things do make me angry! It’s good to hear I’m not the only one. Thank you, friend.

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