Whose Cancer Is It, Anyway?

What do you call the person who holds your hand during a cancer diagnosis? What do you call the fiancé who picks up your medication, the friend who makes your favorite meal, the sister who changes the dressings on your surgical incisions?

Traditionally, these people are called caregivers. An odd blend of nurse, parent, therapist, cook, workhorse, and peer, caregivers play an integral role in a patient’s recovery from cancer. A caregiver can improve medication adherence, nutrition, quality of life, and more.

As part of the upcoming Ken Burns series Cancer: The Emperor of All Maladies, PBS has released a number of short videos on www.cancerfilms.org. One video features actor Ken Jeong (of The Hangover fame) speaking about his experience caring for his wife, Tran, during her treatment for breast cancer.

As the video progresses, Jeong recounts how he channeled his anger about Tran’s cancer into his over-the-top performance as a rage-aholic gangster in The Hangover. He remembers his tearful tribute to her at the MTV Movie Awards as “probably the weirdest acceptance speech at an MTV awards show.”

Then he says something that breaks my heart: “She’s the one who went through the hardship, not me. She’s the one who truly suffered.”

I’ve heard so, so many caregivers say this. I’ve said it myself. It’s common sense, right? The patient has it the worst. A caregiver just stands on the sidelines, shouting encouragement and making cups of tea. But the truth is more complicated than that.

The truth is that caregivers suffer hardship, too. Caregivers, in giving their all to help a person they love, often find their reserves of energy and strength deplete right along with the patient’s.

And cancer caregivers can have equal, or ever higher, rates of anxiety post-cancer compared with the patients themselves. A recent analysis of a cluster of studies found that anxiety levels 2-10 years post-diagnosis “grew to as high as 28 percent in patients and 40 percent in their spouses.”

I've been both the caregiver and the patient. In 2008, my then-boyfriend, now-husband, Matt, was diagnosed with non-Hodgkin lymphoma. Both in our 20's, we got a crash course in life with cancer during his treatment with surgery, chemo, immunotherapy, and radiation. We swapped roles in 2012, when I was diagnosed with breast cancer, and was treated with similar tools.

During Matt’s cancer treatment, I sat in the chemo ward with him, and accompanied him to every appointment. But our experiences, though parallel, were not the same. He spent nights all alone in the hospital, and endured more pain than I can imagine during radiation, when he couldn't speak or eat solid food for several weeks. I sat with simmering rage as doctors spoke about him, not to him, while he contentedly played a video game called Spore (the purpose of which is to evolve into a stronger and stronger organism…paging Dr. Freud).

When it was my turn, we followed a similar pattern–nearly always together, witnessing the same events but often gutted by different details.

"Don't say 'mets'," he once begged me, referring to my habit of casually shortening the word "metastases." "It makes it sound like you’re friends."

"But that’s what they’re called," I replied.

He shook his head.

Having been in both positions, I have to say that there are certain parts of the cancer experience that are emotionally worse for the caregiver. There are also lots of parts that are worse for the patient. But the sum of it is a trauma that patient and caregiver often experience together. To me, that means the experience doesn't belong to any one person. This point is beautifully made in Harvey Pekar and Joyce Brabner’s book Our Cancer Year.

So how to convey all of that in a single adjective? I guess "caregiver" is fine, though it doesn't communicate the immense emotional burden of caring for a family member with any disease. (A caregiver could be a visiting nurse once a week, or a friend who moves across the country to live with you during treatment.) I’ve heard “co-patient,” but it just seems inaccurate. I like the idea of “co-survivor,” because it conveys the shared experience, but I, like many other patients I know, have issues with the word “survivor.”

That leaves room, then, for altering the cancer lexicon. What word do you like?