Who’s your rock? And gravel…

By Caitlin Kelly

If you’re going to somehow get through a frightening time in your life — whether it’s health, work, family, marriage, kids’ issues — you need a rock, someone you can turn to who’s as firm and solid as a boulder, something steady and calm to lean against and take shelter behind, a fixed point you know will be there the next day and the next and the next, no matter what happens.

As I got my breast cancer diagnosis — ironically, sitting on rocks at the edge of the Hudson River in the New York town where we live — my husband Jose had just left for work in the city on the commuter train. I sat in the June sunshine alone absorbing this news, delivered by phone by my gynecologist.

 

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Those vows include, for better and for worse, in sickness and in health…Sept. 2011

 

Since then, as he has been throughout our 18 years together, Jose has been my rock. For which I’m so damn grateful and so damn fortunate. He came with me to every meeting with every doctor, (and there have been five MDs), listening and taking notes as a second set of eyes and ears. I’m not a person who cries easily or often — maybe a few times a year — but in the past five months, have done a lot of that. He’s stayed steady.

There’s an old-fashioned word I really like — character. Jose has it. I’d seen it on multiple occasions as we were dating. I wanted it in my second husband, that’s for damn sure.

 

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So lucky to have had the kindness of this fantastic team!

 

Then there’s gravel, a poor metaphor perhaps, for the pals and acquaintances whose love and sweet gestures have also proven hugely supportive, through letters, cards, calls, texts, flowers and even gifts. None of which I really expected.

Some live in distant countries. Some are editors I’ve worked with for years and have still never met. Some are women I went to school with decades ago. All of whom stepped up.

There were several putatively close friends I assumed would check in — and who proved wholly absent. That hurt. But it happens, and you have to know, especially with this disease, some people will flee and totally abandon you.

The most depressing thing I heard this summer — and it truly shocked me — is that some cancer patients have no one at all to turn to. No family. No friends. I can’t imagine facing the fears, pain, anxiety and many tests and treatments without someone who loves you sitting in the waiting room with you, driving you to appointments, holding your hand.

I recently got a call from a younger friend facing her own crisis, and was so honored and touched that she called me. I try to be a rock for the people I love. Sometimes I’ll fail them, I know.

But that’s what we’re all here for.

Be the rock.

 

Or be gravel.

 

But be there!

20 days later…done!

By Caitlin Kelly

 

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With their permission — the team whose kindness and skill got me through; Left to right; manager of clinic, Katrina; tech Yadi; Dr. Andrews; nurse practitioner Amara; receptionist/scheduler Khaleila and tech Susan.

 

I got to ring the gong today!

It’s the lovely ritual — some hospitals use a bell — with which patients mark the end of treatment. Jose, as he has for so much of this summer, came along to keep my company, to and celebrate.

It was a day of teary good-byes as well. Who would cry leaving a hospital clinic? If the team was as kind and fun and funny as mine was…you would, too!

 

caitlin hits gong

 

I had been  heading to our local hospital every morning for 20 days, the time prescribed for radiation for my left breast after surgery. I had a lumpectomy on July 6 removing all cancer, but this was considered a standard course of treatment to make sure nothing minuscule remained.

It began with a simulation, which was uncomfortable and disorienting, and also included weekly X-rays and a weekly meeting with the radiation doctor, a woman I liked a lot.

For the sim, I lay on the long narrow table while the team decided how to position my body and practiced it.

At the sim, they also gave me eight minuscule black tattoos — barely the size of a freckle — three on my front, five on my back — so the techs could align my body into position each time using laser beams. (It’s all stunningly space age.)

 

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The entire machine pivots around you. The blue rubber ring is where I placed both my hands, my face in the cradle.

The actual daily treatment was painless and quick , once the two technicians shimmied me into precise position on the table. I lay face down, with my left breast dangling, to minimize radiation to my heart and lungs — about 24 seconds per side.

Here’s a link to the website for the machine, a Varian Trilogy.

The machine is enormous, and you get used to hearing it whirring into position, with a sound sort of like running water, as it pivoted to one side, then overhead, and down to the other side of my body.

With my face in a cradle, and my arms in a sort of V-shape above my head, I saw only peripheral flashes of light, heard a buzzing noise, and felt nothing.

The hardest part, initially, was the strain on my tight left shoulder staying immobile in that position.

The techs were always extremely kind and upbeat — apologizing every time they had to move my body into position and (gently!) move my other breast out of the way. They always placed a heated blanket over my bare back, put a scented strip beneath the cradle for my head and played a variety of music during the procedure.

Sort of a spa, I joked!

 

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It’s enormous!

 

The clinic staff did everything possible to make it less frightening. There’s a huge fish tank in the waiting room and free coffee and tea and snacks and piles of new magazines and a television you can mute.

You can sit as long as you like before and after treatment, and there are never more than two or three people waiting.

I’m lucky that ours is a small suburban hospital and not some enormous, bustling big-city facility.

I never felt like a number, but a human being.

Of all the tests and treatments my body experienced this summer, this was in some ways the easiest since at least it was non-invasive — and, luckily, I don’t need chemo.

 

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I have no idea what these numbers mean. It’s all quite mysterious.

 

But, by the end, I was done; I was really tired and my skin sore, itchy and irritated.

I got to know several other patients, as we all came at the same times every day. There’s a powerful sort of intimacy in a space like this. We don’t need to say much or ask probing questions. We can share a hug or an eye-roll.

We all arrive unwillingly, alone or with a loved one.

And we all pray for the best possible outcome.

Exposing oneself to millions

By Caitlin Kelly

Thanks to a reader here, I decided to pitch one of my earlier blog posts as a larger, reported story about medical touch — and my own experience of it — to The New York Times, and it ran today, prompting many enthusiastic and grateful tweets.

Here’s the link, and an excerpt:

It started, as it does for thousands of women every year, with a routine mammogram, and its routine process of having my breasts — like a lump of dough — manipulated by another woman’s hands and placed, albeit gently, into tight compression. It’s never comfortable, but you get used to it because you have to.

Unlike previous years, though, my next step was a biopsy, for which I lay face down, my left breast dangling through a hole in the table. Several hands reached for what’s normally a private and hidden body part and moved it with practiced ease, compressing it again into position for the radiologist’s needles, first a local anesthetic and then the probes needed to withdraw tissue for sampling.

I was fearful of the procedure and of its result and, to my embarrassment, wept quietly during the hour. A nurse gently patted my right shoulder and the male radiologist, seated to my left and working below me, stroked my left wrist to comfort me. I was deeply grateful for their compassion, even as they performed what were for them routine procedures.

 

It is decidedly weird to out one’s health status — let alone discuss your breast! — in a global publication like the Times — but it also offered me, as a journalist and a current patient undergoing treatment,  a tremendous platform to share a message I think really important.

 

I hope you’ll share it widely!

 

 

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Every patient needs to be touched kindly and gently

Have you seen The Alienist?

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By Caitlin Kelly

Dark, brooding, scary and addictive.

This ten-part series, set in New York City in 1896, is a compelling adaptation of the book by Caleb Carr — an “alienist” was the word used then for a psychologist. The plot follows a grisly and brutal killer of young male prostitutes and the efforts of Laszlo Kreizler, the alienist, to find and stop him.

He’s aided by Sara Howard, (played by Dakota Fanning), and John Moore, a friend who’s a wealthy freelance illustrator for The New York Times and a pair of brothers, Marcus and Lucius Isaacson, NYPD detectives. They’re threatened and thwarted by a corrupt police captain and his shadowy boss, aided by a young Teddy Roosevelt — later to become President — then the commissioner of police.

The production values are fantastic — at $5 million per episode — with exquisite costumes and hair, and period-authentic transportation in gleaming black horse-drawn carriages through cobble-stoned streets and an early steam train.

Like so many other fantastic television and film productions, (Game of Thrones, Blade Runner 2049), it was made in Budapest.

It’s been nominated for six prime time Emmy awards, including its main title, which is fantastic, and was very popular with viewers.

It’s a grim story, for sure, but if you have any interest in or familiarity with New York City, it’s interesting to see re-created, long-gone landmarks like the Croton Reservoir and to re-live that period.

The characters all have complicated emotional lives, several of them estranged from their fathers. The character of Sara Howard is my favorite — a whisky-drinking, cigarette-smoking iconoclast who stays steadfast in the face of violence, gory murders and everyday sexism as she becomes the NYPD’s first female member.

 

Have you seen it?

What did you think of it?

You don’t forget trauma. Ask Ford.

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By Caitlin Kelly

Maybe you — as I did — spent hours last week watching the testimony of Christine Blasey Ford and Brett Kavanaugh to the Senate Judicial Committee, to determine Kavanaugh’s fitness to serve on the U.S. Supreme Court, a lifetime appointment granting him tremendous power.

As you may know, she accuses him of assaulting her sexually when she was 15 and he was 17.

The dubious think this memory is impossible.

Here’s a story from NPR addressing how and why one tends to remember traumatic events for decades after they occur:

A question on many people’s minds is, how well can anyone recall something that happened over 35 years ago?

Pretty well, say scientists, if the memory is of a traumatic event. That’s because of the key role emotions play in making and storing memories.

On any given day, our brains store or “encode” only some of the things we experience. “What we pay attention to is what’s more likely to get encoded,” says Jim Hopper, a teaching associate in psychology at Harvard University and a consultant on sexual assault and trauma….

“The stress hormones, cortisol, norepinephrine, that are released during a terrifying trauma tend to render the experience vivid and memorable, especially the central aspect, the most meaningful aspects of the experience for the victim,” says Richard McNally, a psychologist at Harvard University and the author of the book Remembering Trauma.

That’s because a high-stress state “alters the function of the hippocampus and puts it into a super-encoding mode,” says Hopper, especially early on during an event. And “the central details [of the event] get burned into their memory and they may never forget them.”

Whether it’s sexual assault victims or soldiers in combat or survivors of an earthquake, people who have experienced traumatic events tend to remember the most essential and frightening elements of the events in vivid detail for life, says McNally.

I find this dismissal of another’s memories appalling — and of course, politically expedient for Republicans.

As someone whose life changed forever at 14, thanks to a traumatic event (thankfully, not assault or abuse), I think those who  challenge early, brutal memories, even if they’re fragmented, both arrogant and unscathed.

I won’t get into every detail, but my mother had a manic episode on Christmas Eve when  I was 14. We were living in Mexico, far from friends or relatives, not that any relatives ever cared that I was an only child in the care of a mentally ill mother.

We had no phone. We’d been there maybe four months, so even schoolmates were still acquaintances.

It was basically terrifying.

That evening, driving recklessly down Mexican highways, she endangered my life and that of two other people with us before driving into a ditch at midnight on the edge of an industrial city I had never been to.

I ended up taking care of another girl my age, alone, for two weeks, before returning to Canada to live with my father — for the first time in seven years.

 

 

 

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Image used with permission from its creator Aaron Reynolds; a card from his deck Effin’ Birds

 

Some moments of that evening, and what came next, are etched into my memory.

But some others?

Not at all.

I never lived with my mother again.

Nor would I ever again allow her, or anyone, to endanger me like that.

 

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If you’ve suffered trauma, let no one try to dismiss what you already know.

 

If you haven’t, don’t inflict further pain on anyone by disbelieving or questioning them.