A Guide for Post-Cancer Patients and their Caregivers, by Steve Safran

First, a thank you. I am overwhelmed by the reception I received for my article “After the cure, the cry.” Britt tells me 1,000 people read it. Many people—friends and strangers– have contacted me and shared their personal stories with cancer, recounting their own illness or remembering a family member who went through it.

Grappling with my own, complicated emotions in the post-treatment period, I found a great many resources out there for people suffering through “Cancer-Related Post-traumatic Stress.” The important message in all of these is this: You are not alone. These words from the National Cancer Institute (NCI) ring true.

“Symptoms of post-traumatic stress usually begin within the first 3 months after the trauma, but sometimes they do not appear for months or even years afterwards.”

(Mine began about three days after learning I was in remission.)

I kept asking myself, “I’m in remission. So why do I feel so miserable?” The NCI list of key triggers for PTSD made me wonder how anyone escapes this. As a cancer patient, you’re hit with a series of terrifying events, any one of which would be stressful. Combine them, and they make a mighty cocktail of traumatic triggers:

– Being diagnosed with a life-threatening illness

– Receiving treatment

– Waiting for test results

– Learning the cancer has recurred

To that, I would add that only doctors on TV ever say, “You’re cured!” so we live with “Learning the cancer may recur.”

Side bar from Britt: Still reeling from these events, you can imagine how odd and occasionally irritating all of these Stay Strong Be Positive Awareness campaigns can be. With everyone gleefully praising the bravery and strength of cancer patients, while walking their own healthy bodies all over town for a happy cure, we might feel a bit of guilt or anger that we’re unable to pretend it’s all over. We might have (temporarily) beat cancer into some undetectable submission, but it is an albatross to our peace.

Cancer patients aren’t the only ones subject to PTSD. Caregivers are susceptible, too.

“PTSD can also affect caregivers. Learning that a loved one has cancer, seeing a loved one in pain, and experiencing a medical emergency are traumatic events that may contribute to the development of PTSD symptoms during treatment or years after the person has survived the cancer.”

So families and caregivers need support, too. For me, cancer was a full participation, family event. My parents, my sister, and of course, my kids weren’t shielded from the times I was in pain or scared. We’ll need to keep “checking in” to gauge the fallout of this on each one of us. I hadn’t put a lot of thought into how my disease would influence their feelings in the future. Now I will.

What should we do about this? Is there a way to proactively safeguard our loved ones in the aftermath? Actually, yes. There are a few recommended steps. The first is everyone should have an opportunity to talk to a psychiatrist. Having a trained professional define the trauma and help identify its effects on your worldview can be enormously helpful. Also a doctor can and will, if necessary, prescribe medication. It’s been my experience, so far, that making sense of things with a psychiatrist is as much a part of healing as growing new hair. Holding in feelings of any sort is not healthy. Exorcizing those thoughts with a trained professional– not just your friends– is the way to metabolize them. This is just as important for caregivers and loved ones to consider as well. While your best friend or loyal sister is a great listener, a third party relieves her of trying to comfort and be comforted: You can’t be the patient and the therapist.

Another way to heal? Mindfulness. I’ve only just started to learn about this, so forgive me for being new to the effectiveness of this practice. Mindfulness, to be reductive, is yoga and meditation without all the New Age, crystal-waving, stand-on-one-leg, astrology-reading bits. And there is scientific proof that it works:

“A controlled study published in 2000 looked at 90 cancer patients who did mindfulness based stress reduction (MBSR) meditation for 7 weeks. They found that people who meditated had 31% lower stress symptoms and 67% less mood disturbance than people who did not meditate.”

I love controlled studies. They beat the heck out of well-meaning friends who say, “I have a cousin who only eats pomegranates and he’s been in remission for 30 years.” I went so far as to switch to a specialist trained in mindfulness and meditation. Mindfulness isn’t faith-based, and doesn’t actually require that you post inspirational quotes over blurry skies on Facebook. A good friend observed: “So those cultures that have been doing this for thousands of years probably knew something after all?” Go figure.

If you are in cancer recovery or in caregiver remission, please pay attention to signs of PTSD, take advantage of the many resources available to you, and never forget that you are not alone. I’m overstating the point, but as I’ve said before: “You think the treatment is bad? Wait until you’re cured!”

Britt cannot resist science puns...

Britt cannot resist science puns…

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A new kind of awareness

Today, this made a lot of people really happy.

I’m in awe. I want to meet her and hug her and be her (millionth) best friend. Look at her all adorable and smiling sunbeams and effectively preventing everyone in that room from crying! But I’ll bet you a Beyonce hair extension that tears flowed after the camera stopped and anesthesia started. A woman this spectacular is a woman adored. And no one wants what happens next to happen next. To anyone. To her. In addition to the millions who “like” this, there are thousands more sobbing atop their restructured parts (please pass me a tissue).

Roughly one in eight of us is thrilled October and all its yammering awareness is over. After Halloween, we were relieved that daily reminders of our personal demons had stopped polluting our newsfeeds, and tote bags, and cereal boxes. I wonder if, like me, they watched this gem of a video and thought, “This. This is ‘awareness.’” A beautiful, groovy gal in a backless gown shows us one way to plow through the terror of it all: with love… and a bit of Beyonce.

I’ve been quite vocal about championing Angelina Jolie for her spotlight on breast reconstruction after mastectomy. She brought awareness to the triumph of reconstructive surgery over devastating mutilation. Famous for being stunning before and after her mastectomies, she provides compelling evidence to women with this distressing diagnosis that the road to recovery isn’t necessarily the autobahn to ugly. Bravely sharing the nitty gritty of her medical treatments, she effectively outlined what women should expect as a “standard of care” faster than any number of 5K runners in tight, pink clothing. Today, I applaud Dr. Deborah Cohan for putting a groovy spin on awareness, for showing us the triumph of spirit over fear.

I hope today’s viral, feel-good story will be famous for longer, and for so much more than her johnnie jamboree. Deborah Cohan hijacked “awareness” like a John Malkovich movie cameo, showing us it can be quirky and cool. (For all of the good they do, Komen has become a bit of a Kardashian.) Don’t you want to know Dr. Cohan and her fun bunch of boogying buddies? What a gift to the people who love her: to show them joy when they feel dread, to give them Beyonce when they’re expecting dirges, to share herself (with the world!) when they (we!) need to know desperately that this isn’t breaking her. While I’m preoccupied with Pink-tober backlash rants, here is this brave woman reminding us of the big picture in a tiny space. She marshaled six minutes on the scariest day of her life to show everyone who loves her that she knows she’s loved, that joyfulness hasn’t died with this diagnosis, that it’s going to be OK. And in our hearts, we’re all dancing with her.

Awareness

“These things aren’t tied with a pink ribbon”

This is a raw, sad, and honest poem written by Lisa Bonchek Adams. She published it nearly two years ago… when her treatments were over, but their effects were not (and would never be). This is the part that tugs at me:

Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.
While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.
These things are not tied with a pink ribbon.
These things last longer than a month.
This is part of awareness.
This is part of what breast cancer can do.
This is what it has done to me.

Unless you are blind, shopping-averse, or trapped beneath something heavy, you’ve noticed that October has become shrouded in pink. Billboards are plastered with beautiful celebrity survivors, sporting Cancer-didn’t-beat-me! smiles and cascading hair atop their plunging necklines. And all of us are hen pecked with requests to donate, walk, buy, carry, wear, and otherwise marinate in the rosy mindfulness that Breast Cancer Exists. I’d been warned that I might have an unusually strong reaction to all of this Awareness, but it was the brutal honesty of this poem that informed my urge to yell at the telemarketers.

“Did you know that there currently is NO cure for breast cancer?”

Awesome reminder. Could you leave it on the answering machine again to frighten the children? And 5pm is a super time to call moms with short hair, implants, and smallish, hungry boys with homework.

You might think I’d want to transfer our entire 401K to the scientists in charge of my unknown future. But, you know, I think I’ve given quite enough… and sometimes, I’m still angry. That 7mm aggregate of evil cells robbed me of my body, and my Peace. Chemo has made list-making necessary, and finding the car a challenge. Of course, every day gets a teensy bit easier. At least, as Kelli said, “… until I take off my shirt… then the PTSD kicks in and a few days of Xanax is called for…” I do think these pink promotions are a good and great thing, but for millions of us (and many millions more who experienced the fallout while baking us muffins, driving our kids around, and reading our blogs) we’re Aware, thank you very much. The Frying Pan of Breast Cancer has collectively conked us over the head, and the birdies are still circling. Can you see them? They’re fucking pink.

Of course, there are oodles of other ways that Pink-tober is heart-warming. Seeing a picture of my ninth grade cousin and her girlfriends devote every Wednesday this month to Awareness makes me smile. And I went on a survivor-entitled Bloomies shopping spree under the guise of supporting Pink causes. But because everything is a little cuter, a little prettier in ruddy hues, practically any household item can be found as a Pepto Bismol-dipped nod to the not-so-cute or pretty struggle it supports. The scars, fear, cold, nightmares, loss… these Halloween-y sentiments match up more closely to any Awareness I’m feeling. And these things… these things aren’t tied with a pink ribbon.

Lisa, the brave writer, mom, survivor… Lisa just went public with the news that her Cancer is back, in the treatable-not-curable way (www.lisabadams.com). I’ve never met Lisa, but her news leaves me sad and scared. I found a website entitled “F**K AWARENESS, Find a Cure” with nary a pink ribbon embellishment. I’d like to throw a few back with those guys. Buying the pink crap isn’t going to help Lisa, although our “awareness” of her devastating diagnosis just might. I have great faith in the medicines that will keep Lisa living to tell, and even more in the Peace that comes from our prayers. Mine are headed her way, tied up with love and hope that transcend all sense or science (or color).

 

Freshman in Oviedo, FL for The Cure:  adorable awareness