What Helps. What Hurts. What Heals. A Blog by Lori Hope, Lung Cancer Survivor
I've just strapped myself into the seat of a 737 when the young woman next to me gasps into her iPhone, "It crashed? Everybody on board died??"

Why would anyone share news about the commuter airplane crash of the day before with someone about to taxi on a tarmack and take off into arguably friendly skies?!

But, wait, the story gets even more ridiculous. A moment later, the guy behind me bellows, "Hey, turn off your cell phones! If this plane crashes, it's your fault!"

Maybe he's not scared of flying, but aviaphobia is fairly common; studies show that up to 40% of us have experienced it to some degree at one time or another. And, certainly, news or thoughts of airplane crashes can only exacerbate the fear.

Does he not realize this, or does he simply have the sensitivity of a tree stump?

I have to admit something here. After this guy blurted about the plane crash, I craned around and said, "I don't like hearing about plane crashes when I'm about to fly", and saw shame color his face. It would have been kinder to wait until later to say that privately.

Should I remind myself that "It's okay to say or do the 'wrong' thing" [one of the statements from Help Me Live: 20 things people with cancer want you to know]? Or did I do the right thing by saying what I did? I was, after all, simply trying to keep him from adding insult to the fearful injury many were already probably experiencing.

Your thoughts?

Always hope,

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Hope Survives
posted by: LoriHope Feb 24, 2009 8:09am
As a journalist and communications consultant, I equate getting a story on the CBS News show, 60 Minutes, to hitting the jackpot (except that luck rarely plays more than a very small role). So when I saw a story last spring about a side effect-free cancer treatment and possible cure in development, I became breathless and tearful with hope.

The 60 Minutes piece was about a retired TV and radio station owner and engineer who dedicated his life to curing cancer after being haunted by the hollow faces of children suffering from leukemia, the cancer he’d been diagnosed with six years earlier.

“The Kanzius Machine: A Cancer Cure?” tells the story of John Kanzius (pronounced “Kansas”), who in a lightbulb moment that flashed in the middle of the night when side effects from chemotherapy kept him from sleeping, realized that he could use radio waves to fight cancer. He began rummaging through his kitchen cabinets for some pans to begin construction of a machine that would ultimately lead to the destruction of tumors in rabbits and rats.

John Kanzius died on February 18. And although it’s horribly unfair that he did not get to realize his dream of seeing his machine destroy a tumor in a human, the hope he inspired in millions lives on.

The John Kanzius Research Foundation states on its website:

“John’s passing, at a hospital near his winter home in Sanibel, Florida, has come at a time when his cancer invention was entering the final stages of animal testing and nearing the time when it would become available for human clinical trials.

The Foundation was formed shortly after John announced his invention, the Kanzius External Radio Frequency (RF) System, as a way to update the progress of his efforts, which have soared at a rapid pace.

‘We will not stop until John’s vision becomes reality,” said Maryann Yochim, president of the Kanzius Cancer Research Foundation. “Our only regret at this point is that John will not be here to see the first cancer patient cured with his technology. But, we believe strongly that this will happen. It’s only a matter of time.’”

Time is of the absolute essence for those of us who have been punched by cancer. And on the Kanzius Foundation site, one hears an eerie reminder of that. With every passing second, a counter ticks to mark how many cancer deaths have occurred this year. Right now it’s 80,787; in a minute and a half, the counter will change to 80,788, when one more person has died of this horrid disease.

Please watch "The Kansius Machine: A Cancer Cure?". to keep your hope alive. Interestingly, it hails from a show that’s signature sound is the ticking of a stopwatch.

With love and always hope,

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What romantic comedies and cancer have in common
posted by: LoriHope Feb 17, 2009 9:41pm
I just returned from my annual weekend at Rockaway Beach on the Oregon Coast with my best friend from college, Barbara. Unlike other retreats I take, which are all about working, this one’s about play, self care, and delightful self-indulgence. It’s about eating smoked salmon and tuna, sipping tea, sharing wine, sleeping in, poking around antique shops, beach walking, and talking endlessly about what matters most to us.

It’s also about watching movies, usually classic black and white ones, on TV. Last weekend, though, since it was Valentine’s Day, romantic comedies abounded -- fortunate us: our husbands sent us away with their blessings because it was one of the few long weekends Barbara and I could both take off -- and we saw Sleepless in Seattle, Must Love Dogs, The Wedding Singer, and Failure to Launch. They differed in plot, but all shared something besides clever writing and happy endings: characters receiving unwanted advice.

In Must Love Dogs, Sarah Nolan, a kindergarten teacher in her mid-30s, has been divorced for eight months when her family decides it’s time for her to find romance again. Well-intentioned but misguided, her sisters place an Internet dating ad for her, using her high school graduation photo, and offer unasked for counsel about dating.

Perhaps most hilarious are the exchanges between Sarah, played by Diane Lane, and her butcher, from whom she wants to buy just one chicken breast for dinner. The butcher tries to persuade her to buy more than what she wants – after all, it’s on sale, so why not purchase the whole chicken for about the same price?! – not realizing that the more he insists, the more he annoys her, rubbing in the fact that she is alone.

I found myself laughing and cringing through these movies, reminded that it’s not just those punched by cancer who field oft-unwanted advice, but also the divorced, bereaved, and heartbroken of every stripe.

Though I accept and forgive that we all (including me!) dole out unwelcome advice at times, I feel strongly that we should attempt to be conscious and respectful and at least try to hold our tongues. I’ve made it a point to refrain from asking my single friends about their love lives, because I know they’ll bring up the subject if there’s any news to report. And if they want my advice, they’ll ask for it.

I know that they realize that I keep silent not because I don’t care about them, but because I don’t want to bring up a subject that could hurt them. It’s like asking someone who’s unemployed, “Have you found a job yet?” If they have, they’ll certainly tell you, and if they haven’t, they probably don’t want to say for the nth time, “No, not yet.”

What cancer and romantic comedies have in common is that they can both teach us how to show we care in a respectful way that enriches rather than diminishes our sense of self. Another good reason to watch funny flicks!

Always hope,

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Was it scanxiety, the nocebo effect, or a gift?
posted by: LoriHope Feb 10, 2009 8:25pm
A heaviness in my chest…a wheezing when I breathe in deeply…a heart that seems to bounce around in a space left empty by the removal of part of a lung…

Were those imagined sounds, feelings, and images I experienced during the last few days while worrying about my imminent CT scan? Were they symptoms of scanxiety? Were they the result of the nocebo effect? Brian Reid wrote about this in a Washington Post article, "The Nocebo Effect: Placebo's Evil Twin":

"While the placebo effect refers to health benefits produced by a treatment that should have no effect, patients experiencing the nocebo effect experience the opposite. They presume the worst, health-wise, and that's just what they get." Reid gives as an example a study in which researchers found that women who believed that they were prone to heart disease were nearly four times as likely to die as women with similar risk factors who didn't hold such fatalistic views.

But wait a minute. After almost seven years of getting follow-up scans, I don't spin out like I used to, fearing and sometimes even expecting the worst. But even though now I seem to be able to manage my scanxiety, my body still reacts. And I have to fight to keep my mind straight.

Yes, even though I know now how to prepare for a scan - who to tell and who to avoid, how to seek distraction, practice self care and positive self-talk, even considering the possible benefits of having a recurrence (e.g., getting out of unpleasant family obligations), my body remembers.

I thought I'd tricked myself this time. When I called to schedule my scan, I got in within four days, so didn't have even one week during which to think of February 9 as Scan Day.

But even with so little time to worry, it happened. Sunday evening, when we went to the movie, Gran Torino (warning: story spoiler coming!), and I saw Clint Eastwood's character coughing up blood, I instantly thought, "Lung cancer - that could be me!", and then, later, when he met his sudden murderous demise, I thought, "Sure beats a slow death to lung cancer!"

And yesterday, after undergoing the scan and embracing my beloved husband in the parking lot, I opened my eyes and saw between the concrete posts a sign across the street: "Albert Brown Mortuary."

"Oh, no, it's a sign!" I thought.

This morning when I woke up, I was thinking the same thing, "It's a sign." But today it was just a sign on a building, not a sign of things to come, because my doctor (bless her!) let me know within hours of my scan yesterday that it was all clear.

Today I am experiencing more blessings, gifts, lessons to relearn, a wake-up call that awakened me at 3:30 am with a start. Today, like every day, is the first day of the rest of my life. How am I going to live that life, that life that I know with absolute certainty will end?

Such are the gifts of cancer: the incontrovertible reality of mortality; gratitude; faith; humor; hope; healing; and the drive to give something back and leave something behind.

With love,

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But, seriously, what NOT to say to someone with cancer…
posted by: LoriHope Feb 8, 2009 3:02pm
In my last two posts, I shared irreverent, cheeky, and arguably droll responses to “I have cancer.” Though it can be fun to dish about such real or imagined pratfalls, it’s an entirely different story when you actually field such statements yourself. It can feel like a kick in the stomach - only it knocks the wind out of not just your belly, but your spirit, soul, and psyche.

So I’m going to get serious for a moment and offer some guidelines and explanations based on research conducted for my book and the multitude of comments I’ve received since its release. Believe it or not, the following responses are quite common, and make most of us cringe, so it’s best to avoid them completely, whether you’re addressing a cancer patient directly or speaking about him to someone else. Old habits die hard. (“Die” is a good word to avoid, too...)

I’ve also included a few statements that most everyone, combatants and non-combatants alike, welcome.

As always, I encourage you to post stories here about what helps, what hurts, and what heals – which can help inspire hope, compassion, and loving communication among us all.

What NOT to say to someone with cancer:

1. "You poor thing." People with cancer want compassion, not pity. Pity connotes hierarchy – looking down on someone - while compassion establishes equality based on common humanity. And the word "thing" objectifies your friend, when more than anything she needs to feel like a subject – a beloved human being.

2. "What's your prognosis?" Prognosis is a medical term that leads most people with cancer to wonder how long they have to live. Even if we're positive thinkers, we may not want to be reminded of our mortality, or about what statistics indicate about our survival. And who needs a clinical term when we crave language that connects us?

3. "Let me know if there's anything I can do to help." According to an Aflac caregivers survey that I assisted with, that statement is among the least helpful. Patients and caregivers often feel so overwhelmed that they may not be able to focus on what they need. And even if they do, they may not want to ask you for help. So have something specific to offer: stopping at the grocery store, accompanying them to a doctor’s appointment, taking them to a comedy show or funny flick.

4."My aunt [or anyone] died of breast [or any kind of] cancer." Tell positive stories, or none at all, about others who’ve had cancer. People with cancer need to feel hope, and “horror stories” are certainly hope-busters. Just remember, “If you don’t have anything nice to say…”

5. "At least they caught it early” - or "at least" anything! Your friend needs to know you're acknowledging her pain and taking it completely seriously. By saying "At least it's early stage…" or "At least you don't have to have a mastectomy…" or "At least you don't have to go through chemo…" you minimize what she's going through. She may come to see herself what's good about her situation, but she probably doesn’t want to hear that from you.

Five statements sure to help:
1. I’m here for you.
2. I’m here to listen if you want to talk.
3. It’s not fair - no one knows why such bad things happen to good people like you.
4. You’re in my thoughts [and prayers, if faith is important to you’re friend or loved one].
5. I love you.

And, most important, just listen with an open mind and heart.

Always hope,

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Cancer survivor Lori Hope is the author of Help Me Live: 20
Things People with Cancer...

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