Billy Hamilton

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Seamus Friday: Hollywood High

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Hey, my people, Seamus thought you might get a kick out of looking down on L.A. from the Griffith Park Observatory.  He does.  

Of course Seamus gets a kick out of everything.  This time, I was the one who needed to get out and above. My six-month checkup was days away.  I needed to remember that the world is bigger than Cancerville.  

Proportions change up here. The Hollywood Sign is twice the size it's supposed to be; the hikers march along like ants in sun hats.  California's brown hills can seem desolate in photographs.  Don't believe it. They're full of life.  

As it happens, the checkup went fine.  Seamus and I get another six months to ramble.  Who knows where we might climb?

Après le Heatwave

Hey my people, life in Los Angeles life is bearable again. The thermometer dropped at last after a vicious week of 90º+ temperatures. 90+, you say? Hell, it's 110º in Phoenix.

Well, I bet in Phoenix you have an air conditioner.

Last week in Los Angeles-- land of the jalousie windows, where you can't mount an a.c. no matter how desperate you are-- the dog, the cat and I lay back helplessly dozing through the afternoons with the blinds closed and a platoon of fans zzz-ing. The white noise of a fan is the most soothing sound I know, and in heat like this, it's narcotic. Fans affect me at the cellular level. Their chrysalis of sound is meant to sleep by. That's my Southern heritage. When I was a kid in Louisiana, I would keep the fan going all night even if I had to get up and throw on a blanket.  

Now that I think of it, the buzz-tick-whirr of the chemo dispenser lulled me to sleep in exactly the same way. This may be kind of sad in a Pavlovian way, but so what? One of cancer's biggest lessons for me: if a distraction turns up, take it.  Besides, maybe that soothing buzz-tick-whirr helped convince my embattled cells that all was well, and we'd wake up and have eggs and grits in the morning.

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Jessica is on the road!

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My friend Jessica Jahnke is one of the baddest cancer heroes ever.  Here's how a longtime friend describes her:

"I met Jessica in 1979, we worked together in a disco, 'cause we’re that old. Still being here to be ‘that old’ is a blessing. We are both cancer survivors.

"Jessica was one of the most interesting people I had met back in 1979. She was born in Silverlake, CA, and her mom moved her to Barcelona, Spain, when she was 6, going on 7. Jessica has lived in Spain, Egypt, England, New York State, California, Vermont and Washington. What an incredible resume… Jess is a fun and adventurous woman, with a great sense of humor and zest for life! Sometimes I feel like she doesn’t fully understand how remarkable her life is, she is an amazing woman. She feels things deeply, so when you are loved by her, you are loved. I am honored to call her family. I love her bunches!! Always and forever."

--Janice Wheelock

Pictured above at the Oregon Country Fair with her beloved Nissan truck and her Burro camper, Jessica has been telling Stage IV where to get off.  Despite constant pain, she made the drive from Seattle to volunteer at the Fair, just as she has for the past 20 summers.  Further complications prevented Jessica from driving coast to coast.  But not before she sent us pictures of this field of flowers or these sociable geese.  And just because she's stopped driving, doesn't mean she's stopped moving. Next on Jessica's list is a flight to Barcelona, her childhood home.  From there, if she can, she'll join the amazing walking pilgrimage, the Camino de Santiago de Compostela.  

Who's going with her? 

 

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The glory of the everyday: "Make Our Garden Grow"

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Hey my people, when I came down with cancer, I had a powerful weapon on my side: I already believed that even life's smallest moments were worth fighting for.  This song is one of the things that gave me that idea: "Make Your Garden Grow," from the musical Candide. 

Who's Candide?  He's one of the dumbest, numbest, most gullible characters in the history of storytelling—basically, an 18th-century Forrest Gump.  Candide maintains his blind optimism throughout a fantastic series of disasters that include war, shipwreck, the Inquisition, and prostitution (endured by his girlfriend Cunegonde, who gets quite a kick out of it—but that's a different song). 

When Candide finally wakes up and sees what a fool he's been, he sings "Make Our Garden Grow." It's the climax of the show, and it's hair-raising. The lyrics are about doing a simple day's chores—baking bread and chopping wood. But wait for the third verse, where those homely tasks are elevated in a rush of music that would flood a cathedral:  "We're neither pure nor wise nor good/ We'll do the best we know/ We'll build our house and chop our wood/ And make our garden grow."

In two weeks I hit the cancer center for my six-month checkup.  I take the blood test and wait for the result.  I don't like it and I don't have to.

But today I grouted tile, fed my handsome dog, and listened to "Make Our Garden Grow."  I'll take this day with me when I go.

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Talia Joy Castellano. A woman to remember.

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Hey my people, I don't want to cough up a lot of bromides about the fact that Talia Castellano is dead. I do want to say this: For me, Talia didn't lose her battle with cancer. Even in death, she won. To you that idea may sound clueless, not to mention tasteless. Death at 13 is an obscenity no matter what the circumstance. But this Florida tween with the million-watt smile was more than a YouTube phenom. She had the mettle of a real star. Talia took on the adventure of her own life. She kicked cancer all the way up and down the block before she left us.

This young woman spent her time abundantly well. She played every card she had, and did it with gusto. She charmed Ellen DeGeneres on TV and displayed her flair for makeup in an ad for Cover Girl. Talia got up from chemo and still had the psychic wherewithal to describe the sight of rain coming at you across a Florida field (see the 2012 interview excerpted here).

Talia said she wanted to be remembered as "that bubbly girl who wanted to do something about childhood cancer." I'll remember you, Talia. No problem there.

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My Cancer Quest for Meaning

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I would never have presumed to compare my suffering as a cancer patient with that of a prisoner in Auschwitz. It took the thoughtful and compassionate Dr. Arash Asher, director of survivorship and rehabilitation at Cedars-Sinai, to show me the connecting thread.

I had asked Dr. Asher to help me understand how experts view the challenges of longterm cancer survivorship. He discussed physical and mental issues. "Then," he said, "there's the existential."

Ah. Among the zillions of words I've written about cancer, existential had never come up. It instantly clicked into place as that perfect expressioin that had been on the tip of my tongue the whole time.

"Have you read Man's Search for Meaning?" Dr. Asher asked.

I'm reading it now. Dr. Viktor Frankl's mighty work, rooted in his experience in three Nazi concentration camps, reveals that physical strength alone is no guarantee of survival. In Auschwitz, those most likely to survive were those who had the mental will to find meaning in their lives -- in life itself.

Frankl writes that his own life was saved more than once by his power to imagine himself elsewhere. He describes how, being whipped, cursed, and marched in the freezing wind to a work detail, he escaped into a vision of a loving conversation with his wife. "I did not know whether my wife was alive, and I had no means of finding out…; but at that moment it ceased to matter. There was no need for me to know; nothing could touch the strength of my love, my thoughts, and the image of my beloved."

Again, I don't presume to compare the circumstances. Yet during chemo I had similar experiences; my imagination came to my rescue. I supposed I ought to be facing reality. Throughout my childhood, I'd gotten in trouble for daydreaming. Yet when the adversary was cancer, I was sure that my dreams were saving my life.

The whole point behind Well Again is that cancer changes nothing less than our existence. Life beyond cancer can never be the same. So we get a chance to make it better.  We deserve to reimagine and rebuild our lives based on happiness, adventure, education—whatever 'Well Again' means for us.

TO BE CONTINUED......

 

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Emily Jones: Cancer Dancer

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After undergoing chemotherapy for six months and facing five more months of same, I found myself having a hard time talking myself into exercising, which is important to my continued recovery.  Sometimes it feels like there are two people living in my body and they are completely different personalities, each fighting for control.  I don’t even think they like each other.

One is a sweet gentle creature who likes to lounge in the world’s most comfortable recliner with a good murder mystery and a bag of Reese’s; the other is a restless, frustrated woman who starts new projects weekly, knowing full well she will never finish any of them.  She rearranges the furniture in her house at least once a month and recently swapped out the dining room for the living room.  Now no one knows where to go when she says “Dinner is served.”
 
With my new expanded living room, I have room for an activity both ladies can enjoy – dancing – but only when the curtains are drawn and no one is watching.  Oh, I also sing like no one can hear.   Not only is it fun and great exercise, I think those squirrels living in my attic have moved on.  They probably got tired of hearing all the stomping around to the tune of “Brick House” which rattled the windows of my old home – literally.
 
I began my dancing career while looking around for a new fitness program that doesn’t involve getting down on the floor or sweating in the summer heat.  I read a report in the New England Journal of Medicine that showed a lower risk for dementia among people over 75 who regularly danced during their leisure time. But what was so surprising about the report is that other types of physical exercise didn’t affect dementia risk — dancing was the only physical activity that made a difference.  Okay, that did it, I’m in!         
 
It doesn't matter what type of dance you choose.  Mine is “free style,” incorporating a bit of a high kickin’ Irish jig, the tango, the bebop, and watusi. It doesn’t really matter so long as your body moves constantly and energetically so that you're elevating your heart rate and burning calories. I draw the line at break dancing because I would probably break something including a lamp or a body part.  By all means, turn the music up to the max and sing along, but you might want to wait until your closest neighbors have gone to work.  
 
I may even install a pole and a disco ball so I can ramp up my routine even more.

Richard Powers, a dance professor at Stanford University, explains that freestyle dance actually requires more brainpower than choreographed routines. You make rapid decisions about how you move, rather than following a predetermined set of steps. Supposedly this helps reduces the risk of dementia more than any other physical activity.
Freestyle dancing is easy to do anytime, anywhere; you don't need a dance floor, a partner, or a wide space. You can dance standing in front of your desk, or on top of your desk for that matter.  You can dance around your kitchen as you prepare dinner. My favorite kitchen routine is called slap dancing.  You simply move your feet around while slapping together a tomato sandwich. 

I’ll never be on Dancing with the Stars but I have worked up a couple of routines I can perform during commercial breaks.  There’s the Omaha Traveler, where I hop around while swinging an imaginary baseball bat. I invented the dance while watching the super regional baseball games in Virginia this week.  

For even more fun, dance in front of a mirror if you can stand it.  I promise you a good laugh, and a better mood will follow you whereever you go the rest of the day.
 
Emily Jones is a retired journalist who edits a blog for bouncing baby boomers racing retirement.  She invites you to stop by www.deludeddiva.com.

Mandela, My Mother, and Baton Rouge

The year was 2000. My 83-year-old mother had broken not just her hip but her pelvis, only we didn't know that, because she couldn't tell us. She was on the downward path with dementia anyway, and the pain meds were making her hallucinate without relieving the pain. She was yelling things like "smooth out that sheet underneath me" and "pull up my socks." She was trying, in other words, to locate the source of that pain and fix it, but the pain wouldn't fix, and my mother would start the whole sequence over again: "Smooth out that sheet. Pull up my socks."

She was in her half-tester bed at home in Baton Rouge, screaming and crying through the nights, and my stepfather had had it up to here with taking care of her. Not that he was so good at it to start with. Her losing her mind scared him so much, I guess, that he went all ex-military on her and kept commanding her to get a grip.

I took my vacation days and flew down to give my stepdad a reprieve. I was going to show him how somebody with real compassion took care of somebody they loved.

I'm ashamed to tell you that within two nights I wanted to wring her neck. The repetition repetition repetition repetition repetition -- the intensity of the pain, the senselessness of the requests -- she worked my nerves and I turned right back into a sulky teenager.

I did see that she was too ill to be home. I called the ambulance and rode with her to Our Lady of the Lake hospital. Finally, finally, they got a morphine line in that got her to sleep. Her lips kept moving as she went under, her fingers gesturing as she spoke to a person or persons in the ether.

At three in the morning she woke up just enough to revive the "smooth out my sheet" routine. I was sleepy hungry angry lonely mean about it: "I'm not pulling your socks up again, I just pulled your socks up!" Finally we both dozed, and when I woke up, the sun was up and a doctor was looking her over. "I told your father she can't be cared for at home," he said. "We're going to need to get her into skilled care."

"What, like a nursing home?" He nodded, and pain hit me so hard my knees shook. One instant, many impacts: Wait my mother NOT GO HOME? no more not go home? And: Her last night of freedom I spent yelling I won't pull up your socks? And then: My god, my plane is leaving NOW.

Racing back to the airport, blind with tears, I kept reciting, Don't wreck the rental car you fool.

The scene at the Baton Rouge airport distracted me from my own drama. A long line of motorcycle police idled in formation outside Arrivals. What, a dignitary in Baton Rouge? Who the hell? Inside I could hardly get anybody to take my keys. Every employee in the airport, it seemed, was lined up and jostling at the escalator, waiting to see whoever had just landed.

"Who is it?" I asked the person nearest me, a young black woman in a Popeye's Fried Chicken uniform.

She said the name like a magic spell: "Nelson Mandela."

And it was. The great man swept through, smiling that smile, and his passage sent a visible wave of energy through the mostly African-American crowd. Baggage handlers, fry cooks, gift shop clerks, janitors. I saw their faces upturned, awestruck, suffused with ecstasy.

Then he was gone, vanished into his limo, with that uniformed police escort roaring into motion, all those white cops riding off to be his honor guard. My hometown, Baton Rouge -- the same Baton Rouge where I'd lived through riots when my high school was integrated, where I'd listened as a child to politicians holler the n-word on TV -- that same Baton Rouge had somehow evolved into a place that knew how to welcome Nelson Mandela.

My mother was going out, and Mandela was coming in. A great soul departing, a towering soul arriving. A small soul, weeping on a plane to L.A., with so far yet to fly.

 

What do you say to a sometime-y blogger?

 

A:  Welcome back!  We missed you!

Okay, that's a little over the top. In our digital world, nobody misses anybody because we're all opinionating all the time.  I understand what blog posts are supposed to be: spontaneous, timely, and interchangeable as Cheerios.  If it's a different subject, politics or media or James Gandolfini (god bless him), I'm so bloggified I can't blog fast enough. 

But friends, this is cancer.  I don't want to say anything dumb or insensitive. I don't want to make it worse for anybody.  Neither do I want to look backward, don't want to put us all through the blow-by-blow memoir of my treatment.  I want to say something new.  I want to build a community like we've never had and never imagined.

I mean, blogging is easy.  Blogging something true and memorable that makes us feel better in the face of this life-sucking disease, that's a little harder. 

They say "never apologize, never explain."  But I just have to.  I have to tell you I don't feel big enough to say anything that helps.

All I feel sure of is:  Wherever you are, whatever stage of this roller coaster ride you're on, I wish you joy.  I wish you a tomorrow that's better than today.  I'm on your side and in your family.  I didn't want to be family, of course.  Nobody wants in this club.  But cancer eventually made me understand that I'm so lucky to be here with all of you.  That's why I say, Hey my people.  Sometime-y as I am, I care.

Next post, we'll hear from Southern superblogger Emily Jones.  She knows how to rock this topic.

Anybody else out there want to chime in?

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Meet Emily Jones, Guest Blogger Number One!

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Hey my people, I'm so excited to introduce you to Well Again's first guest blogger, syndicated columnist Emily Jones.  Emily hails from Mississippi, source of 10 thousand funny stories and 10 million good recipes, most of which she can at least fake. Thanks to a run-in with ovarian cancer, Emily recently joined us here in survivorworld, but that's not the most important thing about her. 

Emily Jones is:  1. Hilarious.  2. Incisive.  3. Guru of her own website, deludeddiva.com, where she self-describes as a "retired journalist and master piddler who is slogging through the new world of culinary delights, gardening prowess and holding old age at bay at all costs."  As the Deluded Diva, Emily speaks to "bouncing baby boomers facing their second adulthood" and often facing the fight of their lives in the form of cancer.

Well Again is lucky enough to bring you a column from Emily Jones twice a month until she gets tired of us, which I hope will be never.

Emily's Well Again column debuts tomorrow.  Read, enjoy, share, and congratulate Emily on kicking cancer to the curb!

 

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Sheep dreams, Seamus...

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Hey my people,
Seamus and I duet on his sheep toy. He gets it in his jaws and shoves it against my knee till it squeaks. Then I answer--reach in on either side of his jaws, squeak the toy, draw back, and don't get chomped. Then he squeaks, then I squeak, and so on.
Might sound dull, but what with the teeth, it gets pretty lively.
Not till this week did I realize that Seamus was also using his sheep as a pillow. Does this count as multitasking?

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Sequestered to death?

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Hey my people,

Thinking about sequestration today. Honestly, is that any kind of name for policy? The word is so meaningless that it continues to resist explanation even as it's grounding airplanes and leaving seniors meal-less and wheel-less—and of course shutting down cancer research.

I've been reading a site called PhysBizTech. (Who knew?) You might want to check out Deborah Cornell's piece on how the sequester stands to damage that most precious asset for a cancer patient: the hope that if we can just hold out, there'll be better treatments before too long.

Here's the link: http://bit.ly/11BfDgd.

Cornell writes, "The federal government is the largest funder of cancer research, and the sequester threatens to cut this funding by almost 23 percent in real purchasing power."

These 23 percent cuts fall just when we're about to solve the jigsaw puzzle.

Cornell explains: "Many grants today focus on basic cellular biology to understand what causes cancer, what allows cancer to spread from one body part to another, which components to target for treatment, genetic mutations that characterize certain cancers...and so on. These are targeted toward finding more effective ways of killing the cancer without killing the patient."

What hurts most is what Cornell writes next: "Unless the large number of people who are affected by cancer ― as patients, family caregivers, healthcare providers, employers and friends ― stand up and tell Congress to get serious about cancer research funding, affected families will be left with few options and little hope."

Austerity is supposed to harm everybody equally, but we know that's not true. In practice, there is nothing so easy as cutting funding for invisible sick people. So what do we do? Are we supposed to storm Washington with an army of people with pic lines and port-o-caths and bandannas? Yes, I think we are. In fact, I suggest we wear our hospital gowns open at the back. Just so we can twirl around from time to time and show Congress the same respect they've shown us.

Thanks to jannoon028 and freedigitalphotos.net for the IV image.

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Dancing for Roger Ebert

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Hey my people,

Roger Ebert is my hero not just because he was so mighty in the face of cancer. I loved him because as a writer he ENGAGED with what came his way--love, art, death, and everything between. As a critic, Ebert was just what I hope to be, exacting but generous too. If he hated a film, he said so; but he also wished the filmmaker better luck next time. When it came to cancer, Ebert was the finest joycatcher I ever saw. Cancer took his voice; he re-created it. Cancer took his jaw. He kept his smile.

Hey Roger. Thanks for everything. Let's dance.