On top of the Mount

On top of the Mount
Mount Maunganui, NZ

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Thursday, August 15, 2013

Monster in the Closet/Where the Wild Things Aren’t


A monster might emerge from the closet. The monster might eat me. I don’t want the monster to get me.

Oh, look, the Australian Women’s Weekly magazine has an article about a TV presenter I don’t know. I’ll read this story so I won’t think about the monster in the closet.  It says here Simon Barnett and his lovely wife have four daughters. They’ve been married twenty years…

Is the monster coming? Is the monster going to eat me?

AND GNASHED THEIR TERRIBLE TEETH…

Simon says (hey, that’s like the children’s game…) there’s no manual for the two most important things you can do in life – get married and have children. Oh, that’s true. He reads books about relationships. Really? A guy does that? I just finished reading the Five Love Languages and thought its ideas were logical and doable. We invest more hours researching houses or cars than we do before supercolliding our life with someone else’s. Or procreating…

This is working. I’m totally not thinking about the monster in the closet. It’s like he’s not even there.

AND ROLLED THEIR TERRIBLE EYES…

I hear laughter on the other side of the door. Is that a good thing? Would the radiologist share a joke with the technician if he suspected I had cancer? Surely not.

AND SHOWED THEIR TERRIBLE CLAWS…

Simon has four children. His wife is 50 years old, but looks about 40…

The door opens, and a man with more-salt-than-pepper hair emerges. He introduces himself as Dr. Duncan Something-or-other (you expect me to remember last names at a time like this?). Sweat creates an uncomfortably cold tingle under my arms – it’s the product of nerves, fomented by prohibition on underarm deodorant that’s de rigueur for a mammogram.  I sit and shiver in my white gown with its blue flowers, pulling it tighter in a V across my chest.

Are you my monster?  Will you make a life-changing proclamation?

Dr. Duncan says, “We compared the scans we just did of your right breast to past mammograms. I feel confident the changes are in line with benign calcifications…”

You’re not my monster. Thank God you’re not my monster. I knew that. I totally knew that. I wasn’t worried. Even though the first mammogram said, ‘inconclusive,’ and the tech today said something about ‘investigating the changes in your right breast…’

Not that I have reason to worry – it’s not like my mom had breast cancer at age 55, or her sister at the same age, or her grandmother (or was it great-grandmother?) had ovarian cancer. Not like it runs in the family, or anything… And it’s not as if any of my friends have been diagnosed in their forties (three of them, no – four, five… I’ve lost count). And I definitely didn’t sit inside this very facility to hold my friend’s hand after she was called back for a second mammogram and got a surprise needle jab just minutes later (the ‘ambush biopsy’).  It’s not like the biopsy confirmed my friend had breast cancer.

No reason to worry. No monsters here.

AND I STEPPED INTO MY PRIVATE CAR AND WAVED GOOD-BYE AND DROVE BACK ALMOST OVER A YEAR AND IN AND OUT OF WEEKS AND THROUGH A DAY. AND THAT MORNING, I FOUND MY FRIENDS WAITING, AND THE MOUNT WAITING, SO I RAN UP AND DOWN AND ALL AROUND. AFTER, I GOT A SOY LATTE. “AND IT WAS STILL HOT!”


(with thanks and apologies to the late Maurice Sendak for his unforgettable, Where the Wild Things Are)

Friday, August 9, 2013

Free Salmon and Hairy legs

Free Salmon and Hairy Legs

I’m scared to write this blog post. Scared to write about cancer.  Scared I’ll say the wrong thing, say too much, or fail to paint the picture of my week with my sister-in-law, Stephanie.

Mostly, our time in Olympia, Washington was ordinary. Feed-the-dog, load-the-dishwasher and cajole- the-nine-year-old-to-bed ordinary. Watch ‘Impractical Jokers’ on TV ordinary (though some of those jokes are seventh-grade genius – salami down the pants, then back to the customer? Ha!) Mostly, our minutes and hours consisted of gloriously ordinary family routines.

Diagnosis 

Here’s what’s not ordinary: Steph, who just turned 47, was diagnosed in late May with grade IV glioblastoma. Three malignant tumors have infiltrated the right side of her brain, compressing and pushing healthy tissue to the left side of her head. According to Wikipedia, glioblastoma

"is the most common and most aggressive malignant
primary brain tumor in humans...Median survival with standard-of-care radiation and chemotherapy...is 15 months."

This is life-threateningly similar to pancreatic cancer, or swimming with hippos, or shooting heroin while swilling tequila  – which is to say, glioblastoma’s a killer. Steph’s husband John, a child psychiatrist who’s spent years learning about and lecturing on the brain quoted a statistic that four percent of glioblastoma patients survive five years beyond diagnosis. 

However, John wrote June 10th in ‘Steph’s Army,’ (a Facebook group he created) that survival statistics tell the story of the past, not the future:

"...They include all the people who developed this tumor in the years before we had a proven treatment. They also include all of the people who were old and sick before they got the tumor. They include all of the people who received mediocre care, and did not have a tsunami of love to give them strength. And they include all the people who are less optimistic, stubborn and determined than my wife (which is pretty much everyone).

Even if we only get the typical response to treatment, then the tumor will shrink and symptoms will be minimal for a while. This treatment works. If we get lucky, she will be like the 3 people I've met here it town and the several people I've met online who are symptom-free after 1-3 years of treatment.

Steph has a lot of advantages to improve her prognosis. The only strike against us is the fact that we could not remove the tumors before starting treatment.

Steph is afraid of losing her "self" and her mental faculties. Who wouldn't be? But I do not believe that she, or any of you, need to worry about that. At this point, she's feeling great. And it is completely realistic to hope that she will stay that way for a long time."

'Roids and Reality 

Steph’s tumors are inoperable – their tentacles fastened fiercely to the fabric of what makes Stephanie herself. Her only surgery, in May, was a biopsy to determine the kind of mass her cranium contained.

Early on, to relieve pressure on the brain, docs prescribed enough steroids to shrivel the testicles of ten male bodybuilders. ‘Roids made Steph round-the-clock ravenous and even euphoric. John quoted her in June as saying, "Life is awesome. I'm seriously amazed that I feel this way. Shouldn't I be freaked out or something?" 

Steph has since crashed from the drug high, no longer reveling in cancer’s mystery. She’s seeking instead to prolong her life through radiation, chemotherapy, healthy, organic foods, supplements and possibly a clinical trial in Maryland, 3,000 miles away.

Treatment

I got to bring Steph to her final scheduled radiation treatment July 22nd.  We visited Providence Regional Cancer System in Olympia. Its radiation department is called ‘Radiant Care.’ I drove Steph’s Subaru, since she’s taking anti-seizure medications and has been barred from driving. Her nine-year-old son, Sam and I sat briefly in the waiting room while a nurse brought Stephanie into the back. I looked around at other patients and their supporters: Two elderly women checked in at the desk. The other dozen or so people at this cancer clinic appear at least seventy years old.

Sam and I are allowed into the treatment room. Its door bears a lemon-colored sign reading, ‘Caution: High Radiation Area.’ I snap pictures as two women help Stephanie lie on a cushioned table. She’s wearing a custom-fitted mesh mask designed to hold her head in place during radiation.

We exit the room, leaving only Stephanie inside. She’d asked me to videotape the five-minute procedure on her camera phone. A tech tells me to aim the camera at one of the quadrants on a video screen, “You can see what we’re doing over here.” I focus on the image of Steph’s head.

“Where are the tumors?” I ask. I can’t see an outline of a mass. There’s no color – just a black and white image on a screen.

 I wonder what it must feel like, alone in that room, machinery buzzing while beams from a linear accelerator bombard your head.

“You can’t see the tumors during radiation,” says the tech. “That’s something that shows up on the MRI. Steph’s not scheduled for one of those until August 18th.

Treatment ends, and Sam and I reenter the radiation room. Stephanie stands and hugs one employee, then the other. She starts crying.

“I didn’t know I wasn’t coming back here,” she says. “I didn’t expect to get emotional.”

Sam lightens the mood as he dons Steph’s mask, which she’s invited to keep. My nephew reminds me of the Jason character in Friday the 13th.

We sit in an exam room afterwards, where Eava, the nurse, asks Stephanie if she’s having headaches or nausea. The nurse hands Steph a clear purple water bottle that says, ‘Radiant Care.’


Berries, Bubbles and Bearers of Cliches

Our first celebratory errand is Costco, to gather blueberries (packed with cancer-fighting antioxidants), ground turkey and spinach. We sample English muffins and trail mix and treat ourselves to chocolate frozen yogurt topped with berries (more antioxidants, but mostly it tastes good).  That night, Steph makes turkey roulade, which is like meatloaf, with carmelized onions and pesto and barbeque sauce topping.

John returns from his work as a child psychiatrist at an Olympia public health facility. Simon, Steph’s 19-year-old son, and Sam join us, too. John pops a bottle of Prosecco (Italian sparkling wine) and we toast to life. Later, we talk about the things ‘well-meaning’ people say in times of crisis.

“I hope no one ever says ‘I mean well.’” I tell them. “Because I think it’s code for, ‘She’s a dumb-ass.’” Maybe that’s harsh. But my outlook has been calloused by well-intended clichés I awkwardly fielded, like a catcher without a mitt, during the four and-a-half months Sean was sick.

John says, “People will say, ‘Oh you HAVE to see doctor so-and-so, because he’s the best.’ How do they know he’s the best? Most of them have no personal experience…” He continues, “Then, there’s ‘If anyone can beat this, Steph can.’”

I get it. It’s not fair to the patient or her family to raise false hope, or bestow the burden of super-humanness. I’m guilty of naïve comments myself, having told Sean repeatedly while he lie in a hospital bed, “You’re the strongest person I know.”

After he started to wean from morphine, Sean looked at me through sunken, gray-blue eyes and said, “Would you stop saying that? I’m tired of hearing it. It’s getting old.”

I meant well. Dumb-ass.

Talismen

A friend drops in to offer Stephanie yet another talisman – those objects we give to ward off bad luck;  provide proof we were there; or console our friend for the current shitty state of their health.

“I knew when I saw it, it was just perfect,” she says, grinning broadly, nearly breathless with excitement.

The talisman is a single, oblong-shaped pearl on a nearly invisible silk thread. The friend clasps the necklace around Steph’s neck. It’s so tight, the cord appears to cut into Stephanie’s flesh. Steph says it feels fine and has continued to wear it.

Another friend, an artist from the neighborhood, gives Stephanie a large painting of trees in the forest. “It reminds me of our walks together in the woods,” she says.

I’ve brought a silver kiwi bird charm from New Zealand. Steph places it on a bracelet. Another talisman. I also brought Marmite – not a talisman, but a yeasty paste Americans will try on a dare. (“It tastes like graphite, from pencil lead,” John says).

Your House on Cancer

Besides the gift parade, other clues inside the house reveal Steph and John’s lives have changed:  a cardboard sign tacked to the wall shouts, “TUMORS? AIN’T NOBODY GOT TIME FOR THAT!” A this-is-your-life-on-cancer dry erase board sits in the living room, listing nine medications, dosages and when they must be taken.  Pill bottles and boxes adorn the mantle, like figurines for the seriously ill.  Thankfully, health insurance covers nearly all the cost of meds: A twenty-day supply of chemo costs $10,000.

Your Body on Cancer

Cancer’s physical trademarks are evident: baldness, likely caused by radiation, since Steph has retained body hair, eyebrows and eyelashes – and weight gain. Twenty-five additional pounds have asserted themselves on Steph’s nearly six-foot-tall frame. “Why didn’t anybody stop me?” she asks, referring to her tremendous appetite of the past two months.

Cancer sucks, especially when it won’t even grant you a flat stomach or bald bikini line.

But Steph possesses a radiance even brain cancer can’t steal – her blue eyes still shine, her alabaster complexion is that of someone at least a decade younger. She wears brimmed hats when we’re out. Instead of asking ‘What happened to your hair?’ people compliment Steph’s headwear.

Hats and hoods travel to Ocean Shores, where we go to stretch our toes on the beach. When we arrive, the sea is playing hide-and-seek with fog. Sun eventually burns through, and we watch Sam and a friend dig in the sand.

En route home, I share a story Finley’s written. I’d asked the kids to write something about their lives in New Zealand, and my budding author gave me this: 

                When I went to the tolit. By: finley
       As I sat on the tolit I could feel a          tinging up my back + got sum tolit            papper and wiped then washed my hands          and walked out that fealt great!

It wasn’t the story I’d wanted, but it sure made us laugh – hard.

We sang ‘Radioactive’ in the car. Simon, Sam and I joined the refrain. “How come I’m the only one who doesn’t know that song?” asked Steph.

Escape

For the past two months, John and Steph have enjoyed and endured a parade of house guests. Now that cancer treatments are on hiatus for a month, John says, “Maybe we should take out an ad saying, ‘We don’t need any more help.’” What they need is a weekend to themselves. No kids. No guests.

After calling and e-mailing dozens of B&B’s, they find a hideaway in Poulsbo, nearly two hours’ drive up the Olympic peninsula. I want to tell the world, “You should ALWAYS have a vacancy for a couple battling brain cancer; Steph should ALWAYS be first in line; she should ALWAYS get first class treatment and a front row seat.”

You don’t always get the free pass. Not even with three brain tumors. However, you do get a 19-year-old son who postpones a year of study in New Zealand and foregoes a full-time job to work around the house for the summer; you get four free salmon, caught in the waters off Vancouver Island; you get a hair stylist who’ll keep your head smooth by re-shaving it each week at no charge; you get clients who buy your paintings not because they feel sorry for you, but because they appear to genuinely appreciate your art; you get fundraisers and casseroles and friends who’ll whisk your child away for play dates; you get to plan that dream trip to Europe that you will take between treatments…

My Point?

I don’t have a tidy way to finish telling you this story. I can’t provide revelations about life or cancer. I know from experience being the spouse of someone who’s critically ill means sleeping less, focusing less and forgetting more. I know from experience being a patient with a life-threatening condition means sleeping more, sleeping less, losing focus, and feeling like Big Medicine’s bitch.


Maybe the best we can do is recall Finley’s story and remember to wash our hands. At least that’s within our reach.