Monday, May 1, 2017

Adventures in Cancerland - the Sequel

As most of you have heard, in April I was diagnosed with choroidal melanoma – eyeball cancer. The diagnosis set off several weeks of travel, treatment, and decisions. And of course, another overwhelming round of generosity and kindness from my friends, family and community. I know many people have questions, so I invite you to peruse the FAQ below.
1.       Eyeball cancer? Seriously?
Yeah, who even knew? Ocular melanoma is a rare form of skin cancer diagnosed in approximately 6 in 1 million Americans annually. Risk factors include having fair skin and light eyes, and a history of welding or sun/snow burn. Almost 20 years ago an optometrist found a nevus – basically a freckle – in my right eye. Apparently an estimated 1 in 500 such freckles become cancerous over ten years.[1]
2.       Is it related to your breast cancer?
Fortunately this is not a breast metastasis but a whole new cancer. It’s way better to have two unrelated local cancers than one cancer that’s metastasized, or spread to distant organs. That said, I’ve heard of several people who got this cancer following breast cancer treatment and as I’ve written before, the body is a strange and complex ecosystem we don’t fully understand.[2] 
3.       How did you find it?
The vision in my right eye got blurry. It took me a while to realize that a lot of squinting and eye rubbing wasn’t doing any good. I went to my eye doctor, who pronounced the situation “very ominous” and sent me to Anchorage post haste for further tests and referral.  
4.       What’s the prognosis?
Most people with relatively small tumors like mine who receive the treatment I received don’t experience recurrence or metastasis. I may learn more when genetic studies of my tumor are complete but I feel pretty good about my risk of metastasis being low.  
5.       Will you lose your sight?
My left eye will be fine. The vision in my right eye is affected by the tumor and will likely deteriorate further as a result of treatment. Because the macula is “involved” in the tumor (medical euphemism for totally engulfed, based on the computer simulation I saw), I anticipate kind of a black hole in the center of my field of view in the right eye. There are lots of people with limited or no sight in one eye and they say you adapt.
6.       What’s the treatment?
There were two phases: surgery to biopsy the tumor and prep the eye for proton-beam radiation; and – two weeks later – four doses of proton-beam radiation. Proton-beam radiation is essentially a higher-intensity, higher-precision form of radiation used to treat tumors near sensitive organs (i.e., the brain) and in children, where you really want to minimize collateral damage. The energy in the protons dissipates when it hits its target, sparing the tissue around it. Here’s how the National Association for Proton Therapy sums it up: “As a result of protons' dose-distribution characteristics, the radiation oncologist can increase the dose to the tumor while reducing the dose to surrounding normal tissues.”
FYI: Surgical removal of ocular melanoma isn’t advised because cancer cells can be dislodged in the process. Chemotherapy is not standard of care unless it’s metastasized. Removal of the eye is advised in some cases, such as with very large tumors.
7.       What was the treatment like?
WARNING: I love talking about this, but if you’re squeamish you should skip this part.
In surgery, the doctor cut open my sclera, the white outer layer of the eyeball. This enabled the surgeon to roll my eye over, stick a needle in the tumor to collect some cells, and sew four tantalum markers to my eyeball to indicate the location of the tumor. Tantalum is a nonmagnetic metal alloy, which makes it TSA and MRI safe. But it shows up on x-rays, and the radiation oncologists x-ray the eye and use the location of the markers and a bunch of other measurements and computer modeling to develop a customized radiation plan.
The radiation team also makes a mask and bite block for each patient to make sure the protons hit the exact right spot. It’s kind of Phantom of the Opera-esque – see photo below.   
The cool thing about proton-beam radiation is it requires a particle accelerator. This means I went daily for four days to the Crocker Nuclear Lab at UC Davis to put my eyeball in the path of a beam of protons raised to nearly the speed of light by a 76-inch-diameter cyclotron. I’m not entirely sure what a cyclotron is, but the staff at Crocker are proud of it and of their relatively long history of medical application of nuclear science. I came to feel very fond of the place and the people there.  
Each treatment begins with a series of x-rays during which you stare at a flashing red light. Then the team adjusts you – 1.3mm this way, 0.5 mm that way, until they’re satisfied you are properly lined up. Then come the eyelid retractors – one of the radiation oncologists pulls my lower lid down and applies special tape. She does the same to the top lid, but since my tumor is low, she really cranks on the lower lid to try to get it out of the way. That’s the only uncomfortable part of the treatment, if you don’t count the recovery from surgery, which was brutal.
Then they all leave the now-darkened room. At this point my knees have been strapped to prevent involuntary movements, and my face is immobilized by the mask and bite block. I try to keep my breath steady and focus on the lilting South-Asian voice of the physicist: “Look at the red light … keep looking at the red light …”
I know that the effectiveness of the treatment as well as the risk of collateral damage depend in part on my ability to keep my gaze fixed on the blinking red light in the upper right side of my field of view. The actual proton-beam treatment lasts just over a minute and I feel nothing. They talk me through it via speaker, saying you are doing great … you are one-quarter of the way through … keep looking at the red light … you’re right on target… treatment is complete, we’re coming in now.
8.       Do you have to do more treatment?
No. I’ll need to get scans every so often, but assuming the cancer doesn’t metastasize, I’m done.
9.       What can people do to help?
Consider using a little bit bigger font when you email me. If you’re in Juneau, join me for outdoor adventures and be patient with my less-than-ultrarunner conditioning. Let me be of service so I don’t feel like a taker all the time. If you’re an Alaska legislator and you’re reading this, please pass a fiscal plan.
10.   Why you?
I often think of Annie Geselle, a Juneau woman who slipped on an icy sidewalk in front of her house one day, and experienced a life-altering brain injury. She told a reporter: “Someone once said to me, ‘Oh you must think, ‘why me,’ and I thought, ‘I never once thought that.’ It could happen to anyone, so why not me? Better me than someone who would say ‘why me?’”[3]
I can relate to Annie. For most of my life I have wondered, “Why am I so fortunate?” There are people living in cardboard boxes on highway median strips. I am keenly aware that by sheer luck I was born in a peaceful country to loving parents who provided a first-class education and a childhood free of fear and violence.
To this day, I have personally experienced only love and kindness in my life. When I left Dr. Breffeilh’s office after hearing, “You have cancer,” I walked down the hall into my friend’s pediatric clinic. Before you could say choroidal melanoma she had handed me a chocolate bar and was on the computer getting me a plane ticket. Friends took Alder with 30 minutes’ warning and no questions for what turned into a multi-day sleepover. Others held my hand through each medical adventure, while my Juneau neighbors, colleagues, friends and congregation provided everything from cat care to food to donated leave. The love and care are life-sustaining. I hope someday to give back a small measure of the grace – which I view as human more than divine – that my children and I have received.  

And now for the photo gallery, in roughly chronological order...
A huge bonus of this eye cancer thing was spending five days with my friend Khira and her family. Here we are the night before my surgery.
The day before leaving for my "radiation vacation" - adventure, friendship and beauty to fill my soul with strength.
White Vader preparing to take on the proton beam.
My friend Heather, and Alder with his new blue Mohawk, at Crocker Nuclear Lab. We spent at least an extra hour each day hanging out there, just because.

We were well fed thanks to Farmers Kitchen CafĂ© and Congregation Sukkat Shalom.

The bike rental guy told us Davis has the highest per-capita daily bicycle use in the nation. Take that, Portland!

We scared this poor turtle that wandered onto one of Davis' bike paths into peeing.

Zoom in to see tantalum markers sewn into the back of an eyeball.

[1] Ocular Melanoma Foundation, Understanding Choroidal Nevi,
[2][2] See Cane toads, previous post about collateral damage and unknowns,
[3] Amy Fletcher, Rebuilding A Life, Juneau Empire,

Sunday, February 7, 2016

On the water

In June 2013, on an uncharacteristically warm night, I was lying in bed wearing a tank top. My right arm over my head, I flung my left arm across my chest, and my fingers landed on a lump.

It turned out to be a knot of cancerous lymph nodes.

I was diagnosed with stage 3 breast cancer, and my life quickly turned upside down, with a rapidly executed relocation to the Seattle area for treatment. We moved to Bainbridge Island, which in some ways is less of an island than Juneau. You can drive off it, for one thing – a short bridge on the north end takes you to the Olympic Peninsula. Or you can take a 35-minute boat ride to downtown Seattle. The Washington State 
Ferry offers departures about every 50 minutes from 4:45am until 1am.

My treatment started with chemotherapy.

A typical chemo day began on the second floor of my cancer institute. After the inevitable wait, I’d be called back and a nurse would access my port. A “portacath” is basically a titanium button with a rubber septum on one side that functions as a pincushion. The other side funnels into a catheter that’s inserted into a vein. The whole thing was sewn under the skin just below my left clavicle. When it’s time for chemo, a nurse pokes a needle through my skin into the pincushion and – voila – maximally efficient transfer of poison through the bloodstream.

But first, the nurse draws some blood out through the port to check my white blood and red blood counts. Chemotherapy drugs target any fast-growing cells, blood cells included. My counts are always low, but never low enough to preclude the next administration of poison.  

Next, it’s upstairs to the fifth floor, where I wait again. Then a nurse takes my vitals and reads a list of questions: “What’s your pain level?” “Any nausea or dizziness?” “Any mouth sores?” “Fatigue?” And my personal favorite, “Have you slipped or fallen this week?” Did I mention that cancer treatment is humbling?

After another wait, I have a similar chat with my medical oncologist. Finally, I am given a yellow slip of paper that says “GOOD TO GO.” I carry my hall pass to the third floor, where I hand it to the denizens of the front desk and sit down to wait with my fellow cancer patients for our infusions.    

We stare at the fish in the aquarium or try to fit a piece into one of the impossible jigsaw puzzles. We have rubber hoses sticking out of our clothes, bandages taped to our hands, clumps of fuzz sprouting from our heads. Some of us lean on canes or walkers or our companions. Some smile, compliment each other’s headwear, flip through a magazine. We are a sad allotment of humanity, but it is a peaceful tableau. Somehow, when one is faced with a potential life-ending disease, the everyday stress recedes. We exist very much in this moment.  

I had three chemo drugs: adriamycin and cytoxan were administered together for two months, followed by two months of taxol. Adriamycin is a bright red liquid that is murder on cancer cells as well as hair, nails, and often hearts. Heart damage can occur quickly or at any time in the future. Adriamycin is considered too dangerous to administer by IV drip as it can damage skin or muscle tissue on contact. A nurse sits next to me and slowly pushes several large vials into my port. The nurse wears gloves and a mask lest any leak out. One nurse buttoned her white lab coat to the throat.

Before she puts the chemo down the chute, the nurse injects a bunch of drugs meant to help you survive the chemo: Decadron, Pepsid, Zofran, Benadryl. All of this tends to make one a little loopy, and I am probably pretty entertaining for my chemo buddy, when I’m not dozing off. 

For each infusion, I have a buddy. Brian is there for some. Friends from Juneau join me for the others. My chemo buddy keeps me company through the long waits, distracts me from the perturbing scene of inbound toxins, runs out to get my favorite organic quinoa from a cart across the street. When I am getting taxol, my chemo buddy is also my ice assistant, helping me chill my fingers and toes in an effort to prevent neuropathy. 

My chemo buddy makes it a party - a party celebrating the ironies of cancer treatment, celebrating friendship and love, celebrating life’s surprises, celebrating the will to live. I couldn’t face chemo without a buddy. 

When it’s all over, some seven or eight hours after the initial blood draw, a nurse disconnects me from the tubing and my port is again just a lump under my skin. I walk the 12 or so blocks downhill to the ferry and head home to Bainbridge.

I have occasional conversations on the boat, particularly while waiting to disembark, when the walk-ons get squeezed together at the chokepoints.

 “I like your hat,” is how these conversations usually begin.

“Oh, thanks,” I say.

“Are you in treatment?” they ask, gently.

Once, following the hat entree, a woman tells me she also had breast cancer. The chemo drugs ruined her heart, she says. She had bad doctors. Now she has a bad heart and a brain tumor. I’m sorry, I say. We walk off the ferry calling, “Good luck!” 

Another time, a man with a rolling suitcase, crushed up near me as we disembarked a rush-hour ferry, starts in with my hat, asks if I’m in treatment, and proceeds to tell his cancer story. His daughter had leukemia at age 15. The treatment was brutal; she was so tough; it ruined his marriage.

And? I ask.

Misty-eyed, he looks away with an apologetic shake of his head, suddenly realizing I don’t need to hear of cancer defeats. I’m sorry, I say. We disperse into the crowd crossing the gangplank.  

Despite the macabre stories people seem drawn to share with me, I like how the ferry brings me into contact with this flow of humanity. We are quite literally sharing the journey. It beats being in a car, alone in your commuter capsule, locked in combat with thousands of other soulless commuter capsules.

And these ferry conversations are exceptions. Mostly, I talk to no one. I don’t do much of anything. I sit and stare out the window, or lie down on one of the long padded benches and rest. I don’t read much, or play cards, or text. I never even see an orca.

But these ferry rides are vital to my treatment. I suppose it’s like sleep – it feels like nothing is happening, but it’s in sleep that our brains consolidate their gains, build new synapses; we heal from the day’s insults.

The ferry is my portal between worlds. In the morning, I’m a mom, kissing my son before he boards the school bus for kindergarten. Crossing the water, I enter a sick zone. I become a cancer patient.
On the return journey, I am cleansed of sickness, returned to an island of healing. On the water, crossing over, I find the peace and serenity I need to redefine myself as whole, healthy, healing, and fully human.   

Bainbridge ferry, spring 2014 (photo credit Brian Hild)
View from the ferry, November 2015

And more recently, Alder at Eaglecrest

Rosie at Eaglecrest

Moms at Eaglecrest ... Sunday morning skin-and-ski with Emily and Cheryl
Winter adventure to Windfall Lake Cabin

Girl with a weapon.

Wednesday, November 11, 2015

Of eggshells and heart sacs


It’s been a year since I last posted, and I’ve missed it. Writing for others seems to help me crystallize my thoughts and stay positive so ultimately, this exercise is for myself. With that, here is today’s offering…

I was making pancakes this morning for Alder and his friend, idly breaking an egg when my mind wandered back to a sixth-grade field trip to the Beth Israel Hospital in Boston. The tour included the hospital kitchen. I vividly remember a guy standing in front of a vat, or rather, I picture the vat itself – an elongated rectangular trough that was apparently some kind of cooking apparatus. In my mind it was gigantic, and was filled with gallons and gallons of yellowish liquid. A man in a paper hat stood before it, dragging a large metal spatula back and forth through the trough of what turned out to be eggs. 

As he sloshed around the yellowy ocean of congealing egg, the cook told us a story. He told us ships’ cooks had to use powdered eggs on long voyages at sea, and they tasted terrible. But the cooks would pack a few real eggs. They’d crack one egg into each batch of fake eggs and throw in the whole thing, shell and all.

Eliciting the anticipated “Eww!” from his audience, our chef got to the punch line: When sailors would come across little bits of shell in their eggs, they would think they were eating real eggs.

I’m not sure why this story stuck with me. At the time, it was the horror of it. The thought of someone intentionally poisoning breakfast with the shards of eggshell appalled me.

It also conjured the difficulties of the seafaring life in a visceral way. There is nothing worse than grinding your teeth on an errant bit of shell. To have that experience be a positive – something that would somehow lift one’s spirits – tells you how low those spirits must be. I think my spoiled little 12-year-old brain realized for a brief flash that if a sailor’s life is so miserable that eggshell in his food is a bonus, I’ve got it pretty good.

My pericarditis seems to be the eggshell in the food of my life. It manifests as discomfort created by friction between the heart and the heart sac, or pericardium, and is a result of inflammation of the pericardium. Cardiologists describe the sound they hear through the stethoscope as a rub. Ay, there’s the rub. Indeed.  

It started when I was about 95 percent through "active" cancer treatment, down to the last five days of radiation. Through a series of mishaps beginning with my delaying care (i.e., my old friend denial) and continuing through misdiagnosis and a potentially fatal administration of the wrong drug, I found myself hospitalized with a giant needle in my chest in February 2014. The needle aspirated the fluid that was compressing my heart and limiting its ability to pump blood.

The inflammation at the root of the problem has since been controlled by another drug, less immediately lethal but more insidious as it has a tendency to rob the body of its ability to perform essential functions. I have tried for 20 months to wean off that drug, and as I have written before, have repeatedly “failed taper.”

The most recent failure occurred last month. The symptoms were subtle enough that I could deny it for a few days, and there is good reason to travel that River of deNile. Because here’s the thing with steroids: when you’re down to, say, 4mg per day, and your symptoms flare up, you can’t just tamp it down with a 20mg hit and revert back to 4mg. No, you have to start the taper again. It’s like Candyland, where you’re almost to the candy palace and you pick up Mr. Plum, banished back to square one to start the long slog again.

I have tests and appointments in Seattle on Friday. I look forward to them with that vague hope that something new and encouraging will come of it. Plus, I love the warm blankets at Swedish, and the aquariums and jigsaw puzzles and the attention of medical professionals. I have a twisted sort of nostalgia about my cancer treatment, and there is comfort in seeing my doctors and nurses again.

Maybe my cardiologist will magically tell me my heart looks perfect, and declare that THIS TIME the taper will work. My oncologist will tell me my bones aren’t melting away despite the calcium-dissolving properties of three of my medications. She’ll tell me those medications are keeping the cancer at bay, that I will be able to raise my children, look to the future. I am, after all, only halfway to 89 as of my half-birthday last month.  

As I made pancake batter this morning and remembered that sixth-grade field trip, all these thoughts came tumbling into mind. For a brief moment, not quite an epiphany but a moment of clarity, I realized there was a lesson in the story the paper-hat-clad cook told us in the bowels of Beth Israel Hospital 30 years ago.   

Today I recognized the eggshell story as a testament to the power of the mind. I can only assume that that bit of calcified grit in their breakfast triggered an association in the sailors’ stomach or brains, and – here’s the kicker – the eggs tasted better for it.  

It’s a classic paradox. Maybe, I thought, I can turn my assumptions on their heads. Maybe it’s all about the eggshells, the gritty bits in the teeth of our lives. They remind us of what’s good and real, conjure a gut-memory of the deliciousness of life. That faint rub in my heart is telling me that I survived cancer, that I may be out to sea where the eggs are made of powder, but I am strong and alive and able to savor what I have. Or maybe I’m deluding myself – but that, again, is the power of the mind, and I’ll take it.  

A highlight of our lives was hiking the Chilkoot Trail for five days in August. I first hiked it 20 years ago, and even before I had kids I wanted to take them over the Chilkoot Pass. I'm grateful to Joy for helping make it happen, and to Rosie and Alder for being so game. 

Rosie and her pal Anna ran "Beat the Odds" 5k . I was at home succumbing to the odds.

Rosie and Alder in July on Little Haystack, surveying the upcoming route over Franconia Ridge in New Hampshire.  

Portrait of a Working Mom, a.k.a. how Alder entertains himself while I neglect him. Who knew my crappy phone could do this?

Let's see what happens when you put an African fat-tailed gecko and a cricket in a Magnetile maze...

Monday, November 10, 2014

When the fix is ... nonexistent

On July 4, 2004, I watched an only-in-Alaska sporting event called the Mt. Marathon race in Seward. Runners climb 3000 vertical feet in a mile-and-a-half, then turn around and scream down the mountain. The fastest runners average 12 miles per hour on the descent. To borrow from Woody in Toy Story, “That’s not running, that’s falling with style.”

The mountain is mostly bare rock, and you can watch much of the action from the streets of Seward, where the race starts and ends. I watched runners stumble across the finish line mud-spattered, bloodied, gasping for air.

I had to do the race. I just had to. The giddy thrill of my spectating experience instantly morphed into a delusion that I would run the race the following year. I wandered around Seward babbling my newfound ambition to anyone who would listen. Locals explained that I would literally have to win the lottery to get a race number. I was undaunted.

Undaunted, that is, until I hiked the trail the next day.

Patiently indulging my fantasy, John took then-two-year-old Rosie to the aquarium while I climbed Mt. Marathon in preparation for my race. Several minutes up the trail, I encountered the rock wall I had watched tens of racers deftly skitter down as they neared the race finish. I could not, but not, find the nerve or the fingerholds to scale it. After several attempts, I succumbed to my fear and sheepishly trudged up the trail that wound around the backside of the cliffs. The rest of the ascent was an exercise in staying attached to the mountain on the loose scree and tethered to my bearings as fog ensconced my world.

On the descent, I again attempted the cliffs, again chickened out, and then and forever stopped talking about getting a race number.    

Memories of my Mt. Marathon experience flooded back when, in 2012, a Mt. Marathon racer disappeared. Michael LeMaitre had never hiked the trail, and he was the last racer up the mountain. Race volunteers at the turnaround rock, situated below the summit, left before he reached their perch. They passed him heading up and asked if he needed help. He said he was fine. That was the last anyone saw of him.

His distraught wife sued the City of Seward, which sponsors the race, for $5 million. Last month – after more than two years of legal warfare – the City announced a settlement for $20,000, the minimum the city figured it would cost to go to trial.[i] Throughout the case, vitriol and suspicion flowed from city authorities; Peggy LeMaitre was painted as greedy, manipulative, moronic. It was suggested she staged her husband’s disappearance for money.

I read the news stories with abject horror. Last month marked four years since John’s death.  After he died, several friends suggested I consider suing for wrongful death. There was a reasonable case: the barrier he’d innocently vaulted was apparently below the required height for barriers that conceal a drop. Money could help offset the loss of his income.  

But I knew that suing would shunt time, money and spiritual energy from the work I needed to do healing and raising my children. I knew that wrongful death cases have a low rate of success. And I suspected that, should the case hit the papers, the greedy-widow narrative would bubble to the surface. And most of all, I knew in my heart that even the best-case scenario, a legal “win,” would not lessen our anguish.

John’s accident was one-part bad luck, one-part bad judgment. Or maybe two-parts of one, one-part the other. The point is, all accidents are some combination of a potentially unsafe situation and an error or series of errors in judgment. The law is ill equipped to find truth in these situations. Accidents are nuanced events.  

But several people counseled me to keep my options open. So I talked to an attorney, and filled out a form that effectively put the City of Minneapolis on notice that I reserved the right to sue, thus freezing the statute of limitations. This bought me time, and helped me think through what I wanted. And what I really wanted was for no one else to die the way John did. I wanted the barrier made safer.  

In the end, largely through the persistence of John’s mother, that’s what happened. The city determined that the barrier was below height standards for bicyclists, who were at risk of toppling over it while riding alongside it over the bridge. The city added a metal rail, raising the height of the concrete barrier.

Perhaps the city’s actions suggest I might have won my hypothetical lawsuit. Probably not. The law is an ugly beast. More likely, like Peggy LeMaitre, I would have been left bitter and depleted and mired in injury that’s been compounded by insult.  

I imagine Peggy never saw it coming. Wrongful death attorneys with their no-money-down deals can seem like a safe gambit. Well-meaning friends and family probably encouraged her to seek justice or demand accountability. She was vulnerable, hurting, angry; and the people who loved her wanted to fix it.

Therein lies the rub. Human compassion compels us to want to solve problems. When we see someone hurting, we want to jump in and save them, take action, do something – anything.  
But there are problems that can’t be solved. I’m not the most Zen of people and I can’t meditate to save my hide, but I’ve come to see that there are some situations you can’t fight your way through. You just have to sit with the pain, the loss, the lack of explanation. Sometimes there’s no reason and no remedy.  

I experienced something similar, albeit on a smaller scale, with the loss of my breast. As fast as they could say you’ll-never-be-a-lumpectomy-candidate (doctor-speak for, “we gotta slice this whole sucker off”), every medical professional I encountered assured me I could get reconstruction (doctor-speak for “fake boob”).

What they’re slower to explain is this: a fake breast will never look or feel like a real breast, and it will take varying degrees of time, money, discomfort and risk to construct. In my case, it would likely have required a high degree of all of them, and after figuring that out, I opted out. A year after my modified radical mastectomy, I’m comfortable in my body, relieved to be done with needless procedures, and glad I resisted the tacit pressure to pursue a fix.

My point is this: If someone you know is experiencing loss – whether it’s a spouse, a breast, a job, a house, a marriage – you don’t need to suggest a fix. Sometimes there is no fix.

But if you can’t solve your friend’s problem, you can sit with them through the long process of getting used to it. Bring flowers, bring chocolate, bring quinoa-kale salad. Bring a good joke. Bring your running shoes if running is better than sitting. Most of all, bring your patience. Help them get through each hour, each day, until the habit of living slowly brings joy and color back to their world.   

On one of Joy's and my less ambitious but always enjoyable hiking adventures. I'm having difficulty getting pics off my camera (operator error) so pics are limited.

Not Mt. Marathon -- Zombie Run in Juneau. The zombies got me but Alder outran them for 5 whole K!

With help from Sarah's mom, my awesome daughter Rosie and her friend Sarah MADE their Pink Ladies jackets.

Meantime, Legoman might be my crowning creative achievement. Design credit goes to Alder, and "making it happen" credit goes to Amy, with love and appreciation.

And love and appreciation to Brian, whose talents include installing bamboo flooring.

Thursday, June 26, 2014


The past few weeks have been dominated by Stuff. We sent 300 pounds of Legos and other assorted goods to Alaska by barge, mailed three boxes of books and files, and filled five 50-pound suitcases to take advantage of Alaska Airlines’ free checked baggage for Alaskans.

We got rid of even more stuff. We gave most of it away but there was one item I had a hard time letting go of – a Kenwood car stereo deck. It’s not that I wanted it, I just wanted money for it.
The car stereo (upside down, sorry)
Remember Shel Silverstein’s poem, Smart[i]? I read it to Alder recently as he was learning about money, and I couldn’t help thinking I’d been the fool who turned her dollar into five cents.

Yes, this has something to do with a car stereo. It starts last summer, when in my frenzy to leave Juneau I failed to ship my car to Seattle. In August, while driving a borrowed car, I rear-ended someone (a car dealer, it turned out).[ii] I again considered shipping my car down, but it was the end of summer and vehicle slots were booked for several weeks. I decided to buy a car. I test-drove a bunch of Priuses and then purchased a 1990 Toyota Corolla with 202,000 miles. I thought it was wildly funny that I bought a car that was older than the guy who sold it to me.

He had replaced the engine with a Japanese one with only 85,000 miles, and had replaced the brakes and tires. It had no rust, all service records going back to its conception, and a skookum stereo. Suddenly $2400 seemed reasonable. I figured I could drive it back to Juneau with all our stuff and sell it there, or sell it in Seattle before we left and recoup most of my money.  

In theory. Enter reality.

After taking Brian to Bellingham in January (our first major highway drive in old faithful), Alder and I spent the weekend with friends in the area. Driving home Sunday afternoon, I felt a bang. I was in the third lane from the right on four-lane I5, and managed to limp into the breakdown lane before the car crapped out entirely.

I turned on the hazards and assessed the situation. It was raining buckets and darkening quickly. A sign said Exit 202 was one mile away. The car shook with every passing vehicle. Alder sat big-eyed in the back seat.  

I called my dad and said casually, “Hi Dad, can’t talk but I was just wondering if you could give me Mom’s AAA number again? Thanks.”

Before he could ask a question, I hung up and called AAA. They promised a tow.  

For the next hour-and-a-half, Alder and I sat in the darkness in the shuddering car. We stayed buckled. I almost had Alder wear his bike helmet, but figured it would scare him. And if an 18-wheeler nicked us, we’d hurtle off the embankment and Alder’s Styrofoam brain bucket would be worthless.   

A car rolled to a stop in front of us. An old guy got out and I was terrified he would be flattened walking over to us. I cranked down the passenger window and he leaned in. “I saw your little car. I have the same one so I thought I’d see if I could help.”

I told him Triple-A was on the way, though by this time I was becoming doubtful. He wanted to push us farther into the breakdown lane. I told him I had tried putting the car in neutral, but even on a downward incline it wouldn’t roll. He pushed the car anyway. It wouldn’t budge. It wouldn’t go into neutral.  

He asked if I’d sell him the car, and wrote his name and phone number for me. Jack. He told me he’s 75 years old and cars are his hobby: “Some guys go fishing. I work on cars.”  

By this point he looked like a drowned cat. There was nothing more he could do for us, so he left.
The tow truck finally arrived, huge and Technicolor light-flashy. This wasn’t a hook-up-your-car-and-pull tow truck; this was a big rig with a ramp and an overhead pulley system that picked up our little tin can of a piece of crap car and gave it the ride of its life. Alder scaled the steps up to the cab and got the ride of his life.  

The tow truck deposited us in a lot in front of a place called Wright Automotive. I asked what town we were in. Marysville, he said, and left. It was now 8 p.m. Sunday evening, and we were alone in a dead car in front of a closed auto shop.

Fortunately, we had friends who would be returning to Bainbridge from up north, and when I called they offered to pick us up. I have no idea how we would have gotten back to the island without them.     
Our friends were about an hour-and-a-half behind us. I was relieved to be off the highway, but disconcerted by the occasional pickup truck that would circle the semi-abandoned lot. I turned off the interior light and slunk down in the seat. When we started to get chilled, I dropped my aversion to idling and turned the car on for heat and tunes. I cleared off the front seat so Alder could party up front with me. We ate granola bars and clementines and had a Beverly Cleary reading marathon. Alder never complained.  

When our rescuers arrived, we gratefully loaded our stuff and ourselves into their van. By the time we got home, we had turned a three-hour trip into a seven-hour epic.[iii]

We were also without wheels again. The next day James at Wright Automotice called to deliver the verdict: transmission is dead, and the car isn’t worth investing in a new one. It’s totaled. He said I might be able to get $300-400 for it from a “pick ‘n pull.” They tow your car, take what they want for scrap, and dispose of the rest.

I called good-Samaritan-Jack, I called some pick ‘n ‘pulls, and I called Jack again. We met him at Wright Automotive four days later (I borrowed a car). He gave me $400 and I gave him the keys to the castle.

We agreed I’d keep the stereo, but Jack didn’t have tools to remove it. James-the-mechanic said he’d charge me labor to remove it, and that if I left the car in his lot another day he’d charge me to store it. Jack then had an idea, and produced a new-in-the-box car stereo from his car. I took it, rationalizing that I could sell it for $100.    

James watched the entire transaction with bewilderment. When I asked about Washington state sales taxes, he said there would be no tax because the car had no value. Jack was unfazed. “I like these little cars,” he said. Now he would have two – plenty of parts.

Jack told me he thought he could get a used transmission for $500 or so, and could do the work himself. He told me he’d messed up his life and lost his family due to alcohol. He said he’s been sober for 20 years. He told me he likes to help people by volunteering to change their oil and work on their cars.

He called me a few days later to tell me he’d registered the car. A few days after that, he called to say he’d found a used transmission for $550.  

This was January. In May, as I contemplated shipping our inexplicable accumulation of crap back to Juneau, I offered the car stereo on Craigslist for $40. The first respondent asked if I’d trade it for medical marijuana. That’s rich, I thought. The other two prospective buyers wanted me to meet them off Bainbridge Island.  

I listed it again on Craigslist last week for $30. A guy asked if I’d take $10, or wait until Friday when he’d get paid. I felt sorry for him and said I’d take $20.

When he showed up (in a tow truck, as it were) and I took his ratty ten-dollar bills, I felt foolish. I had been giving away clothes, toys, books, a case of Ensure, food, cookware, a bike. But that damn car stereo represented all that was left of a bad investment, and I was determined to get something for it.

It’s kind of like when everything is going wrong but dammit, your hair looks good! Or when your to-do list overwhelms you, so you add “brush teeth,” and check it off. You gotta do what you gotta do, and sometimes you just have to laugh at your own incredibly imperfect humanness.   

A note on our whereabouts: After a whirlwind week of packing, purging and cleaning, Alder and I said goodbye to Bainbridge on Monday and flew to Boston, where we reunited with Rosie. We’ll be here a few weeks before trickling back to Juneau separately. 

At his last Lego Club, the instructor asked Alder if he's excited to go back to Juneau. He paused and then said, "I'm excited to go to Juneau, but sad to leave here." In many ways life was relaxed and easy on Bainbridge. People were kind to us, the school was wonderful, and we are grateful for all the island and the community provided.

[i]“Smart,” by Shel Silverstein
My dad gave me one dollar bill
'Cause I'm his smartest son,
And I swapped it for two shiny quarters
'Cause two is more than one!

And then I took the quarters
And traded them to Lou
For three dimes--I guess he don't know
that three is more than two!

Just then, along came old blind Bates
And just 'cause he can't see
He gave me four nickels for my three dimes,
And four is more than three!

And I took the nickels to Hiram Coombs
Down at the seed-feed store,
and the fool gave me five pennies for them,
And five is more than four!

And then I went and showed my dad,
and he got red in the cheeks
And closed his eyes and shook his head-
Too proud of me to speak!

[ii] See “Chemo brain” for the gory details:

[iii] This is one of those stories I don’t usually tell my parents until several years have passed. I was prompted to recount this adventure by Mike Hawker, who can only aspire to mishaps like mine.  

Kindergarten graduate with his cookie.

Celebrating the last day of school with friends on the ferris wheel. Fear and thrill mixed.

An inadvertently pink lunch with Koh (beets, red cabbage, red onion, and apple).
My parents' 52nd anniversary was Tuesday. I'm so grateful for the love and care they give, not only to my family but to everyone in their sphere, and far beyond.

Overheated but happy berry pickers. Rosie has been sweet to little brother.

Not the most successful lemonade stand, but possibly the most scenic.

We love Good Harbor Beach in the late afternoon.