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. 

Thursday, June 12, 2014

Cane toads

In the first months of diagnosis and treatment, lists of questions littered my spiral cancer notebook in preparation for each medical visit. Questions like this:

Can my specimens be saved for potential genetic, pharmacogenetic and pharmacogenomic studies? (Yes.)

Should I take probiotics during chemo? (No.)

When/how will we scan or otherwise gauge response to chemo? (MRI, halfway and after chemo.)

How long between mastectomy and radiation of I don’t get tissue expanders? (about a month)

What are the pros and cons of a skin-sparing versus regular mastectomy? (Use your imagination.)

What is gated breathing? (a way to minimize collateral damage to the heart during radiation)

When can I get my port removed? (Unfortunately I rushed this one.)

Does L-glutamine help with Letrozole side effects? (Nah.)

Why does radiation make you feel tired? (It kills tons of healthy cells.)

And so on.

Yesterday I saw my cardiologist (well, his physician’s assistant) and my oncologist, for the last time for six weeks and three months, respectively. And my question lists were blank. I just can’t think of anything more to ask. I go to each appointment with the vague hope that I will come away with something new, but deep down I know the truth, as I texted a friend:

 “There’s really no new information to be had and I need to get used to that.”

“You mean no new info on how to deal with pericarditis?” she asked.

“Or cancer. Or prognosis. It just is what it is and it’s time to resume my life. At this point the experts don’t know any more than I do, I just need to find physical and mental coping[i] strategies.”

“It seems so shocking in a way, doesn’t it?” she asked.

“It’s like that with a lot of things, like learning disabilities, autism in kids … you just have to figure out what works. … I guess it’s not shocking to me because I feel like I’ve always been aware of the limitations of medicine. But emotionally you still want more definitive answers.”

“I guess that’s what I mean,” she responded. “It’s very hard to accept that there are no answers.”

We concluded that we humans are just smart enough to royally screw things up for ourselves.

And this, fundamentally, is where my love-hate relationship with medicine originates. I spent a semester during college studying rainforest ecology. I snorkeled naked on the Great Barrier Reef, camped on an island inhabited only by fruit bats, and acquired a tattoo and a collection of scrub-itch scars on my midsection as lifelong souvenirs.

I also learned about the clumsiness of human ingenuity. The cane toad, introduced to Australia to eat beetles that fed on sugar cane crops, proved worthless against the beetles but have become a bane to Native fauna thanks to a nasty poison sac on the toad’s back. It’s potent enough to kill a crocodile or pretty much anything else that messes with them, and the toads are now believed to number in the billions.[ii] They lurked everywhere and we were as scared of them as we were of the pythons in the trails and the venomous spiders in the showers.

We humans mean well, but sometimes we just don’t get it. We can’t predict all the impacts when we tinker with a complex ecosystem, and the human body is one strange and complex ecosystem.   

Medicine is mostly a process of trial and error – we look for things that seem to improve some kind of symptoms or pathology. We do clinical trials in an attempt to assess whether the benefits outweigh the harms. We trade risk, as my rheumatologist said – for example, decreasing the risk of pericarditis recurrence by increasing risk of, among other things, gastrointestinal disorders (with steroids) and deposits on the back of the eye (with Plaquenil); decreasing risk of cancer recurrence by increasing risk of fractures and osteoporosis (with Letrozole).

There are other risks and side effects. The skin on the back of my hands has turned leathery. Lotion pools in the cracks like rain on a parched desert. I looked up prednisone side effects again: yup, there’s dry skin. I tried to avert my eyes from the rest of the sorry litany.  

And those are just the known risks. We don’t understand all that goes on in the darkness under our skin. Everything we introduce has the potential to be cane toads.

And so, ultimately, the job of a patient is to accept the limitations of medicine. I don’t want to place all my hopes on some external cure or palliative or I will find myself taking layer upon layer of drug to mitigate the effects of the one before.

I am also trying to learn patience: Be a tortoise, not a hare, I keep telling myself. When I want to be off steroids NOW, when I have to walk instead of run, when I am tempted to double the reps in physical therapy – be a tortoise, be a tortoise. Slow and steady wins the race.  

An article in yesterday’s New York Times described a shift in the understanding, treatment and prognoses of breast cancer. This bit caught my attention:

“‘There’s no right or wrong decision, as long as patients are well-informed and choose what is best for them,’ said Dr. Jennifer K. Litton, a surgical oncologist at M.D. Anderson Cancer Center in Houston. ‘The old days of paternalistic medicine are gone.’”[iii]

I have learned what I can from my doctors, my body, the terrifying drug inserts; now it’s up to me to cultivate acceptance and patience, and to find a way to balance risk and reward in my life. We can look for guidance, seek a guru or a quick fix, but in the end, we are the only ones who inhabit our own lives and bodies.

[i] I actually wrote “cooing.” I am a terrible thumb typist.  

[ii] Looks like the problem is only getting worse. See National Geographic News’ Poison Toads Leap Across Australia:

[iii] Outsmarting Breast Cancer With Evoloving Therapies, by Jane E. Brody:

Running down a trail near North Beach in Port Townsend. The simple joys...

Canoeing with Brian and Alder (hidden behind me) in Eagle Harbor.

You can put just about anything in a rice paper roll and it'll be delicious. Suggestions: shredded carrots or other crunchy veggies; shrimp or shredded chicken; and lettuce, fresh basil, cilantro and/or mint. Use sweet, salty and/or spicy sauce.

The wheel of life aka morning meds. 
Starting down beautiful Mt. Townsend.
Just had to add this picture of Alder jumping off a rock and throwing a frisbee. (credit: Brian Hild)
...and this one of me looking contemplative at North Beach. (credit: Brian Hild)
Ordway Mathfest. Play six games and get a cookie and milk. Math + sweets = Alder heaven.