Thursday, June 26, 2014

Smart



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: http://alaskamamaruns.blogspot.com/2013/08/normal-0-false-false-false-en-us-x-none_29.html

[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: http://news.nationalgeographic.com/news/2004/11/1129_041129_cane_toads.html

[iii] Outsmarting Breast Cancer With Evoloving Therapies, by Jane E. Brody: http://well.blogs.nytimes.com/2014/06/09/outsmarting-breast-cancer-with-evolving-therapies/?ref=health


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.

Friday, May 16, 2014

Forgotten but not gone

I attended my 25th high school reunion in Boston last weekend. High school for me did not involve pep rallies, parties, sex, drugs and rock-and-roll. Alas no, I attended an uber-academic, all-girls, 8-year prep school. I don't even try to describe to Alaskans the bizarre over-education I got, with highlights like mandatory declamations (that's speeches to you mere mortals) in Latin on Exelano Day. That would be March 4 -- a homophone for "march forth," or exelano in Latin. Of course.

The reunion was intimate and inspiring. There was no scramble to compare notes about money and accomplishments, to flirt or one-up each other. I felt instead genuine warmth and openness in the vignettes and insights my classmates shared in our too-brief time together.

One told me she felt lucky her husband turned out to be such a great match for her because she married him for all the wrong reasons -- she liked his smell and how hot he looked in his beach-style attire. One told me about the devastating pain of her divorce, that she was an empty vessel, and had since truly come into herself. One told me about her father's death, how close he and her husband had been, how much she misses his presence.

One told me she and her family recently moved in with her widowed mother and that while it was meant to be a short-term arrangement, it's bringing her mom and her kids -- and likewise her husband and herself -- so much love and joy. One told me that when she asked a friend -- a married guy with a child -- to consider being her sperm donor, his wife told him, "Of course you'll do it!" and they remain lovingly involved with her now four-year-old child. 

I was our class speaker at the reunion. I talked about loss and love, in that order, and while only the Winsor School Class of 1989 will get the humor, I hope there is something in the message that will resonate with the rest of you. With that I take a deep breath and share it... Please note that it's not a perfect transcript as I ad-libbed a little.

******



Hello friends. It truly is an honor to address such an interesting and accomplished group of women. It’s also a little intimidating, so I thought I’d take you down a notch with a pop quiz. No consulting with your neighbors – keep your answers in your head.  

1.      Define ablative absolute.
2.      Who was Oliver Cromwell?
3.      Summarize in one sentence the plot of The Tempest.
4.      Write 4697 in Roman numerals.
5.      Count to ten in base 2.
6.      What is a telomere’s role in cell division?
7.      Briefly state Avogadro’s hypothesis.

Please, tell me you flunked this as badly as I did. Over the past few weeks as I’ve thought about Winsor, I’ve marveled at how much I managed to learn and how completely it’s been wiped from my brain. I came to wonder, did I retain anything from eight years at Winsor? Do I owe my parents a big apology and a really big check for all that tuition?  

Hold that thought while I tell a little story.

As some of you know, in October 2010 my husband John died in an accident. In the weeks and months that followed, people would often tell me they felt his spirit. They saw John smiling in a dream and offering his characteristic hug; they looked at his picture on their fridge and felt his warm encouragement; they went skiing and could feel his joy suffuse their own.

Once when someone told me such a story, my bitterness eked out and I said: “Well, I’m glad for you. All I see and feel is his anguish at making the ultimate screw-up.”

John went for a run while we were on vacation with our kids, who were then 8 and 2. He misjudged what was on the other side of a low cement barrier, which he vaulted, only to see too late that the running path he was trying to reach was behind a gap. He fell, and died before the medics arrived. 

I was in our hotel room with the kids, so I didn’t see the accident, and I really didn’t understand what happened until nine months later, when I visited the site and met with witnesses.

During those nine months, I was haunted by John’s last moments. My imagination filled in the blanks, envisioning for him the deepest regret the soul can conceive. When I thought of John’s spirit, I pictured him dope-slapping himself for all eternity – and perpetually apologizing to me for all the diapers and early mornings and dishes and cat litter he’d saddled me with.

The day before the first anniversary of his death, I went for a run with a friend. The kids and I were visiting the east coast from Alaska. I had packed in my suitcase a small wooden box with a few tablespoons of John’s cremains. (Yes, I used a tablespoon.)

I wondered if we should do something with the little travel box of ashes on the first anniversary of his death. Should we pick a beach he liked and scatter the ashes? What if the wind kicked up and blew them back at us? Should we pour them in a puddle at the golf course behind our condo where he liked to sneak with the kids to play? Or was that crude?

I ruminated about all this to my running companion, who happened to be a piano teacher and self-described spiritual counselor.

Without missing a beat she said to me, “Have you asked him?”

Um … who?

“Ask John what he wants you to do with the ashes,” she said.

Hm. I’m not really the type who communes with the dead. But after our run I got into the car, gripped the steering wheel and said out loud, “John, what do you want me to do with your ashes?”

He answered immediately, with one of his favorite mantras about statistics and life (he was a statistician). He said: “Keep it simple, stupid. You got ashes in Juneau, you got ashes in Minnesota. Keep the ashes with you. I want to be wherever my family is.”

It wasn’t like I heard him speak to me from the heavens or materialize in a haze of white light. I heard his voice from within myself.

A few days later, after an ugly parenting scene – I’ll spare you the details – I was running on a treadmill at the Y. Thump, thump, thump. There was a guy on the treadmill next to me, so this time, I asked John silently for some parenting input.  

Again his response was immediate, and his advice was spot on. My eyes got hot and wet. I cried because he was gone, I cried because I had found him again. I increased my speed and tried to play it off like a lot of sweat on my face.

As I began to call on this alter-ego to guide me, I moved past the vision of John in perpetual mourning for his own death. I began to picture him smiling, juggling apples, riding his bike and waving at everyone on the street, cracking jokes no one else gets. I realized he was a source of strength and love that I would always carry within me. When someone asked me if he came to me from above I said no, it was more like I ate him – it was like I digested him. 

So, back to Winsor. I’ve come to understand that even though I can’t tell Archimedes from Aristotle, I can’t factor a polynomial, and I’ve forgotten how to conjugate verbs in three different languages, Winsor will always be with me. I have digested the key lessons of Winsor. Such as:

1. When your brain needs a break, go to The Hole for a warm bagel and some tunes. Don’t forget to get some M&Ms on your way out.

2. Don’t walk through Pervert Park -- morning, noon or night. Just don’t do it.

3. If you come up with a good enough argument and the whole class bands together, you can convince your English teacher to let you put on a play instead of take a final exam.

4. When you’re stressed, sit on a quiet bench in the courtyard and breathe in the smell of the lilacs.

5. Teenage girls can smell every bit as bad as teenage boys.

6. In Lower School, your big sister makes you feel safe and known and special. Pass on the kindness to your little sister when you get to Upper School.  

7. Just pull your hair into a ponytail and voila! You can play the part of a guy.

8. On warm days, climb out the window and have class outside.

9. You should always be willing to stand up and speak out, even if you are speaking in a dead language and no one understands a word of it.

10. People will pay 50 cents to wear their own pants, if you make wearing them a privilege.

These lessons have permeated my being. But there’s an overarching lesson that Winsor has imprinted on my soul. It’s harder to define and I think the closest word I can come up with is love.

I have come to feel that Winsor imbued in me, and I hope in all of us, a deep sense of love. There is some irony here, because without a doubt, Winsor kicked my butt, stressed me out, and battered my ego -- relentlessly. It was definitely a form of tough-love that Winsor doled out.

But it was love. When our English teachers met with each of us individually for 20 minutes every other week, they were saying, You are worthy of my time and caring.

When we sat around a large oval table discussing The Odyssey, it wasn’t really about Odysseus. Our teachers and classmates were telling us that our ideas mattered.


When Mr. Meyers and Mrs. Bailey and Mr. Powers buried us under math homework, they were telling us we were smart enough and determined enough to do it.

When we sang hymns at Tuesday morning assemblies we weren’t so much praising the lord as praising the power of music and the power of our communal voice.

And so, fundamentally, I have come to believe what we learned at Winsor was love. Love of ideas, love of community, love of integrity, self-love, love of learning, love of life.

I may have forgotten how to calculate a derivative, but Winsor and all that we experienced here remain a source of strength and love that is part and parcel of my being. Winsor is with me as a sort of alter-ego reminding me of the important lessons in life. Thank you for being a part of that experience that is so much a part of me. I feel love for all of you, love for our shared past and all that we’ve learned and forgotten together.

Rebecca Braun

May 9, 2014


Photos... I did a poor job taking pics in Boston. Here are some from Bainbridge.

Yesterday's fun. Pediatric dentistry has come a long way.
Brian's cousin Cory joined us for beer-battered halibut and apple pie for Brian's bday. Fortunately he enjoys Legos.

 
On one of our evening beach walks. Photo by Brian.

Heron and Mt. Rainier. Photo by Brian Hild.

Not the most photogenic soup but I love it and it's easy to make. Recipe from my dear friend Terri, who fed it to me from her fridge before driving me to Logan Airport last June after my whirlwind 2nd opinion. Ming Tsai's Three-Bean Chili: Saute in oil: 1.5 cups diced red onion, 2 T minced garlic, 2 diced serrano or jalapeno chilis, 1 bunch sliced scallions (save green for garnish). Deglaze with 1/4 cup tamari. Add 4 cups stock, 2 cups chopped tomatoes (canned ok), 1 15-oz can white beans, 2 15-oz cans black beans, 2 cups edamame, juice and zest of a lemon. Season with salt and pepper and simmer 45-60 mins.