Many years ago, my dear friend Kristen was on an airplane. She’s eagerly looking forward to cracking her big new Harry Potter book for several hours of cross-country magical mayhem when an older gentleman, sitting next to her, decides to chat her up, “Is that one of those books about magic?”
“Why yes it is.”
“Seems like a bad idea if you ask me– teaching children about witchcraft and wizardry.”
And in less than a beat she effortlessly retorts, “I’ve read every single book and have yet to cast a successful spell.”
That shut him up real good…
I’m envious of this story on so many levels. In any event, last week, after our third opinion, we spent the day visiting the highly anticipated Wizarding World of Harry Potter at Universal Studios.
We arrived early to the snow-capped village of Hogsmeade. It was darling. It was adorable. It was a perfect little haphazard English village. Our first stop was the wand maker’s shop, Ollivander’s. After a well-acted scene whereby the wand chose the witch, we were ushered into a shop with boxes of wands stacked to the ceilings. After a bit of a consultation, our two little wizards left with two magic wands, while the clerks had disapparated a significant wad of my muggle money. Later on Nate asks me in pure, innocent wonder, “Why didn’t the light shine down when my wand chose me?”
The cashier recommends we hightail it to the Forbidden Journey ride within Hogwarts castle before the lines get long. The line is definitely the best part. The Forbidden Journey should actually be called the Nauseating Journey. Nate isn’t tall enough to ride, that lucky bowtruckle, so we use the “Child Switch” room. I should have known what I was in for when Jacob refuses to ride the ride a second time with me. I board the people mover and sit down in the roller coaster-like seat next to an elderly Asian woman. All I remember is a blur of motion sickness and the poor lady next to me screaming in alarm in a melodic cadence during our flight.
Next we peruse the local shops, practicing our inconsistently effective magic wand spells, visiting the owlery, taking a wide berth around the Monster Book of Monsters, and eyeing the magic broomsticks. After a surprisingly good lunch and a couple of butterbeers, we leave England for Costa Rica, some sort of desolate Transformer world, and a tram ride. Nate still has a lot of questions about the guy with the knife that chased the tram past the Bates Motel.
As we enter the deceivingly tranquil start of the Jurassic Park boat ride, Nate asks me in awe, “Is that real?” And on the final plunge, just after the T-Rex tries to take off our heads, the man in front of me loses his fur-edged pink protective hood. Fortunately I’m ducking down in total fear and it flies right over my head, whapping the guy in the face behind me.
After riding the Tranformers ride with my eyes mostly shut, I’d say the storyline of every ride goes exactly like this, “Oh everything is great la la la. Wait a second, we’re in a restricted area! Oh no, we gotta get outta here! Five minutes of brushes with death and 3-D plummeting and violent narrow escapes later… Oh phew, we’re safe. Great job team. The world is saved. Bye.”
After all that, we escaped back to the now crowded tranquility of Hogsmeade for a couple of chocolate frogs and some crisps.
It was just the sort of magical respite we needed during a long, overly Mugglish week. The boys are enthusiastically smitten with their wands, casting spells and unforgivable curses left and right. I don’t know how many times I’ve been stupefied, engorgio’ed and crucio’ed. My Silencio charm has no effect.
Can you believe… I’ve read all the books, twice, and have yet to cast a successful spell?
My last three jobs primarily focused on large-scale change initiatives… helping people and organizations to understand, absorb and accept a constant stream of changes, both big and small. We used to talk a lot about “getting comfortable with being uncomfortable.” We focused on listening. We emphasized and reemphasized what was important.
Well… I’d say we’re personally embarking on Week 8 of the Discomfort Olympics.
After a full week of traversing the entire state of California for second and third opinions, we’re now all back in our own beds.
The week started with James and his brother, Uncle B, going to San Francisco to meet with several highly recommended doctors. On their way to the city, they tell me they drove directly through a rainbow. Through it! Leprechauns and gold coins scattering in their wake.
After a full day of consultations they left in a bit of shock… the surgeon recommended removing one of James’ vocal chords entirely and reconstructing it. The doctors exuded confidence. They expected his voice would be virtually unchanged.
Barely 24 hours later, the whole fam piled into the car and set-off to Los Angeles. The drive was breathtaking. After dropping the boys with a very brave Jamie A and Baby Oliver, James and I headed to UCLA to meet with another highly recommended specialist.
Now I must say that even though we know every doctor we meet is a bit like a hammer: radiation doctors insist on radiation, surgeons specify surgery, oncologists advocate systemic therapies… you go in knowing what they’ll say and yet it seems to take the wind out of you every, single, time.
The doctor at UCLA was very good. He took a long time to sketch and explain his approach, the information he was considering, and gave us an informal lesson on the recent history of melanoma biologics and immunotherapies. In the end, he put significant weight on the pathology and therefore strongly recommended enrolling in a clinical trial involving a study comparing the efficacy of a current immunotherapy and a newer, less toxic immunotherapy.
We left with a sense of significant time pressures and a week culminating in three very different recommendations.
Fortunately, Auntie Angela’s brother’s best friend is also a doctor at UCLA who specializes in radiation and immunotherapies. He met us in the hospital cafeteria. He talked us down from the ledge. He was so helpful and down-to-earth and answered many of our unanswered questions. Although we left Westwood with new anxieties, we were so so glad to have this reentry conversation… before retiring to a sleepless night at the Sheraton Universal. As we made our way out of the parking garage, I tried to focus on how lucky we are that there are so many therapies targeting this disease. That the investment and research in this space is something to be deeply grateful for. I know that many, many people meet with doctors who have no history to sketch. No options. No hammer. But it doesn’t make it any less gut-wrenching.
By the next morning we had a huge list of questions, recommended actions and an urgent need to regroup with our Stanford team before James begins his radiation treatment on Monday.
All in all, after countless emails, phone calls, and sleepless nights, we’ve decided to continue on our current path.
It was still key to explore the opinions of additional experts and understand the spectrum of recommendations, despite the emotional and physical up’s and down’s. In the end, our doctors at Stanford have the most complete information of our current situation. The surgeon provides critical input into what he actually saw and the confidence he has in the margins. The pathologist weighs his confidence and provides further context.
Although we plan to get a second opinion on the pathology, the evidence still points to radiation being the best next step. The other options are still hammers in our box of hammers, and we’ll cross that bridge if and when we get to it.
James leaves for Santa Cruz on Monday morning to begin his weekday treatments in Los Gatos for the next six weeks. We are so very lucky to have the love and support of the entire #TeamJames. Our most sincere thanks to every single one of you for checking-in on us, reading our updates and sending your positive energy our way.
We’re getting much more comfortable with being uncomfortable… guess it’s the universe’s way of hammering it home.
As some of you have noticed, I’ve become significantly more attuned to my surroundings in the last two months. Maybe it’s my mindful meditation practice? Perhaps the real or perceived threat of being in constant and imminent danger? Or it could be La Niña and the weekly excitement of rockslides and fallen trees and our road/river. Checkout this video from Friday… the first part is the road to our house.
I’ve never been particularly superstitious, though I am starting to wonder how we’ve become veritable rainbow magnets. The boys had yet another 5 Rainbow Day on Thursday… or Jake reasoned, it may have been the same rainbow following them to five different places… Meanwhile, I stepped out to a beautiful arc first thing Thursday morning, and then a Double Rainbow on Friday afternoon (mmm, I miss that ice cream). Then on Friday morning, James witnessed a real-life bald eagle on Highway 101. And I had a close encounter with a unicorn. Well, I made up that last one but really… we’re feeling pretty lucky.
Unfortunately, the last few days haven’t been entirely bald eagles and rainbows. On Friday, James reported back to Stanford for another scan in preparation for his treatment. The resident scoped his throat and sent everyone into two hours of unnecessary panic and worry. There looked to be a new growth at the base of where his vocal chords come together. Fortunately, our trusted surgeon answered his phone while on vacation and put everyone at ease… it was just a scab from the laser surgery. So the good news is that similar to how a scab on your skin pops up just before it’s about to fall off, the same thing can happen in your throat. The bad news is, we’re all recovering from heart failure.
Tomorrow James goes to San Francisco for his second opinion with several highly recommended specialists. Then on Wednesday we all head to UCLA for our second, second opinion.
It’s forecasted to rain for the next two days so let’s all drive safe out there… and keep an eye out for rainbows and eagles and unicorns.
This past weekend was beautiful, as the majority of our weekends have truly been since we got here. On Saturday, all the boys went fishing with Papa at the end of the furthest pier in Avila. While they were busy drowning bait, I walked almost five miles— starting at the Bob Jones trail and continuing around the bay to meet them. Along the way, I serendipitously watched a mama otter with her baby on her tummy, laughed at a baby sea lion sunning itself on a baby sea lion-sized buoy, and witnessed a SpaceX rocket launch into space. And all before noon.
I spent some time practicing my mindfulness and reflecting. Some of you have probably been wondering, how did all this happen? Where did it start?
Back when James and I went to college here in SLO, he had terrible allergies. I remember my freshman year, I had terrible allergies. One time I sneezed about seventy times from my dorm room to the parking lot— an undocumented World Record I’m sure. So, needless to say, James was bracing himself for a serious case of hay fever.
Coincidentally, his voice started to get a little hoarse and scratchy a week or two after we moved in. How these two events coincided will likely remain one of life’s unsolved mysteries… He went to the doctor, he went to the allergist, his voice stayed scratchy. He had his good days and his less good days. His throat wasn’t sore. There was no pain. There was no lump. He assured me in his best Kindergarten Cop voice, “It’s notta toomah.”
Finally the local ENT took a look and found the source of his hoarse voice. She thought it was a papilloma caused by HPV and scheduled him for surgery. Apparently this is becoming shockingly common in young, healthy, non-smoking Caucasian men. But then it wasn’t. Instead it was a very rare cancer called mucosal melanoma. From the little I read, before my desperate self-preservation tactic of delegating this task to my dear friend Arlene, it doesn’t originate from the skin. They have not yet found a connection to sun exposure, or genetics, or environmental factors. As a young, health-conscious, non-smoking adult, this is understandably alarming, but so it goes.
In any case, we were right about one thing… there’s nothing he’s more allergic to than cancer!
Back in high school, two of my friends and I decided we wanted to take a night class at our local community college— some sort of advanced Spanish class that took place after dark.
My parents told me no in no uncertain terms. They were certain I would be accosted in a dark parking lot as I searched for my Geo Metro. Quite an argument ensued. My blood boiled at the hypocrisy of a lifetime of girl power and “strong women” messaging clashing head-on into the realities of being a sixteen year old girl with waist-length hair and a car key bigger than her actual car.
The compromise? I would spend one Saturday attending a class they’d found in the Santa Cruz Sentinel called “How to Kill Men.” I’m not making this up.
So the three of us carted our teenaged selves to a nondescript hotel conference room in the Beach Flats. I remember tips on staring down approaching strangers and noting what they looked like, never checking-in to a hotel room alone under your first name– change it to your initial or something more manly, and uttering assertive deterrents. But what I remember most vividly is the “How to Kill” part… we practiced gouging eyes and knees to the groin and the strength of one’s elbow.
This is also when we were at the peak of our athletic soccer prime– a fierce and dirty band of cutthroat pirates. Our coaches, Gerald and Donnie, had recently put us through “Hell Week,” and we had the thigh muscles to prove it. During the class we practiced kicking our assailants. The beefy instructor took several forceful blows and declared, “You girls in the green Converse should just kick and run.”
My mom loves that line.
This past Friday, I took one of our complimentary fitness classes at work– Power Vinyasa. It was not your gentle, relaxing yoga. It was athletic and empowering and in the midst of Warrior II pose, as I stared down the length of my middle finger (fitting, right?), the words in my head became one, clear message:
I am going to <insert expletive adverb> kick cancer in the teeth.
‘Bout time I get myself another pair of green Converse.
On Tuesday night, James and I headed up to Santa Cruz in preparation for two appointments on Wednesday. The next morning we woke-up, had a cup of tea and some swamp water, and then packed-up for the commute to Palo Alto.
As we were waking-up in my parents’ cozy sitting room with the wood stove, something caught my eye. I looked directly past James, and there, through the towering redwoods, was a column of light– a vivid, perfectly vertical rainbow reaching up into the sky. I’ve never seen anything like it.
We made it over 17 pretty easily, despite the entire northbound stretch just past Vine Hill being shut down as they cleared a landslide. Lexington Reservoir was full to the brim. As we made our way to Stanford, we were astonished by four more separate rainbows. One reaching across the entire sky, from 280 to 101.
Our first appointment was with the radiation oncologist. Although we went in generally expecting her to recommend radiation… I mean when you’re a hammer, everything’s a nail… it still knocked us back a bit. She felt very strongly that radiation was critical and needed to be scheduled immediately.
We had a tough afternoon, wandering a bit aimlessly through the most beautifully landscaped outdoor mall in America, visiting a good friend of James’, and then heading back to meet with the melanoma oncologist. That appointment was better. The nurse was named Jaime and the doctor emphasized the positives– the tumor was small, in the scheme of tumors, and they were able to remove the entire thing with clear margins. In the world of melanoma, surgery is the best treatment. He explained that if it was somewhere below his neck, surgery probably would have been the only treatment recommended at this point, with very frequent scans. But, a person’s head and neck are very important real estate with a lot going on– subsequent surgeries could be much harder. Ultimately, we left Stanford fairly convinced that we should go through radiation, as a precautionary measure to reduce the risk of the cancer coming back or spreading.
We don’t yet have the schedule, but James will likely begin radiation treatment in Los Gatos at the end of January. It will be six weeks of treatment that lasts just a few minutes a day on weekdays, with time off on weekends. It will be hard to have James away for so many weeks, but we feel confident that he will have the highest quality treatment and be in the care of the best doctors.
Wednesday night we drove home to SLO, coasting in at 10PM and falling into bed. It was an exhausting week, but we now have the semblance of a plan. We will still be meeting with an expert in San Francisco on the twenty-third, and another at UCLA on the twenty-fifth. We’ll see whether their recommendations or approaches vary from our current team and continue moving forward.
Although it was an emotionally and physically draining week, I still think about those five rainbows. It’s abundantly evident the universe was overcompensating… practically shouting that no matter what we heard that day, “It’s going to be okay.”
And I know that it is.
A quick update to let you know I’ll post a more satisfying update on Saturday. Running on fumes this week and am coasting into the weekend via gravity and momentum. James and the boys have another four-day weekend and are off adventuring today. Thank you to everyone for your texts, calls and emails. They are small, powerful gifts of love and strength.
Years ago, my dad told me this story where he had two job offers he couldn’t decide between. His indecision led him to wake-up on a Monday morning, get into his car, and start driving without a plan. It was his first day on the job and he needed to make a choice. As he was headed over Highway 17, he had his sunroof open just a few inches. And at the precise moment when he’d made up his mind and chosen one company… *splat*. Like one of my favorite Far Side cartoons, a bird pooped on his head through that minuscule crack in the sunroof. He immediately drove to the other company and never looked back.
These signs… our need for these signs, is fascinating. During that very first weekend after the diagnosis, our house was enveloped in cold, gray rain and fog, with visibility of just a few feet. It was dark, dreary, hopeless weather. Then on Sunday, James took a walk alone down on Avila beach. The sky opened-up and a single beautiful ray of light shown down. Around the same time, I looked out our kitchen window and had the exact same experience. As I’d been wishing to the universe that it would be in one single, small, contained location— only one single hole opened up in the sky. And it made me feel better.
Since that time, little signs, big and small have found me when I’ve most needed it. When I’ve least expected it. We heard Bob Marley’s “Don’t Worry Bout a Thing,” on our first trip up to Stanford, and on the way back; A puff-painted rock in the parking lot; a rainbow on the second Christmas break drive home.
For several years, hummingbirds have been my little sign from the cosmos when I need reassurance. And there they are. A fat little red-headed hummingbird making such a racket from a branch, two young walkers stop to see him. Another one hovering over us at the playground. And painted on the electrical box downtown.
As we prepared for surgery, we found it exceedingly lucky that the Stanford concierge was an Indian man named George (Granddad’s name). And on the day of, our intake coordinator’s brother shared the exact same birthday as James. Then his nurse shows-up and his name is Vincent of course (Papa’s name). Vincent had the magical gift of putting people at ease.
There have certainly been days when I was attributing meaning to things that had no meaning. Is #66 at the restaurant good or bad? During our first appointment with the Stanford ENT doctor, we’re sitting quietly in the exam room and the sticker on a piece of machinery says 10/17. I try to ignore it. It’s the date of the Loma Prieta earthquake… after fifteen minutes and without explanation, the nurse moves us to another room.
A couple of days ago I get into my car, start it up, and what is playing on the radio? Michael Jackson’s “Beat It.” I’m not making this up. I’m fairly confident, the last time I heard that song on the radio I was in the third grade.
I quickly closed the sunroof.
Not a lot of new updates to provide on the #TeamJames front. That’s the character-building part of this whole situation… getting comfortable with being so excruciatingly uncomfortable… and the waiting. James and I will head-up to meet with the Stanford oncologists on Wednesday. Meanwhile Granddad will come down to hold down the fort and attempt to wean the two ninja monkeys off of Christmas vacation. Not sure which one sounds worse?
So as we’ve gotten comfortable with waiting, and acclimating back to actual winter rain, I’ve watched a couple of movies. I can’t believe how much I enjoy Home Alone— such a hoot!
The next day we were driving in the car and somehow Nate started fantasizing about how great it would be if James and I left him, with his brother, home alone.
Nate: “We could play our Nintendos, and watch our iPads all day!… Well, if Daddy leaves them unlocked.” (We have an app that controls the iPads.)
Me: “What would you eat?”
Nate: “We’ll eat hamburgers.”
Jake: “But how will we get them?”
Nate: “We’ll just drive the car.”
Jake: “We can’t drive the car!” (At least one child appears to have developed some level of common sense…)
Nate: “We already have hamburgers.”
Me: “Yeah, but how will you cook them?”
Nate: “I’ll just use Daddy’s grill. Just turn the button and turn the other button.” (From his carseat, he waves his hands around with some flame-thrower sound effects.)
Me: “Mmmhmm… and how long do you cook hamburgers?”
Nate: “Forty-eight hours” he declares confidently.
THUS illustrating why we need Granddad. Our sincerest thanks Granddad.
Today James took the boys miniature golfing in Santa Maria. I’m told Jacob won and they all had a great time. Apparently there was one hole where two of their balls went into the hole and never came out. After James jammed the end of his club into the hole with no luck, the groundskeeper came over to help. He shoved his leaf blower into the hole and “Pop!” out came a pink ball. And then a green ball. And then another pink ball. And another. Then in one unexpected golf tidal wave, at least twenty-five golf balls came gushing out. It was so supernatural, they all had to come home and watch Star Wars.
And speaking of supernatural, Jake and I are about half way through Book 7 of Harry Potter. We’ve been immersed in the wizarding world all summer and it’s been our special escape— a little slice of heaven. When it’s all over, I’m worried the withdrawals will be so bad we’re going to have to read that new play. I mean, I generally like reading plays, but I’m concerned it won’t really be what we’re looking for… which is to keep our Harry Potter reading club going for-E-ver.
Unfortunately Nate doesn’t like Harry Potter, though he is the undefeated reigning family champion of Harry Potter Uno. No one can beat him, not even Papa. So while we’re reading, he usually plays Harry Potter Uno with James, or spends the time inventing new forms of goofing around. I do know that sometimes he’s listening because he’ll unknowingly break out into a sing-song, “Potter you rotter, Potter you rotter,” imitating every Gryffindor’s least favorite ghost, Peeves.
Meanwhile Jacob spends most chapters acting out the various emotions of each character. I lay against the pillows on our master bed reading from my iPad, while he sits up and portrays Dumbledore being pensive, or Ron acting shocked. Tonight he was especially animated, executing a dramatic interpretation of Hagrid’s giant half-brother, Grawp, fighting Death Eaters and then, when it was all over, kissing his two fingers and saying in his deep, gravely giant voice, “Peace out!”
Broadway here we come…
This last book has gotten decidedly darker and more teenagery. We’ve had a number of deep mother-son conversations on snogging and relationships and appreciating the finer qualities of smart girls. Tonight we’re reading/acting our way through a particularly stressful chapter as the trio of friends is on the lam from You-Know-Who. And I say, “Jake, what’s with all the H’s in this book? Harry and Hermione? Hallows… Horcruxes… Hogwarts… Hagrid! Huh? Huh?”
Jake gets it, of course, and immediately one-ups me, “Ha! Ha ha ha!”
I love how we just get each other.