Crazy to think that this past autumn, almost exactly twenty years ago, I met James in college here in San Luis. And it took us all that time to strategize and plan and finally make it back… We still laugh about the Valentine’s Day when he took me to dinner at an ocean view resort in Pismo Beach.
We had a reservation, but still waited hours for our table. Apparently he’d taken a bunch of money out of the ATM and it was meant to last the entire weekend. Flush with cash, he made the mistake of ordering lobster <MP> that night. He was totally mortified when he abandoned the entire contents of his wallet with the bill, and we had to stiff the waitress her tip.
We absconded, both giddy and guilty, like we were dining and dashing.
James has always been one of those guys that’s somewhat anti-Valentine’s Day. (Or Valentimes, as Nate still calls it.) No, he doesn’t wear solid black and march against Hallmark, but he’s been pretty *meh* about the whole thing in all the time I’ve known him. So let’s just say I was certainly surprised when he chose Valentine’s Day to propose sixteen years ago.
I was sick as a dog.
I remember we went to the movies– I think we saw Chocolat. And then we went to dinner in downtown Mountain View. He proposed to me on our hand-me-down couch in the middle of our little apartment. I was profoundly happy and surprised and congested. I didn’t cry. And he’ll never let me live that down. Though I’m pretty sure I’ve more than made-up for my previous reputation these last ten weeks.
His rationale? Maybe if something important, like proposing, happened on Valentine’s Day, then he’d be more inclined to celebrate. Well… that was his theory anyway. I do have to say that Jacob confidently asserts he likes lobster more than crab (yes, he’s a seven-year-old with definitive opinions on lobster), primarily because his dad has been known to cook us a romantic February 14th family dinner, including chocolate fondue for dessert.
James’ throat is hurting pretty badly this week and he’s graduating almost entirely to soups and smoothies. I’m thinking this weekend I should make lobster bisque and fondue. We’re pretty sure he’ll have no problem choking down melted chocolate…
My little late night creeper is back. Sneaking up on me while I try to blog on the couch. I quickly pause the TV and serendipitously, it freezes on a Bravo ad, one moment before an open-mouthed kiss.
First, I went to school. Second, I did all of my classes, and then this is where it begins:
I went to my backpack and got my bag of sweets and Valentine’s cards. They have Ninja Turtles and smell like pepperoni pizza. Then I passed them out to everyone in the “yellow” group. Then I stayed in my classroom to see everyone give candy to other people, and especially me. Ethan gave me two, of course. Because he’s my best friend. Then I went to Sun n’ Fun and I played soccer and basketball. And then I went home and watched TV. I ate hamburgers for dinner in the shape of hearts (Well, not really, why didn’t Mama think of this?). And then I read Harry Potter with Mom while Nate was playing his Nintendo 3DS. And then I went in my bed. And then I read and drew. And then now we are writing this blog. End of story.
It’s the end of Week Two and I’m sure you’re all wondering… Where is Jaimie? How is James doing? Why haven’t there been any updates on the blog? What is HA-PPEN-ING?
In a word: bedtime.
I’ve been putting Jacob to bed twelve times a night. And then it’s 10:30 and zzzzzzzz. But let me back up.
So this week it’s been raining. And James has been dodging mudslides and taking back roads and guest room-hopping as the Santa Cruz mountains seem determined to visit the beach. He’s spent a lot of time visiting friends and going to his appointments and eating wonderful soups made by Grandma Suzy. He’s doing well, though his throat is starting to hurt and it’s getting harder to swallow. He’s home in San Luis for the weekend and we had a beautiful walk/bike/scooter ride to the beach today and a quiet, rainy afternoon.
The boys and I’ve been dodging a few rockslides of our own. Most days this week have been wet and stormy and a bit of a blur. I can’t seem to sleep past 5:30am. I pack lunches and pour cereal and peel hardboiled eggs and demand little people wear clothes and jackets. Nate throws his pajama pants on the ceiling fan and then tries to turn it on so he can watch them fly off. He likes to dip his “waterproof” shoes in the raging river that is the gutter at school. Jake has days where he wakes-up and miraculously does his homework without being asked. And other days where he thinks he’s going to refuse to go to school and that that might actually be an option…
And then I go to work.
I am so grateful Nonna and Papa are here to pick-up the boys and bring them home in the evenings. The night I did it, I picked them up at 5:30pm and they were the second to last kids to leave school. Clearly we’re not in the Bay Area anymore.
Then I get home and I turn into a whirling dervish of dinner and bath time and homework and Harry Potter script reading and tooth brushing and ‘nuggling (snuggling) and bedtime. And bedtime. And bedtime. And bedtime.
Natesy still pretty much climbs in his bed and is out like a light. Jake on the other hand… is reverting back to three or four years ago where he is sneaking and lurking and inventing four hundred reasons why he can’t sleep. He reads. He draws. He drinks milk. He listens to soothing music. He does deep breathing. I lay down with him. I bring him water.
Yesterday he told me very seriously that he doesn’t know what will help. He needs “a cure.”
Tonight is the first night in two weeks that Jakey went to bed and stayed put. Maybe he’s tired from the bike ride to the beach and driftwood sword-fighting with Logan. Or maybe he can finally relax ’cause Daddy’s home.
I think we’ve found our cure.
We’re part way into Week Two and it’s raining. It’s raining so much in Santa Cruz that James is trapped over the hill and has to spend the night at Matt and Dr. Antsy’s. Hopefully things will clear up and he won’t have to rent a helicopter to rescue Granddad and Grandma Suzy from the mountain.
Meanwhile… I’m tired and just want to watch Top Chef. And speaking of cooking, James being gone has really shone a light on who is the chef of this family. Not that there was really ever a question, but it is abundantly clear that Daddy runs the kitchen. He is the executive chef. I’m the sous chef in charge of vegetables. Let’s face it, James can cook. Partly ’cause he loves to eat. And partly ’cause he’s one of those maddening people that reads instructions and follows them flawlessly.
Unsolicited, Jakey has been ranking his favorite meals, which goes something like this:
Daddy’s hamburgers and
And in the treat category:
Daddy’s chocolate fondue
Daddy’s Texas Sheet Cake
Mommy’s chocolate strawberries (based almost entirely on one Valentine’s Day over 3 years ago when I brought home tuxedo strawberries from a work team-building event)
I must admit, I was a bit deflated when one night Nate lamented, “But Maaama only knows how to make chicken!”
Totally not true. I mean, I know how to make other things. Just last week I made asian turkey meatballs, pork chops and sole in parchment paper (thanks to the help of our dear #Team James and Sun Basket). The food critics were mildly impressed.
Tonight Jake was going through his favorite Daddy foods for the umpteenth time since he’s been away. He turns and says to me, “But you make the best salad Mom. The best.”
I didn’t say Whoopdeedo... But maybe I thought it.
It’s Sunday night and we’ve survived Week One of our Six Week Retreat of Healing.
James has been settling-in at Granddad and Grandma Suzy’s this week, commuting to Los Gatos for his daily radiation treatments, and doing his best to balance staying busy and not wearing himself out. He had a couple days where he wasn’t feeling that hot, but he’s eating well and just has a bit of a rosy neck.
Our week got off to a rough start, but then went pretty quickly. Nothing like James being gone for the “check engine” light to immediately appear on my dash, and the little one to mention some problem with his unmentionables…
Then on Monday night I’m trying to watch a little boob tube when I hear “scratch scratch scratch.”
“Jacob, I’m not going to say it again. Get. Back. In. Your. Bed.”
I turn to catch him lurking behind the couch and there’s no one there. Perplexed, I get up and scan the area. There’s the noise again. I peek in the boys’ cracked door and Jake is quietly drawing with his flashlight, under the covers.
Eeeeew. I hear it again. It sounds big. It’s trying to get out. Little toenails. Big toenails? I race up the stairs to my room and check my closet. I can hear it, but fortunately, no sign of fur or teeth or toenails.
I can’t watch TV anymore. I go to bed that night with earplugs and pray nothing runs across the covers.
Thank goodness we have Nonna and Papa as our evening helpers, and Papa knows an exterminator.
James came home Friday night for the weekend. We were so unbelievably happy to see him. Of course the rash was cured, the engine light was off, the walls were quiet…
And all was as it should be.
Over the holiday break, Granddad held a neighborhood pony party, complete with miniature neighbors and miniature ponies. It was great.
During the party, Jakey Crockett and Nathaniel Boone palled around with their buddy Jack and the Beanstalk (this nickname will become apparent later on), climbing trees and fences and ponies. Meanwhile, Jack’s dad Marcus and I, traded stories on the many hours of our lives we’d recently spent reading the Harry Potter heptalogy. The conversation soon turned to a game they’d picked-up, based on Bertie’s Every Flavor Beans.
Now Bertie’s Every Flavor Beans, for you Muggles that are having a hard time following, are essentially the Jelly Belly’s of the wizarding world. So of course, Jelly Belly had to get in on the J.K. Rowling action. But I mean really, don’t we all want in on the J.K. Rowling action? So Marcus is telling me about this game and it sounds both revolting and riveting. I’m hooked. I need to pin this idea to my Pinterest board stat.
He surprises me later that night with my very own, brand new box of Bean Boozled.
Here’s how you play, although to tell you the truth, we didn’t read any directions. In typical Purnell style, the boys and I just ripped into the game and started playing. We don’t need no stinking directions.
Here’s the gig: there’s a box of jelly beans where the same looking bean could either be, for example, chocolate pudding OR, canned dogfood. You spin the spinner and then choose the matching colored bean from the box. After lasting just three rounds, I highly recommend a “spit bowl,” paper towels, and giant glasses of water. I also found that a plate of strongly flavored artisanal cheeses and cured sausages is an important palate cleanser. My sincerest thanks to our one and only favorite fine food purveyor (Current favorite: sauccison sec).
We made it through:
- Buttered Popcorn OR Rotten Egg (This was really a terrible, terrible way to start…)
- Chocolate Pudding OR Canned Dog Food (For some reason, both Nate and Jack didn’t mind this flavor. I certainly minded the face full of hot dog food breath.)
- Berry Blue OR Toothpaste (Toothpaste is definitely the best of the worst. Natesy is sooo lucky.)
- Juicy Pear OR Booger (I gag just reading this.)
- Lime OR Lawn Clippings (I was super excited for Lawn Clippings, honestly. Probably my best spin.)
What we have to look forward to:
- Coconut or Spoiled Milk
- Tutti-Fruitti or Stinky Socks
- Strawberry Banana Smoothie or Dead Fish
- Caramel Corn or Moldy Cheese
- Peach or Barf
Although this game was bizarrely torturous, I’m not sure we’ve laughed this hard in weeks.
After these rounds, caught by a weak-stomached You-Know-Who on video, watching from the safety of a distant chair, we’re not convinced this entire game isn’t a gag. We didn’t get a single “good” flavor before we had to quit for the safety of artisanal cheese.
We may have bean boozled, but I’ve totally found my go-to gift for 2017. It says spoiled milk and dead fish are exciting new fourth edition flavors… what’s next I wonder…
Jakey’s guess? White Chocolate OR Stinky Underwear.
My guess? Sour Apple OR Swamp Water…
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!