Marking Time

Cali at hospital muralYou can mark time by the cycles of the moon, the arc of the sun, or the squares on a calendar.  And sometimes you can mark time by the phases of hospital construction projects.  After five years of dust and noise and spores, the new wing of the Lucile Packard Hospital is finally complete.

Before my son was born, I had basically never been in a hospital, save the childhood ER trip when my sister broke her leg skiing.  In fact, I had rarely even seen a doctors.

My wise mom, a seasoned pediatric nurse, knew doctors’ offices were germ breeding grounds and kept us kids away from those filthy waiting rooms as much as possible.  My earliest medical memory is tagging along for my sister’s ear infection appointment.  The infection must have been pretty bad because in those days, my mom’s credentials and adept medical vocabulary usually procured her antibiotic prescriptions easily by phone. I had heard her do it many a time, and I had always assumed the office she avoided on the other side of the line was a grey, horrid place with mean people and boring walls.

When we arrived in the one-story shingled building, I was shocked to see smiling rosy nurses and a rainbow-painted wall in the waiting room.  There were colorful toy boxes teeming with dolls, puzzles and books.  But while all the snotty-nosed and coughing kids played happily on the polka-dot rug, I was ordered to stay in my chair and not touch anything.  I remember secretly wishing I was sick, too.  Surely sickness would have granted me access to the forbidden.

Reef and Mom skiing 2018
Reef and I managed to get a few ski runs together in early January,

In junior high, a school nurse found an abnormal curve in my spine, and  I started frequenting an orthopedic office, where I got very accustomed to x-rays.  However, the small second-story office with spectacular views of Mount Tamalpais was hardly hospital-like.  The wood-paneled waiting room featured large prints of skiers and joggers and with interior decorating like a mountain chalet.  I almost felt cool going there.

Then there was my brave collegiate adventure to the UCSC health clinic for birth control.  Perched on redwood piers, the building resembled a treehouse outside and looked like a student lounge inside.  The nurse on call had a shaved head and daunting biceps and was flippant about “the pill” (a routine request), but sarcastically advised I try taking a shower now and then.  Needless to say, I never went back.

Finally, there was the time in my early twenties when I naively allowed a posh dermatologist (you know, the kind with the make-up clinic in the waiting room) to freeze 15 warts on my hands without medical insurance.  I was shocked when the twenty minute appointment yielded a $1800 medical bill; each wart was considered a separate surgery.

Sum and Faith in the snow 2018Even my son’s hospital birth was uncharacteristically earthy.  I chose a maternity center with wood floors, home-like drapery and full size bath tubs.  I brought my own meditation music and the Santa Cruz nursing staff enthusiastically supported my intervention-less birth plan.  In the short forty-eight hour stay that followed, I was gently coached in breastfeeding by an angelic lactation specialist and brought a three course celebration meal with organic greens and freshly squeezed juices.

So when my second child was born with undiagnosed disabilities, and she was suddenly plunged into the local intensive care unit, followed by months of weekly appointments at Lucile Packard speciality clinics and their perspective waiting rooms, I was in culture-shock.  It felt so wrong to be spending hours upon hours in these aseptic, yet dirty, money-sucking operations with my tender newborn.

Eventually, the appointments thinned and I grew wizened, but I still anticipated some kind of definitive end.  I clearly remember the day we got a letter from Lucile Packard stating I should start allowing an extra half hour on appointment days for parking and detours due to new hospital construction, slated to last until 2017.  Cali was only three-years-old at the time.  Didn’t they know how hard it was entertain a toddler an extra half-hour in the car?  I rolled my eyes.  2017 was basically forever!  Were they kidding?  We would be done before that!

Cali soaks in snow sun 2018At first the construction project was merely an obstacle to Cali’s appointments.  Access to her clinics was rerouted through the adjacent chic Stanford Mall.  As the letter predicted, traffic was heavier.

Then one day we got another memo stating the main Stanford Hospital would also be breaking ground on a huge new addition, suggesting we now allow forty-five minutes for parking and detours.  Traffic problems tripled.  I prepared diligently on clinic days, packing extra snacks and diversions for my preschooler.  But mostly, I was lucky Cali was patient by nature, far more patient than me.  Little did I know how patient I would need to become.

In the summer of 2015 I was suddenly diagnosed with acute leukemia.  Before I could assess the situation, I was captive in an isolation room adjacent to the Lucile Packard dining courtyard.  I was literally on the other side of the wall where only months prior I had been licking a celebratory popsicle after Cali’s MRI.  How the tides can turn.

Trapped in my sterile room, time became static.  Courtyard nightlights kept the room bright around the clock.  Nurses barged into my room at all hours, taking my vitals, administering chemo, or changing the trash. My room’s negative pressure airflow kept a stiff breeze circulating, independent of the outside weather. I religiously charted my white blood cell counts on an Excel spreadsheet, hoping to interpret time by the slope of my data’s curve, but my efforts were futile when my counts dropped to zero and there was nothing to chart.

hospital garden
The new Dunlevie garden in the Lucile Packard new wing is a somewhere between a children’s science discovery museum and a work of art.

When I was allowed to walk the hospital halls with my IV pole, I always made a pilgrimage to the duck pond at the hospital entrance, my only access to”fresh” air.  (“Fresh” being relative, since I still had to wear my HEPA mask.)  Relaxing on the duck pond benches, I enjoyed the piercing glow of welding torches and the cacophony of steel cranes assembling the skeleton of the massive new wing.  At least this view offered tangible signs of progress.  During my first monthlong stay, an entire floor’s worth of steel was placed.  The Great Stanford Construction Project was no longer a nuisance; it was a vital testament to the passage of time.

When I graduated to outpatient chemotherapy, I no longer had a room, but I still had lots of time to kill.  I was not allowed to drive, but I could walk, and so I spent my vacant hours traversing the sprawling Stanford campus.  Naturally, I gravitated towards the arboretum and cactus gardens, even though the route to these coveted greenways required careful circumambulation around one construction site or another.  Bulldozers and pile-drivers worked furiously behind screened fences, kicking up hazardous spores into visible clouds, threatening fungus infection in my lungs.  Nevertheless, I boldly, albeit guiltily, donned my pink HEPA-mask and charged the dust.  The verdant earth and the growing plants on the other side were my spiritual salvation;  nothing was going to stop me.

The sweaty pink rubber of the HEPA mask, the traipsing search across traffic-filled intersections for oxygen-rich plants with oxygen-starved blood.  I want to be done with those days.  I desperately want that chapter of my life to be over.  I have barred the word “relapse” from my mental vocabulary.

Summer and Faith cut 2017 Xmas treeAt Christmastime, we shared a home slideshow with friends on our big screen T.V.  It was fun reminiscing, seeing the kids when they were little, laughing about our old haircuts, until the hospital pictures popped up.  “Turn it off!”  I shouted.  I couldn’t watch.  It wasn’t that I was embarrassed; I just didn’t want to go back, not even in my memory.

Later, when I was addressing holiday letters, I couldn’t remember the street name of the Palo Alto cottage where I resided for many months, first during my own transplant process and later when my daughter was being treated.  I had to use Google Earth to jog my memory even though I lived there less than a year ago;  I guess that is how hard I am trying to forget.

But my attempts to forget are in vain, because each month I am back at Stanford for Cali’s maintenance chemo treatment.  Even though it is only the Lucile Packard day hospital, even though it is only for a few hours, even though we are both in remission and the treatments are less intense, it is too familiar.  The signature smell of the hospital hand soap triggers carnal memories of gnawing nausea.  The pale blue of the cold vinyl guest chair against my bare calves reminds me of all the days my guest chair was empty.  Without looking, I know what is in all the drawers – drafty gowns, boxes of starchy tissues, faded linens.  The rooms are all the same.  Even without sitting, I know the the plastic-covered hospital mattress will crinkle loudly under my weight.  I flash back to sleepless, feverish nights.  Hot. Sweaty.  Shaking.  Cold.  Bone pain so deep that intravenous narcotics only skim the surface.

A few weeks ago, after sitting in a hospital room with Cali most of the morning, I needed a break.  I needed air.  I bribed Cali with her iPad, and made a beeline for the hospital exit even though it was raining.  I instinctively traced my familiar path along the sidewalk through two stop lights, heading for my urban forest retreat.  However, I stopped short.  The construction fences were down.  The block was eerily quiet.  There were no more generators or cranes or pile-drivers.  There were no more fluorescent-vested workers in hardhats congregating around revving cement trucks and beeping flatbeds.

New wing
The new Lucile Packard Hospital entrance.

Instead a giant red ribbon hung across the grand white entrance to the new wing of the children’s hospital.  An almost silent limousine floated down the semicircular driveway, and stopped where a crew was subtly arranging a podium.  A couple of women in heels and men in suits stepped out of the shiny car and gracefully entered the sparkling glass doors.  It had been years, truly years, since this block had been dignified.

Nevertheless, I couldn’t relax.  Even though the construction fences were gone, even though construction sites were technically not even hazardous to me anymore, guilt plagued me like a hangover.  It didn’t feel right to be standing on that corner mask-free, the memories of spores hovering like a ghosts-in-waiting ready to pounce.

Have I actually been I been coming here this long?  Have we actually reached that distant year of 2017, forever?  As the rained thickened, I quickly crossed the street to a more practical getaway, an old brick building decidedly not part of the hospital.  “Good to see you! Happy Holidays!”  called the barista familiarly, and before I even paid I was sipping my favorite hot drink.  He didn’t know my story.  He didn’t know his good memory for my coffee order was testament to how short I had actually been away, how long I actually was here.

Happy CaliDrink in hand, I returned to Cali’s day hospital room.  The iPad was off and she was distracted, her eyes were distant. She barely greeted me as the industrial door closed loudly behind me, but I understood.   Even if she doesn’t say so, I know she is also navigating harrowing memories, memories of vomit and nose-tubes and scary wakeful nights without Mommy.  Memories she is trying hard to shut out.

As always, Cali was engaged in her silent do-nothing meditation, her meditation that gets her through the day.  And since she needed to be silent, I started writing.  It is what I have trained myself to do.  And it is also another way to mark time.

hospital mosaic
New nature-themed mosaic floors pave the way to the new wing.

 

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A Solstice Meditation

The longest night, the shortest day.  And that is the point, isn’t it?  To find the light even in the darkness.

Do you find light in the LED strings lacing suburban rooflines, defying the four o’clock dusk?  Do you find light in the holiday tunes declaring messages of joy and peace, echoing through dinky drugstores and crowded malls?  Do you find light in a backyard fire, drawing friends and strangers alike by its warmth?  Do you find light in the birth a baby, who knows nothing except he is surrounded by loving arms?  Do you find light the sparkle of your child’s eye when she licks a frosted cookie, sees a glowing candle, holds a shiny ribboned package, witnesses the peace of carolers singing Oh-Holy-Night?

Why of all times, in this darkest hour, do we choose to start a new calendar year, somehow finding inspiration to set lofty goals and imagine a bright future in the heart of blackness?  Let this enigma of the season be a metaphor for the times, because, oh, the times do sometimes feel dim.

The miracles is this:  After the solstice, the days always get longer.  Out of the deepest darkness there comes the greatest light – HOPE.

hospital lights
Hospital lights on a rainy night.

Christmas Letter

Dearest Friends and Family,

Watch out!  The Bennett Family is back in action and ready to celebrate Christmas and its associated holidays in their full glory!  We hope this letter finds you reasonably well and confronted with only the routine kind of mishaps, like backaches and flat tires.

Sometimes November arrives, and I realize, here comes the holiday season barreling down the tracks, and there is nothing I can do about it.  Some years I have secretly wished I could pull a blanket over my head and hibernate until January, but of course, I can’t.

Faith and summer holiday parade 17
Summer and Faith enjoy the Santa Cruz holiday parade

Sure, I love Christmas – the lights, the joyful music, the parties, the pastoral birth story.  But the race is real, especially since I have four kids who presumably believe in Santa.  (Make no mistake, I believe in Santa, too!  I don’t want all that work to fall on me!)   Suddenly I triple the length of my to-do list, blow my family’s budget, and affix a hard deadline to all my projects – December 25.  All this happens in the height of flu season, when my immune system is undoubtedly taxed with one virus or another, when the days are the coldest and the shortest, and when the winter waves begins to peak, tempting me to blow off everything and just go surfing.  To make matters worse, I expect myself to feel joyful, peaceful, anointed by the grace of the Christmas Spirit.  A tall order, a recipe for stress.

 

And yet, here is how you know things have changed for  me.  This year, I am actually EXCITED about the holiday season.  I started planning all the way back in October. I went so far as to offer to host Thanksgiving.  (Thankfully, no one took me up on it!)  The day after Halloween I took down the holiday clothes.  Little did I know this would lead to Summer’s latest uniform.  She has been wearing head-to-toe Rudolph-wear thirty days straight and counting.  Luckily, we have two identical outfits and Faith allows her sister full access to both.  (It’s a twin thing.)

After two years of forced uncertainty, it felt so good to know I was going to be home for Christmas.  It was wonderful to call my parents in Marin and say, yes, we definitely would be coming up for Thanksgiving.  We could predict with near certainty that neither Cali nor me would be waylaid in a hospital ER with a neutropenic fever or ng-tube replacement.  Cali’s monthly chemo treatments have finally reached a place of predictability, and my release to twice annual blood tests is viturally complete freedom.

So I prepared for our Thanksgiving holiday travel up to the Bay Area with an unprecedented zest I hadn’t felt since I was a dependent.  Two days before our scheduled departure, our overnight bags were packed and our assigned pumpkin pie was made.  We thoughtfully planned our drive for Wednesday late morning to avoid traffic.  We were poised for success.

Around 10 am Wednesday morning, we loaded the minivan with two adults, four kids, three bikes, five suitcases, two sleeping bags, four pillows, ten coloring books, forty crayons, six water bottles, six snack bags, twelve pairs of shoes, and five jackets.  Note the five jackets; we have six people in our family.

As we took our seats and secured our belts (no small feat), Cali suddenly screeched like she had been hit by a bolt of lightening.  “Mom!  I think I left my jacket at art class!”  I dug through the loaded trunk.  Sure enough, her new coveted jacket was missing.

Mike and I looked at each other.  We were definitely tempted to ignore her, to keep the northward momentum.  But you know how it is with kids’ jackets.  You have to track them down right away or they slip into the nebulous world of lost items, never to resurface.  Besides, this was Cali, who rarely lost anything, who was always cold, who loved her coat dearly.  We didn’t have to discuss it; our trip would start with a detour through our congested downtown Santa Cruz to retrieve her missing item.

Sure enough her jacket was right where she left it.  Perhaps the detour was a blessing because it reminded us we needed gas.  After retrieving the jacket, arguing about the fasted way through town, and then backtracking anyway to fill our gas tank, we finally passed our house heading north, precisely a half hour after our departure.  The kids were behaving exceptionally, thanks to the ten coloring books and forty crayons, and we were making excellent time – zero miles in thirty minutes.

Nevertheless, my spirits were high.  I sipped my hot chocolate and soaked up the luxurious view of our spectacular coastline.  As we passed beach after beach of perfect surfing waves, Mike pined a little, but Reef countered with uncharacteristic optimism,  “I don’t care about the waves, Dad.  I’m excited to try the bike park in Novato.”  Mike and I looked at each other stunned.  If you know Reef, you understand that this statement itself was actually a miracle.  Things were going remarkably well.

stranded on the wayside
Wasted on the wayside

A little too well because about twenty minutes out of town, our car started rattling and making a strange sound, ka-thump, ka-thump, ka-thump.  Mike slowed to a crawl.  “That doesn’t sound good,” he said.

 

“It’s a flat tire!” Reef proclaimed from the backseat, proud to call on his seasoned travel experience to diagnose the sound.  “This is exactly what happened on my surf trip with Kai!”

Mike carefully pulled into a remote pull-out near Ano Nueveo State Park, and we all emerged from the van.  Sure enough, the left rear tire was entirely flat.  Good thing we have AAA coverage, I thought.  I looked at my phone.  No Service.  Cali burst into tears, “Are we going to be here forever, Mom?” she cried in a full panic.

I laughed.  “No, no, of course not.  This is just a flat tire.  Dad can surely fix it.”  I looked at him for confirmation.  His face was less than reassuring.

“I have no idea if this car even has a spare,” was his only comment.  Looking for a course of action, I put everyone to work unpacking our entire car. Within minutes, the contents of our trunk were piled high on the side of the road.  Soon, we discovered a promising carjack in a secret trunk compartment.  Reef crawled under the car and discovered a tire bolted to the its underside.  Thanklessly capable, Mike was on his back in the dirt in minutes, prying on the rusty bolt that secured the spare.  Faith was about to crawl under the car with him, but I quickly corralled her by the hood of her sweatshirt towards the poison-oak side of the pull-out.  Hmmm, how could I everyone out of trouble?

the kids table
Don’t mess with the kids’ table.

“Come on,” I rallied, trying to make the most of our unexpected detour.  “Let’s go find the beach!”  Cali opted to stay behind to keep an eye on Dad.  (Walking in still not her cup of tea.)  After carefully unwinding his mountain bike from our pile of stuff, Reef took off down the trail to forge jumps and check waves. The little girls followed shortly behind, galloping on their “stick” horses, carefully dodging the prickly bushes and leafless poison oak sticks.  I brought up the rear, frequently checking the display on my phone, just in case we found a pocket of signal.

 

After a quick look at the pounding shore break from a dilapidated bridge, we cut our bush-wacking adventure short and retraced our steps back to the roadside.  To my surprise, Mike had already installed the spare and was reloading our van.  I was impressed! I guess all those road-tripping years following the surf and the Grateful Dead did teach him useful survival skills!

Ninety minutes after our initial departure, we were on the road again.  We had only twenty miles under our belt, but, hey, we were on holiday.  Who was really counting?  The kids were in great spirits; no one was complaining about being in the car.  In fact, I think they were relieved to be in the car and not on the roadside.  It wasn’t their idea to stop for burritos forty minutes later in Half Moon Bay, but Mike and I knew better than to push our luck.

“Look at all the people!” Mike said ominously as we pulled into our favorite Tres Amigos parking lot.  The side door of the burrito joint was propped open to accommodate a line overflowing into the parking lot.

“No problem,” I retorted without any clue if I was right. “This place is always like this.  The line will move fast.”  My holiday spirit was not going to be damped – not by a flat tire, not by a long line.  So Mike, once again playing obedient husband, stood in line for forty-five minutes while the rest of us: 1) All used the bathroom 2) Watched Reef do each of his skateboarding tricks ten times in the parking lot 3) Walked clockwise around the block (carefully crossing the street to avoid a scruffy man pushing a shopping cart of trash)  4) Walked counter-clockwise around the block (moving quickly past the dog on a second story balcony who snarled viciously down at us, looking ready to jump at any moment) 5) Made bouquets out of “wildflowers” growing in a vacant lot. (Being from Santa Cruz, I was definitely on the lookout for feces or hypodermic needles, but I am happy to report, none were encountered.  The only significant hazards were two plastic bags of abandoned dog poop and a stray cactus.)

Of course, by the time we finally got our burritos and hit the road, everyone was hungry.  How smart we were to stop!  Eating kept everyone quiet until the eagerly anticipated highlights of the drive took over: Devil’s Glulch tunnel where we shouted “AAAHHHHH” the entire underground length (Lovejoy family tradition), the Golden Bridges (as Faith and Summer call it), and the Waldo Grade rainbow tunnel signaling the gateway to Marin (I mean, who doesn’t like driving under a rainbow?)

Later that afternoon, after dropping the girls with my parents and sending Reef and Mike to the long-awaited bike jumps, I found myself blissfully alone, exploring the downtown streets of Old Novato as our new tire was installed.  I strolled past a fragrant bakery where holiday shoppers bustled in and out balancing gluten-free pie boxes.  I grinned at an overweight mastiff snoring in the window seat of an upscale hair salon, his grey muzzle smashed against the glass.  The scene reminded me of a popular bumper sticker from my youth, “ONLY IN MARIN.”

I finally stopped at a quaint cafe called Insomniac and indulged in an afternoon mocha.  As I waited for the barista to call my name, I took note of who was hanging out the day before Thanksgiving.  Two college students studying.  An auto mechanic on break.  Two women speaking German.  This was so not where I expected to be.  How wonderful.  How luxurious to kill time drinking coffee and people watching.  All because of a flat tire.

Reef is in good spirits
Reef is in good spirits.

The trip continued to be blessed by children in good moods and noncritical mishaps.  When Reef and Mike returned from the jump park, Reef was glowing, but Mike was wincing.  Apparently Reef had hooked up with some local sixth graders at the track, who taught him some cool tricks and treated him like a long lost friend.  Mike, however, had attempted to jump off a teeter-totter and ended up landing on his back with his bike on top of him.  (Yes, I know, what was he thinking?  I am finding us forty-somethings are usually not thinking.)  He wasn’t seriously injured, but he was very sore.

 

For some reason, Mike, Reef and I still decided to attempt the famed Thanksgiving Day Appetite Seminar mountain bike ride the next day.  Now this historic ride is a twenty-plus mile loop in the remote netherlands of Ye Old Fairfax, but we weren’t silly enough to do the whole ride.  Mike shuttled Reef and I to a high point on the loop, and we were going to ride (mostly) down.  Mike would park the car in town and try to catch us.

After pedaling for only a couple hundred feet, I suddenly remembered how loose and steeply up the first section of the fireroad was.  I was expecting a full rebellion from Reef, but strangely, we both just got off our bikes and casually walked the hills, cracking jokes.  Everything seemed funny.  And then, out of the blue, no joke, a woman came flying down the rocky fireroad topless, her breasts bouncing all over the place.  And strangely enough I knew her and called out her name.  (I told you it was historic.)  Well, that was enough to set both Reef and me into hysterics.  My twelve-year-old son was laughing so hard he was crying.

Mike did catch us, and the three of us cruised the ridge tops of Marin, marveling at the views.  However, our short-cut turned into a long-cut when the single track we chose for the final decent actually turned out to be very winding and grueling, especially for me who had not been training much.  While muscling a tedious uphill stretch, my back spasmed.  I rolled the last couple miles at snail pace, dismounting for every bump.  My back hurt, but I was not scared.  It was just a back spasm, nothing more, nothing less, and I knew it.  And after a couple of rounds of cancer, knowing the cause of pain, even if it is a stupid one, is a beautiful thing.

When we arrived back at my parents house, I immediately asked my Dad if he had any painkillers.  “It was that good?” he teased with a grin.  I guess you are getting old when you want painkillers after a ride instead of a beer.  Mike and I each took 1000 mg of Tylenol.  Then Cali asked if she could have some too because her knee was hurting, and I said, “Why not?” So I gave her healthy dose of children’s syrup.

Later in the week back in Santa Cruz, Reef flipped over the handle bars of his bike trying to repeat the tricks he learned in Marin and bit a large hole in his tongue.  There were a few days where I was keeping track of the Tylenol schedule for Reef, Cali, Mike and me simultaneously.  We went through two bottles of children’s Tylenol in four days. I felt like we were some kind of drug commercial.  Tylenol should have been paying us!

But as we stood there in the kitchen taking our drugs, united in pain, I was so thankful to have problems as benign as sore necks and back spasms and flat tires and bitten tongues.  Thankful to be together.  Thankful to be caring for my children.  Thankful to be able ride my bike too far and strain my back and still be just fine.

old friends
Me (left) and Suzy, just like old times!

And so my holiday wish for all of you is that you also find yourself surrounded by friends and family.  I am wishing that your inevitable woes are along the lines of backaches and flat tires, annoying, maybe a little painful, but in the realm of the fathomable.  And I am wishing that if your problems do dip into the deeper side, as I well know they can, I hope you can somehow muster enough patience and humor to get you through, trusting there will be a rainbow at the end of the tunnel.

 

 

Sending you so much love for the holiday season.  I am so thankful for all of you!

Love,

Jenny Lovejoy Bennett

with Mike, Reef, Cali, Summer and Faith

and our new addition, Cali catCaliCat

 

 

 

Six Passes

Halloween 2017
Halloween!

Mostly we are out of the hospital world.  Mostly, we wake up in our own house and have breakfast with our own family.  Mostly, Cali goes to Miss Meggie’s second grade classroom at Bay View School and eats lunch with her classmates.  Like everyone else, she rushes to beat the crowds on Friday Popcorn Day.

True, some things are different.  Cali and I still have an arsenal of medications to ingest at least twice daily.  But in our household, taking meds has become as common place as brushing teeth.

“Did you remember your pills, Mom?”  my four-year-olds chime in unison every morning when I sit down to breakfast.  They love to catch me forgetting (which is most of the time.)

cali-in-the-library.jpg
Cali relaxes in the library

Then there is Cali’s chronic foot pain.  Despite our attempts to placate her discomfort with drugs, ice packs, and supportive shoes, walking is still just plain hard.  She limps energetically around school, where she won’t be caught dead using a wheelchair or walker.  But each day at recess she makes a beeline for the library, where she can rest her feet and zone out in front of a book or computer screen.

Walking to and from school with the neighborhood gang is usually out of the question.  And I – I, who once gathered for fun in Justin Herman Plaza to chant “Critical mass, don’t use gas!” and snarl Friday rush-hour traffic; I, who commuted from Davenport to UCSC by bike daily, come rain or wind; I, who once did all my grocery shopping by human-powered trailer even with toddlers – I have become a proud master of the triple-black-diamond Bay View School parking lot situation.

Now some schools have an automobile pick-up plan, with an organized line of parents in clean, boxy cars patiently waiting to collect their backpacked offspring.  I know because I attended such a school.  We waited in neat rows organized by grade, while the principal herself called students forward by first name.  Any driver who was remotely suspicious (dirty windows, unfamiliar face, different last name) was pulled aside into quarentine to have their credentials vigilantly reviewed.  Sometimes we sat there on the sidewalk for as long as twenty minutes, waiting for our carpool drivers to arrive.  I didn’t care.  I was always happily playing hand-games with my friends or trading pencils. We even got to wait inside the classroom on hot or rainy days.

I never considered my mom’s dedication as she waited in those long “carpool” lines.  She wisely brought her book to read, arriving early to wisely secure her position.  However, in retrospect, at least there was a method to the madness.  At least the girl with braces on her legs didn’t have to walk a quarter mile to get to her car.  At least all of the children were safe and accounted for.

But this is not Bay View Elementary.  Bay View is completely Santa Cruz, a free world, a free-for-all world, a world with few observed rules, at least in the parking lots.

Halloween with friends
Cali (right) as “Princess Jasmine” poses with some school friends

Bay View Elementary has over 600 students and a staff of more than sixty adults. In addition, the campus houses the district’s special needs preschool and a neighborhood parent cooperative preschool. Yet for all these students, faculty and the care providers who collect them every day (read grandparents, parents on disability, injured staff and students, disabled students) there are only a measly four handicap spaces – two in the front parking lot and two in the back.  I personally know one parent who just had surgery, a teacher who has trouble walking, a kindergartener in a wheelchair, and my daughter.  Check! That makes four. Yet I am sure there are many more who justly qualify for handicap parking.  (Not to mention the poachers, who don’t.)

Needless to say, trying to get one of these four coveted spots is an art. To make matters worse, the school bus, who only serves the special needs preschool (such is the district budget), parks in such a way to block two of the four spaces precisely at pick-up time.  If I arrive early, I may be able to nab one of these prime spots, but I risk being trapped by the bus.  If I arrive late, theses two spots are rendered useless, even if they are empty.  The handicapped bus is competing with the handicapped drivers.  (Go figure.)

Halloween Sum and Faith
Faith and Summer get ready for Halloween!

Nevertheless, each afternoon I load my twin four-year-olds into the car, put on my best combat face and depart my house in my dirty minivan a good twenty minutes early, armed with my critical handicapped parking pass.  (Mind you, it is not a twenty-minute drive; I live a mere four blocks from campus.)  We amble slowly down Bay Street, taking extra precautions at the three-way crosswalk, where our patriotic neon-clad crossing-guard bedecks the intersection with orange cones and American flags, while a police car sits in waiting, ready to ticket.

Several feet past the busy intersection, we roll towards the first parking lot entrance.  It’s tricky, but in the three seconds available, I have learned to perform a quick visual survey while simultaneously avoiding unpredictable school-age pedestrians.  Has the bus arrived?  Are either of the two handicap spaces free?  Are there any other vacancies?  How is the traffic?

Turning into this awkward triangular lot prematurely can be a death sentence because it takes upwards of five minutes to get out of the lot, wasting precious seconds in the back lot.  However, scoring a spot in this desirable real estate is worth it.  The front lot is by far the closest point-to-point walk from Cali’s classroom, and Cali grins broadly when I reveal my parking success.

But more likely than not, the front lot is unavailable, and I move on.  The back lot is bigger, which suggests a higher probability of vacancy, but this is an illusion; the majority of the spaces are reserved for staff.  Still, if I arrive early enough, one of the remaining two handicapped spaces is usually unoccupied.  However, finessing my long minivan into one of these centrally located spaces can be precarious, between the line of double-parked cars severely infringing on my turning radius (despite the big red signs that say “No Stopping, No Waiting”) and the parents loitering outside their cars on the handicap turf itself, chatting as if the blue lines indicate some sort of town plaza.

I purposefully hang my red handicapped pass from my rearview mirror and put on my sweetest smile as I slowly nudge into the remaining space.  The loitering parents glare at me as if I am trying to run them over, which is not quite right; I am trying to move them over.  I imagine the horrible things they are thinking about me.  Why is she being so aggressive?  She’s not handicapped!  Who does she thing she is taking advantage of that handicapped pass?  

I bolster myself with images of my daughter crying in the middle of the night, her ankles swollen to the size if softballs because she walked too much that day.  I think of the pounds of Tylenol I am buying from CVS to counteract her daily pain and the liter of Gabepentin I deliver to the school nurse biweekly to counter the nerve damage she suffers day in and day out.  “I am doing this for Cali,” I tell myself, and I push past their (imagined) sneers with a righteous smile and tall shoulders, dragging my motley four-year-olds through the mess.

But some days I don’t capture one of the prized spots.  For example, take what happened one exceptionally hot day last week.

At our first crossing-guard pass, my twins demanded I roll down the windows.  “Hi, Jerry!” they shouted.  They were rewarded with his iconic jovial laugh, “Hi girls!” he waved.

Only minutes later, after unsuccessfully trolling both lots, we passed the guard station again.  “Hi, Jerry!” they shouted once more, thrilled to have another chance to yell out the window.  He waved again.  I wondered what he was thinking.

We were finally able to park about a block away on a neighborhood street.  As we traversed the crosswalk, this time on foot, my twins did not miss the opportunity to greet Jerry yet again.  “Hello!” he said cheerfully.  “Nice to see you out of your car!”  I half-smiled.  Too hard to explain, I thought, especially with the elementary kids amassing by the second at the corner to cross.  He had a job to do.

Cali in the pumpkin patch
Cali’s class goes to the pumpkin patch!

We found Cali outside her classroom, pacing the length of the coat rack, searching urgently for me.  The moment she saw me, she heaved her backpack into my arms.  “Where did you go?” she asked with relief.  “Let’s go!”  She put her head down, flapped her arms, and started speed-limping towards the back parking lot gate.

“Wait, Cali!” I called, as gently as I could.  “It was so crowded today.  We had to park on the street.”

“No!” she shouted.  Tears burst from her eyes.  Her swollen left ankle was bulging out of her sparkly supportive high-top.

Okay, think fast.

“I know!” I said, trying to sound fun.  “Why don’t you be a big girl babysitter and wait in the shade with Summer and Faith, while I go back and get the car to pick you all up?”

cali rescues cat
Cali “rescues” our new cat from the plum tree, while Summer and Faith take notes.

Cali rolled her eyes.  Summer said, “No!”  Faith countered, “Sure!”  (This interaction is the story of my life right now.)

In the end, Summer and I walked back to get the car, while Cali and Faith waited on a shady bench near the front parking lot within the school gate.  Summer was thrilled to get Jerry all to herself as we walked by his corner on foot to retrieve our car (fourth pass), and again, when we drove by moments later to get Cali and Faith (fifth pass).

“Mom, quick, put the window down!” she ordered.  “Hi, Jerry!” she called powerfully.  He kindly waved.

As soon as we turned into the congested triangular lot, Cali barged out the school gate with no regard for cars backing out of their spaces, with no regard for her little sister Faith, who wisely stayed behind on the bench.  This, I reminded myself, is why I insist on meeting Cali at her classroom.  This is why I don’t have her wait unsupervised in the back parking lot, as other car-bound parents trust their children to do safely.  I have found Sotos Syndrome lowers Cali’s inhibition with people and cars alike.

Not knowing what else to do, I parked in a red no-stopping zone, completely boxing in the special needs school bus.  The bus driver shook her head in scorn.  I understood.  I would shake my head, too, I thought.  Suddenly, the headlines flashed in my imagination:  “Self-absorbed mother loses control of her unwieldily daughter in a school parking lot and then parks illegally in front of a school bus, blocking disabled preschoolers from getting home.” It sounded pretty bad.

Suddenly, I knew what I needed.  I needed a T-shirt that said in large, highly visible block letters, “GIVE ME A BREAK!  MY KID HAS CANCER!”  I wouldn’t even add the second line, “Give me a break.  I just survived cancer.”  Or the third line (in parenthesis) “Give me a break. I have twin four-year-olds.” Or the footnote, “Give me a break.  My daughter also has Sotos Syndrome.”

Instead, I smiled (again) and helped Cali into the front seat as fast as possible.  Next I retrieved Faith, praising her for waiting.  I quickly backed away from the bus just as the line of special needs preschoolers arrived.  However, we waited more than five minutes for a chance to turn right onto Bay Street, now clogged with darting kids, distracted parent drivers, racing college students, and gangs of middle schoolers on skateboards surfing the sidewalks.  Hey, there goes Reef!

***

Reef in the box
Reef-in-the-box

I kept telling everyone – Cali’s teachers, my parents, our friends – that we were working closely with our doctor to find the right cocktail of painkillers.  I assured them in a month or so we would have a solution for her pain.  I truly believed Cali would return to her former state of mobility during this eighteen-month-long maintenance phase of cancer treatment.  I was under the flawed illusion that our doctors’ palette of antidotes was deep and wide.  How naive I was.

Yesterday, when we went for Cali’s monthly chemo injection, her oncologist leveled with me.  We had reached the maximum dose of Gabepentin, their go-to drug for neuropathic pain.  The narcotics we tried were seemingly ineffective, and their side-effects were not practical for longterm use.  The only recommendations she could offer were the things we were already doing – elevating her feet when they started to swell, icing her ankles, wearing compression socks, and the universal, only semi-effective panacea, Tylenol.

“This is just a time we have to get through,” her doctor said in a practiced even tone.  (It was obviously not her first time giving this speech.)  “And hopefully we will never have to look back.”  I swallowed a hard lump in my throat.

Cali, who sat on the hospital bed next to us, didn’t seem fazed.  She had just learned how to reserve library books online, and she was thrilled.  It was nearly as good as shopping.  Don’t let anyone tell you otherwise: Retail therapy is real.

So we will continue with her limited-walking, lots-of-screen-time menu.  We will try to go swimming for exercise, even as winter is fast approaching and the pool deck is getting cold and slick.  We will keep showering Cali with meds three times a day, hoping her liver survives and the cancer does not.  We will keep battling the parking lot scene.  As her doctor hinted, it could be a lot worse.

***

When we finally managed to turn right onto Bay Street and passed Jerry for the sixth time, everyone stuck their hands out the windows and shouted a chorus finale, “Hi, Jerry!”  Bless him.  He just laughed and waved.  I tried not to imagine what he thought of us.  Forty-five minutes after our take-off, I pulled back into our driveway.  I had completed the mission.  I had driven four blocks to collect my disabled daughter and returned home, safe and sound.  Everyday I count my small victories, even if they take six passes, and hope, eventually, they add up to a big win.

 

 

 

 

 

 

Close to the Edge

Jen and Mike NepentheGetting to the remote middle section of Big Sur coastline, affectionately called The Southlands by locals, has always been difficult. Most visitors traveling south along this famous stretch of Highway 1 don’t make it past the legendary Nepenthe restaurant (right) or the trailhead to famous McWay Falls. It takes perseverance to continue the extra twenty miles along the winding highway, cut precariously into vertical

cliffs, to reach the sleepy hamlets of Lucia or Gorda, where red-tailed hawks outnumber residents about ten to one and the land is far louder than the people.

Big Sur trail
Me walking my bike over the new access trail.

However, last winter’s record rainfall exponentially hampered the Southlands’ accessibility. The dramatic collapse of a critical Highway 1 bridge at the north end of Big Sur and several massive mudslides to the south completely isolated sections of the coast. Initially, rations had to be helicoptered to marooned central coast residents. However, the community in the north quickly organized and negotiated with California State Parks to build an emergency access trail through parkland adjacent to the collapsed bridge. Northern Big Sur residents actually started backpacking their groceries and other necessities over the mountains by foot.

 

Further south, the coast eventually became accessible by a treacherous, one-lane BML road over the rugged Santa Lucia mountains. The road skirts a massive hidden military base on the dry east side of the coastal mountain range, and then snakes steeply down the coastal face. Amazingly, trucks started bringing groceries over this winding road via Salinas Valley, and determined tourists began trickling over the mountains to experience this stretch of coastline in relative desolation.

So less than forty-eight hours after Cali got her ng-tube out (yes, it’s finally out!) and was cleared to go on a family camping trip, guess what we decided to do? It wasn’t enough to go on any old family camping trip with two four-year-olds, an emotionally volatile preteen, and two cancer patients. No, sir. We had to make a pilgrimage to this isolated coastline, which not only had no cell phone reception, but no working landlines at all. We had to take the old Suburban (notorious for breakdowns) over the one-car-width road, where contacting any tow-truck would be pretty much impossible, let alone organizing a triple-A to rescue. We had to go on Fourth of July weekend, to a purportedly full campground with no reservation. (We outright ignored the message on the camp that phone said curtly, “If you don’t have a reservation, please don’t come.”)

Road cloasedIn fact, in a moment of extreme optimism, we even invited our entire neighborhood to join us later in the week. “We’ll call if we don’t get a campsite,” we said casually, naively assuming “calling” would be possible.

In our haste to get away, we even forgot to bring sufficient cash; after amassing all the quarters under the car seats and crumpled bills in our wallets, we barely had enough to pay for two nights of camping, let alone firewood or ice. With all the landlines down, credit cards and ATM machines were worthless. Yet these setbacks didn’t stop us. We didn’t turn around. We somehow kept an optimistic cheer. You could say it was a mission of faith.

Overflow lawn
Enjoying the overflow lawn

AND… somehow, it all worked out. The car made it over the rugged mountain road without even one stall. My four-year-old daughter Summer did not step off the 500 foot vertical drop (with no guardrail) where she insisted on peeing on Nacimiento Road. Cali did not crash as she scootered recklessly at breakneck speeds around the campground loop, her platelets still dangerously low. By dumb luck, the campground hostess routinely saves a big open lawn with a sunset ocean view for disheveled families like us without at reservation, so we secured a docking site. And miraculously, the hostess even allowed our ten extra friends and their dog to join us the next day. And somehow we scrabbled together enough cash (without selling off any critical equipment or children) to get through the first two nights of camping until the ATM in nearby Gorda magically reopened on the third day. (My son did contemplate setting up a Jade stand on the side of the road. Hey, it’s Big Sur! It might have even worked.)

 

So with all this good luck, we thought, why not push the envelope a little further? And that is how I found myself huddled with my three girls on a rocky ledge, sandwiched between a fifty-foot cliff and glistening poison oak bushes, insisting my girls stay seated a safe 24 inches from the loose, rocky edge. I folded my jacket into quarters to soften the corners of a rough piece of sandstone, urging Cali to sit. “Please, Cali,” I begged. “Daddy and Reef will be back soon.”

Reef big sur freedomOur outing had started as an innocent, short hike to Jade Cove, a destination close to our campground frequently sited in tourist literature. When we asked the camp hostess about the trail, her only comment was, “It’s a little steep, lot’s of switchbacks. Be careful of the poison oak.” What’s a little poison oak? I thought cockily. I’m from Northern California. A little poison oak doesn’t scare me. It sounded like the perfect excursion for our disabled daughter and preschool twins. (Ha! We clearly were not thinking.)

The first section of trail required bushwhacking through patches of overgrown thistle. At one point, my daughter Faith screamed in terror, and would not move forward. “What is wrong?” I asked in confusion. She was staring eye-level at a giant purple thistle flower, with spikes two inches long. She pointed at the flower, her face white with fear.

“It’s a flower monster,” she wailed. I should have heeded the omen; we should have turned back right there. But of course, we pressed on. I lifted her onto my shoulders, laughing at her fears. The next stretch of trail was literally a tunnel through a sea of dense, shiny green and red poison oak. “Don’t touch anything!” Mike and I warned, our voices starting to rise in intensity. This only triggered our other four-year-old, Summer, to question every plant we passed. “Can I touch this, Mommy? Can I touch this? What about this? Can I eat it?” Give me a break. Wasn’t this supposed to be fun?

Finally we hit the edge of the cliff, where a rickety wooden guardrail served as a warning of the shear edge dropping a hundred feet to the pounding shore break. “Everyone hold a grown-up’s hand,” I lectured sternly. Off-canter steps taller than the twins’ waste dropped steeply to the right.

“Do you think this is a good idea?” Mike asked.

“We’re fine,” I said stubbornly. The explorer in me wasn’t ready to give up yet.

Mike hoisted 63-pound Cali onto his soldiers. I worked my way down the stairs, slippery with ocean mist, alternately lifting Summer and Faith over the large drops.

Reef and friends first day of school
Reef (center) with friends on first day of Middle School!

“I think we might have a problem here,” called Reef from around the next bend. When I rounded the corner, clutching the little girls’ hands firmly, I saw what he was talking about. A fifteen-foot wide swath of rocks from a recent slide had buried the trail. Reef was using both hands to pick his way across the most hazardous section. With each of his light steps, little pieces of gravel shifted and rolled off the cliff edge, cascading menacingly into the abyss far below.

 

And still we pushed onward. Cali balanced on Mike’s shoulders as he very carefully chose his footing over the loose scree. I enlisted Reef to spot the twins from below as they crawled over the rocks using their hands and feet like agile monkeys, too young and close to the ground to recognize the magnitude of danger at their feet.

Treacherous trail
Eroded trail

However, at the next switchback, our trail turned from goat path to vertical gully. Winter waters had eroded the path so significantly that there was no longer any horizontal component to the trail, requiring serious bouldering skills to descend. I suddenly imagined trying to lift Cali and the twins up this rock wall on our way out, and I finally realized how dangerous this whole adventure was becoming.

 

Reef was calling ahead; he was ready to find Jade. But Mike was no longer hiding his anger at me, shaking his head, his eyebrows knit in worry. However, it pained me to cut the adventure short. I thought quickly. What were my choices?

“You go with Reef,” I commanded.  “I will wait here with the girls here.”

“Wait here? Are you sure?” Mike looked over the precipitous ledge with grave concern.

“We will be fine,” I laughed. “This is easy. We will just hang out, have a snack. We can’t let Reef go down there by himself!”

So Mike dutifully scaled the boulders after Reef, and in a moment the sound of their small voices was lost to the thundering surf below.

We could not see the cove, and the sun was hot. I rationed bits of granola bar to keep the girls seated. I kept my voice cheerful, but in the pregnant quiet while we waited for Reef and Mike to return with their treasures, I noticed how fast my heart was beating. I am not sure what I would have done if Mike hadn’t returned. There was no way for me to safely get Cali and the twins back up the trail alone. There was no way to safely leave the girls to look for Reef or Mike if they got hurt. So we shared a water bottle, shed a few layers. Watched pelicans cruise at eye level.

After about fifteen long minutes, Reef and Mike did return, their pockets filled with wet pebbles to be studied later. We badgered them with questions, “How was the cove? Did you find Jade? Was there a beach?”

They shrugged their shoulders. Who knows?  Reef said, with worry. It didn’t occur to any of us that we wouldn’t even know Jade when we saw it. “Let’s get out of here,” said Mike. Reef was already booking up the trail.

When we made it back to the roadside, Mike thankfully volunteered to walk the quarter mile back to our campsite to get the car. My four children and I sat cross-legged on the dusty gravel shoulder in a ragged semicircle, sandwiched between the oddly silent highway and a row of slide debris piles that had been neatly pushed to the roadway edge. The sun baked down on us. The ocean stretched blue and quiet to the horizon.

“It’s kind of like we’re a homeless family,” Cali said, finally breaking the silence. “But we’re actually fine.” She smiled. We all smiled. It was funny. Reef and I started to giggle. Then we started to laugh the silly, tear-jerking laugh of relief. Here we were sitting on the side of the road, in the hot sun, in the middle of nowhere, and we couldn’t have been happier. Firm ground, cleared vegitation, a ride on the way. The side of the road had never felt so good.

And isn’t that the way some of us are? We have to get really close to the edge before we can enjoy coming back.

Cali first day of school
Cali (left) with friends on first day of school.

AND, I am happy to announce, Cali and I are back! We are fully immersed in real regular life, and that is a great thing.

 

Faith swimSummer swimLater, I learned jade is known for its ability to increase conscientiousness to a higher level. Jade purportedly promotes wisdom, balance, and peace. It can facilitate connection with the spiritual world, and often appeals to water signs like me. Funny that our central coast jade can only be found in the barely accessible tidelines at the base of treacherous Big Sur cliffs, the true California western frontier. Is it the jade or the journey that leads to epiphany?

You may see me wearing a jade pendant around my neck these days. Why not? Higher conscientious, wisdom, balance, peace…these things sound great. But mostly I am carrying the jade close to my heart to remind me how close to the edge I was. To remind me how good it is to be back.Jen Big Sur

One of my favorite albums in High School.  Some of you might find this difficult music, but it brings us to the edge and back again.

 

 

 

 

 

 

 

 

 

Blowing Off Steam

Reef grad
My son (far left) “graduates” from fifth grade!

Yeah, Cali still has the ng-tube running from her stomach out her nose, taped to her cheek, and hanging like a fishing line down her back. And yeah, Cali still gets chemo every ten days. And yeah, there are raging readjustment arguments between the males and females of our family constellation. But in between, Cali is visiting Bay View School, attending homeschool enrichment classes, signing up for summer theater camp, and taking a Hula class. All is tending towards hunky-dory normal kid life. A mom can be fooled into thinking she is charge of her kid’s schedule.

And then, on Wednesday morning, just as I am packing my bag to take Cali to Santa Cruz Physical Therapy (Yay – it’s local!), my phone buzzes. Lucile Packard Hospital is calling.

“Good morning. May I talk with the parent of Cali Bennett?” says a female voice.

“Speaking.”

“I am calling from radiology to give you instructions for Cali’s MRI tomorrow.”

I know she is just the scheduler.  I know she is just doing her job.  But I can’t contain my frustration.  I subject her to my stream-of-consciousness anger. “What MRI? She’s not getting an MRI tomorrow. Nobody told me about an MRI. Who ordered it? We cannot make it. Cali is busy. She’s going to school. We will not come.”

“Well, your primary oncology doctor placed the order last Thursday. The order is urgent,” explains the voice evenly.

Cali with duckling
Cali pets a duckling in her homeschool classroom.

My face is flushed and my eyebrows, knit. My flexibility has expired. I remember vividly last Thursday morning. We met with Cali’s primary oncologist. She explained no further tests were necessary. On her way out the door I distinctly remember her saying, “See you in ten days! You don’t need to come back for labs or anything.” Cali beamed. We both believed her words.

“I don’t understand,” I lecture the scheduler. “Nobody told me Cali needed an MRI. Tell Cali’s doctor to call me. I am not going in unless I know why.” The scheduler promises to get in touch with Cali’s doctor and have her contact me. I hang up.

Just like that, the sunny sky loses its brilliance. The morning freshness spontaneously dissolves. I do not want to go to Stanford tomorrow. We have plans. Cali is going to visit her Bay View first grade class, the one she was supposed to attend but never did. We are going to forget about Stanford tomorrow. We are going to pretend we have a slightly normal life. Why am I feeling so inflexible? Why am grumping around?

I load Cali into the car to go to physical therapy, making sure my phone ringer is on. “Why do I need a picture of my brain, Mama?” Cali asks sweetly. There is endless patience in her voice. I wish I could be as accepting as her.

“I don’t know if you need a picture of your brain,” I say shortly. “I don’t want to talk about it. I’m not even sure we are going.”

Cali knows me well enough to stay quiet the rest of the short drive.

Cali’s physical therapist greets us in the crowded waiting room and escorts us a back to the large gym, filled with balls, treadmills, weights, and adjustable tables. As we pick our way through the equipment, we pass patients having their ankles stretched, their necks massaged, their backs shocked by an electric stimulator. The average age is about ninety, but Cali doesn’t care. To her, it looks like big playroom. Here she is allowed to jump on trampolines and balance on rocky boards.

Cali Moana 2
Cali performs in “Moana”-themed summer theater camp production.

Somewhere in my periphery I realize her therapist is trying to ask me some questions, but I am in another world. There is a message on my phone from the Bass Center, and I am listening intently. The voice explains I was sent an e-mail last week, but the doctor will also follow up with a call this afternoon.   TRANSLATION: The MRI is not canceled. The order was not a mistake.

I scroll through the e-mails on my phone, but I can’t find it. However, I don’t really need the e-mail. I can fill in the blanks. Cali’s primary oncologist is incredibly competent, but she is a fellow. Per hospital regulations, our fellow always has to consult with an authoritative attending after each of our visits. When she met with us on Thursday, Cali looked and acted well. The intense pain that sent Cali to the ER two weeks prior resolved as fast as it developed. Cali’s doctor confirmed the CAT scan performed at our local hospital was normal. We were all swept up in feelings of wellness.

My guess is the attending on that particular day was more conservative. When our fellow consulted with the attending after we left, he must have insisted on a follow-up MRI, despite Cali’s well appearance. In the frenzy of the approaching Memorial Day weekend, they forgot to let us know.

When the fellow finally calls in the late afternoon, I have already accepted my fabricated story as truth.

“I am so sorry about the misunderstanding about the MRI,” she starts.

I quickly get to the heart of my frustration. “I guess the attending wanted an MRI? Nobody told me,” I say. At this point, Cali’s doctor is more like a close friend. She reads my annoyance adeptly, even over the phone.

“I assumed you got my e-mail. I should have called in person. I should always call for something important, my error. Yes, the attending felt we should get an MRI, just to be safe.”

“It’s okay,” I say, but I can’t kick the forlorn tone in my voice. “What time do we have to come in?”

Fourth birthday
Summer and Faith turn four!

So on Thursday, instead of waking up and eating breakfast, instead of visiting our local first grade classroom, instead of playing with our neighbors and watering our garden, Cali is fasting (she goes under full anesthesia for an MRI), and I am driving her over the hill for our 10:45 am appointment. Cali is incredibly cheerful, coloring in a new coloring book and reading aloud to keep herself busy. I am listening to a handful of fresh music CDs I have preloaded in the car, trying to meditate on the music and tune out my reality.

Every ten minutes Cali asks her question, “Why do I need a picture of my brain, Mama?” Every time I answer the same way, “Because the doctors want to make sure the chemo is not hurting your brain.” I guess these words don’t make sense to her because she keeps asking the same question over and over, about twenty times over the course of an hour. But perhaps it is not that my words don’t make sense; maybe she has picked up on my attitude. Maybe she knows I don’t think they need a picture of her brain.

It would be cocky to suggest I know more about medicine and chemotherapy than a Stanford attending. I have not studied chemotherapy drugs in school; I don’t even have first hand experience with another child with lymphoma. However, I do claim to know Cali. I am her mother. I have watched her fastidiously for eight years, through many medical and developmental challenges. And it is my motherly intuition that this MRI is one MRI too many. Her brain is fine. It’s her spirit that needs help most. Going back to the classroom she was denied last fall is what she wants more than anything else in the world, and it is breaking my heart to rescind one of her chances to “get back” for an unnecessary medical procedure.

Of course, the MRI goes fine. And of course, Cali wakes quickly and easily from anesthesia, and we head home as soon as possible to avoid evening traffic. Of course, Cali doesn’t mind waiting another few days to get back to Bay View. And of course, I continue to stew over the MRI I didn’t want, unable to drop my bitterness.

Cali’s doctor is quick to call with the MRI results: completely normal, aside from the abnormalities she always has due to her Sotos Syndrome. No evidence of brain damage. This is great news, I guess. But I am still annoyed. I knew her brain was fine.

It just so happens Mike and I have a planned a weekend of wild revelry with a few of our Grateful Dead fan friends, which happen to be all our neighbors. (We are blessed to live on a one-block street with eight confirmed Deadheads, and probably a few others in hiding.) Way back in the fall, we all bought tickets for Saturday night’s Grateful Dead and Company concert at the Shoreline Amphitheater in Mountain View. Then, a few weeks ago, in a moment of inspiration, I convinced Mike to get Sunday tickets, too. “After all,” I argued, “we have an awful lot of steam to blow off.”

Reef Jay
Reef finishes a twelve-mile paddle (Jay Race) to raise money to help kids with disabilities.  It takes more than three hours!

When Saturday afternoon arrives, I am still wallowing in my anger over Thursday’s pointless trip to Stanford. Friday’s newspaper headlines, “Trump Pulls Out of Climate Pact,” still lingering on the kitchen counter, are an insult to injury. To make matters worse, I have also learned that Cali’s “Maintenance” program for her cancer treatment, scheduled to start in late June, will be a lot heavier than I somehow presumed. The program will not last the solitary year I anticipated, but two and a half years. By the time we finish, Cali will be ten years old, nearly Reef’s age! Additionally the program will involve more chemotherapy drugs than I hoped: a daily oral chemo (must be taken two hours before and after any food – harder than it sounds), monthly steroid courses (which cause muscle wasting and sleeplessness), monthly Vincristine infusions (which cause gross motor impairment), and tri-monthly intrathecal infusions (which require full anesthesia). Lighter, I suppose, but definitely not freedom.

However, to top it off, when I walk into our back yard, I see my husband has boarded off our children’s sandbox with redwood planks to protect his newly planted lawn. The new boards prevent the little girls from pouring sand on the lawn, but they also block adult visibility and entrance to the sand area, requiring me to duck precariously under the low nail studded tree house roof to check if they are still alive back there.  There is something symbolic about the boards cutting my yard into blocks, stopping my line of vision, cutting me off from my little girls, preventing a circular route around the tree fort. Everything in my life seems to be boarded up and blocked and controlled and prevented. Red rage boils up inside me.

Luckily, Mike is gone on a bike ride when I discover the new boards, and I do not scream at him. I excercise every bit of my self-control to not rip the boards out with a crow bar. I contain my anger to steaming around the yard, throwing toys in their respective crates to clear a walkway and muttering strange sarcastic comments about boards and walls and caution tape, while my girls happily play sleeping kitties behind the new wall.

This is not how I want to feel on my long awaited day musical holiday, but I am determined to not let my seemingly omnipresent anger ruin my plans. Just in time, my neighbor strolls by to check on our departure plans. “Three o-clock can’t come soon enough,” she agrees. “Come down at three, and I’ll make you a drink for the road.” I happily accept.

Summer sprints
Summer sprints to the end in the “Junior Jay Race”

Promptly at three o’clock, I wander down to her house. At first she and her husband can’t find the tickets, but I am not fazed. Nothing is stopping me; I am going, hell or high water. In the end, they find the tickets, but we are the biggest clown-car that ever was. It takes us forty-five minutes to detach from our collective nine kids and assemble our hydration, medication, clothing, and libations. Funny how you need more stuff as you get older. At last, the eight of us pile into our unreliable suburban, laughingly nicknaming her “Brokedown Palace,” and depart with tunes blaring.

However, we only make it as far as Taqueria Vallarta (three blocks away), when it is declared we must stop for burritos. As soon as we pick up the burritos, as if on cue, the Suburban transmission goes out. We shake our heads. “Never should have nicknamed her,” someone says. We manage to limp the car back to Redwood Street and exchange the defunct vehicle for our trusty Toyota. Now squeezing eight into a seven-seater minivan, we are finally really off.  I am still determined to have a good time.

The show starts with a bang. We are on the lawn, the sky is clear, the sound is good. I am dancing, I am smiling, I am here. But I am also very tired, and in my heart, something is heavy.  I ask our younger friend, “What do you think? Do you think John Mayer is having fun?” (John Mayer, a youngish pop-star, strangely turned Deadhead, now “plays” the role of Jerry in the band’s latest incarnation.) She shakes her head. Something is a little off.

And then it happens. Suddenly, all the suppressed frustration and anger and sadness and hurt starts to pour out my eyes. I move back from my friends where I can get some perspective on our group. I sit down and roll my head into my tucked legs. I sob and sob. First, because I am away from the group. Next, because my husband is having more fun than me. Then, for all the difficulties of the year, for all Cali’s hardships, for the unfairness of life. As I cry, my sadness grows and grows. Before I know it, I am weeping for the destruction of the planet, for all the violence in the world, for the pathetic plight of the universe doomed to expire light years from now, for the poignant beauty in the music, for all the pain in the collective human soul. I try to stop the tears and the heaviness, but it just keeps pouring out. The music has faded to background noise; I can barely hear it. Friends try to comfort me. “You take on so much, and don’t ask for much back,” one offers. Is it true, I wonder? It is time to let some of this baggage go? I cry and cry some more.

Back at home I lay awake all night. No longer angry, no longer sad, I am just deflated. My husband wonders out loud if we should go to Sunday’s show. He is tired, and I do not want to be sad again. However, in the wake of my massive release, I have missed the music. I love the music. I need to go again. I need to hear the music this time.

By Sunday afternoon, I have rallied myself once again. We are a smaller group the next night, but I am more grounded. My expectations are lower. I am going to experience what comes to me. I am not arriving with preloaded angst.

dead pic
Having a real good time

True to my word, every song filters into my cells. I am dancing, I am purging, I am doing exactly what I need to do. There are no more walls; there are no more rules. Every song is a message to me. My friends share in my joy; we are riding a party wave. At intermission, I lie on my back and look at the stars, faint against the backdrop of the bright amphitheater lights. Swallows swoop to catch the last evening insects. A football moon is on the rise.

During the second set, when the band floats into their psychedelic drums and space interlude, I dance my way through the port-a-potty line and then follow a whim to take the long way back to our square of grass. I weave through wandering revelers, islands of lawn chairs, and LED light hula-hoopers towards the amphitheaters exit stairs. I trace a path around the long beer garden lines in the outer arena, moving past hundreds of faces against the surreal background of thunderous base reverberating through the moist night air. I put my arms out like the wings of a red-tail hawk and soar through the crowd. You see, at a Dead show you can actually do this, and no one even looks at you funny.

Girl power Jay
Summer (middle), Faith (right), and a friend (left) proudly show off their Jay Race bracelets

Then, as I am flying around the far side of the venue, I see, out of the corner of my eye, a sneaky set of stairs going down. Down? Without stopping to consider what I am doing, I go to the stairs. I slip agilely between bodies and make my way “in” the “out”, hiding in the confusion, moving like a fish swimming up-stream, my eyes forward, my feet skipping left-right, left-right. Someone behind me says “Hey!” but his voice is quickly lost in the commotion. Just in case I am being followed, I slide back to the “entrance” side of the stairs at a convenient break in the railing and keep moving in time to the pulsing heartbeat of Mickey’s drums.  Finally, I am ejected eye level with the stage in the VIP seating area. I spy a relatively empty box seat and confidently step in just as a red security official passes behind me. The box holders give me a friendly nod. I am in.

AND I AM IN! Just as I arrive, the band transitions out of the space section into a heart-wrenching rendition of Bob Dylan’s Hard Rain’s A-Gonna Fall, and I am eye-level with Bob Weir as he belts the lyrics and holds the long notes. I am so close that I can see his straining face, his bushy furrowed eyebrows. I immediately sense that this song is his ultimate commentary on the state of the world, the meaning behind our rainy California winter, his message to posterity, his message to me.

Heard the roar of a wave that could drown the whole world…

Heard ten thousand whispering and nobody listening…

Heard the song of a poet who died in the gutter…

 

I met a young child beside a dead pony…

I met a young girl, she gave me a rainbow…

I met one man who was wounded in love,

I met another man who was wounded with hatred…

 

And it’s a hard rain a-gonna fall!

The song’s lyrics speak directly to my mind-space. Suddenly it all seems clear. The world is at once full of beauty and sadness; they are sitting right next to each other at the table. Waste and abundance superimposed on one another, anger and love intimately intertwined, life and death, an inseparable dance.

After the wailing ballad, the band erupts into an energetic Casey Jones, accelerating, chugging faster and faster like the train it bespeaks. Even the most subdued boxed guests stand up and start to sway.  Us wild ones burst out into the semicircular VIP aisle and start twirling in ecstasy, high-fiving each other with joy, fully immersed in the penetrating top–notch VIP acoustics. The red-vested security officials throw their arms up in surrender. What can they really do with a bunch of wild hippies in the aisle, anyway? We vastly outnumber the red-vested officials. I close my eyes and mentally will my friends on the grass to filter down to my sacred place in this inner circle, but, alas, no one appears. So when Casey Jones finally ends with a bang and the crowd roars its approval, I quickly whisk myself up the secret stairs, around the beer lines, back to my familiar outer orbit, our staked plot on the lawn, teeming to share my epiphany.

On Monday morning, we wander down the sidewalk to check-in with each other. “How are you doing?” we ask each other. We are tired, we agree, but also energized. More importantly, I am no longer sad or angry. Somewhere between a hard rain and a fast train, I let that all go. I tell my friend, “It seems there are two kinds of energy. Physical energy and spiritual energy. My physical energy might be a little low today, but my spiritual energy is sky high!”

Jen and Mike Wadell
Mike and I hike to Berry Creek Falls on a date.  The falls are flowing again!

I can no longer remember why the MRI was so bad or why the sandbox boards were such a big deal. Suddenly these minor details seem insignificant. But I guess, just like my four-year-old Summer has to throw a tantrum before she puts on underwear these days, just like the clouds had to rain and storm this winter to fill the California reservoirs and make our lawns green again, I, too, had to go through some anger and sadness to come out the other side, into peace.

 

 

 

 

 

Long Time Coming Home

Cali in hot tub
Cali enjoys are hot tub at home!

Not too many services are offered on a “walk-in” basis anymore. A worthwhile haircut requires an appointment. A decent Friday or Saturday night restaurant meal requires a reservation. And God forbid you should walk your feverish toddler into her pediatrician’s office. The receptionist will promptly send you to an urgent care clinic. (Why would a primary care provider want to see our kids when they are actually sick?) Even a dog can’t get a basic shampoo at Pet Smart without about a week’s notice.

But, I have announcement. Attention please! Thank goodness – THANK GOODNESS – you can still get a walk-in neck biopsy! No, I am not joking. The fine needle aspiration procedures at the Stanford Cancer Center are still done on a walk-in basis. All you need is a standing order from your friendly ear-nose-and-throat doctor (ENT), and whenever you start losing sleep over an unexplained bump on your neck, you can just walk in, and they’ll stick a needle in it, right then and there.

My bone marrow transplant (BMT) doctor told me she was ninety-nine percent sure my swollen neck lymph node was not malignant (aka cancerous), but she still made a referral back to ENT for further examination, just to be thorough – and maybe to get my anxiety-ridden self off her caseload. Don’t get me wrong; her confidence alone lowered my anxiety of impending cancer relapse from about an 8 to a 2, but the lump just seemed weird. My neck was swollen for no reason, and I don’t get swollen lymph nodes, at least the old me didn’t.

Ironically, I had just seen the referred ENT, Dr. H, less than a week ago for an evaluation of my recurrent sinus infections. During that appointment, this sinus-expert had given me a state-of-the-art “tour” of my inner nose. I donned 3-D video camera glasses while he threaded a flexible micro-camera down my nasal passage. “This is your deviated septum,” he explained as I traveled up my own nostril in full color. “See how the inner and the outer surfaces are touching, blocking the entrance to your sinuses? This condition creates the perfect storm for infections to brew. I can fix this with a very simple, routine surgery.”

When he finished the tour and I removed the glasses, I was beaming. Wow! I love science! It all made so much sense. The image of the pinched air passageway was burned in my memory and corresponded exactly to the way my left sinus had been feeling for years – non-aerated, infection prone, clogged, and having nothing to do with my recent cancer. I agreed to consider the surgery over the next several months (or years) and call him if I ever decided to take the plunge. No further appointments would be necessary, he had assured me. I only needed to schedule the surgery with his secretary.

“Oh, yeah, while I’m here, what do you think of this swollen lymph node in my neck?” I had asked as a last minute addendum. He looked at my lump briefly, lightly palpated the tender area under my chin. “Not particularly concerning. If it doesn’t go away, we’ll stick a needle in it.” His comment was so off-the-cuff, so casual, so dismissive, it didn’t occur to me to ask any further questions.

Reef at school carnival
Reef at school carnival, waiting for his turn in the dunk tank!

So it was kind of strange to be sitting in the same chair, in the same room, less than a week later, waiting to see the same doctor, to ask the same question: What do you think of this swollen lymph node? I had figured if I ever saw Dr. H again, it would be in a pre-operative setting. But no, here I was for our seemingly weekly meeting, this time as requested by my BMT physician.

The doctor-in-training who did the initial intake for Dr. H had obviously not been briefed before my second visit. “So you are here following up with your sinusitis?” he asked with confidence, proudly displaying his thoughtful review of my chart. To his embarrassment and mine, I had to update him. That was so last week. This week I have a new paranoia. My lymph node is swollen. I could see the scorn in his eyes, Duh, that’s what lymph nodes do, but he bit his tongue and treated me with the utmost respect while he recorded my concerns and examined my neck and throat with feigned compassion.

A few minutes later, Dr. H himself walked through the door, this time with two tall, handsome visiting professors from Australia. “Is it okay if these doctors observe?” Boy, they really were out to make me seem silly this time. The confident attending went straight to my neck, closed his eyes, and pressed precisely on my swollen node. “How long?”

“About ten weeks.”

“Painful?”

“Not really.”

“Hmmm….you could really wait another four to six weeks before pursuing any further tests, but I understand you have anxiety…”

Reef in the dunk tank
Reef has a bit of anxiety waiting to be dunked!

Anxiety. So the word was out. My BMT doctor must have the spilled the beans about my breakdown in her office. It was all coming together now. I imagined my name flagged in the Stanford computer network, appearing in bold with asterisks:   ** WARNING – THIS PATIENT HAS ANXIETY. HANDLE WITH CAUTION! **

“I will write you an order for a biopsy today,” he told me in his gentlest tone. “It is walk-in; you can go anytime. But why don’t we try antibiotics first? If the lump is still there in a week, then get the biopsy.”

I give myself credit. I didn’t go rushing into the biopsy center that afternoon. I actually took the antibiotics for the allotted ten days. I meditated faithfully every sleepless night on the lump disappearing, but the lump remained stubbornly the same. I even waited for a convenient time to walk-in, a time when I was already going to Stanford for one of Cali’s chemotherapy treatments, a time when the biopsy could feel like a side note.

But in reality the unknown was starting to eat away at my psyche. I knew the chances of me having lymphoma, cancer of the lymph system, was extremely low. My disease was myeloid leukemia, not known to spread to lymph nodes. Cali had lymphoma, not me. What was I thinking? I knew I couldn’t “catch” her cancer. But what if I had contracted tuberculosis or some other rare contagious disease? It didn’t seem out of the question. I had been hanging around hospitals with a compromised immune system for about two years. Who knows what bugs I had come in contact with? What if I was putting Cali at risk by ignoring my unexplainable lump? Every website I found said consult your doctor if a lymph node stays swollen more than six weeks. I convinced myself I needed the biopsy to protect Cali.

The walk-in biopsy clinic had a small, quiet waiting room at the end of a long hall on the third floor of an auxiliary building off the main cancer center, not a place one finds by chance. I had fantasized about telling my family, “Well, I just happened to be walking by, so I just walked-in and got biopsied,” but I realized that would be a stretch; this was a walk-in that had to be sought-out.

I had barely registered my name with the receptionist and found a cozy sun-warmed leather seat, when I was called back to the entry desk. I was told the attending was walking over from the main hospital immediately and would arrive in less than ten minutes. I barely had time to text Mike and Cali that I would not be visiting them before my biopsy; Cali’s inaugural fifth-block chemo kick-off party would have to wait.

True to their word, a door swung open only moments later and a man in a long white lab coat called my name. “Hi, I am Dr. Long,” he shook my hand as he guided me down a short, carpeted hallway. “I will be doing your biopsy today.” He led me into a small windowless room with a reclining dentist chair and a countertop arranged with slides, test tubes, and a microscope.

He explained the minor risks of sticking a needle in my neck and confirmed my medical history.  I soon realized by his quick confident manor and pointed questions, this was not a medical assistant or nurse or fellow or assistant. This doctor was the main attending pathologist. He was going to do the procedure himself. He was even going to look at the slides himself. There would be no messing around.

There must be some kind of mix up, I thought. I am not a movie star or a sports hero. I am not the Google president or part of Trump’s new cabinet. Why this red carpet service? Then it dawned on me. It must be the anxiety flag in the computer. I should have gotten anxious long ago!

He tried to cover up my red-flag *anxiety* status. “I’m sorry you are missing the whole parade of residents and medical students,” he mentioned casually. “I had too much on my plate today to wait for the whole team. I just figured I could get this done faster by myself.” Nice try, but I saw right through it.

With a quick pinch and burn, he numbed the lumpy skin under my chin. Even though the process was similar to my previous bone biopsies – numb and poke – I did not experience the same hand-clenching fear. I guess knew he was going into soft tissue, I somehow sensed he was far from my windpipe, I instinctively understood there were no nerves in my lymph area that would send an electric shock up my spine. It is interesting the carnal knowledge we have of our bodies, even in the face of a new experience.

In fact, as he gently scraped cells off the inside surface of my swollen node, triggering a mild burning sensation, my greatest feeling was relief. “Yes!” I wanted to shout. “That’s it! That is exactly the spot that is bothering me! See? It is not my imagination. There is a large lump there. There is pressure. I am not crazy.” But don’t worry, I stayed still and quiet and let him get a good sample.

“It is definitely swollen, and it is definitely your lymph node,” said Dr. Long. This was an affirmation I so desperately needed. I was beginning to like this guy. (Score one point.)

He extracted the needle, and pushed the drops of fluid from the syringe onto one of the many waiting slides, each with a hand-written label featuring my name. Hand-written – can you believe it? You mean some doctors still write their own labels? Just my style. (Score two points.)

He blew quickly on the first slide to dry the setting liquid, and his eyes began to dance. I could see this next part was why he liked his job, wielding his magic microscope, solving mysteries.  “I am going to run into the other room for a moment and take a look. I want to see what we have here,” he said excitedly. He looked like he was really going to run. Without giving me time to ask any questions, he pressed a clean swab onto the fresh puncture on my neck. “Here, hold this firmly for a few minutes until I get back.” Wow, so expedient. So interested in my case. No gloves, no masks, no sterile procedures with back-checks on printed labels, no unnecessary personnel. I mean, why have a nurse when you can put the patient to work?   (Score three points.)

So there I sat, rigidly relining in the dentist chair, alone, holding my own freshly punctured neck to keep it from bleeding profusely, while an enthusiastic pathologist was peering at my cells, looking for cancer, determining my future. With nothing else to do, my mind started to wander. What if he never came back? When should I start to worry? What if he tripped in the hall and passed out? Did anyone else know I was in here? Could I ease the pressure on the swab to get out of the chair or would I bleed to death? What in the world was he seeing back there?!! It was a very long few minutes.

Finally he burst back into the room. “Well, your lymph tissue looks pretty good. No obvious signs of cancer, no obvious signs of infection.”

I guess I should have been ecstatic, but I was only mildly pleased. I was relieved that he came back, that I finally had an answer, that I could take the swab off my neck. But I wasn’t tremendously elated by the results. I suppose I didn’t expect anything malignant. After all, every doctor’s gut feeling had been the swelling wasn’t caused by anything serious. But it didn’t change the fact that my lymph node was still unusually swollen. And he didn’t know why and I didn’t know why. And he agreed, it was weird.

“Could it be allergies?” I mused.

“It looks a little big too be allergies, but you are post bone-marrow transplant,” he admitted. “Anything is possible.”

I sat for a few more minutes while he took three additional samples, “to be thorough,” he explained, and then I was released with a promise of final results by Monday. “See you around town,” he called, because it turned out he was also a Santa Cruz County resident, who frequented my local Kelly’s Bakery with his college-age daughter. (Score 4 points.)

Ironically, only several hundred yards away, while I was getting poked for this Lymphoma screening (checking for Cali’s disease), Cali was under anesthesia, getting a bone marrow transplant, for leukemia screening (checking for my disease). I joined Mike in Cali’s recovery room as she was waking. Cali and I compared band-aids. We split an orange popsicle. We sang along to Frozen. Like mother, like daughter.

And similar to my reaction to my results, when her doctor called the following week, and left an excited message on my voicemail – no malignant cells in Cali’s bone marrow! – I was happy, but not ecstatic. Of course she didn’t have my disease. No one thought she would.

I tried to imagine how I would have felt if the results from the two tests were different. What if my cancer had metastasized to my lymph node, morphing into Cali’s disease? What if Cali’s cancer had spread into her marrow, sliding from a lymphoma to a more serious leukemia? Our family’s world would have been upside down. The doctors would have been shocked. Our family would have become a research project. Everyone would have shifted back into survival mode, an adrenaline-fueled, fight-or-flight superpower high. The rollercoaster thrill would have continued.

Calamity is a kind of high. Generally not the kind of high we think of seeking, but a high, nonetheless. I am happy to say we are coming down off that high. But coming down, integrating into regular life, is actually a blittle rough. The days feel slow, normal. Secular concerns – what to have for dinner, who gets the pink dress, which beach to surf, what milk to buy – are at once comforting and insanely trivial.

IMG_0664
Back home!

Cali is back in her house, but struggles with jumping back into her life as it was. The short walk to her friends’ house three doors away is exhausting; she wants to be carried home. She visits her old school; after one hour she hides tears of fatigue. “Please take me home, Mama. I am too tired.” We still have many appointments. We have blood draws with incompetent Santa Cruz nurses who have trouble accessing her port, and instead leave her bruised; we have to drive Stanford anyway. We have surprise visits to Dominican emergency, where a kid with serious cancer is treated more like a liability then a patient; they would rather I administer her medications, I make decisions about fluids and pain meds. Luckily the acute pain subsides on its own, and we are released only hours later.

In my house, I am Mom, but there are still a lot of question about what that means these days. Will I make dinners now? Are my rules real? Will I do bedtime? Will I pick Summer and Faith up at school? It still seems at any moment I might get whisked away into hospital world again. I am not dependable. It is hard for all of us to let our guards down.

Everywhere we go, smiling faces are so happy to see us. And we are so happy to regular people. They always ask, “How are you? How is Cali?” It is a tricky question. How much do they want to know? In the big picture, we are great. We are home. Our cancers are gone. We are sliding down the backside of the mountain. It is wonderful. It is what everyone prayed for.

But physically, it is not all back to normal. My eyes are super red and ichy and dry. I seem to always be sick. Or maybe it is allergies. My nose is bleeding every morning and my lips are always burning. My lymph node is still swollen. I am not sure anyone wants to know all this.

Cali can walk, but she also can’t. She holds onto furniture like she is walking on a boat out at sea. She falls frequently, she hurts in the afternoon, her ankles swell at night. There is no way she can run or jump, and kids do a lot of running and jumping. Being left out of this kind of play is paining her greatly. She rarely eats more than a few bites at meal times, and a morning vomit is still quite common.

As a family, there are adjustments. We are together again, there are hugs and kisses and lots of talking, talking over one another. We have to learn how to listen again. There is fear that Mom or Cali will leave again. We have to learn to trust again. It is hard to find activities we can all enjoy together. Cali cannot walk very far, Mom cannot be in the sun too long, Reef and Mike need to move, the twins need their three-year-old freedom to create and destroy. But our need to be together supercedes all. We find ways to connect. Family movies on the couch, short beach excursions, easy board games, drive-up picnics. Bit by bit we rebuild and redefine our family. Recovery is not a walk-in experience either;  recovery, I am finding, is many layers deep.

One night I am reading stories to Faith and Summer on the big stuffed bear in their room. Faith curls up in my lap with her thumb in her mouth. Summer pets my shoulder. “Mommy?” Faith asks suddenly in the middle of the ballerina story. “What kind of day is tomorrow?”

“Well, tomorrow is Friday,” I tell her, not quite sure of what she is asking.

“Who is coming?” she asks, trying again.

“Tomorrow is a Mommy day,” I tell her.

“Will you be here when I wake up and when I go to sleep?” she asks, making sure she understands.

“Yes, Faith, I will be here.”

“And the next day and the next day and the next day?” she asks.

“And the day after that,” I tell her.

“And always and forever?” she asks.

“And always and forever,” I tell her, hoping it’s true.

“Mommy?”

“Yes, Faith?”

“You took a really, really long time to come home.”