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.