Foundation ― a.k.a. The Essentials

“It is only with the heart that one can see rightly; what is essential is invisible to the eye.” 

― Antoine de Saint-Exupery, The Little Prince

It's a conundrum, this task of keeping people up to date.  My last post generated a number of mixed reactions along with the collective relief that James has been cleared from the very real threat of a chemo-induced malignancy.  One friend expressed some impatience at the story I shared, understandably admitting "I just wanted to know if James was okay!"  The narrative before the main update, while potentially entertaining, was an unwarranted distraction to her - that was the implication, and I can see her point.  Hell knows I'd like the luxury of skipping to the bottom too.  I'd like to know right now if my son is ultimately going to be okay.  With every new chemo cycle, with every unexpected setback, with every blood test, every injection, every ingestion ... I'm as efficient as I am emotional, and frankly I want to know right this minute what I truly need to worry about. 

Flash back to that interminable first month of sleepless nights by the hospital bed, to every transfusion, to every CBC number, to every spinal tap and nightly dose even now and cut the shit, doctors - just tell me if he's going to be okay.  Spare me the agony of knowing how untenable this all can be.

No sooner had I hit submit after the drama surrounding our last OR visit than more drama occurred.  James was Okay with-a-capital-O, and then he wasn't.  And now he is again.  That's an emerging pattern here, and I don't know why I expected any different.  But it's almost 8 weeks since I've given any update, the time it has taken for me to confront this forum again with any coherent thought that seems worth sharing.  And all is well.  That's the skip-to-the-bottom news.  He is doing great - truly!  His blood counts are "gorgeous" and he looks and mostly acts like a happy, healthy, active young boy.  If that is what you tuned in to find out, you are released, and with no judgement from me whatsoever, you can return to the plethora of other things that merit your attention.  

On my bedside table now is a paperback tome by the journalist Andrew Solomon called The Noonday Demon.  It is a masterpiece, and the best example I know of an author cutting themselves open to the core in a way that helps others learn, grow, feel, thrive.  In one early chapter he makes the not-uncommon point that there is a significant cultural difference when human beings ask each other the question "How are you?"  In the US, it is a pleasantry, rarely intended to solicit any response other than "Fine! Great! Couldn't be better!" no matter what the "truth."  In Europe, people assume that when you ask that question, you actually want to know.  There is patience for - and attention to - a more complex answer.

So if you want to read on ... if you want to know how James "is" beyond the medically acute, how Grace "is" beyond the role of warrior sister, how we all "are" not quite yet halfway through this odyssey, despite embracing our new normal as much as we can ... thank you.  Whatever the "how are you" question means to you, and whatever answer you are hoping for, thank you for having the curiosity, the empathy, the added layer of humanity to want to understand more about what this is actually like.  Welcome.  Read on.

Here is what transpired so soon after my last post.  I was flooded with relief that the news from the urologist from the operating room was good, thrilled (it's all relative, right?) that the blood in James's urine was not a sign of a hole in his stomach lining or another potentially fatal side effect of chemotherapy.  Newly fortified to keep moving forward in our summit of what seems like an interminably jagged mountain of treatment, with weather both fair and wicked at the whim of a fickle Mother Nature.  We are one third of the way to the top.  I, for one, plan to stay at the top of the mountain once we get there and live from that place.  We have two more years to figure out the vision from the summit.

I posted my last journal entry on that tense October day and shut down my computer as James started to stir in the recovery room, opening his eyes and coughing, eventually sitting up and wincing at me through groggy eyes.  He collapsed weakly back down to the pillow.  I saw his brain begin to register the beeping of the machines hooked up to his chest, noticing the strange yet familiar colored wires attached to him as if he were his very own bomb.  Anger, desperation, and pain flitted across his sweaty face and he started yelling for food - by then he was on day 2 of his monthly steroid pulse, and not allowed any food or water from the night before until after his procedure was complete.  Any parent who has been there knows what a particular hell this spells for all involved.  I smiled as I smoothed his hair, kissed his cheek and held up a Ziploc of trusty cheddar goldfish (ode to that glorious orange cracker!) and applesauce in abundance. 

The nurse brought the requisite popsicle to soothe his throat, sore and scratchy from the OR breathing tube, and started telling me what to expect next.  It's become almost funny to me now, this ritual - at least 3 well-meaning medical personnel reciting each medication James is on at least four times per hospital visit, talking me through the endless consent forms for the anesthesia, asking if Child Life could help him pick a smell for his breathing mask despite my protests that he never ever ever wants one and please don't send them in here again, it just upsets him and for the love of god please don't tell him that you're only going to "put him to sleep" since every time he thinks that means you are going to kill him the way a vet would a dog.  As if I haven't been in that very seat next to his hospital bed a hundred times by now.  But I don't act cynical, nor impatient - it is no one's fault.  They are doing the best they can.  And then they scroll down, and down and down their computer screen and inevitably say "oh, wow ... it looks like you guys have been here a lot, you probably know the drill."  Yup.  We do.  We get the discharge nod, I wheel him out of the hospital myself rather than wait the 5-which-becomes-35 minutes for the transport service, and we burst out of the hospital doors toward the parking lot.  Released.

James complains of being cold as I lift him into the car.  I grab his favorite elephant-print fleece blanket from the passenger's seat, silently congratulating myself on remembering to bring that beloved item for a comfortable car ride home, and tuck him in around his carseat, kissing him lovingly on the forehead to make sure he isn't feverish. He seems fine, though still out of it from the anesthesia.

***

I thought we were done with the part where he almost dies in my arms.  What a cruel irony to have that experience remain so close a prospect.  And yet, any of us who love deeply bears that risk, I guess.  Human life is inherently fragile.  But it was hard for me to walk the mental gangplank back to those emotions, that too-familiar trauma, that terrifying sense of a life I am responsible for hanging in the balance.  When does my breathing get to return to a normal place, rather than this chronic flutter of the lungs?  

The ride home was 25 minutes on an open highway.  My own breathing slowed as I absorbed the relief of the “all clear” verdict by the urologist.  Another hurdle overcome.  There is nothing like the relief from a chronic intense anxiety to help you realize how much of a grip it has had on you before it subsides.  I switch the rear view mirror down to peek at James, his eyes softly closed in his carseat and his body almost swaddled in the fleece around him – visions of him as a tender newborn surge into my brain.  The fragility and the promise of life blend together in a sharp paradox as I focus back on the road.

I keep flipping the mirror up to check on him as he seems to wake and drift off again, the singular blue of the post-surgery popsicle still staining his lips.  I'm anticipating an afternoon of caregiving, maternal tender loving care as I warm him soup and rub his tummy, nursing him back to his 6-year-old self again.  His eyes are closed.  Pulling into the driveway, I wonder if I should open the garage door, ease him gently out of his carseat and bring him straight up to his bed.  Such a familiar ritual from when my restless toddlers would finally succumb to a hushed sleep from the rhythm and hum of the car's vibrations.  Or should I help him wake up, give him real food, ensure that he doesn’t sleep away the afternoon and doom his exhausted parents to yet another 2am bedtime?

As I unbuckle James, his eyes flutter and he stammers weakly, “Mama, I’m …”  and then “M…m…m…mama I’m c…c…cold.”  His cheeks are flushed despite his blue lips, and I feel his warm forehead and carry him up to our bed, pulling the covers over him and calmly heading to the bathroom to fetch the trusted thermometer.  We are over the fever scares, are we not?  Even a fever of 101 is no longer cause for panic now that his port is out - what luxury.  And his temp had been normal 30 minutes prior when we left the hospital.  But as I put the Turbo Thermascan 2582 Forehead Supersonic instrument to his forehead and hear the loud beep to indicate the reading is ready, I assume the damn thing must be on the fritz.  I scan it again as he barely stirs – same result. 104 degrees.  I put the thermometer to my own head.  98.2.  Okay.  Maybe this part is standard after this particular operation and they didn’t tell me.  Let’s call the number on the discharge papers and find out.  Let’s call his oncologist’s fever hotline, still on speed dial, and get some input here.  Let’s call Charlie and figure out What The Hell To Do.

No one is answering.  Charlie is on call tending to his own patients in dire straits.  The nurse listed on the discharge paper doesn’t answer.  The pediatric oncology hotline finally picks up after the 3rd attempt.  I explain the situation to the answering service and they promise to have the on-call oncologist phone me back right away.  I hang up and pull the covers off of James, who starts screaming even in his weakened state, “Noooooo, I’m cold, no mommy, I’m so cold!!!”  I use my best pretend soothing voice.  I have it mastered now.

Ten minutes later.  No call back yet.  Thermometer time again, three readings of 104.6.  Damn it!  Someone, anyone, call me back!  I should get in the car and drive right back to UCSF - or should I immerse him in an ice cold bath before it’s too late?  What is the fever threshold at which brain damage occurs in a child?  What about death?  Do I have the time and wherewithal to Google that on my iPhone as I wait for the goddamn oncologist to dial me back?  I am furious and terrified and dial the hotline again.  As the thermometer reaches 105 I demand to be put through to someone, anyone who can tell me what to do.  The frightened nurse on the other end tells me to go to the nearest ER immediately.

James starts shivering, then shaking, not quite convulsing as I try to carry him down the stairs without falling, telling him "it will be okay baby, I know you're cold, it will be okay."  Do I contort his body to buckle him in?  Is it worth the 30 seconds to try to get that clasp around his burning body?  At what point does protection become relative? *** The nearest ER is an ordeal in and of itself.  It is not a pediatric hospital, but I know exactly what to say despite my rising panic.  I pull up to the curb, hoist James into my arms and barge through the open doors.  As the intake nurse starts asking me for my insurance information I tell her we need to get my son hooked up to an IV right away and ignore her protests as I charge into the ward and yell for help.  The young ER doctor looks at me with James in my arms and springs into action. People talk about an out-of-body experience in times of crisis.  That's how I remember it now.  I was watching myself from the ceiling of that hospital room, a bear of a mother calmly but fiercely giving orders to the 3 medical personnel trying to help, sharing the pertinent information as they go through their list of questions but telling them to get an IV in right away with antibiotics to bring his fever under control.  The nurse starts to look for a vein in his right arm and I tell her exactly where to find the strongest one on the left that hasn't been tapped for at least 5 weeks, and not to hesitate as she wraps the tourniquet, to hold him steady despite his inevitable protests.  I cringe as she murmurs to him that he'll just feel a little pinch and at her words he immediately starts flailing and thrashing, terrified of yet more needles, and she tries and fumbles again as he screams at her to leave him alone.  I tell her again firmly but calmly not to engage, that I will soothe him but just to find the vein and do it as there is no reasoning with this child, and after many more failed attempts I finally get on top of him to pin him down and scream at her to just do it as she slips the IV in and they finally start the antibiotics.  There is a palpable relief from everyone. I beg the ER doc to answer the UCSF attending oncologist's call (finally!) right away for next steps given the complicated medical history and the nuances of the procedure performed an hour prior.  I rock James in my arms as my own heartbeat slows, as the liquid drips into his veins, as time seems to freeze in place.  I watch the two of us from my perch on the ceiling, mother and son, a time-bound ritual of nurturance, protection, peace in turmoil, the giving of life. Charlie arrives on the scene, and his steadfast presence calms me.  He can be in charge now, in his element as both father and doctor.  An ambulance takes us back to UCSF once James is stabilized.  Two more days of hell.  Sleepless nights, more needles, medical games of Operator between the shifting nurses and on-call MDs who ask me the same questions over and over and over.  More tests run, more specialists called, more conferrals to determine that yes, this was just a reaction to the procedure, some bacteria likely got into his urinary tract and all will work out now that the crisis had been averted.  And oh sorry we forgot to order his oral chemo dose and you can't give him any medications not ordered through the inpatient system so I guess he'll have to miss his chemo tonight even though your oncologists say never ever ever miss a dose so let's look the other way because you are smart enough to have brought it with you just in case.  I slip him his steroids, 6MP, septra per usual.  The young nurse winks at me as she says conspiratorially, "I could get fired but I know you have to.  It's the hospital's mistake."  I feel utterly alone. The air in the hospital is thick with ash, as the horrifying inferno of the Northern California wildfires rages close to home as a backdrop.  Neither of us can breathe, and James can't stop coughing.  The doctors finally agree to release him before the results of yet another test so that I can get him home where the air is clearer, where we both can breathe easier.  I am desperate to escape the hospital room.  Loading him into the car again, the ride home this time feels almost like deja-vu except for how eerie everything seems.  Through the apocalyptic grey-orange air of the fire, there is a strange foreboding silence except for the screaming of my son.  As I insist on buckling him in, he strikes my face. It is now Day 5 of the steroid burst, he is angry and exhausted and the iPad battery is out and my own resolve is waning.  I maneuver onto the highway and I finally lose it.  As he kicks the back of my seat, screams at me, rages from his carseat, I break.  I can't hold it in, I can't keep pretending to be strong in the face of this hell, keep stifling the pain of the raw nerve being struck again and again and again.  I weep as I drive on.  James can't see my face, but I can't do anything to hide the sound - a keening, if you will.  Something in me just finally broke open. At what point do we let our children see how vulnerable we ourselves are in this cruel world?  That sometimes it all feels like too much for our own souls to bear?  I never thought I would subject him to my own grief, my own rage, my own fear, yet somehow I forgive myself, over and over, with each heaving of my chest.  I do not know what he noticed, what he thought.  What he remembers now about that day. *** As James recovered, regaining enough strength over the next few days to go back to school and I started to slow my fast pulse, I had a strange yet powerful impulse to start nesting again in my own home.  It was the nesting not of a new wife, nor a new mother, but of a midlife reckoning of sorts - I purged the excess clothes, the forgotten toys, the expired items in the pantry.  Books long unopened.  Dishes never used.  A merged CD collection of a technological yesteryear.  After a full 2 days of ravaging the insides of the house to the bare-boned essentials, asking the weekly cleaners to stay a little longer to reach those crumbed crevasses and scrub the nether-regions of each room, I turn an eye outside, to the perimeter of our small yard.  We have a high fence to mark our unremarkable patch of dirt in this remarkable valley, and since we moved in the wooden shelves built in to the side of the fence outside the kitchen door have been perennially damp.   I grab my drill and pull the shelves off, inspired to hang some cool framed Do-It-Yourself succulent concoction on the fence.  Instead I notice how rotted the wood is, with strange droppings at the bottom that the shelves had hidden.  A quick Google search confirms termites.  A longer Google search confirms that I should be terrified that they are eating my house down this very moment.  I call Terminix, reschedule some work meetings and have an inspector scour the bowels of our home.  Luckily, no signs of termite damage inside the dwelling, but I take her to the basement to check our foundation, and as she shines a flashlight up into the crawl space, she says "no termite damage, but it's possible that over there you have some fungus in your sub-floor.  You'll want to get that checked out." She leaves and I grab my own flashlight and stepladder and hoist myself up into the netherlands of our basement.  I crawl through the spiderwebs and past beetle carcasses and slide my body underneath the insulated ducts, finally reaching the spot to determine the source of the fungus.  I find wet wood, dry rot, falling plaster, the source of which it has taken several experts nearly two months to discover and repair (and luckily nothing related to any potential causes of leukemia - of course I checked).  It is a homeowner's headache the likes of which would normally send my stress levels skyrocketing.  But I felt a certain calm instead.  The metaphor is not lost on me - when you are called to explore the core of what you are made of, to shine a light into the darker corners and crawl through the muck and face the cracks and take stock of the damage hidden within those depths, soldier on.  Strengthen the foundation.  Rebuild the baseboards.  Repair the leaking pipes, and rise up again.  We are all stronger than we know.  We have the raw materials we need to make ourselves stronger every day. And how are you?