Icarus — a.k.a. Still Standing

“Knowledge is only a rumor until it lives in the muscle.”

        – Asaro tribe saying, Papua new Guinea

"We are all just walking each other home."

      – Ram Dass

As I start this journal entry, I am waiting for a call from the doctors to tell me the latest numbers from this morning's blood draw.  My nails are bitten to the quick - so much so that they hurt a bit, a dull and distant throb that at least distracts me from the darker corners of my brain.  I shouldn't be nervous.  But his legs hurt again today.  He got a bloody nose last week.  Those circles under his eyes - the ones that haunt my memory of last summer now that we know what caused them - came back yesterday, faint but noticeable.  There is a small bruise on his belly. I do not think the cancer is back.  I cannot think that.  But we are in new territory now, on a "kinder gentler" cycle in our treatment protocol without the daily or weekly trips to the hospital for the blessed poisons saving his life.  The new normal is a nightly regimen, a cocktail of pills of various shapes and sizes that changes daily to fight off any cancerous cells waiting in the wings between the more intense chemo infusions that will lessen to every 4 weeks back at the hospital.  It is suspicious country, as the late memoirist Nina Riggs would say, and I cannot stop my mind from thinking that this gentler cycle has failed us, so soon.  What if the treatment stopped working when we let down our defenses?  What if the powers that be judged my last post far too optimistic and decided I was guilty of hubris, had flown too close to the sun in my naive belief that we had turned a corner, that the thaw was upon us, that all was going to be okay?  Breathe deep, Caty.  Chew your hangnail and breathe. Speaking of my last post - right after I wrote it, I guess the universe decided it wasn’t quite done kicking our asses.  In the wee hours of the morning that we were set to depart Sun Valley, Grace woke us up to say that James was throwing up in his bed.  He had been completely fine and full of energy the night before.  We cleaned him up, dutifully checked his temp which showed no fever, and brought him into our bedroom to doze as we packed up the car in the pitch black to drive to the airport for our 6am flight.  I felt relieved that we would be heading home, close to his oncologists at UCSF if this was something more than a quick GI bug, and we loaded him and Grace into the car in their PJs with a small bowl and some blankets for James.  15 minutes from the airport it became clear that all was not right.  He threw up twice more, unable to keep even water down, and the chills were fierce.  I whipped out the thermometer again and his temp was approaching 100.4, 100.8, 101 degrees – the dreaded number at which point we must rush him to the nearest hospital within 30 minutes.   We called the Fever Line at UCSF pediatric oncology and got through to his doctor right away, who called the hospital in Ketchum Idaho and got everything in place for admission.  I dropped Charlie and Grace off curbside at the airport – we knew Charlie could not put his overworked partners in yet another bind by not showing up to his own ICU and overly full patient load the next day, and there were no later flights with open seats – and I screeched out of the airport to hightail it back to St. Luke’s.  It took both Charlie and me a few beats to realize how terrified we were, and he called from the airport choking back tears as he questioned the decision to leave.  We stayed the course and he mostly kept it together for Grace, who stroked his hair as they sat on the plane. My sister answered the bat phone and met me and James at the hospital at 5:03am - 24 minutes since his fever had hit 101.  She helped me get my hands to stop shaking; both of my siblings know instinctively how to make me feel calmer almost immediately.  I am thinking of building a shrink-ray just to be able to keep them in my pocket when the going gets tough(er).  The staff finally found a vein in James' arm and started the antibiotics that could at least protect him until we could get him back to UCSF to figure out what was wrong.  I booked us on the only flight home from Boise and Carrie drove us white-knuckled all 158 miles there, James passed out and white as a sheet in the back seat. If you were on an airplane that early April day from Boise Idaho to San Francisco, and saw a woman holding her child in her arms, quietly weeping and shaking with fear as she stroked his head - yes, that was me.  If you were the flight attendant who asked what was wrong as I tried to summon an answer, thank you for the extra blanket and the warm squeeze of support.  If you were the gentleman across the aisle who averted his eyes out of indifference, ignorance, or some misguided attempt at respect, well ... okay.  If you were the fellow human being who offered to hold my unconscious son for a minute as I wet a washcloth for his forehead in the off-limits first class bathroom, thank you.  If you were the person who noticed our distress as I struggled to lift him off the airplane upon landing, and helped me carry my son all the way outside to meet Charlie and Grace as they whisked us straight to the hospital, thank you, thank you, a million times over. The next two weeks were straight from hell.  The cultures showed no sign of threatening infection in his chemo port, but we took several more trips to the ER due to continued fevers and scary symptoms.  James recovered a bit, just enough so that they could give him the next dose of chemo almost on schedule two days later complete with a spinal tap, and it laid him flat.  He could not walk for days.  He could not eat.  He could hardly talk.  His skin was an unrecognizable white, his body a shell.  I kept having flashbacks to that first traumatic inpatient month in Boston, a constant striving to manage the terror inside that he. was. just. not. going. to. recover.  He did.  He has.  He is back to baseline.  And the doctor just called me to say this morning's CBC is "gorgeous".  Such a funny, strange word to describe platelet levels and hemoglobin, but I will take it.  I am flooded with relief as I put down the phone and keep breathing.  The cancer is not back.  We are so, so lucky. A flash from earlier this week: James asking me one night as he reluctantly swallowed pill #6 ... “But WHY do I have to take all of these pills, mommy?  WHY do I have to do ALL of this?”  His voice is a plaintive whine, almost a plea – and I don’t have an answer.  He wants one.  He deserves one.  I try to stay with the tactical, explaining again that these pills help his blood stay healthy, that they are better medicines that mean we don't have to go to the hospital so much, but he is asking the deeper question.  The true Why.  It seems a major maternal failing that I cannot give him a satisfactory response.  I mustered a weak, “Sometimes these things just happen, honey.  You didn’t do anything wrong.  But you are getting so much better.  You are taking your medicine and it is helping.  And this whole experience?  All that you have had to go through, and your bravery and courage?  That is going to make you even stronger your whole life long.” At which point he yelled in disbelief and indignation: “You mean this whole cancer just came out of MID-AIR!?!?!!!?  Those cells could come back whenever they want?”  Tears, and wailing, and sobs of "It isn't fair, this just isn't fair."  As my eyes well up and I murmur reassurances, I quietly realize that he has inherited my penchant for malapropisms. No, my son.  It is not fair.  None of this is fair. God, how I wanted to give him an answer.  It feels cruel not to tell him this is all part of some big master plan, or that at least there is a cause and effect he can hang his hat on.  How can I shake his faith in the universe at so tender an age?   There was a student a couple of years ahead of my sister at Princeton named BJ Miller who went out with some friends late one night, partying as college sophomores will.  They climbed on top of the little commuter train next to campus called the Dinky, which I used to take from Princeton Junction to visit my sister.  The student in question, fun-loving and athletic and competitive, reached the top of the Dinky before his friends, and as he stood up in victory eleven thousand volts of electric current surged through the metal watch on his wrist into his body.  Too close to the sun. BJ spent months trapped in a hospital burn unit with three of his limbs amputated, having stared death in the face and wondering what life would hold for him now.  He made a bold decision to embrace it, to see his suffering as an inevitable part of being human rather than a tragic fate rendering him lesser than he had been.  His accident became a catalyst for connection to other people rather than a demarcation of his difference.  After covering them up initially to seem closer to "normal", BJ went back to school with sleek, unadorned prosthetic limbs, cruising around campus in a golf cart with a beloved black Lab as his service dog sidekick.  Apparently many of his female classmates called him "Robo-Babe" because of how handsome and desirable he remained, and how his natural charisma had only deepened after the accident.   The golf cart eventually morphed into a customized motorcycle, the Princeton degree propelled him toward a hard-earned MD, and his zeal for life - and for living - evolved and crystallized.  BJ focused his energies on turning his experience into a force for good, founding and directing the Zen Hospice Center in San Francisco.  He is now a palliative care doctor at UCSF with a huge following and a radical philosophy on how to make death and dying a positive, affirming human experience.  His recent Ted Talk is one of the most widely watched.  He is coming to Sun Valley this summer for the Writers' Conference that Carrie helps run in her masterful way.  I consider BJ one of my heroes: a beacon as I help my own son through his pain, past his scars and beyond his suffering.   BJ's watch from that night still works.  His father wears it now in solidarity.   We all have our stories.  We are still standing.