Full Circle — a.k.a. Sand Dollars and Cents

And you? When will you begin that long journey into yourself?                                                                              — Rumi The New Year is upon us. We have all made it, earth come full circle, another complete orbit around the sun. Many a moon has come and gone since I last posted: blood moons, blue moons, supermoons, eclipses, and now a "super blood wolf moon" to look forward to in January. Does anyone else think we've jumped the shark here with this terminology?  I've finally circled back to this forum, here to reckon with the blank page. Despite some writer's block (a.k.a willful denial laced with a strong dose of inertia), I couldn't let a full year go by without some sort of marker, some words on the page in 2018 to refer back to for the sake of posterity. That said, I don't know where to start. I have many unwritten journal entries knocking around in my head, and fragments of each one in random notes somewhere on my laptop, on post-it notes on my desk, lurking in the folds of my white matter as well as in the pages of countless notebooks scattered around the house. As I begin to write this entry now, I fear it will result in a jumble of words on a page without much form or shape. But this year has been nothing if not messy and unpredictable, so perhaps you'll bear with me as I flex my writing muscles again. Life picked up again this year in some ersatsz version of Normal, and it has moved faaaasssstt. For me, returning to this page is like taking a deep breath of fresh, strikingly cold air. There’s a slight sharp pain as you draw the breath into your lungs, yet it’s oddly invigorating. And an apt metaphor in a broader sense: I often go about my day and realize at a certain point how shallow my breathing has been the whole time. We live so much of our lives at a breathless pace: the moment-to-moment pressures of hyperconnected professional lives, the real-time demands of modern parenting, the endless administravia of just keeping up, the whack-a-mole nature of so much of our daily existence sped up by technology. It is not that I can't stop the whirlwind to catch my breath, it just takes time and focus to realize I haven't in awhile. And far too often, even when I realize I need to pause and breathe, I pick up my cell phone instead to check my goddamn newsfeed. As the famous monk Thich Nhat Hanh told me and a crowd of silent others at a talk at Google in 2012, referring to cell phones and the various other constant distractions around us:  it has never been easier to run away from yourself.  The long and the short of it: James is doing great, thriving despite his daily dose of chemo, his weekly dose of a complimentary chemo drug, his monthly chemo infusion which also kicks off a soul-crushing 5-day steroid pulse, and his quarterly CBC and spinal tap for yet another chemotherapy agent. At 6:30pm I’m a pharmacist. This is the "easy" regimen we're on now. Despite occasional scares, it is a new normal, and at times hard to remember it was any different. And yet even the current baseline takes a toll, something I need to acknowledge to generate more self-compassion. A close friend's recent text helped jar me into that sorely needed mindset. Another warrior mother, she had been reminded by Facebook’s timeline of her own son’s trip to a hematology appointment and seeing the children there going though chemo, and posting on “what a sobering and perspective-shifting” experience it was. And now, through helping support us and bearing witness to our journey, she knows what it really means to be a child and a family going through chemo. She said it made her heart ache for me, for Charlie, for Grace, for James – “you’ve been through the shittiest of the shitty and I know it wasn’t and isn’t easy … yet your ability to keep living and having fun is remarkable – thank you for not shrinking or hiding away when it would have been easy to. I just wanted to acknowledge your struggle and the beautiful impact you’ve had in the midst of it all.” Wow. I haven’t received a more meaningful text in my life. It enabled me to do two things immediately – 1) give myself permission to cry again, and to acknowledge to myself that I’m by no means perfect but I’m still doing a bang up job of keeping my family whole during a raging battle. If things do go south – perish the thought – I certainly won't be the first mother to have lost a child. But Jenn's text: it was validation, affirmation that This is Fucking Hard. Still. It Still is. Hard. Just because there may be someone having an even harder time, an even worse diagnosis, does not negate that what we are navigating is just about as painful a human experience as one can have. We are not besieged by violence, we have not lost children or spouses in a war-ravaged country, we have not had a son lynched or shot due to a senseless hate crime. But we’re rafting our own river of pain, and we deserve to allow ourselves the grief and desperation we feel. I have to remind myself that it’s not self-indulgent simply because there are those who are worse off. But it’s funny – the second thing reading her words did was remind me of what a compartmentalized life I’m forced to live right now, given all the roles I play (see aforementioned job of 6:30pm pharmacist ... currently accepting applications if anyone wants to fill in). The full circle of my wheel of life is sliced into various shapes and sizes and parts depending on the given moment, the task at hand. And thus the simple question of "How are you?" carries the same import as "Who ARE you?" in an existential sense. It’s a question too complex to answer. I fumble when I try, as authenticity is a core value of mine. But so is sparing others the bitter details. I notice circles in everything these days. James and Grace and I collected oodles of sand dollars on the beach one early spring morning at Fort Funston – full circles of chalky white patterned shells, James proudly counting out over one hundred in his haul. I grudgingly allowed him to keep them despite a sense that we were robbing the ocean of something elemental. We bleached them at home in the metallic garage sink, washing out the sand and grit and laying them outside in the sun to dry. I suggested making lemonade and cookies and setting up a lemonade stand that afternoon. James said, “MOM!!!  HOW about a SAND DOLLAR stand????” and ran to get markers and paper to make the signs. I had another moral reckoning as I suggested we give them away as gifts to strangers on the street, but he was crestfallen, saying “But Mommy, I worked SO HARD to collect those. Pleeeeeaaase???” Okay, my son – and your misspelled signs are to die for. We made a plan to do it the next morning, a Sunday. The ones he really wanted to keep were $500 each and the others were 25 cents, unless they had an additional shell on them or a really unique color or marking, in which case they were 50 cents.

We set up outside of a church on a nearby corner, and frankly he made a killing. Children came flocking after mass let out, running up to us and then circling back to beg their parents for a quarter, James the master of ceremonies as he doled out his prized collection. On the walk back home, he said “You know, mom, I think the last time I saw a sand dollar was on the beach in Rhode Island, that day I had to go to the hospital for a long time.”  I asked carefully, “I bet you’re right, honey. What else do you remember about that day?” and we had a talk that still makes my heart ache, and which I can’t yet put to the page. He decided he wanted to donate the money he had made to the cancer hospital to help other kids going through what he had to endure. And then his earnest tone turned to the bright side, the silver lining, as he said in a very matter-of-fact way, "But Mommy, if I hadn't had cancer, then I'd still have curly hair, and that would be Just Awful." He was stone cold serious. I giggled in spite of my aching heart, and we trudged up the hill home again.

***

Did you know that according to Wikipedia, “Sand dollars, like all members of the order Clypeasteroida, possess a rigid skeleton known as a test.” Early in the year we got a call from the pediatric neurocognitive center at UCSF, saying that it was now a standard recommendation that all children enduring chemotherapy go through a battery of neurological tests to determine before and after-effects of the various treatment regime. Okay … we set a date and James spent a full Friday with the psychologist, filling out bubble after circular bubble of standardized test answers in No. 2 pencil. We debriefed the results with her a week later, and she shared that there was some new data suggesting that intrathecal methotrexate (the Spinal Tap Surprise on the menu) can affect executive functioning starting around high school in some kids, so that it was important to determine a baseline and plan for additional support early in high school to offset any potential effects. Luckily James’s baseline scores were “quite high vs. comparative norms, so we have a lot of cushion to work with.” Charlie felt relieved, but I left the consultation sobbing to go straight down to his infusion in clinic and discovered that his oncologists, the top experts in the nation, had no idea about this long-term side effect. Their focus, of course, is “survival.” Their concerns are different from the PhD down the hall. And that neurocognitive threat is the shit that could be the difference between a relapse in the bone marrow at age 12 and a full cure.

But I started pressing on why he has to take this drug a full 3 years, vs. the girls who only take it for 2, and my mind went into sort of a fugue state as I heard the old oncologist saying not to worry, radiation was the real problem and now these drugs are almost symptom-free compared to the older stuff they had to use 20 years ago. Since the current regimen started, she's “seen children do so well, some of them have even become nurses!”

In the very same moment that I register how much worse that statement makes me feel, I realize what a bitch I am. Why would the concept of my son becoming a nurse make my eyes well up with tears? Why, if he is lucky enough to survive this, is whatever future he may have ahead of him somehow not good enough?  And I realize I am grieving the whole version of him, the pure gold potential of him before this diagnosis, the uncompromised life of this amazing child. That maternal promise is gone, drained away along with the high color in his cheeks in the weeks before we knew. But isn’t it so with every child?  You lose your parental naiveté at the same time they start to lose their precious childhood innocence, and you learn to accept the whole of them nonetheless. He will be whole and then some, his circle wider than even before.

But the hardest thing about this past year has been on ongoing dilemma Charlie and I have faced regarding James’s treatment – namely, the duration before we stop his chemotherapy. In girls, the regimen is "only" 2 years plus 2 months. In boys, it is a year longer, since boys typically have a worse prognosis overall than girls, and since wily leukemic cells can at times hide out in the testes. That said, after our meeting with the the PhD, I pored through the data and talked to numerous experts about the risk benefit analysis to warrant the gendered difference in treatment duration. I don’t want my son on this shit – life-saving as it may be – any longer than is absolutely necessary. And a year less of treatment would mean that we could stop ... now. We could STOP now. We could have our lives back, get him off of these drugs, move on and pray to any gods who will listen that he not relapse in the next 10 years, at which point he is considered “cured.”

I will spare you the details, but let’s just say that I have spent the last 6 months torn in two trying to determine how to do the best thing for my child. I am still torn. Charlie is more conservative than I am on this front, more inclined to do the full 3 years and everything we can to guard against relapse. I am concerned with the secondary malignancies that can result from chemo later in life, a stomach cancer that could kill him at 17 caused by the very chemo saving his life now. I don’t care about the executive functioning, I just want him to live and thrive as best he can. It is still possible that no matter what, he won’t survive this. I have waves of anticipatory grief that sometimes overwhelm me at night, or watching him on a soccer field, or dropping him off at school as he waves a hurried yet smiling good-bye. I control them, allowing that first acrid sting to fill my nostrils, the watering behind the eyes to pool for a split second, and drive on. Relapse is no joke, treatment is even more brutal than this first time around, and survival rates for boys who relapse go down to less than 50% vs. the 92% chance of survival James has now. As for the duration of chemo, and the risk benefit analysis of keeping boys on a year longer? No one knows. The current experts all acknowledge it was an arbitrary decision made by the pediatric oncologists of lore 20 years ago, and now the experts differ. One leading expert at CHOP, the former chair of the national Children’s Oncology Group (COG) which sets the pediatric cancer treatment protocol for almost all of the hospitals in the US, says it’s “unconscionable” to keep boys on chemo for 3 years vs. 2. The other leading expert who happens to be James’s pediatric oncologist and the CURRENT chair of COG, says we just don’t know and we shouldn’t take the risk given how high these stakes are. How to reconcile these two perspectives? We get a highly coveted audience with both oncologists. The first tells us, shattering my resolve, “unconscionable or not, he’s doing great ... what if you stopped treatment at 2 years and he relapses 6 months later? How would you feel?” And yet we learn from the other that starting tomorrow, January 1st 2019, all boys who come in with the exact same diagnosis and variables as James will be assigned to only a 2-year chemotherapy protocol – the whole damn national protocol is changing. So shouldn’t we stop? I am ecstatic at this news. And then gutted: they don’t recommend we do, even if it is only a .2% chance added risk of relapse, since they just don’t know how this new protocol will do. It is one thing to spread the risk out across an entire national cohort of boys, and if relapse rates start increasing they will shift back immediately. But when they talk about James, they say "but he is just one child" - how can you justify the unknown, the added risk when you telescope in to one particular child? vs. an entire "population?" It is an emotionally fraught motherfucking mindfuck, if you'll pardon the French. I do. We took a trip to France in October as a family, Charlie and the kids joining me the week before I had to facilitate a 4-day workshop for a new client in Paris. Ooh la la. We had an incredible time, a full family adventure, and Charlie the hero flew all the way back with after I dropped them off at the Cote d’Azur airport at the crack of dawn on the day of my birthday. I watched the sun rise while sitting on the soft stones of the beach in Nice, lines of white fully encircling so many of these rocks and turning them into what we call “wishing stones” in our family. I made a few birthday wishes as I tossed some into the gentle ocean, reflecting on the trip, feeling so glad we had taken the plunge and just done it. I flew to Paris that afternoon and went into turbo work mode, both grandmothers flying out to San Francisco to cover me with the kids while I was gone. Two days into it, as I was still up at midnight prepping for a major presentation I had to deliver the next morning, I saw an email come in from Charlie “not wanting to worry me.”  James had had a blood test that afternoon in anticipation of his later chemo and his counts were disturbingly low. Most likely just a virus, but potentially a result of too much chemo, or potentially – a sign of relapse. They were holding the chemo, recommending we pull him from school since his immunity was far too low, and that we retest 4 days later to see if they came up on their own again. There was nothing to do but wait.

Of course I wanted to book the next flight home. Of course the terror I felt was as intense as one can feel. I called Charlie and we talked it through, his voice and words calm and reassuring as always. They thought it was unlikely to be a relapse, he wasn’t showing any other signs, he was cozy and comfy home with his Nina, and I shouldn’t screw up this client gig to come home early when there was nothing to do. I finally acquiesced, and spent the whole night sobbing. I took a long, scalding hot shower when the sun came up, put on my best work outfit and a lot of makeup, and rocked the presentation. I flew home with hands shaking and a day later his counts were back up. Safe again.

So – compartmentalizing. We all do it. A close friend just shared that she got a call back to repeat a murky mammogram and had to steel herself for weeks against the terror of … what if? And yet she rocked the days as she always does while waiting for the relief of the follow up results, despite the un-knowing. I compartmentalize daily, as I put on my earrings and the good shoes and grab my laptop and walk into a room full of executives to deliver a presentation that I know I landed, aware that at any moment I could get a call that James is having leg pain, that he is nauseous again, that a tough kid kicked him in the stomach at the playground for being “sick”. I like the professional version of myself as much as I like the me who snuggles with both my son and daughter at night during bedtime, who makes silly jokes at the dinner table, who will go psycho mama bear to do anything for my children to protect them even if it means forsaking all the other roles in my life I enjoy. But the compartmentalization of the heart is harder. How can I ever explain, even to myself, that every time I laugh with my son, a part of me is weeping?

*** Full Circle:  To One I Have Loved It is the pill before I’ve cut it. It is the small round dish I serve it in.  It is the kitchen clock that tell us When It is the pinprick in his skin. It is the ring on my finger I wear to stay Normal. It is the marble we add to the jar. It is the quivering compass I’ve dropped in the river again. It is the marble in the jar: an ersatz marker of Progress, of Time  another routine by now well-known It is the unbroken stripe of quartz in the smooth grey beach stone  I bring home from Nice. Or is it Lyme? It is the answer bubble my son shades in for the Ph.D. to read ... Before, and—After All. It is the small round dot in her framed degree on the wall. Mine too, although we know that's almost, nearly, not quite a lifetime ago. It is the “silver lining!” The “path” we’re on! When? It‘s the piece of the puzzle that does not belong. It is my descent down to madness, and the cold steel rail of the spiral staircase I ascend at his wail— Again. Again. Agon. It is the sweaty curl on his lovely blond head and the sanctuary of your arms. It is the path of your finger as I pray for transcendence. It is our arguments. It is the swollen belly of each pregnant woman I see  and frame as an innocent version of me. It is my anger, barely contained It is a continuous burst of pain —  It is the marble in the jar. It is the face of my many women. It is the small harsh light that exposes the woman quietly weeping in my airplane seat. It is the apple cheeks of the child in the loving "Happy Birthday, treasure girl!" post from my mother. It is the O in MOther. It is the eclipse come round again. It is the man in the moon, too bold. It is the empty oval box that just might hold  the elusive “narrative spine” of my book draft. It is the helium of joy—quick! crystallize to panic  that balloons in my chest It is this jagged boomerang of grief ///// . . . . then the marble in the jar, the raft, the rest. It is his round face on the meds  It is the marble jar It is not the marble jar It is the marble IN the jar It is the marble in the jar. It is the white blood cell gladiator, back from war. It is his spine, that graph, my womb It is the round white cake in the photograph and the orb of your eye as you hold me from across—Oh! the room. It is the marble, in the jar. — Caty James Everett