Sorrow found me when I was young
Sorrow waited, sorrow won
Sorrow they put me on the pill
It's in my honey, it's in my milk
Don't leave my hyper heart alone on the water
Cover me in rag and bone sympathy
'cos I don't wanna get over you
I don't wanna get over you
― The National
We have excellent news today (it's all relative, of course, but we'll take it!). The chemo is working; James is technically "in remission" after completing the grueling induction phase of his treatment, which means that no current cancer cells are present in his bone marrow as far as what the most sensitive flow cytometry indicators can detect. That is the hoped for result for the protocol we are on, and means that while there is still a long road ahead and many more drugs for his body to endure and metabolize over the next 2-3 years, including: a port placement next Monday and an overnight at UCSF Benioff Children's as such, daily/weekly/monthly chemo drugs in various shapes and sizes and modes of delivery, neutropenic fevers with inevitable trips to the ER, and some hospital stays etc., we are closer to knowing the nature of this beast and how it will react to its slayers. Leukemic cancer cells are wily, as I think I have said before - the best way to frame this news for the laymen among us is that while the battle ahead is still a long and challenging one, our strategy is proven in his little body as it stands now and we are winning it thus far. Bravo!
The pace here back at home is starting to emerge, the "new normal" a truism that we are yielding to with equal parts gratitude and grief. The steroids are wearing off - thank GOD - and he is laughing again, more and more recognizable as the James we know and love. The Force around us remains strong, with all of the support and love still on display daily, hourly even as we need it. As I re-engage with a select few colleagues and clients, trying to figure out whom to tell and how much, and as Charlie's work starts to ramp up again with the relentlessness pace inevitable for an ICU doctor, I do start to wonder about what plugging back in actually means, and how much this is an opportunity to reset and claim a life that ironically is less about survival mode and more about what Thoreau would call living deliberately... to "live deep and suck out all the marrow of life." Marrow on the mind these days, I guess you could say.
Now that the more acute medical questions are answered as far as "minimum residual disease" (MDR) and the treatment path ahead is less ambiguous, my mind of course goes to the residual effects on James - less on body but on soul. They say that prolonged hospital stays lead to the equivalent of PTSD in many young patients and family caregivers, and I wonder what he has absorbed from that inpatient experience thus far - effects both reaffirming and traumatizing, I imagine. I watch him now more often than ever when I think he isn't looking, and I notice the ebb and flow of his moods and energy as if studying the barometric pressure that is a weatherman's due. While he is still coming off the steroids at the moment, he is equal parts mischief and laughter as well as withdrawn and contained. For all of the joy in James's personality that I see re-emerging, I catch him looking into the distance every so often looking forlorn, pensive, burdened. It breaks my heart wide open, though I want to be careful not to project adult melancholy into childhood quietude. And the burden he is carrying right now, no matter how much he does or doesn't understand it, is cruel and undeserved for that young and innocent soul.
In this Valley of Silicon and beyond, there is an epidemic of childhood depression and anxiety of undue proportions, and long before James' diagnosis I thought about possible ways to counteract that disturbing trend. Those of you who know me well also know that the occasional bout of melancholy is certainly not foreign to me, and I often think about what I may have absorbed in early childhood that makes me more porous that way. Mind you, I don't think being "porous that way" is all bad. I think it indicates a heightened sensitivity to life, to empathy, to the experience of being human and the emotional range available to those of us wonderfully distinct from robots and the ex machina artificial intelligence being honed mere miles from our Silicon Valley homestead in labs glamorous and well-funded. And yet - I do not want my son to "find sorrow" as a result of his cancer, or due to our own parental fumblings as we try to support him through this logistical and emotional odyssey while attempting to stay whole and afloat ourselves. He is taking so many actual pills now - what if this experience becomes the main ingredient of his childhood honey, his milk? Will it render him enlightened? Full of gratitude, fortitude, courage as so many people say childhood cancer survivors develop? Or just ... sad and heavy-hearted? Wounded, damaged, lesser than? I have to believe the former. I have put aside my own melancholic tendencies in the face of this destabilizing event to cope and move forward - and perhaps this crucible has taught me to claim and honor the survivor role rather than to give oxygen or mindshare to the emotional invalid inside of me... and that in fact, I may be able to reframe that latter as a source of wisdom and strength rather than of shame.
That said, it is still the people around us who help get me through. I remember thinking many years ago during a bout of postpartum sadness that depression felt so self-indulgent, and ... wasn't it a clear sign that I was damaged goods to need support from friends and loved ones rather than just tough it out in silence? At the first signs of sympathy, at the resigned acceptance of help and support from those who noticed and cared, I doubled-back the guilt on myself and believed our esteemed poet below:
I can wade Grief— Whole Pools of it— I’m used to that— But the least push of Joy Breaks up my feet— And I tip—drunken— Let no Pebble—smile— ‘Twas the New Liquor,— That was all!
Power is only Pain— Stranded, thro’ Discipline, Till Weights—will hang— Give Balm—to Giants— And they’ll wilt, like Men— Give Himmaleh— They’ll Carry—Him!
—Emily Dickinson, 1862
I'm sorry, Ms. Dickinson, but with all due respect, I am going to call bullshit. I was no Giant before, only human, and while I do believe Nietzsche is indeed right ... rather than wade grief in solitude, I choose to share my pain and have others help me through it - and I believe that makes me stronger in the end. I hope I am teaching my son the same, as I use a rag to wipe down his feverish body, as I help adjust his legs to subdue the occasional pain in his bones, as I read him card after card of love and support. I hope that I teach him that maternal love, connection, and nurturing can come in many different forms, from many different corners and avenues of life and connection and relationships. That is the only antidote to the isolation I think far too many young and old feel these days, and he has the opportunity to experience that antidote at a formative age. So be it.
Much love to you all still with us on this journey. Onward and upward - together.
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