id
id/ noun
the part of the mind in which innate instinctive impulses and primary processes are manifest.
Happy Holidays to all! We made the trek out to a gorgeous tree ranch down Skyline Ridge last weekend to cut down and haul home our now newly decorated Christmas tree, and the house looks festive and colorful. The jingle bells ring and seasonal cheer is in the air, though the spectre of December 20th also looms before us: I can sense my anxiety growing each time we get closer to what feels like our own personal D-Day. That is perhaps an overly dramatic way to put it, but it is the day James enters into the 4th out of 6 main phases of his treatment protocol, and the most intense to date. It is an 8-week barrage (extended if he gets too sick that they have to delay or lower doses) of very strong chemo drugs, a potent cocktail of what in my sleep-addled brain may as well be called gold-otoxicyn, frankincense-izone and myrrh-ipatinate, delivered through the diverse mediums of spine, IV chest portal, and mouth by the medical magi. The dreaded steroids also begin again as part of this holiday deluge. Feliz Navidad!
Mind you, despite the reference to the three wise men above, I don't mean to be presumptuous enough to compare James to Jesus Christ (especially for those of you who are religious and still gracious enough to be reading this somewhat visceral and unfiltered blog of a parent in pain by proxy). He's far too much of a little devil at heart for one thing. What I do know is that he has endured intense suffering far beyond what any little boy deserves, and there are many others - far too many - like him in that respect. The world is not fair. We know this. While I experience flashes of grief, anger, and fear in the face of this new reality ... we have come to accept it.
While some days are easier than others, my mission in this new maternal order has of course been to be as supportive, loving and protective a parent as possible. After returning from our hospital "induction phase" inpatient month in Boston, James has been handling everything so well, for the most part full of energy and good cheer - even after his outpatient chemo infusions and spinal taps as his body metabolizes the poisons that are saving his life. It feels like we are perpetrating a slight betrayal to know that after months of encouragement and hard work and heroic resilience on his part, with him feeling better and better as compared to our August baseline, we now have to actively make him feel worse. What the powers that be have in store for him is likely to be brutal, in contrast to how well he has been doing in his treatments thus far and how much better he thinks he is getting. "Am I still sick mom? Do I still I have cancer? I don't feel like I do!" We now purposefully have to set that progress back to pummel any remaining rogue cells that may be hiding out. We know he is in for a doozy, and this next phase harkens back to those first 30 days of a hellish alternate reality that I am still processing. Is there such a thing as Pre-TSD? In anticipation of what is bound to be a grueling (albeit mainly outpatient, fingers crossed) chapter in this odyssey, I feel both resolute and terrified - on his behalf and also on my own. I am having flashbacks to the worst parts of that first month, his body and mind a hostile and unrecognizable simulacrum of our son, as we did our best to soothe him into submission and let the doctors help him heal. I truly wish I could bear this pain myself and not subject him to it.
I am obsessing about the imminent side effects that will begin with this next treatment phase. We got his hair cut short last week in anticipation of the certain knowledge that it will start falling out at the end of this month. It is a buzz cut now, the style of choice for little boys everywhere, and for me wholly reminiscent of my younger brother returning home from from Bob The Barber's as a little boy with an ear-to-ear grin and a tolerant smile as he let his sisters run their fingers over the cool, smooth texture of his newly shorn scalp. In the 2 months ahead, James's loss of hair will be accompanied by a lot more nausea and vomiting, increased exhaustion and lethargy, bigger disruptions in sleep and appetite, steroid-induced bouts of rage, and an immune system whittled down to a nub by these new drugs. "Neutropenic fevers" can emerge at any time and will land us straight in the ER for immediate antibiotics and potentially days of inpatient monitoring. That said ... he has done so well with his treatments thus far that it could be a lot less grueling than we expect, so fingers crossed. I know what I want for Christmas.
And then ... there are the side effects less visible, of course, which I have alluded to in past posts, and which still creep into our family life as much as I try to compartmentalize. Life doesn't stop even when tragedy strikes. I am doing my best to shield both James and Grace from the stress and worry that these past few months have brought, although I am far from perfect in managing my own emotional reactions to these stressors. Truth be told, apparently I have developed a physical manifestation of my own, a stress-induced immune response that means patches of my fingers intermittently become swollen and itchy, red and throbbing. It's a great holiday party look! Who needs festive bright red nail polish when your very fingers can do the trick all on their own? Charlie has told me that in medical terms, this is an inflammatory stress response called an "Id Reaction". The irony abounds. The "id" is a wholly Freudian term to me, the part of the mind that contains our innate instinctive drives and impulses - it is the unfiltered human subconscious. As a very quick psychoanalytic primer for those who don't know the term, the id is the most basic and primitive part of the personality, and demands instant gratification for our wants and needs and emotional reactions. The ego and the superego are the other pieces of the human psyche that manage or override those more animalistic drives and impulses so that one can function in the normal world - or run for president (and win, apparently).
As you may remember from a couple of posts ago, James's cancer is not the only thing that has been a hard reality this fall. My "id" reactions have been at full steam ahead in the face of these developments, with waves of fury and grief a part of my daily experience despite the fact that I'm keeping it together. Without going into detail, I will say that I have found an intense amount of grace and inspiration in my younger brother's example of rising above the fray as he has navigated his way through a very painful and unbidden experience of his own, with the health and well being of his children also very much at stake. While I am not usually one to judge, he has been on the receiving end of some of the most horrific and selfish behavior from someone he once trusted. At my own id-driven aggressive instincts to seek fairness, justice, to insist that he go on the offensive in the face of a morally bankrupt and even delusional antagonist, it has been quite an up front education in what it looks like to rise above the worst parts of our human instincts for revenge or retaliation.
My immediate reaction was that he was being a sucker not to go alpha, avoiding conflict to duck the uncomfortable, not being enough of a self-advocate in the face of a louder and self-serving bully. What I now know is that he was able to instinctively understand how to preserve stability and some sense of equilibrium for the sake of his children, and not get seduced into a battle where no one would have "won" - no matter how compelling his arguments would have been in court to deem him far more of a "winner" in the situation at hand. He chose grace. He chose the high road. He chose to eliminate ugliness for the sake of his children. Far from a sucker, as the dust settles and the battlefield is not so bloody, I now see him a saint, and I am humbled at his ability to let it be, accept what is unjust, and move through it to move on. The ability to see the forest through the trees even when those trees are full of reasons to step down from the high road and shake their branches in rage.
I am reminded as well - when I see red as my brother describes whatever recent indignity he has chosen to endure rather than contest - that I would do anything for my siblings. That primitive bond is deeply encoded, and I see it growing and deepening in James and Grace these days as they giggle fiercely, seek each other out for the latest game or cool discovery, share a contagious belly laugh as they experience the world and all its follies together from the nest of our shared home. Charlie and I got a babysitter on Saturday night to go to a holiday party, and as I checked in with the sitter partway through the night she said that at bedtime James had requested to sleep with Grace, and that they were both snuggled together in her narrow twin bed, at peace and fast asleep. They were curled around each other when we got home, nestled in. I remember similar sibling solidarity with my own brother and sister as we weathered various storms as children.
So this one's to you, my brother. I love you. I am proud of you, and I know that your best moments in life are still ahead of you. Onward and upward.
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