Say not the struggle naught availeth,
The labour and the wounds are vain,
The enemy faints not, nor faileth,
And as things have been they remain.
If hopes were dupes, fears may be liars;
It may be, in yon smoke conceal'd,
Your comrades chase e'en now the fliers,
And, but for you, possess the field.
For while the tired waves, vainly breaking,
Seem here no painful inch to gain,
Far back, through creeks and inlets making,
Comes silent, flooding in, the main.
And not by eastern windows only,
When daylight comes, comes in the light;
In front the sun climbs slow, how slowly!
But westward, look, the land is bright!
- Say Not the Struggle Naught Availeth, by Arthur Hugh Clough, 1819-1861 (thank you JW)
A rather provocative and dire-sounding title to start with, I know - apologies! I promise it is a reference to more than just the somewhat morbid, sobering state of affairs we find ourselves in at this stage of the James journey. Rest assured that relatively speaking, all is fine. James and I headed back to UCSF Benioff Children's Hospital yesterday morning to start the most aggressive phase of his treatment to date, kicking things off with another early morning spinal tap and then an afternoon of more chest port infusions with the new chemo drugs that will annihilate his hair, further weaken his immune system, and hopefully kill off any remaining cancer cells lurking in the obscure corners of his body. We were released back home and began anew the high dose of steroids after dinner, which we finally succeeded in feeding to him crushed up in orange sherbet ice cream after yet another draining battle of the wills. I tried not to let my tears drip onto and melt down the ice cream as I shielded them from his sight. Overnight was full of several wake ups and some vomiting, and some other even less fun bodily functions, and we will see what the next few days and nights hold. "Delayed intensification" - it is here, the stage I've been having brief panic attacks about for the past few months. But to Charlie's excellent point as he talked me off the ledge on Monday night, at least the most intense phase (knock on wood!) of this odyssey is finally upon us ... and while the next two months we are told will hail straight from hell, we are closer to the other side.
Do I sound dramatic? Very well then, I'm dramatic. I think I've mainly got my perspective in place: this too shall pass, and hopefully it goes quickly. But it will be markedly different. Since returning home from Boston Children's in September, we have been mostly outpatient for his regular chemo at the UCSF clinic, and though the schedule has been hard and variable, we have been allowed to do almost anything outside, and he has had enough energy to do it. He has also been able to do some tutoring, see some friends after school if they are healthy, visit some museums, embark on various adventures on the days I'm feeling creative (read: desperate). Since he can't be in school or go to the library, and since it is hard to leave him with a sitter for long given the high stakes nature of his illness, I have wracked my brain for inspired ideas to keep us both from going stir crazy during some very long days with a hands-on, high energy boy. I am also poignantly aware that these pressure-free moments I am allowed to share with him are a privilege. We have gone to the Japanese tea garden, to the beach to walk the sand dunes, to the basketball hoop down the street, to walk the labyrinth at the beautiful convent near our house, on bike rides at Half Moon Bay for lobster rolls on Adirondack chairs at Sam's Chowder House overlooking the ocean. That said, these outings aren't quite as idyllic as they sound, and he mainly wants to stick close to home - I think the security of being in a familiar environment where his legos and other toys distract him from the medical reality he is facing wields a strong pull. We have spent many days mainly killing time.
There will be even more time at home over the next two months, as we are now mainly on "lockdown" to ward off any life-threatening infections while he is so immunocompromised from this new cocktail of drugs. He's in that little boy phase where along with Lego battlefields, Star Wars Nerf guns are also a strong draw, and about a year ago I finally gave up on my hardline no-toy-gun policy, which seemed to be backfiring anyway, so to speak. Charlie and I let him have a few hand-me-down Nerf guns which have provided hours of entertainment and intense battles around the house. This past Saturday saw us engaged in a fierce battle in a field nearby: a dart gun game of freeze tag (ironically on the grounds of the convent, which are the only fields close to us - oh, the sacrilege! Apologies to whomever is owed one, and thank you for allowing us to let off some steam). I was reminded of the epic game of "Don't Move!" that my brother and sister and I used to play with my father in our faculty house at Choate growing up, with cheap drugstore suction dart guns and hysterical laughter in equal supply. At the moment, the awesome duo of my stepmother Kim and half-sister Lily are visiting us from Connecticut to provide major moral and practical support - indeed, straight from their dwelling in a faculty house three doors away from the old house in my nostalgic musings above. Even after last night's saga, James has a bit of energy at the moment and he and his dynamite 18-year-old Aunt Lily are hard at work at an intense Nerf gun battle. I'm not sure Lily knew what she was in for when she stepped off the plane, but she has been more than a trooper to say the least. There were torrential rains last week before their arrival, and somehow a nest of baby spiders and a parade of water ants made their way into the crevasses of our upstairs bathroom. Charming (not), far too metaphorical even for my literary brain, and almost enough to fully put me over the edge as I scourged the internet for non-toxic ways to snuff them out. I was on a mission: Killing Time, pest control version. Each baby spider I killed led to a brief flutter of guilt and superstition - I probably earned about 490 years of bad luck, and I kept wondering if their spider mother back in some hidden nest behind the walls would notice they were gone and mourn them. Egad, Caty. And then ... the dastardly ants. I was merciless, driven beyond all reason to eradicate them as quickly and forcefully as possible without spraying Raid directly into the heating vents they were crawling out of and inadvertently giving us all ... well ... cancer? Sorry, morbid humor sometimes helps. I've mentioned before how I eye all cleaning products now warily, wondering, just wondering - where the hell did this cancer curveball come from? The experts say it is just darn bad luck, a random spontaneous mutation. Still ... why? Why him? Why us? That's an existential battle I fight every day. Who knows ... maybe in a past life I killed a lot of baby spiders. I've also spoken about the entropy, and the exhaustion both Charlie and I feel acutely at the moment - physical, mental, existential. This is a whole other echelon of parenting intensity, when admittedly I didn't even feel particularly competent at the basics before this. There are far too many pasta dinners in their youth already. My memory sucks right now, so perhaps I have already shared this in a past post, but there is data to back up my lack of ability to help living beings thrive. #1: I find it incredibly challenging to keep even the hardiest of houseplants alive. #2: in college, I had about 7 goldfish throughout the undergrad years, all of whom died in mysterious or unfortunate ways. The first, named Putt-Putt for some reason I can't remember but seemed clever when I was a college sophomore, I didn't feed often enough and I think starved to death. The second I inadvertently overfed, clearly overcompensating. I got the feeding rhythm down with the third one, but when it came time to change the water in the goldfish bowl I didn't get the temperature right and it died a hypothermic death. I achieved the right lukewarm temperature with the next ... only to find that when I moved the fishbowl on my desk slightly too close to the radiator during a freezing Cambridge winter, it overheated. The next two just went belly up with no explanation, perhaps out of solidarity with their ancestors. Putt-Putt VII, the final installment in this tragic saga, straight up disappeared. It was in the fishbowl on my desk one morning, and when I got home from class that afternoon it was not. Convinced that one or more of my diabolically amusing roommates were playing a benign prank on me, I searched for a ransom note to no avail, and they all proclaimed their innocence later that night. It was a few months later before school let out as I was packing up my dorm room that the mystery was solved - I guess I had overfilled the bowl, and Putt-Putt VII had committed some pescine form of Hari-Kari, leaping out of the bowl and getting lodged between my desk and the wall. I found the dried-out carcass stuck to the wall when I moved the desk to reach some pens that had fallen behind it, tiny bones and shiny skin flecks forming a Perry Mason-like chalk outline of its once-living body.
How can a person like this be responsible for the well-being of two incredible children who deserve to thrive, you ask? I don't know!! I'm freaking out! How did this even happen in the first place? Well, okay ... I guess I do know that part of the biology at play here. But parenting before was at least somewhat basic. Back up plan = pasta for dinner. And now I face the terrifying responsibility of making sure I actively keep one of them alive with some really high stakes at hand. I guess it is a true "growth opportunity" for me as a mother, as a human being, so ... umm ... thank you, O spiritual powers that be? Don't they say God will never give you more than you can handle? But right about now, I wish I had the simple life of a goldfish with an owner far more focused and capable than I am. And apparently, goldfish have a memory span of about 7 seconds. Given the amount of sleep deprivation I am dealing with, sounds about right to me. Did I mention I sometimes want to be a goldfish?
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