China gets broken, and it will never be the same Boats on the ocean find their way back again I am weaving like a drunkard Like a balloon up in the air I am needing a puncture and someone To point me somewhere I'm gonna keep my head on straight I just hope it's not too late Open up the gate ... I go straight on, steady on
― Shawn Colvin
I don't have a more profound quote to start with this time. Pragmatism and panic have replaced profundity for the moment. The news is actually positive, albeit tentative - James's numbers are looking good enough that there's an outside chance he could get discharged this weekend (!) and start outpatient treatment at Dana Farber while we perch locally here in Boston for the rest of the induction phase. That's not a normal thing for them here, but since they are following the UCSF protocol rather than their own, they are learning as we go too. He might even be "safe" enough to fly home between 9/9-9/13 to do the next spinal tap, port insertion, and bone marrow biopsy at UCSF (rather than have to fly the tissue across the country, which is less than optimal). Why am I not flooded with relief? The doctors all seemed to think I would be jumping for joy at the prospect.
Three main reasons.
One: things change on a dime here, as I have learned all too well. We could wake up tomorrow and the neutropenic levels could be in the danger zone again and they could very easily say during morning rounds - Pysch! September Fool's, Caty! You'll be here all 30 days and then some before we even let you near a runway. Ah ha ha ha ha ha! Or he could spike a small fever for .02 milliseconds and game over, back to plan A. Most likely, his levels will stay at this plateau and each day will be a wait and see, let's get the count tomorrow and maybe in a few days we'll discharge him. The constant guesswork is enough to make you lose your marbles.
Two: wait one %&$#* second. We were just getting our groove on here. James finally figured out how to work the Wii in the Resource Room (a moniker straight out of Harry Potter, I know). I've bonded with some other grief-stricken parents who hold it together by day but also walk the halls in the middle of the night. I know the nurses now. I swipe my hospital ID with abandon. I call the hospital line for his food at just the right hour so I don't have to wait on hold. I have three other clinical assistants at the ready to pin him down if those evil endocrinologists demand yet another glucose-level finger poke. (Note to self: poke out my eyeballs if I have to do that ever, ever again to a strong, scared and angry 5-year-old. Apparently drops of his blood mixed with a mother's tears is not sufficient to draw a fasting glucose level - we must have a sterile sample.)
Three: In what has been terrifying uncharted parental territory for us, I thought this induction phase plan was unequivocal. Unambiguous, even if the drug dosing on a given day was slightly tweaked based on his blood levels and treatment response. I feel like it was laid out as The Plan No Matter What: 30 days acute chemo here in the hospital minimum before it was safe to transfer his care and chemo to UCSF. WTF? Okay, yes, it is "good" news, so breathe deep and easy - but ... the immediate implications bring me to my knees. Now I have to do this alone? I have to learn how to sterilize and flush the pic line? I have to change his dressing that with one misstep could infect him all the way into his vessel? I have to wonder what the hemoglobin and ANC and blast levels are every day rather than get the update on early morning rounds from 5 doctors all sharing acute responsibility for his well-being? What? Me? I'm the one who thought parenting was really truly hard before all of this!
Each time I get a brief break from the hospital, when the proverbial clock strikes twelve I grit my teeth, steel my nerves, and try to fight my way through Boston traffic back to the bedside. It is not long before the navigation system on my phone goes completely berserk. Once I approach the Harvard medical area at Longwood Ave that has become "home" for now, where Dana Farber and the Brigham and Boston Children's and HMS and many more pulsing medical complexes all seem to converge (metastasize?), my Google Maps system starts to go crazy. I get in the left lane off of Beacon Street to take a left as directed, waiting at a traffic light, and all of a sudden Lady Navigation starts hyperventilating. "Take a right on Prospect" and then before I've even budged an inch "Take a left on Prentiss" then "make a U-turn and turn left on Albemarle Way" until she's out of breath and I'm completely lost, heart and steering wheel aflutter. Physically lost, not just metaphorically. I've moved forward in some scattershot fashion to try to appease her, I am utterly confused, late, panicked, and it is all I can do is to pull over to some comforting and unassuming bus zone and scream out loud until I'm ready to try again. Jesus Christ - just look at the actual map, Caty, and GET there. At least Boston drivers are so calm and forgiving.
No one else I know seems to have this problem around here, so perhaps my phone is possessed. Or perhaps it knows I have no idea what the hell I am supposed to do here, where the hell this is all going. That we were never supposed to be here in the first place. That no one, not even the experts, has any road map that guarantees a set destination. I've already confessed that I am often guilty of distracted driving, distracted parenting, distracted living just keeping all those multilayered balls in the air. And frankly? I am not going to find the answer to how to get to where we need to go through Google Maps. There is no clear path.
Even though I'm a consultant to them now rather than in-house, I'm a longtime faculty member of an executive leadership program at Google called the Advanced Leadership Lab that we uncannily refer to in shorthand as "ALL" - does that acronym sound familiar? It is James' diagnosis abbreviation. Comedy! Anyway, we talk about the nuanced culture at Google, what it means to become a leader there given the self-organizing chaos where people and leaders need to move forward with highly imperfect information, constant change, vague directions, innovation as a North Star and not much else in the way of direction. VUCA is an old military term that describes a similar environment. I've lived that there, I've taught and coached other leaders there on how to manage and navigate that ambiguity. I'm certainly walking my talk now. O Google - how you helped me grow! How I wish I still had your health insurance!
But maybe, just maybe, Google Maps, it's possible that despite my reliance on you in my daily life, I've got you beat on this one? That it is not about the specific map, route course, path, directions - but about a higher order calm and fortitude to help lead the way down an ambiguous path? No offense Geo/Jen F. - I think the world of you guys. But as I approach the medical campus and get closer to James's room, the machines, the procedures, the test results, all of the questions that plague us now - you can't tell me how to navigate. It's one foot in front of other, one step at a time, with fortitude, strength, fellowship, and conviction as the key drivers. There is no direction to follow, no sense of the turns and forks in the road ahead that I can't anticipate in detail but know will be there. But there is the surrender and strength to just ...keep ... moving ... forward.
Same goes for what awaits us back in CA. If I let my mind work too far ahead and think about his schooling, my work commitments, the relapse statistics, 3 years of this new slog, what it means for his friends and our social life and what happens when we're no longer the It Couple for Cancer after the new normal truly has set in back home, and I panic. But then I feel my feet, start my engines, and just keep moving forward. Steady on.
For now there is the endless, endless guesswork. An yes, despite the ambiguity there are parameters, milestones, markers. A relatively clear-ish plan wherever we are based for now, slight tweaks once the cytogenetics and flow cytometry results are in from Johns Hopkins. Man, if I had a nickel for every cytogenetic flow cytometry test measure I've pretended to understand, I'd be flying James home on a private jet. Working on it ;). But in the meantime, I guess the only direction I have right now is my own North Star - and I can look to James to brighten that, and to my own inner compass. I'm having to rely on that small, trembling arrow more now than I ever have in my whole life. Onward! Meanwhile, back home - Mom and Dad and Grace turned the whole house upside down and finally found the Subaru keys. One navigation challenge overcome.
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