Before & After ― a.k.a. Losing Our Marbles

"The art of losing isn’t hard to master;  so many things seem filled with the intent  to be lost that their loss is no disaster.  Lose something every day. Accept the fluster  of lost door keys, the hour badly spent.  The art of losing isn’t hard to master.  Then practice losing farther, losing faster:  places, and names, and where it was you meant  to travel. None of these will bring disaster.  I lost my mother’s watch. And look! my last, or  next-to-last, of three loved houses went.  The art of losing isn’t hard to master.  I lost two cities, lovely ones. And, vaster,  some realms I owned, two rivers, a continent.  I miss them, but it wasn’t a disaster. 

—Even losing you (the joking voice, a gesture  I love) I shan’t have lied. It’s evident  the art of losing’s not too hard to master  though it may look like (Write it!) like disaster."

— Elizabeth Bishop, "One Art"

I have a confession to make. Around my right wrist is a bright blue hospital bracelet. You may not be surprised at that simple fact, given that you know I am in the hospital almost all the time right now. However, I also have a yellow lanyard around my neck to hold my Parent/Guardian badge at Boston Children's that gets me up the elevators, into the mini-kitchens, out of the parking garages with speedy validation. A Hospital Status of its own breed. My wrist "jewelry" is superfluous, downright obsolete: I still have not managed to take off the initial blue bracelet with James's patient info from the first hospital when we were admitted to the Providence Hasbro Children's ER. I can't quite cut the cord as it were, walk the mental bridge from that time when we were worried but naive about how sick he was, about what could possibly be wrong ... to where we are now in this new alternate reality.   There is .0001% of me still holding out hope that this is all a mistake, a bad dream, that I will wake up to the Rhode Island sun and smell and light and birdsong and have my main concern be if I can really pull off wearing a bikini to the beach given the decade I'm approaching. And then - I recall his fatigue that afternoon. I recall his pallor. I recall acutely our decision to take him to the hospital despite our pediatrician's reassurances, despite our working assumption that his body would sort this lethargy out with some extra Tylenol and TLC.  I recall kissing Grace and her cousins and saying we would most likely be back by dinner time at the latest - for some freshly caught (harpooned, of course!) swordfish and homemade pesto and a caprese salad, how fancy.  I recall the drive there, relatively calm, discussing mundane domestic decisions that awaited, anticipating our relief when we would no doubt be told that our worst fears (mono? Lyme?) were unwarranted, that this garden variety virus would run its course and he would be fine. I recall calming James when they drew his blood, feeling genuine in doing so as I believed my own words that after a small pinch of the needle, it would all be okay, honey.  I recall the gregariousness of the ER doc, him taking the history, touching James's body, making conversation, agreeing with us that it was probably nothing, learning that Charlie was a critical care MD and noticing how that simple fact seemed to hurry things along all of a sudden, ushering us into some sort of additional stream of attention as a part of the brotherhood, the fellowship.  I recall the endless waiting nonetheless, the irritation at the beeping machines even back then (far less intrusive than now), the moment the nurse said the blood work was back and the doctor would be in shortly. I recall the mood shifting as he walked into the room, noting that his demeanor was different, hushed, respectful.  I recall following him into the consultation room to discuss the results, holding Charlie's arm, watching my feet walk one in front of the other, thinking to myself, "Wait a second. This moment, right now. Is this ... Before?" and just knowing by the doctor's body language that the answer was yes.  But hoping that he was just tired, it was getting late, maybe he had just lost a patient, the pour soul, that maybe I was reading his expression wrong.  Please, don't let this be the Before.  And then ... the pause between the Before and the After.  I recall seeing Charlie's face wince in pain when the doctor handed him the printout of the blood counts.  Charlie's handsome, strong, even-tempered face cringe in fear in a way that I have never witnessed after nearly 20 years of knowing him intimately, thinking I had already memorized every expression his face was capable of.  I recall their urgent jargon, their hurried tones, their agreement on the additional tests to run STAT.  The lump in my throat as I asked them to please tell me what that very low hemoglobin number actually meant.  You all know the After.  We are in it now.  The "new normal" - I sort of hate that term.  But I accept it.  I guess there is a far better and true "After" when all of this is over, when James is hopefully in remission, when he is through the protocol and considered "cured" with minimal risk of relapse. And I guess there is also the During.  The enDuring?  We are in that now too, the daily doses, the 30-day sentence here in the hospital, the follow up chemo for 3 years to come.  But there was the acute "During" too - our shock, our individual and collective grief.  Our family members and friends sobbing when we shared the news.  Admitting to each other our guilt in telling James earlier that day that of course he could walk the 100 feet to the beach, that he didn't need to be carried, admonishing him that he was a big boy at 5 years old and didn't need to go on mommy's back, on Daddy's shoulders. My weeping when James had finally fallen asleep in the ER that first night. Charlie's tears in telling me that first night in the hospital about James saying he wanted to be carried up from the beach, that his legs were too tired and Charlie repeating that he could walk, it wasn't far, to be a big boy, to act 5 years old, to stop whining, holding the boundary and James crying and yelling, "Dad!  You don't know! You're not me!" And crumpling down on the stone & grass path to the beach in a fit of frustration and tears.  We brought him in soon thereafter.  And that next morning After, in the hospital when he woke up ... we apologized to him, telling him we hadn't realized how tired he actually was, how sick he was feeling, that we were going to help make him better now.  His relieved smile at finally being Understood. I have a whiteboard in his hospital room now with all the acute things I need to get done in this next hour, this next day, this next week. Key conversations with the doctors. Scheduled procedures. Test results to anticipate. What drugs are going in him when, and how, and what that means for his body in the following hours. Another conversation with his school, the district, the IEP debate. Another call and battle with the insurance company. Grace coverage spreadsheets and details until I get home. Flights, logistics, care and the transition back to CA and UCSF and everything I know I don't yet know but need to determine.  I use Evernote obsessively in my (old) normal life - thank you Chris O for your great note and your awesome company - but I have not touched my To Do List since the day we went to the ER.  I have looked at it, winced myself, and accepted that I just can't bear to update it yet.  It is from Before. The calls I need to make to clients. The outstanding invoices I need to send. My Q4 work schedule and commitments. The receipts to give to my bookkeeper. The after school activities for the kids to finalize, the soccer team details to sort out for James.  The piano lesson I need to cancel. The back to school items still to be bought. The necessary details for the imminent trip to Mexico for my 40th birthday.  The Sept meeting with the financial planner we still need to schedule - oh, how our "goals" are different now.  How our mundane diurnal details have shifted. 

Another confession.  Thanks to my stellar in-laws I got outside of the hospital last night and part of today for some real sleep, mental respite and "self care" (a brief side note on this: to those of you concerned about this for me, thank you, and please note that I have allowed myself all the diet cokes I want for the next 30 days, instead of my 1x per month normal allowance.  But I know that's not exactly what you mean).  I stumbled into a Starbucks in Newton and ordered a cold brew with vanilla.  The barista asked for my name for the order and I said automatically "Caty Everett, room 6222." It was my automatic hospital response, straight out of the "After." She looked at me like I was insane.  Almost!  But not quite yet.  We are hangin' in here in this After life.  And at least there was no note on my windshield when I headed back to my car this time.

So no, I haven't lost my marbles yet. And that is a running joke at home - we have a marble jar, a big mason jar that gets a marble every time Grace and James do something to show age appropriate responsibilities, cooperation, good attitudes, taking initiative.  Setting the table without being asked?  Marble in.  If mommy has to repeat things in the morning before leaving for school like "time to get those shoes on!" or "for the last time don't forget your lunch" or "holy %*$%#*& I am going to be really late for this meeting if you continue to walk at that snail's pace to the ^%$#@*& car!", marble out.  If mommy is pushed to the breaking point and actually has to yell, that's called "losing our marbles" - 10 whole marbles come out of the jar.  Once the jar is filled to the brim?  Puppy time.  Of course ... that was the plan ... Before.  We were aiming for Christmas.

But I haven't lost my marbles here. There's no room for that. We're on a mission. The news post spinal tap is great - his blasts are still 0, the chemo is working thus far, the cytogenetic test results and initial measures show that there are no concerning prognostic indicators. Certain mutations and gene "deletions" in the cancer cells are there, but that is expected, and he is negative for any mutations that are predictive for relapse.  We just need to see how he does over the next 30 days, and wait for some more flow cytometry test results from Johns Hopkins in the meantime. So ... hurrah!  Go James!  May the Force be with you! Of course, no one back at home can find the keys to our Subaru. We were down to our last spare. Some things never change.

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A final note - I also got a turbo pedicure after my Starbucks run.  I'm a fairly traditional girl, would always go for some subdued version of a dusty rose or equally bland pink - though last year I even decide to mix that up with the rebellious sporadic silver. But that was Before. Today instead I picked out a bright, enlivening blue, in solidarity with Grace who just got her toes painted a bright blue all the way across the country with an old and loving babysitter who offered to take her out for a little treat. Plus, it matches my old hospital bracelet. And speaking of Grace?  She is doing great.  More on that soon, but suffice it to say she has got 5 substitute rockstar mamas back home who are a lot more fun than I am, and she is basking in it. And the distraction of back to school has been highly positive - in our FaceTime yesterday she was beaming and telling me all about the recess yard happenings, and promptly announced "...and Mommy, guess WHAT?!?!  Ray LIKES me!!!"  The girl is a delight and having a ball at the moment. She will process this in her own way, on her own time, as we all are.  And we will be there for her as she does.  But in the meantime? Right on, Ray!  We like her too.   Honey, now speaking TO you rather than just OF you:  If or when you ever read these journals, please know that even though these entries are mainly focused on your brother and what he is going through right now, you are on my mind all the time. I draw unbelievable strength from you, from your laughter, your sparkle, your light as well as the love and concern you have shown for your brother and best friend who is in pain. You have your grandmother's name. You also have the most Grace of anyone I know at such a young age. We somehow knew the name would suit you even when you were in my belly. We had no idea just how well. I love you, honey.  xox and Hello from the Other Side - Adele ... and Mommy.