"The best thing you can do when its raining....is to let it rain"
~~ Henry Wadsworth Longfellow ~~
I'm sitting down again tonight with my old musical partner, Mr Einaudi, to make sense of the day. The last couple of months have absolutely flown by and with the season's first rain this past weekend, I think fall is officially here. Two years and three months we have weathered. So many activities, phone calls, emails, classes to teach, business to tend to, gatherings to arrive at, meals to make, bedtime stories to read, people to talk to and prayers to say. It can make you dizzy like the perfect storm. It can center you or it can foolishly mask the underlying purpose of what we're supposed to be doing, knocking you to the floor (good or bad) before you even knew what hit you. We are exactly a month away from the end of Ellie's chemo treatments and it is hard to make sense of it for me. We've been looking forward to this date, we've been hoping, and we've clawed with our bare fingernails deeply embedded in this struggle to a point where it is time to stop the medicine and just let faith take over. But the rain persists. Sometimes it is sleepless nights or too much thinking or money wars with the health insurance or other stuff unrelated to this battle that takes up so much useless time and energy. Every single drop is felt. And so I find myself drawn to the door, slowly opening it and staring at the sound of pavement being pounded. We have wanted answers for so long. So very....very long. I may need a push outside in a month's time but there is no avoiding the inevitable truth that will continue to unfold. We have to let it keep raining and embrace the potential possibilities where there is no control. I thought the above picture spoke volumes tonight to what has been on my mind,
With Polly tending to her work schedule this week, I took Ellie to her weekly treatment. It has been a few weeks since I have sat through a full 3+ hour session. Today's time in the waiting room brought me back a couple years. We were initially one of the first folks to arrive and thus got taken back for her blood to be drawn. This takes about 20 minutes and then you are returned to the waiting room; however, once a month we go down the hall at LPCH for an inhaled antibiotic treatment that is used as a preventative measure for many kids on chemo due to compromised immune systems. This took another 20 minutes to complete and we walked back to the main waiting room in the Bass center. By this time many other families had arrived and when you open the double doors to go inside, you cannot help but observe the stunning cross section of our childhood cancer world. Multiple ages, races, and stages of treatment. There are parents there for routine checkups after years of coming that embrace it like another errand on the day to accomplish in between stops at the store and maybe lunch afterwards. There are those newly diagnosed who appear white as ghosts, terrified, and uneasy. And there is everyone in between who take on characteristics of both extremes. Every parent in there knows exactly what each other is feeling. It is a startling reality check to those who get too comfortable with the uneasy thought that our kids can be completely cured just because treatment is over and an essential reminder for those who have never step foot in this world before. If you haven't before, you should. We as a society are so stunned by single occurrences in our country or those abroad that encompass random acts of violence....and rightly so given the usual circumstances that unfold with them. However, one step into the Bass center and you will understand harsh stories of equal or greater value play themselves out everyday behind those double doors. All random acts of violence taking place inside kids who never asked for it in the first place. We take solace in the fact that we at the very least can soak in the rain together.
It is not always roses, as I know you know, but the appearance of everything going fairly well for us right now is genuine. Make no mistake, Ellie is more than ready to be released from the weekly chemo routine. When we finished her Vincristine and Methotrextate shots today, she went skipping out of the clinic to the main hallway and down the corridor toward the exit. (Ok, her version of skipping is more a small gallop, but you get the idea) It's that joy in her step that allows her to retain the innocence that once was taken from her but has fought like mad to get back. We have exactly four chemo days left plus a week of steroids after the final treatment day. She'll have a handful of appointments over the 2-3 weeks afterwards to have end of protocol tests performed, one final bone marrow aspirate, and ultimately her port removed....but the chemo stops October 25th. Her beautiful brown curls in her hair now reach past her shoulders. She is kicking a soccer ball with both feet, swimming under water for many seconds at a time, trotting her pony Cherry over the smallest of jumps, and embracing her Pre-K school year with more artwork than I can count.
I am wondering if this overwhelming desire to keep our eyes on the prize to get where we're going isn't just a little bit flawed. I know the result is important. So many people so eager to move on from this struggle because it isn't the norm among most of their family and friends. Not many know what to say when it is brought up in casual conversation, so we turn our attention most of the time to when the final outcome will arrive. I get caught sometimes wanting the end result too much. What if this journey was more about bringing me to these moments like today where I am witness to miracles in the waiting room? What if it is supposed to be about getting us to the next family gathering...without a care for what comes the following Monday when work resumes? There is some peace in finding the present all that you need. Be Here, Be Now, look up....and breathe deep while the rain falls drop by amazing drop all around.
We're scared. What else is there to say? I know you can offer shoulders and helpful advice. None of that will ever cease to ease our worries. Thankyou! But the persisting fear is something Polly and I have to face with time. With the end of chemo comes the end of a security blanket of sorts. Up to this point we have had all that goes into hope, love, and faith....and we have had some pretty powerful cancer killing meds too. Week by week, we have watched Ellie's marrow get fortified, strengthened, and put into a position where it is as ready as it will ever be to stand on its own again. She is nearing that point, now days away. We have prayed, we have loved, and we have put our faith into God for what's next. She will have to do this on her own now. It has to work....it has to.
It has to. Please, PLEASE....IT HAS TO WORK.
About 10 days ago, we had an announcement at school over the PA. One of our beloved graduates from the class of 2012...a student of mine his senior year....who was diagnosed with a brain tumor when he was a freshman in 2009, had beaten it a year later, and now was enjoying the summer following his first year of college at UC Davis....had relapsed. It is that stark, gut wrenching reality. And maybe you say it isn't healthy for me to hear these things. Maybe not. But I have told you I will never turn a deaf ear. It is the reality we will have to confront head on after treatment, be it how to live cancer free without worry or whatever other outcome comes our way. It is a cruel burden, but I tell you it is fought and pushed by the wayside with an understanding of what the Present means. The end of treatment does not signal the end of our plight. It is a major benchmark and not a day thereafter will be taken for granted. Please pray for CJ. His parents, I'm absolutely certain, are doing everything they can to make this second go round of treatment a hopeful one with nothing but endless possibilities.
One of the remarkable aspects of landing at a catholic school to teach at 8 years ago is that I have a built in daily reminder of faith...and readily available resources to explore that faith. Whatever master plan unfolded for me when grad school ended put me here for a reason and I don't think I would have made it through some of the days of the last 2+ years without it. We begin every school year with a faculty retreat and this year was no different as we ventured up to the Jesuit retreat center in Los Altos on a picture perfect August day in the bay area. We had 6 options for prayer sessions of which we could attend two of with our allotted time. I chose to further explore this idea of the "Centering Prayer" which has been a bit of guiding tool for me that I can always use more time with. For me, there has to be a concentration and comfort on not hearing anything while we pray. I always have to have the radio or TV on when I am at home....I call it multi-tasking while Polly calls it unnecessary (she's right, of course). Still, the silence is something that requires a keen focus and so not doing it very often leads me to difficulties in centering, if you will. You have to be OK with not expecting a voice in return and you also have to find a way to slow your thoughts down to almost nothing. It is you, maybe a view, and your breath. One breath at a time. Deep, purposeful, and calming from inhale to exhale. Be Here, Be Now, Be Present. We were asked to write a few notes afterwards and I don't like to share those very much. But, to end this tonight, for my own peace of mind to close off a day like today where the struggle seems so very real again even when for the most part everything went very smoothly for Ellie....and because shedding a few tears while typing has been very necessary and theraputic to get me back to a productive Tuesday tomorrow....here was the result of my image staring up to the sky trying to make sense of the rain:
There is Hope in everything I try to do. The promise of God is that it will unfold on his time. Patience is needed as is the recognition of one breath in between. The joyful story centered on that breath will examine how the life it empowers gives off a present beauty embraced by Hope. I know it is ok to struggle so long as the intent stays true to heart. We'll get there, eventually, but not until I figure out today.
~ JP #love4ellie
