New Road - Day 868

Life after treatment has begun.  Ironically, not without its little stark and fragile reminders which I'll get to in a bit, but for now some thoughts in trying to figure where to go from here.  I remember the days around late July of Induction where we started to feel less shocked by everything and more in a routine.  As I wrote back then, routines feel good.  We know what to expect, what to anticipate, and how to respond when questions arise.  The routine puts you on a path where you can feel like you are progressing forward, even if by inches at a time.  I am a big fan of knowing that when a long day's work, regardless of the severity of its trials, ends with a promise of progression achieved then I will have no problem going right back at it tomorrow.  I know we yearn for the endpoint, and in this case the chance for a cure requires no extra motivation to get us moving as quickly as possible, but I have found the routine of progressing inch by inch over the last two and a half years to be a daily thanksgiving of enjoying the present wherever possible.  Now that the routine is changing, I think Polly and I have emerged with of course the expected elation and excitement to jump into the tree tops....but also we have some very real uneasiness and the very understood sentiment that nothing will be the same as it was prior to June 26th, 2011.

There was always this feeling I had when I completed my final exams in college.  Forgive me if I have mentioned this before, but it bears repeating because of the unique perceived freedom you have when that final test is turned in before either a winter or summer break.  It combines the culmination of all the preparation, the relief that a very stressful event is now over, and the realization that we now have X weeks ahead on break with little to no responsibility.  Ahhh, to be naive and in college again!  I loved that feeling.  Liberating, intriguing, and relaxing.  I did not have to turn it "on" again until I picked up that first syllabus the next semester...which might as well be 10 years from right then.  There was the joy of going home for Christmas with no worries.  Sleep, mom's cooking, new years celebrations, maybe even a jog in the cold weather or a trip to the beach just because I have the time.  The feeling was simple, this was now an endless possibilities care free type time period.

We had some nice laughs and a whole lot of jumping for joy a little over two weeks ago when she swallowed that final 6MP pill.  We posted the picture from my last blog post to facebook and garnered 2,668 "likes".  Pretty cool.  We have arrived at a milestone always looked at as a looooong ways away.  This past week, Ellie went into LPCH for a final Bone Marrow aspiration where they do the same heavy duty detection for cancerous cells that was performed on Day 1, 15, and 29 in the critical first month of treatment.  The endpoint aspiration is more a formality to confirm what the blood work has told us for the better part of the last 2.5 years....that she is completely cancer free.  I love our doctor's calm demeanor about it.  He really knows how to put worries at rest even to the point where I wasn't sweatin' this one at all (ok, maybe just a smidge, but FAR less than any prior).  One last item major item remains and that will be her port removal surgery sometime in early December.  This MRD test served as our ace in the hole and our final exam.

How did we celebrate an aspiration calculation of 0.00% MRD (Minimum Residual Disease - and that would be THREE beautiful significant digits there for those in the "know".....sorry, I teach chemistry)  ???  By going home for a quiet evening, dinner, and then....a subsequent fever spike right before bed.  Yes, off to the ER we went.  Ironic?  Maybe.  Humorous?  A bit.  Routine?  YES.  As I told Polly, if there was ever a day to be in the ER, it was the night following a 0.00% MRD test.  Whatever was ailing her, it ain't cancer.  She is actually still struggling with this cold as we speak.  Fever has come back on two different days but it seems to be viral in nature so we hope it will pass soon.  We are trying to keep her comfortable and wait it out as we always do.  The new off-treatment life still has a compromised immune system to deal with for the next several months, so some of the old routine will remain.  The bigger inner fear I have is this scenario playing itself out several months or a couple years from now when we do not have the benefit of sitting on the heels of a recent MRD test.  Low grade fevers, body aches, lethargy all take you back almost instantly to June 26th.  I know better, of course, but that doesn't mean my mind cant stop from going there.

I still feel like this current time period has a few minor chords to it.  There are more times than not where my confidence in the scientific data are all that I need to reassure.  But, it seems I cannot allow myself to be overcome and fully engulfed by the blissful euphoria of the perceived limitless possibilities in the off treatment life.  Something is saying to keep a watchful eye, however hard that will be on some days.  Part of me understands that's probably always going to be a parenting concern, but this is for sure a different feeling than just my fatherly duties.  It is a fear I am going to have to work to get beyond while acknowledging it will always be with me.  We could have to repeat the last two and a half years (and then some) at the near drop of a hat one day in the not so distant future, thus undoing the now miles of accumulated inches of progress from 868+ days.  You say I shouldn't think about it....But I do.  I do and I think if you knew what this journey was like first hand, you would too.  I would trade right now just about anything for that heading home for Christmas care-free feeling if it came with a 100% stamp of guaranteed assurance.  I am going to have to let go of some of this a few months down the road from now I think, but that will take some time.

I want to say a special thanks for the lifelong friends in my life who have found ways to step in and bring messages of Hope and keen perspective to some tough conversation topics.  My buddy Vince put together a memorable toast at the Rose Bowl last weekend, Timmy and Ellie's first ever trek down to meet the full Bruin family (now with several Baby Bruins - Wow!).  As we paused from the usual banter of a gathering before a football game, there was recognition of what a momentous occasion it was to have all of us there in one place celebrating what the human spirit is capable of.  If nothing else, we stay connected to hold each other up as life continues to roll along.  Two nights ago, I also got to catch up with my very good friend Mike over a drink for the first time in over 12 months as he was visiting from out of town.  I owe both of these guys, more than I can express, for bringing opinions and supportive perspectives to the table that lessen worries, keep us all going, and put a lasting importance on our common bonds of Faith we have in one another.

One day at a time.  That has to be and will be our theme.  The stats say relapse, if it is to show its ugly head, will typically show itself in the first year off treatment.  So, I'm going to pray for an event free Holidays, move on to a day by day winter, spring, and summer....and then celebrate again on October 25th, 2014.  We may just have to make that an annual family day to rejoice and give thanks.  I'd like to think our euphoria these days has a more mature buzz to it.  Ellie did pass her final exam this week.  So you could say school is out and we're all moving on to the real world now.  It'll be a new road with some anxious moments and maybe if you'll humor me, I'll vent on this here blog as we have so many times prior.  Regardless, we'll move forward inch by inch with clear eyes and full hearts.

Picture from February 2012 at the tail end of Delayed Intensification

Strength, Beauty, Perseverance, and a whole lot of HOPE.