Sunday, May 5, 2013

Time management

One of the recurring themes of this journey is the paradox of time.  Nothing makes time tangible quite like a newborn baby, or a cancer diagnosis. 

With a baby, I always say to the parents "Do not blink" because as we all know, even when you are paying close attention, it goes by very quickly.  Time, I have said, becomes almost a physical thing, something that you can feel slide through your fingers when there are children around. They learn so much, and grow so fast, so much change in such a short period of can nearly see time tick, watching their many achievements. 

When there are not children around, one Christmas is not so different from another.  But put a child into the mix, and suddenly it becomes 'the Christmas when Olivia was learning to walk…'   'When did Alex begin taking trumpet, because he played for us that year…'   Children help to measure and identify a time.  Cancer does this same thing.  'The Christmas of Lauren’s brain tumor…'  'The Christmas before Brent’s surgery…he had hair…hmmm, must have been the muscle flap…' We talk of such things on equal terms in our house.

I have often been fooled, when I see a friend after a long period of time.  Somehow, I expect that their children ought to have maintained their age during my absence.  But they do not, much to my chagrin.  Instead of aging only the year I grant them, they grow the 6 or 7 that have actually passed.  Children do not lie about time, and if anything, they round it up, proudly proclaiming: "I am 6 and 3/4!"  or if like Alex, you are close getting your drivers permit: "I am 15 and a half!"  The rest of us round it down generally speaking.  For the record, I am "just over 40."

With cancer, we have been at this “nearly 2 years,” rounding up like a child.  It feels like 2 decades sometimes.

At the hospital, there is that "hurry up and wait" silliness that we have been able to manage for the most part.  We hustle to get where we are going, knowing that there is a fair amount of waiting involved in the process. There is peace in that knowledge, as well as preparation in the form of a book or other distraction, instead of always wishing that hour away in frustration. We spend a lot of hours waiting...far too many to wish away.

But that 'hurry up and wait' mentality exists for many with regard to their children.  "It will be better when they sleep through the night….or when they are potty trained...or in school full time...or driving themselves places...or at college..."

Or in relation to a career: "Once I make partner, or finish this big project, or get the promotion...."  I have heard these types of comments for my entire adult life, which makes me sort of sad for the person saying them, that they cannot be grateful or contented with their current situation, waiting for some magic moment to “live.” Failing to enjoy the journey, so focused are they on the destination.

Ambition and aspiration are not bad things. And it is not like I wasn't occasionally wistful about the toileting independence of my offspring, particularly when I changed a 'very special gift' from a 3 year old.  I certainly looked forward to the benefits that this later time would offer, but didn’t hinge my happiness on such things.  I don't think I ever wished away those toddler days, waiting for the unpleasant or challenging parts to be over. 

Similarly, I was pretty grateful for Brent to get the chemo in, for the opportunity for him to beat cancer.  We tried to make the most of those hard days, and to find some laughter, and joy. Not always easy....and we were not always successful.  While we very much looked forward to chemo being over, we did not wait for it to be done so that we could start being happy.

I think the same goes for what we are doing now.  It has been challenging for Brent, as he continues to have wound issues 10 months after his chemo was completed.  I continue to acquire more medical knowledge and experience, both of which I could live without.  But I am not going to wait until it all passes, in order to be happy. I am trying, to varying degrees of success, to accept and appreciate what today offers, as much as I wish it were easier for our son.

Sometimes, there are poopy diapers, because that is just part of the deal. And, to use a Livvy-ism, "These are not my favorite."

I am tired, as we are about to embark upon another long treatment regimen (hyperbaric oxygen), most gratefully, not chemo, but one that is a logistical challenge nonetheless.  If I were waiting until we were "done" until I planned for fun things, we would never do anything.  Over the weekend, I have been setting up some fun things for the kids this summer, and I hope that it will work out.    

With cancer, there is a sense of time being a physical thing, a presence.  It forces you to be present, and deal with only what is in front of you, what that particular day has to offer.  You have an awareness of time like you simply do not before diagnosis.

Perhaps this is because there is the undeniable truth that you wake up to every day:  That no day is guaranteed.  Also, the simplicity, or relative simplicity that today offers, it is a fragile gift. It can become much harder, much more complicated at any given moment.  Our hope lies in it becoming easier, God willing.

I have described how our calendar sort of ends at the next round of scans...a point where we check in with our medical parole officer to see if we are fine to continue living on the "outside."  Heavy in the implication: if we are fine to continue living.  Checking in with them as often as we do, well, that keeps it all very, very real. 

And each day is a tangible gift of time, which I accept with deep gratitude.  The stinky diapers and waiting rooms included.


  1. I just took some time to read all your posts, something that turned out to be a gift to myself. While our medical journey's are different, I am appreciating that someone else is feeling the same way I do, and expressing it so much more eloquently than I find myself capable of. While I am looking forward to continuing to follow your journey, my thoughts and prayers will definitely be with your family.

    1. Hello Heather,

      I have looked a bit at your blog, and send you prayers for health, strength, and a little bit of down time, which could certainly help with the first 2. When things settle down a bit...for either of us, lol...I would love to chat sometime. If HBO treatment isn't successful, I might be asking about 'pixie dust' for Brent. I cannot tell you how surprised I was to read about that. It is amazing what they come up with, and what I learn about, every single day.

      Best, Ann