Treatment Update: Hitting the wall…

It’s been a while since our last update.  Sorry for that; the summer and all its craziness has made time move all too fast.Of late, we’ve begun to feel like we are hitting the wall in terms of this whole treatment thing.  ”Hitting the wall” is an expression that marathoners know all too well.  In physiological terms, it is the point in the race when your body runs out of glycogen (the body’s stored form of energy) and the body must switch from aerobic metabolism to anaerobic metabolism.  Not an efficient switch for someone trying to crank through the last few miles of a race.  In a physical sense, “hitting the wall” in a marathon is the point in the race, usually around miles 18-20, when you begin to feel like your legs are filled with lead and your sleek, light racing shoes turn into concrete blocks.  You feel like you are running through quick sand and that you are pulling a semi-truck.  Mentally, your demons begin to fill your head with doubts about your ability to take your next step let alone to reach the finishing line feeling strong.  This is where the marathon becomes a supreme mental challenge.  This is the point at which you must believe in yourself, your training, and the countless hours you’ve dedicated toward getting to this stage.I feel like we have reached that point in Maddie’s treatment.  We are only 5 months away from the finish line.  If we compare that to a marathon, we would be at about mile 21 or 22, the perfect place to “hit the wall”.   A couple of months ago, Maddie and I were driving in the car and out of the blue she said to me,”Will I be asleep when they take it out?”  As several seconds of quiet ticked away, I quickly tried to figure out what “it” was.  Then, it hit me; she was wondering about her port.  Would she be asleep when her port was removed from her chest?  I replied,”Yes, you’ll probably be given some propofol, so you go to sleep and it will be removed while you are asleep.”  She thought about my reply for a moment and then said,”But how will they take it out if they use it to make me go to sleep?”  Not having much OR experience, I wasn’t entirely sure, but I guessed, “I bet they will put an IV into your arm while you’re asleep and then take the port out.”  She thought about that for a moment and said,”OK.”  Then a moment later, I heard these deep, sorrowful sobs from the backseat.  It wasn’t the cry of a child who had just injured herself; rather it was a mournful sob that you might expect from an adult.  It certainly got my attention causing me to nearly drive off the road.  I asked her what was wrong and she replied,”I just don’t want to do this anymore.”  Flustered, I wasn’t sure how to respond.  Yes, I wanted to sob, too, and tell her I didn’t want to do this anymore either.  And I did.  I told her that I was tired of it, too, and given the choice I would rather not do this anymore.  But then we talked about how we don’t have a choice.  I told her that the medicine, blood draws and all the procedures are ultimately going to her better and get rid of all the cancer.  All this was information she already knew, but I think it was helpful for her to be able to express her frustration and have it acknowledged.   Brad and I have forced Maddie (for better or worse) to incorporate her treatment into our regular daily routine.  We tend to not dwell on how much it sucks, because we don’t see that attitude as helping us through this long journey.  But every once in a while, just like I did at mile 21 of the NYC marathon in 2004, it’s OK to WANT to be done.  What is also important and most difficult, is that during those low, dark moments, you pick yourself up and will yourself to the finish line.  I made it to the finish of that NYC marathon, not in a personal best time, but with the satisfaction of working through the challenges both physical and mental and persevering to the end.Our dark moments are not plentiful.  When they do come, we face our fears head on, recognize how far we’ve come, and believe that we can do it. The effect of Maddie’s treatment is hardly visibly physically; she has a full head of very curly brown hair, enough energy to keep Brad and me running, and has just started kindergarten.  Like a marathon, however, this journey has become a supreme mental challenge.  We now have our eyes on the prize –  January of 2010 and Maddie’s finish line.

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