I am 41 days out from my allogeneic stem cell transplant. I did my best to prepare. I knew it would be brutal. I now have to admit I hadn't a clue what I was to face. This recovery is hellish. Top to bottom. I hate it. I've never had to work harder to keep a semblance of perspective and positivity.
I have now grown restless in four different hospital rooms. Thursday night, I spiked a fever (again) and Aura and I finally admitted it was time to visit Urgent Care. So we checked in on Friday after my appointment with Neurology. Now it's Tuesday and I'm still here. I've stopped making estimates as to when I'll go home. I feel no better than when I arrived. My G.I. system has mutinied. I'm still spiking fevers almost everyday. My energy is incredibly low. My appetite is almost none existent, which is working out well because I'm on a liquid diet until midnight and then I go on a straight up fast. Tomorrow afternoon, I'll be receiving my very first colonoscopy, and hopefully my last. My liquid diet consists mainly of two liters of a liquid prep known as Nulytely. That name is trademarked in case any of you had ideas. It's also known as PEG-3350 and Sodium Chloride Sodium Bicarbonate and Potassium Chloride for Oral Solution with Flavor Packs! I chose lemon-lime. With any luck, by tomorrow afternoon, my system should be as cleaned out as Wrigley Field in the 9th.
After spending several days in the hospital it's easy to lose track of the big picture. I spend much of my day just trying to get by, just dealing with the myriad medical workers that visit my room and listen to my lungs. The lung listeners are growing almost as fast as I'm forgetting their names. On occasion, I take opportunity to remind myself that I believe I will make it through this. I don't know why -- I 'm just going to. And then sometimes dismal thinking just clouds everything.
I imagine that for all of you following our, shall we say, sporadic updates from home, it's easy to lose track of the big picture as well. In lieu of details its impossible not to get lost in generalized worries and encouragements that have very little to do with what's going on way over here in New York City. We all lose track of the big picture.
One of my favorite ways to spend my time during these difficult days is to see if I can find the big picture. Even as I focus on finding strength for the day-to-day horrors of this recovery, and even as I focus on how wonderful it would feel to once again live life without Hodgkin's Lymphoma, I find that its just as important to keep my head on my shoulders. To realize the world I live in and my place in that world. To see the big picture is to realize that I am not the only one who struggles. To see the big picture is to realize just how many people suffer everyday, and how much of that suffering we just can't explain. To see the big picture is to know just how hard many of us labor to end that suffering, but it is also to know that so many labor only for themselves, even to the point of obscuring or destroying the good work of so many. To see the big picture is to be filled with gratitude for how much I and my friends and family have learned from this, but it is also to never lose sight of how horrendous this disease is. To see the big picture is to remember that although we learn a lot about life from suffering, we must always remember that it IS suffering, and we shouldn't have to experience it. I have never known suffering like this and to see the big picture is to realize just how completely asinine this all really is. No one should suffer from Hodgkin's Lymphoma. I shouldn't suffer through Hodgkin's Lymphoma, but the big picture reminds me that it just as well be me as anyone else.
My father-in-law, Tom Brickler, is an incredible musician who plays under the moniker, The Wabash Kid. I'm about to share with you my absolute favorite track from the extensive Wabash library. The song is called, "The Big Picture." Tom wrote this song with clear eyes. Even as the vision he shares is sobering, it somehow leaves me feeling a little better. Maybe it's just comforting to know that someone else sees the world a little bit like you do. There are few songs in the world that can help us see the big picture. This is one of those songs, and Dad, I couldn't be more grateful that you decided to share it with us. I am absolutely convinced that one day millions of people will know and love your song.
Stop whatever it is you're doing, find someplace quiet, turn up the volume and enjoy "The Big Picture."
This post originally appeared on Bret's blog.
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