Maybe some inspiration will come to me later. Right now, I am just feeling a little defeated and alone. Not overwhelmed. Not unable to cope. Just, like, wow. Another day of this and no end in sight. None.
Now I will post something I read which resounded with me so CLEARLY, I needed to share it here. It is for the afflicted and the Mothers and the families.
“I know you want to go this party. Believe I want more than anything to go too. I know we’re running late, but I can’t help it. My body is slow and weak and it’s dark in this tunnel and hard to see. I’m worried I might trip on a rock or something. Our friends were lucky that they could just take the road to get there. But we’ll make it eventually. Look, it’s just up ahead at the end of this tunnel and I can see the light…”The cancer diagnosis leads us to expect one of two concrete conclusions; either we will be cured or we will not. But it occurs to me when thinking about the future, especially in the context of cancer, that the only end that is truly concrete is death. And that is an awful thing to focus on. So instead, instinctively, we wait and wait for another end — to be “cured.”
But what does it mean to be cured of cancer? It seems to imply that after you hold your breath through the floods of treatment, as soon as you surface you will find yourself on the same shore you dove off from months earlier. The truth is, its impossible to imagine the longevity of cancer when you are first diagnosed. At first it is easy to think about the end. In fact we are encouraged to. People say, “We’re going to beat this thing and go back to living life,” or “Just hunker down through this treatment and get yourself well. There is a light at the end of the tunnel.” The truth is, with my experience with cancer, this mindset is hopeful but may not be the healthiest way to think with a disease that inherently redirects, extends, and barricades “the tunnel” unexpectedly. The tunnel is quite malleable and the future at the end is ever so obscured.
“This tunnel is a lot longer than I thought. A lot longer. How long have we been in here anyway?” Oof! I stumble on a rusty metal pipe sticking out of the ground. I can’t keep my balance and I fall. “I’m sorry,” I tell you, “but we have to wait here for a second so I can catch my breath.” We both look towards the end of the tunnel. We can hear the laughs and screams coming from the party in the distance. But you look back at me and take a seat on the dirty ground next to me. You rest your head on my shoulder and we wait…This week I was scheduled to finally finish my course of Cyclosporine, one of the immunosuppressant drugs I have been taking since February. We have been weaning the dose for a long time now, and I was excited to be done. It would mean one step closer to returning to my life. One step closer to being able to kiss my girlfriend freely. One step closer to going out in public. One step closer to going back to school and starting a career. Going into the appointment, though, I was already preparing for the disappointment. A rash had flared up all over my body over the past week, a textbook symptom of my GVHD. My new immune system still hasn’t quite figured out that it shouldn’t be attacking me. My doctors decided to go up on the Cyclosporine instead of ending it. I was not surprised and this is not the first time I have felt like my prison sentence was randomly extended. It’s become familiar to see that light at the end of the tunnel, the one that has been slowly growing bigger and bigger over that last few weeks, instantly get dimmed and pull away.
“Thanks for being so patient with me,” I want to tell you. How can I tell you with just words how grateful I am that you are here with me? I know how badly you want to keep moving forward too. As we are sitting there, I reach into my pocket and take out a small flashlight on my keychain so we can see a little better. You hold me close while we distract ourselves playing hangman with a stick in the dirt.After all that has happened in my journey with cancer, I am starting to believe that waiting to be cured, waiting to call myself a “survivor,” waiting for it all to be over so things can just return to “normal” is pointless. And that’s OKAY! What is “normal” anyway?
The future is a difficult concept, especially when you have cancer. Disappointing news, delays in treatment, extensions of restrictions continue to put life on hold. The plan is malleable. The threats of danger ever present. When complications arise, it is often with a ruthless suddenness, and indiscriminate shock. You become inured to feeling disappointment sometimes, and learn how to quickly adapt, and sometimes if you think about it in the wrong way, you can’t help but feel like “the light at the end of the tunnel” may never come. So I am trying to think about things differently.
That light at the end of the tunnel sure looks bright and warm. From this distance, I can see just how big the party is. There is a huge bonfire, which is the source of the light. People are eating sushi and oysters and cold cut sandwiches. They are drinking beer and making out.
Someday I will get there, I believe that. But for now, I am not even going to look at it. Instead I am going to look at the dark damp ground in front of me. I have a small flashlight, a nice warm fleece, and a girl to hold my hand as my scrawny legs slowly take one step at a time. I don’t know when we’ll get there, but in the meantime we will laugh and cry and love and dream.“Cured” is not necessarily the opposite of cancer. It is not the end we should necessarily be searching for. The opposite of cancer is life. I can not sit still in this cave, staring at this party that I can’t seem to get to, waiting for something to change so I can freely walk over. No. I want to live right now. I am having my own party in this tunnel. There’s enough light in here to see your face, and that’s more than enough. I can still see the light at the end of the tunnel, but for now I am happy looking at you instead.
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