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It’s nearly 1 am. My eyes hurt. My body hurts. It’s been a long week. I used to be amazed at what could happen in a week, but I no longer am. I know how pointless planning can be. How fragile the human body is and that it doesn’t take much to end a life or create one. Sometimes, it comes down to timing, poor decisions and, unfortunately, luck. I’m 110 days post transplant. I have trouble remembering it already. I have a more difficult time remembering December and January, when I fought with everything I had to stay here. It’s less than a year ago and already my mind hurries to wash it away. My childhood is already washed out. I can barely remember it. My teenage years muddle together. Names and faces faded. Each day I struggle, sometimes just to put words together. I find myself in a room wondering why I walked in to it to begin with. My mind isn’t cloudy. I don’t lack focus. I just can’t remember. I wonder sometimes, if thats better. Am I better off barely remembering the days that preceded this one? Can I move forward more solidly as a new me if I can’t remember who I used to be?
I try to push my life forward every day. My head swirls with the things I want to do and the things I have to do. I used to focus on working for other people, pushing myself as hard as I could to make someone else money. I laugh at that these days. Having been forced to stop working and then losing my income was difficult and in a way rewarding. I spent more time at home, every single day that I wasn’t hospitalized. I saw my girlfriend. I saw her in the morning. I saw her when she came home and I see her before she falls asleep. It’s incredible to spend so much time with someone you care about. It’s something I took for granted for many years. You tell yourself everyday that there is always more time. There is always tomorrow. The truth is, there isn’t.
Just a few days ago, as a needle was piercing my spine, my phone rang. First my mother. Followed shortly by my sister. I wasn’t able to answer for the duration of the procedure, but I knew something was wrong. As I was moved to recovery I learned that my father had been admitted to the hospital for heart surgery. At the time, and even to this moment, I worry about my parents. I know, as my health has been tested over the last year, they worry about me. My mother, apologizing, telling me not to worry. I worry. I always worry. My life has been forced into a perpetual state of worry. I have no steady income, no job security, no guarantees. My health is questionable and my future is something I hope to have. As I laid on my back, waiting to be released I wondered if the last time I saw my father, just before my transplant, was going to be the last time I ever saw him alive. What’s worse, is that I am not permitted to board any plane that isn’t a private jet. If his health did deteriorate, how would I get to him. A long cross country drive would be the only way. I wondered how many hours a day I could push behind the wheel. My strength has improved but how strong am I? What am I capable of? Luckily, I don’t have to find out. My father is doing well and it’s an incredible relief.
The last 100 days have been wild on a mental, emotional and physical level. They haven’t been wild in any terms most of you are familiar with because they weren’t wild at all. I have spent most of my days sitting, waiting, thinking and planning. Each day my body grew stronger and certain things began to normalize. It took months for my taste to return and my body evaporated. Fat and muscle disappeared and left me with skin and bones. Nearly 33lbs disappeared. The hair all over my body fell out, including my eye lashes. My skin darkened by the radiation. All of these changes are slowly returning to normal. My hair has begun growing back, to my dismay in some places. The pigmentation from the radiation is fading and I can taste food again. My body is slimmed down to a basic structure. I have to rebuild it. I like this. I don’t like how weak I am. I don’t like that my legs have trouble lifting me. That my arms are incapable of lifting me. That after pushing myself the pain is almost debilitating. I don’t like any of it, but I like the challenge. I like that my entire life needs to be rebuilt from the ground up. I like that the change I am experiencing is complete, from head to toe. Not only do I not feel like me, I don’t look like me either. I will physically become a new person, internally, genetically, emotionally and externally. Could I have achieved the same results with a life coach, personal trainer and some plastic surgery? Not really, but that probably would have been much more affordable.
As I approached 100 I kept clinging to the idea that my life would be better once I got there. I was surprised at how little a difference it ends up making. Yes, I made it. No, life isn’t suddenly normal. It’s not even close. I have a year before things really start to normalize, before I begin to do things in my daily life that most of you take for granted. A year, possibly longer. The 100th day is a marker for certain things, like blood work and a biopsy but it isn’t a ticket to freedom, it isn’t a ticket to anything.
What is more important than anything, and this is what has weighed on my heavily these last few weeks, is recurrence. In about a week, I will know wether or not any cancerous cells were detected in my body, or if any signs of a genetic mutation, the mutation that I had to go to transplant to destroy, had returned. I know that a lot of people think that after transplant, as long as you live, you are fine, cured even. This just simply isn’t true. For some people, perhaps the lucky ones, this is a reality but the reality of the situation is this, every day you don’t have cancer is a good one. Cancer, the word, annoys me. In fact, I fucking hate it. It is far too general of a word to truly describe something as widespread and life threatening as it is. I have, or had, leukemia. I have, or had Acute Lymphoblastic Leukemia, or ALL. I have, or had B-Cell ALL. I have, or had a genetic mutation on my 11th chromosome of my B-Cell. So my cancer, is relatively rare and aggressive. There are statistics that say what my chances of survival are. There are years or research that go behind these numbers. But at the end of the day, as specific as my cancer is to me, its grouped into a category and mislabeled. Cancer.
So what now? Where do I go from here? I hurry up and I wait. It’s a game of chance and I’m deep into it. I find it odd how much I love my life. My life. My life is fractured in so many ways. It’s like a house you forgot you owned that after 30 years of neglect is still standing. It’s yours, it needs work, hell, it needs a lot of work, but its charming and despite everything everyone tells you, you love it to death. I don’t have a choice in terms of having cancer or not, but regardless of that fact, I’m incredibly happy to be here, today, struggling to make my future better than my past. Wouldn’t it have been wonderful to have made that same effort without the pain and fear constantly looming. Wouldn’t that have been wonderful.