Fight or Flight



I have come to realize that there is a little bit of insanity that comes with dying. I can write about it. I can tell you about it. I can even video little clips of it happening and share those moments with you, but unless you are dying too, you can’t possibly come close to understanding it. 

You can empathize. You can comfort. You can listen and advise. But you cannot know what it means to sit and wait for your body to become so eaten up with cancer that your organs eventually cease to function. Until you are very ill or very old, you won’t know what it means to get up every day for nine years and search for signs of death in the skin around your eyes. 

For nine years cancer has been in complete control of my life. It has dictated my choices, my decisions, and my options. It has brought people into my life and taken people out of it. It has ruined my teaching career. It has destroyed my vision. It has scarred my body inside and out. It has removed any choice I might one day have made to have children. It has infiltrated my blood and reminds me daily of its advances. There is no cure for my cancer. There are no effective long-term treatments for my cancer. And because chemo doesn't work on my cancer, I don't even look sick. In fact, you'd never know I have cancer unless I took my clothes off, forced your fingers to trace the scars on my body, and showed you I have cancer. 

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Living so intimately with death for so long has become the ultimate game changer. I am different. I want different things. I need different things. I am deep in the world of palliative care and what was once so necessary to me, so important to me, has become just a part of the inevitable closing up of my life. Items on a checklist, affairs to be put in order, arrangements that need to be made. 

I’ve given everything away. With the exception of my dog, my computer, a small wardrobe, and my mother’s jewelry box, I have nothing to show for nearly 35 years of life. This has become my mantra as of late: “Purge. Pack. Go.” 

There is nothing left to give away. There is no scientific tool available to me with which to fight. So I am left with flight. I don’t know how to die. I do know how to leave. 

Purge. Pack. Go. 

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This isn’t what I wanted my life to look like. 

I wanted to be a teacher. I worked hard to be a teacher. I miss being a teacher. So far this has been my story: I grew up. I went to college. I moved to the Queen City. I fell in love. I got cancer. I went to grad school. I became a teacher. I got cancer again. Then I got it again, and again, and again, and again, and again. My entire adult life and nine of the eleven years I’ve been in a relationship with the un-husband have been about cancer. 

This isn’t what I wanted my life to look like. 

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I am tired of cancer. I’ve spent so much time and energy navigating this illness based on how I believed it to be effecting other people. I put on a brave face. I made sure I always looked good when I was out. I created [Love X Infinity]2 and wrote about being a Cancer Princess. I turned my death into something sweet and charming and inspirational. 

And then it got way out of hand. 

People responded in insane and generous ways to the carefully filtered snapshot of my life that I chose to share. They didn’t know what was really in my heart and in my mind. How could they? I wasn’t telling them. 

In case it isn’t clear, I am telling you now. I am sick of cancer dictating my life to me. And I’ll be damned if I let cancer take one more thing. I don’t have much time left. And I really, really, really want to be happy. 

Isn’t the human heart such a funny thing? One can be so full of love and also so full of despair. We have the room and the capacity for both. We can want to be held onto and want to be let go all at the same time. 

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Like it or not, you all are going to have to figure out a way to say goodbye to me. You are going to have to let me go. And I can’t be responsible for what that looks like for you. I can be responsible for my heart and my happiness and my dog. That’s about it. 

Purge. Pack. Go. 

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There are three ways a mammal dies: 

1. It gets separated from the herd and killed. 
2. It knows it is ill and wanders off into the woods to die alone. 
3. Suddenly and accidentally 

A mammal does not die with a thousand people on all sides refusing to let go. A mammal does not die slowly over a period of nine years sharing every moment via social media. A mammal does not die with an audience (unless that mammal is being executed). 

It’s my own fault, but social media has totally hijacked my death. I guess when I first started sharing, it wasn’t clear to me that I actually was going to die from this cancer. I certainly have benefited from allowing you all to share this experience with me, but I need privacy now. I need you to let me go. I have things to do. 

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I am running away from home. I have a lot of reasons for this and I won’t be sharing them with you. I am confident people will gossip. I am certain there will be many who don’t understand. I am sure there will be those who are hurt, angry, and think my actions are unforgivable and selfish. 

I am ok with that. There isn’t a whole lot about cancer and dying that is understandable or forgivable or selfless. 

There is no way of knowing how much time I have left. I suspect that by the end of the summer I will be very, very sick. My body and some of its most important organs are a hot mess of tumors, and the Wizard’s. Got. Nothing. 

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I’ve lived mostly on my own terms; I would like to die on them as well. I don’t want to die in that yellow house on the hill. I don’t want the memory people have of me to be of me wasting away in a bed. I want to settle my affairs and then I want to go have adventures and feel alive, happy, and young. 

I’m not tied to the Wizard and his hospital anymore. In the end, all I will need is a saline drip and a ton of morphine. There are hospitals all over the world that can handle that kind of end-of-life care. And as lovely as it may seem to want to surround me at the end, the only person who truly has a right to be there when I die is the person who gave me life.

Though I am sure there will be a few special diamonds hanging out when the time comes.  

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I am doing what I need to do in order to be happy. I am doing what I need to do to make peace with my life before it is over. I am not asking for understanding. I am not asking for a blessing. I am not even asking for support. I’m only asking to be released into that happiness. 

To those who need or want more from me… 

Tell them I’ve run away with the circus. Tell them the leprechauns dragged me off to Brigadoon. Tell them I was fluent in Pig Latin and could fly, and wanted desperately to fly. 

Tell them that I was just a girl who, once upon a time, lived in a magical kingdom, on top of a hill, in an old yellow house. 

Tell them I had to go away. 

Tell them I wanted to be let go. 

Tell them I fell in love in the middle of my death and I wanted to know what that was like. 

Tell them anything you’d like. I am dying. I am dying and I want to be let go. 

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This story does not have a happy ending. It just doesn’t. And the past several months have been a perfect storm leading up to this moment. I have been more sick and in more pain than I’ve been the entire nine years with this illness. I’ve been in and out of the hospital. I’ve been on narcotics that rocked my world and made me mean. I’ve had my reproductive organs removed and been pumped full of synthetic hormones. And I’ve had to finally accept the reality that is palliative care. I’m literally twiddling my thumbs waiting to die, and that isn’t how I want to live. 

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Several years ago I wrote a “Bucket List.” The last item on that list was “Make it to 35.” I will turn 35 on May 8th. I am shocked that I did it. I actually did it. But what now? I am trying to live while also trying to escape something that is inescapable. I am surrounded with people who love me, but who can’t help but see me through the filter of my illness, not through the filter of my heart.  

I feel as though I am in a room, tied to a chair. Everyone who knows and loves me is in that room. The door opens and in walks the most pathetic excuse of a serial killer you’ve ever seen. He is skinny, and small, and malnourished. It would take nothing to intercept him before he reaches me. No effort at all. He is moving so slowly. It’s taking him years to reach me. And no one in the room, including myself, is doing anything to stop him. We are all frozen with a grotesque and unbearable lightness. We can do nothing but watch him come closer and closer and closer. 

I didn't know I just needed someone to pick up the chair. 

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I don’t know what I want to do with this time I have left. My options are as limited as they are wide open. I live so squarely in the middle of two worlds that I just don’t know what to do with myself most days. 

I’m living an accelerated life. I’m learning things one isn’t supposed to learn until one is a very old lady. It is exciting, scary, and totally overwhelming. 

But here are the most important things I’ve learned thus far: 

Sometimes, you have to make the decision that no matter what, you are going to be kind and quiet. You are going to cook dinner and clean up. You are going to hope for forgiveness and peace. You are going to move on. You are going to ask to be let go. 

And you are going to love yourself the best way you know how. 

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Please don’t come to the yellow house on the hill. I am not there. Give Christopher your love and support, but give him space and privacy and time. He is the best part of my life and has done nothing but love me through all of this. He is one of my most important people and no matter where this cancer takes me, he will always be in my heart and I will be in his.