Learning to Live

We’re closing in on a year and a half since my fateful diagnosis. Many things have changed since that day, as would be expected. The specifics of the changes, however, are not all going as I would have anticipated. Of course, there was the initial shock, rage, despair, what-have-you. Then I began to plan my treatment and how I wanted to handle my life as someone with an invisible timer ticking away above my head.  What was I going to do with “The time I have left?” How was I going to live with “incurable” cancer, and what was going to become of my daughter whose father is living in a health crisis as well?

That was the beginning. That was a mindset quite different from the one I have now. I’ve changed, because you can’t have that kind of bomb dropped on you without becoming drastically different in a lot of ways. I don’t see things the way I did in the beginning. I no longer see this as “terminal.” Many would say that makes me naïve or deluded, but they have no clue what the universe looks like from my angle. They don’t have my perspective.

In the beginning, I was looking for ways to cope. I joined a couple of support groups on Facebook. I shared what was happening openly, as I do with almost everything. I planned to remain at my job for as long as I could work, and I did stay there for a few months. I talked about “quality of life” and how I wanted to spend the time I had. I talked about not knowing how much there was left for me. It was all so bitter and bleak. It was all about dying and death. It was about giving up. It was about accepting my fate as opposed to chasing my destiny.

Well, I grew tired of “fate” rather quickly. All the sadness, death, and pain tasted so sour, I couldn’t keep swallowing it. I just couldn’t do “dying” anymore. I began to research and read. I began to think and ask questions. Since then, I have been learning more and more about how this doesn’t have to kill me and even if it does, it doesn’t have to be for a very very long time. I could easily live another twenty years or so with this, and Hell…I might even be able to eliminate it permanently. So many stories have come my way about people who have beaten the odds and healed from what they were told was not curable. I’ve been learning about alternative treatments and lifestyle changes. Above all, I’ve been learning about the depth and persistence of my own will. And that is what it boils down to: my will.

I’m not interested in dying. Not at this time, and not before I see Violet well into adulthood. There are things I want to do, places I want to see, experiences I want to get lost in. I just turned forty, and I feel like my life is just beginning. There’s a future out there that I want, and I’m going for it. I’ve been slowly implementing lifestyle changes, starting with my diet. I’m not quite that good at it yet, but I’m working on it. I take Rick Simpson Oil twice a day, and I’m always looking at new ideas. The most important part is that I’ve been changing the way I think. I’m shutting down what wants to shut me down. I’m taking words like “terminal”, “No cure,” and “dying” out of my vocabulary. See, that’s the thing. There ARE people who beat this. We just don’t hear of them as often because they aren’t nearly as common as the ones who don’t make it. Most people who are told they have an incurable disease just accept it. My brother accepted it and we lost him at the age of twenty-four. So many people hear that they are going to die, and it feels like they immediately rush right toward it, even though it’s something they dread.

I had to leave the support groups because it felt like that’s all the women in there would talk about. They would discuss “how much time” they had left and talked so much about dying. I couldn’t stomach it. I couldn’t swallow all that despair. I honestly do not believe that I’m dying. I do not believe that I have a terminal illness. Am I chronically ill? Sure, I can deal with that. I’ve been in and out of the hospital so much it would make your head spin. Yes, I’m sick, but that’s just right now. As I said, I am not interested in dying and I’m even less interested in letting others dictate the outcome, including my oncologist (even though I love her to bits). There are way too many people who seem to insist on referring to me as “terminally ill” or “dying” and it is not sitting well with me. Perhaps I’m being overly sensitive about it, but when it happens, I just find myself filling up with rage. I know it’s never meant to be hurtful and it comes from good people, but I can’t help feeling like I’m being rushed toward death by people who keep trying to put nails in my coffin with their words. I feel like they’re giving up on me.

If you’re one of those people and you’re reading this, I love you, but please...STOP. Stop calling me terminal. Stop seeing me as a victim wasting away. Stop putting nails in my coffin. Even if you truly believe that’s where I’m headed, I need you to understand that I don’t believe it and I don’t want to live like I’m dying. Those kinds of words do not help me at all. They make me feel like a living ghost in your life and that’s not what I want to be. I’m here. I’m alive. I’m working toward a future. I’ve made a contingency plan for Violet because no matter what, it would be irresponsible not to, but that’s as far as I’m letting the whole death business go.

I’m not here to die. I’m here to live, and the truth is, NO ONE has any idea how much time we have left. I’ve often said that I could be hit by a bus tomorrow, but I’m not going through every day expecting to become street pizza. I’m not dwelling on it so, why are you? I know I’m ill. I don’t need to be reminded. I have daily pain, exhaustion, and regular sickness to remind me of that. I don’t want to focus on that. I want to focus on the good. I want to raise my daughter. I want to go back to Krav Maga (which I’m hoping to do soon). I’m almost done earning my associate’s degree at Clark College and I want to go back and finish it. Maybe I’ll even go chasing my bachelor’s or higher. I haven’t decided yet. What I am learning from this is not how to bow out gracefully. I’m finally and honestly learning how to LIVE. Now, more than ever, I don’t have an excuse not to. Why would I want to waste it with thoughts of my demise? That just makes no sense.  

So please, if you love me, stop telling people that I’m dying. Stop calling me terminal. We all make our exit at some point and none of us knows when that will be. Let’s not waste any of it by dwelling on death. Now is the time to really and truly live.