In a hummingbird heartbeat

Today was a white out. Or, was that a wash out?

Whatever the fuck it was, it's over now and I sit here with 2 out of 3 cats wondering if what I'm doing is working. So, the same old shit I think about daily is what is going on. God, this heat pad on my back sure feels good. It's the little things.

A rudderless boat, I am. I know what it is that I want, but I don't know how to get it. I have so much to share, but by the time I get to here, it's over. The ideas, the formulation of the plan ...it's all fucking gone.

So much of what is important to survival is the thought process that gets me from this, to that. And, being able to solidify it is important to me so that I can work it out! Why then can't I remember?

Here's the thing: When the magic of the moment is upon us, being in the moment is the experience. One can't very well stop being in the moment to write about it. Reliance upon the memory much later is necessary to regurgitate these ideas and observations. At the time they seem to unravel some sort of problem. There are lots of those, so when the opportunity presents itself, you take it. You take it, you think upon it, you come to conclusions, you formulate a plan, and if you are me, you promptly forget it when the day is done, and the ass is sat.

The day is all about doing. The night is all about reflecting on what was done. If I can't remember shit, that makes it damn near impossible to move past the last problem. The problem is this: I have damn stage IV cancer and I need to get rid of it.

From what I can remember I got really raw in front of this doctor today and suddenly and unexpectedly broke down after pushing out the words, "I just want to live". Hanging my head with huge tears brimming out of my eyes, my friend next to me squeezed my hand while we sat there silent. I was hoping, of all people, he would have some ideas. He sat across from me with that creepy smile he always has, like he just did a wheatgrass juice enema and it sent him to Nirvana. He sat there staring at me, unphased by my failed composure. He looked at me directly in the eyes and flat out told me he wasn't trying to work with cancer patients, only autoimmune disorders. Thanks a lot guy, thanks. I'm glad I'm giving you my money. Awesome.

I'm tired of fighting this. I am not winning right now. I hate the feeling of slipping backwards into the future. Am I supposed to just accept that I won't live much longer, much longer being a couple of more years if I'm lucky? Did I feel better after having the chat? No. No real hope was offered. It felt more like I was staring my mortality in the face and it looked back at me and said, "Yep, you're going to die from this, it's just a matter of when."

I spoke to the doctor about quitting all conventional and winging it. Seriously just going for it with all alternative, with what I can financially afford, which is a total fucking joke. I have about 5K, that is a joke, it takes so much more than that to do alternative, but I am stretched, I'm tired. It's suicide from the point of view of most people from my culture. They are the people who jump over the cliff if encouraged by doctors, so why should I listen to them anyway? They know nothing. I am not deaf. I know what time it is. I'm hearing voices, I'm hearing my inner voice. It's doubtful.

I listen, I observe and I think. I think, and think, and think, and I think that it's all bullshit. All of it. I don't want to do it anymore. I don't want to be a guinea pig. I don't want to be their guinea pig. Nobody can tell me what to do, and I would very much like it if someone did. I would like to trust anyone enough to believe they can help me.

The truth is, nobody knows what will work for sure. Having advanced cancer is more complicated than early stage cancer. It's super-cancer. It's jumped hurdles, swam rivers, held it's breath for it's whole life, become invisible, travelled undetected and survived fire. I've burned right along with it, but I came out weaker, while it turned into a super-monster. My life is a complicated thing because of cancer. I can't explain it to anyone who isn't in the club. It's another planet, it's another universe.

How do you explain what it's like to realize your mortality every second of every waking moment? How do you explain what it feels like to never look at anything with indifference? How can you relay how every beautiful thing in the world means 1,000 times more than it used to? Everybody is going to die, for sure, but, do you think about it constantly? Do you feel your life is under constant threat of attack? That your body is your worst enemy and you are trapped with him in the same confined space until he kills you?

Do you always wonder if you're spending your days, hours, minutes well enough since they are ticking away faster than everyone else you know, as far as they know? People don't go to a doctor unless they're sick. How about 3 times a week, or more? Do you not plan a future because you don't think you will have one? Are you paralyzed with fear and anxiety with each new blood test and scan? They define your life, if you let them.

I don't want to be anybody's brave hero. It's such bullshit. People get off on that labeling, I've seen it, I don't like it. This disease is disgusting, and I don't think any of it is romantic, or brave or that we're hero's. We smile pretty for the camera just like everyone else does, and cry alone. Just like everyone else does.

Tonight what angers me, and by the way we aren't supposed to be getting angry it's bad for the old outlook on life, and happy cells and all of that business. Tonight what angers me, not the first time either, is the indifference my man showed. One would think that for all of the pain and suffering that has transpired that maybe some sensitivity would have evolved. I am fucking dying, albeit slowly at this point. I'm not in the home stretch or anything, but my mind is getting bent over with no lube. Just because I don't look like I'm sick.... it is one more thing that is hard to explain. It's a very lonely place to be. This is already a very lonely place.

People tell me how strong I am, how I inspire them, how they feel bad for me and how I'm going to live because I am so alive that there is no way I will become one of them. I wish it were true. But, each test I get I'm a little worse. I don't care to be strong, I don't even know what that really means. Isn't just the plain will to live strong? Isn't that built into most people? It's kind of part of being alive, isn't it? I'm not stronger than most in that way, but in other ways I am. I was a survivor long before I got cancer. Now that I have cancer people feel they know that about me and it's because of cancer, but it isn't.

What I think I am about to do is the bravest thing I have ever done in my life. I am not saying that I am going to do it right away, this takes planning, but I am thinking hard about doing it very soon. I want to go off of conventional medicine. Only keeping the bone-builder, but losing the hormone treatment. Cold motherfucking turkey. Bitch. This is the biggest decision of my life. Bigger than getting married, moving, career. Bigger than big. This is my life that is being traded. If I'm wrong I could die much faster, much, much faster. Should I risk it?

When I wrote earlier that I didn't think anything about being a brave hero, I meant that that's how some people love to be portrayed, because it feels good. They are sick, they get attention for it and it can be one of the only benefits from what is a ghastly prognosis for many. Like that one crazy woman who pretended she survived 911. She made up this complete lie about a husband that never was, lives she saved, her whole story was fabricated. She was a media darling until the string started unravelling. Then she freaked, and ran. She had craved the attention. She loved being comforted and told how amazing she was. It's cold comfort when you have cancer, but some people really get off on it. I personally find it embarrassing if anyone pulls that with me. Trying to live is just trying to live, it doesn't require bravery. What requires bravery is bucking the system, taking a stand against the odds and without any clue if you will survive. Not following the doctors advice and walking into fire, only to die, that isn't true bravery, but I'll tell you what is. It's brave to walk all the way through once you enter, it is hell. If you do chemo, you need to finish, and that part is very hard, but you have to do it. What real bravery is, is striking out on your own when others tell you not to. If you gut tells you one thing and everyone else tells you another, well, that is a crossroads. Unfortunately for me I don't have the money to do what I really want to do, so I am kind of screwed, I'm stuck combining my medicines.

When I say it's the bravest thing I will ever do, if I were to do it, is because I am not sure if I'm doing the right thing, it's my own idea and nobody is waiting on the other side of my decision clapping loudly, the next second reaching to hand me a trophy and an oversized check with my name on it. I am trying to save my own life. I have a lot of things I want to do still. The more time that ticks by, the more medications I try, the less effective I feel the really good and proper safe medicines will work.

All I know is that my gut is telling me, "Wrong Way!" "The clock is running out, you have to find your way through the maze or you're done, da, da, da, doooooone!" GONG.

There are a lot of decisions to make during life. There are so many crossroads we don't even realize are decisions until after we've made mistakes. Mental maps we create in our minds teach us how to not make those same mistakes again. There is no map for me to follow in this desert/mountain/ocean. It's filled with sand traps, volcano's and venomous creatures. I feel like I have no guidance. I have an idea, but that's it. I have an end result, and that's it. I don't know how I'm supposed to navigate through to the end or who to trust, so I am only trusting myself. That's fucking scary, because I don't know shit except that I've been doing it wrong. Or else whatever I was doing before no longer works. It's terrifying.

I wish a feather would float out of the sky with instructions, exact instructions, nothing impossible, but hard is fine. I'll do hard. I've already been doing it! I would follow all of them to the letter if it would cure me. It's not the battle, I'm not afraid. It's the failure of the battle to win the war. If someone could prove to me that if I were to do chemo one more hellacious, scratch-my-eyes-out, migraine-till-you-want-to-cut-your-head-off, mouth sores bleeding, sick to your stomach, bones throbbing, every joint in pain, legs giving out, vertigo, food tastes like nothing, blurry vision, body on fire, no memory, can't think, can't sleep, ugly every day, lose all light, energy, love and sanity - TIME, but that I would be over this fucking shit of a life dealing with this every damn day, I would do it in a heartbeat!!! In a hummingbird heartbeat.