Sounding the Ocean with a Six Foot Pole

I won't put dates down. As markers they are too two dimensional in my new world. Sitting in the Aphorisis room, blood being pumped from a plastic tube surgically implanted into my chest. I am told that I should go to the clinic afterwards. This could be anything from low potassium to some life course correction. It is so intense that markers in life's course come so rapidly, for 45 years they came years apart, now they come like rain.

"I'm sorry Mr. Chaney, but your stem cell quality factor was below the requirements for the research protocol and we will have to withdraw you". I wish the doctor could have been that clear. But they seem to have been taught to not be direct. You get the long explanation, the this factor and that factor. Finally having to ask "so what does this mean that I'm not in the protocol?". Reminds me of when I was first diagnosed about a year ago. "Mr. Chaney I'm sorry to have to tell you that you have Multiple Myeloma, a cancer of the bone marrow for which we currently have no cure". No, no one said those words, I had to absorb it over time. First the diagnoses Multiple Myleloma, then reading journals and articles, this treatment, that treatment. Statistical curves, 2 year, 4 years, nothing more. I had to ask "what's the end game, how will I die?". Why did I have to ask, why couldn't someone just tell me, explain, hold my hand and help me. Then doctor answers "don't worry there won't be any pain, we have medicine for that". I know she is trying to help, but no, this is not what I need to know. I need to know how I will die, what the process is that my body will go through, and really underneath something no one can tell me. I need to be ready, not surprised, accepting.

Your blood making capability is compromised, the immune system weakens, and bone dissolves. Cancer is a bad thing. It grows inside you until you are dead.

I'm in Arkansas, in a hotel room. Yesterday I was talking with a women who is four inches shorter than she was a year ago. I'm asking her what bone pain feels like. I need to know, to imagine, to try and be ready, a adapt and not reject life. Asking a doctor or nurse what bone pain is like seems like asking a person from another dimension. The only people in my dimension have Multiple Myeloma. I understand their words, their eyes. Everyone else speaks in code, like a puzzle that will not fit together for me.

I have had this plastic tube implanted in my chest for ten months. They are tying to keep this body working. Cancer grows. To slow it's growth, part of what is me dies and at the same time tries to rebuild and live. I feel all this inside me, this struggle. I feel this inside me.

They thought is was the flu. After several weeks blood test where done. The Community Health Center made an appointment at the local hospital for a bone marrow biopsy. "Mr. Chaney it's good that you came in when you did, we don't believe that you could have lasted more that a few weeks more". Ninety percent of my bone marrow is cancer. What's bone marrow? Oncology, prognosis, aggressive, metastasized, protocol, resistive, hematacrit, aspirant. How do you spell myeloma? How do you spell myeloma.

When you go to the Chemo Room, they ask you a list of questions, one of them is how do you feel today. A rough Arkansas farmer sat next to me, when asked he said "pretty good, you know, it's when I get that chemotherapy that it's a little rough". As the nurse moves on he says to himself "make you feel like you'd just as soon be dead". I understood in ways that I would not want anyone to understand. I cried. I cry a lot, whenever I can.

How do you understand this. I have spent my life trying, being lead to believe that I can, understand how life works. Isn't this what we call rational, the law and economics are based on rational man. Maturity is what I have longed for, being rational, the Buddha, seeing directly. Now when I need my father to explain what is happening, that everything will be all right now, to be held protected. The rational world is falling apart, it doesn't compute, none of the puzzle pieces fit. Not one doctor's explanation fits with another. There are too many pieces, it does no good to ask for more, or yet another piece trying to fit what should all nicely fit together. What I want to hear is "you have Multiple Myeloma, we will use treatment X, if the response is Y, we will follow with treatment Z". For every doctor there is a different treatment, a different way of measuring the response. It's funny, they don't know, they have to see you as a case. We'll try this, try that. I feel like I'm in a revolving door. I'm a three inch (and growing) binder that the doctor picks up for 15 minutes, takes his best shot, and I'm moved out. I am that last sentence, I don't know how I could be anything more. Each time they review the binder, they get some fact wrong. "I see you have had X", "no, I've had Y". I want medicine to be a rational father, to hold me, to guide me through no matter what, but for me now it is a cold maze from Alice in Wonderland. I don't think this will change, and I don't know how to accept it.

The phone rings, many times, then stops. Someone is waiting in anticipation, then at some point gives up.

That moment of letting go.