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Fighting the Administrative BS to square off on The Big C

January 17, 2012

The main core in my drive against the Big C and dealing with some administrative issues at the Stanford Cancer Center is derived from watching my father died in the hospital due to a bungling doctor we trusted. I will never forget his flat pasted on pupils in his eyes because of the morphine, no reactive light (If you want to see what it looks like, go on youtube and look up Johnny Cash’s last performance someone filmed at a club–I saw those same eyes and it disturbed me: http://www.youtube.com/watch?v=razI4E1qUYc ) And that deeply planted a conviction within me, a core of resistance and presence. My Dad follows me on every hospital visit. He is standing behind me, hands in his pockets, my Mom behind him, looking over me. I am not alone, my guardian angels are packing heat.

Sometimes the battle is not just with the Big C, but with the medical system, which seems apology free.

So I was scheduled for a Pat scan to determine if The Big C decided to sublet my liver, but no one from oncology or radiology contacted me about that appointment, So I missed an appointment that was to determine what type of chemo cocktail. I go through hurdles to reset the appointment, have to reschedule my premier chemo performance, and get a port to avoid having needles turn my soft veins collapsed into useless ropes.

I talk to the oncologist, She went into some long bureaucratic yada-yadda about how everything she did was support by her colleagues (Translation: circle the wagons and we did nothing wrong).

Fred VS Oncologist

Me: I want to change doctors.

Her: Well if you don’t want to continue with me as your doctor then we have to reschedule you an appointment with another oncologist, and then start the whole process again. And that doctor may proscribe different chemicals.

(When she said that, I felt like she was trying to black mail me into continuing with her to ensure I’d get the immediate care. It pissed me off. Because I also feel when a patient fires a doctor it reflects badly on her, so she was trying to avoid it.)

Me: I don’t want to do that. Let’s go through the first week. I mean you’re going to give me chemo anyway, so what’s the big deal?

Her: It’ll only be a week. It won’t really matter.

Me: I don’t want to wait a week. I want to fight this cancer now. I want to clear my ureters and…

Her: That’s the process.

Me: Don’t I have a say in this?  (Thanks Dad, I think looking over and see my parents nodding and smiling.) I want to take chemo the next day. That is what I want to do. I’m the patient, I can make the decision. I’m taking the responsibility for it. Can do that.

There is a pause her. She backs down.

Her: Well you have to contact them to reschedule…

Me: Why? You have me slated for five days of treatment. Well, what I want is to start chemo on Thursday, a port to avoid pain, and I’ve already made an appointment for the scan of my liver on Wednesday. None of this was my fault, I didn’t receive calls.

The conversation dwindled away. But I could tell she was a little rattled that I fired her. How can someone hold my body for ransom when I’m still wearing it?

So I kept on with phone calls, then followed them up with more phone calls. And instead of getting into arguments all I said to everyone was, “I don’t want to win arguments. People make mistakes, I accept that. The main thing is that we all work together for me to get the best care to get rid of this cancer. That’s the goal.” I believe that approach helped me succeed because it put us all on the same side.

So I wound up getting my port, a follow up scan for possible spread to the liver on Wednesday. And chemo on Thursday. It’s not like I just locked in a great trip to Hawaii and dinner reservations. All I did was set a time for me to run from the goal line at the Big C kickoff, and I’m running, good God, am I running! And Mom and Dad are in the stands proudly pointing at me and cheering.

Don’t let anyone forget you have a say. Draw on what makes you live and throw it back at them, a little chin music, and grind back into them. You matter. I matter. FInd the me in you!

My only problem, will the color of the port placed in my shoulder match the urine bags strapped to my legs? I have to be fashion conscious too!

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