Wednesday, September 25, 2013

I was looking at the past postings, and they make me cringe.

I'm falling into something I didn't want to fall into doing this.  I am good at telling stories, but that wasn't what this was about.  The lurid details of the biopsy aren't as important as how I'm still so fucking angry at the way it was done.

I'm angry at this whole damned process.  And, of course, I have problems with anger, so what do I do?  Turn it right back on myself.  Soak it all up, so I don't have to hurt anyone, or make anyone mad at me.

So, its ok that the biopsies were so excruciating.  I probably am making too big of a deal of it anyway.  I mean, they were there to help me, right?  I should be grateful.  I mean, what is wrong with me?

And its ok that the otolaryngologist cut out half my thyroid, and uttered the words 'inconclusive' to me before sending that piece of me back east, where a professional could look at it like we look at supermarket meat.  and that person must have shrugged their shoulders and said "Yep.  Cancer."

And its OK that I waited until after the holidays to get the other half out, because I didn't want to inconvenience my job.

And its OK that the morning I was discharged, loopy with a cut stitched up twice, low on my neck, and only as we sped away did I notice I didn't have a prescription for something that would replace the thing they took out of me.  And when we got back to the hospital, they said they could do nothing, and we'd have to call the doctor's office to get it.

I mean, how stupid was I not to remember that at the hospital?

And its OK that a week after the surgery, I went to see the otolaryngologist, and he couldn't even get right what sorts of medications he had me on.  I mean, he did so well with cutting my thyroid out without damaging anything else, even though it was so tightly packed in there because of all of the fat.(Yes.  he made this comment.)

And its OK that he referred me to an Endocrinologist, who had one good meeting with me, and then dropped off the face of the earth.  Its OK that the nuclear medicine folks were as confused as I was when I showed up expecting them to know of the treatment plan my Endocrinologist was supposed to set up.

And its OK that I was frantically calling the Endocrinologist's office, trying to set up the medication that would drag me back from the deep, deep hypothyroidism I was currently in, because in less than thirty minutes, a pill would arrive with about 130 micrograms of radioactive iodine, a substance volatile enough to keep me away from any sort of human contact for over a week, and leave me with such severe nausea that every medical professional had told me wouldn't happen.

And its OK that I still am not back to health- that I have plateaued with my energy level much lower than it used to be, that the current medication has taken away about a third of my vocal range, and my new Endocrinologist won't return my phone calls.

And finally, its Ok that for thyroid cancer, for stage 1, I didn't have anyone to be an advocate when I needed one.  there was no oncologist, no knowledgeable primary, no individual in the medical field who could sit down with me and tell me things.  Things like why thyroid cancer has no real research going into preventing it, finding out where it comes from, only the cut-out-the-thyroid-and-have-him-on-medication-for-the-rest-of-his-life option.  Or how most Endocrinologists have a very shaky grasp on thyroid cancer, because ther real money is in hormone therapies for weight loss and anti-aging.

No, I should have been my own advocate.  I should have known beforehand.  I should have been able to, even at my most exhausted, depressed, sick, and scared, been able to pull myself up by my bootstraps and soldier on, becoming one of those poster children of how cancer has changed my life for the better.

I don't know if I'm going to do as much retelling as I thought.  Maybe.  Maybe not.

It's like I have a wall of cabinets.  And every time I feel something I don't want to feel, I shove it in one and lock the door.  Only this experience has all the cabinets full and bulging, so that they all are just popping open.  and dumping out their contents.

I'm just not in this to be glib and entertaining.  I'm not in this to be strong and brave.  I'm in this to get all of the shit out and take it all and make something of it.  Make some sort of life.

2 comments:

  1. Reading this makes me angry for you Jacob! Your doctors and the medical profession have let you down. Its not right and its not fair. The medical profession has like most things become about the money. The patient should just follow orders and ask no questions. I say its your body your mind your emotional stability and your money. They have an obligation and have taken an oath to give you proper and appropriate care. Bastards!

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  2. There is plenty of entertainment on the web when we want it. I really appreciate your being real and honest, which is in short supply. I also appreciate the opportunity to see where you were before I knew you and what you've been through, as well as where you are now. It makes me angry, as well, at how you've been treated through all this. My experience was similar, so I know it's all too common. It would take so little effort for doctors to make their patients feel human during these horrific processes, and yet so few do it. Part of what I really like about you is your realness and honesty, you're pretty damn wonderful!

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