Caffeine

I have a problem with caffeine.  I'm not supposed to drink it, and its on a long list of things I'm not supposed to do.  I'm OK for awhile, then I hit a slump, and I need something- anything to keep me going.

Caffeine makes it all better.  Caffeine allows me to smile, to joke, to kickstart a mood into jumping and dancing around the double dutch ropes.

It makes me feel close to normal.

Until I crash.  And my adrenal glands are so fatigued that I crash hard.

This makes me want to laugh, probably because it makes me so frustrated.  I'm not talking alcoholism, heroin, a vicious coke habit.

More like a vicious Coke habit.

I don't like coffee.  Even the smell puts me off.  My caffeine of choice is in soda form.

Yesterday I had caffeine.  A glass of diet coke(12 oz.).  And I was interactive.  I was relaxed, thinking good thoughts, and also emotional about the smallest things.

And then I crashed.  became sullen, irritable, frustrated, and felt like I needed to put on a mask, to try and be the softer, warmer guy that people respond to.

Bad habit, and I should cut it out.  But when something allows mde to pull out of the muck for just a while, it sometimes makes me forget that it'll shove me down further into it right after.  

"Cancer is cancer."

I believe I have heard a few wise people say it, but the first one was a man who I greatly admire, and who went through his own... fight?  Battle?  So aggressive.  His own experience with cancer.

He was the first person I talked to that could give me any idea of how things would go down.  And damn if he wasn't right about cancer being cancer.

I sure might have been lucky that this cancer wasn't all over my body, and that I had no outward symptoms, but its a dangerous game quantifying and comparing myself to others, because, in the end, cancer is cancer.  And it fucking sucks.

Thyroid cancer is a slow growing cancer, which, in one way, is great, because if one catches it early, it can be taken care of.  In another way, it means at least ten years of close monitoring to make sure it doesn't come back.

How is this monitored?  By an endocrinologist, checking to see if there is any elevation of chemical that only thyroid cells can make.  In simpler terms, the best way to keep my thyroid cancer from coming back is to eradicate any chance of thyroid tissue (healthy or not) ever growing in my body again.

Of course, I haven't had much luck with endocrinologists.  I was only told by me second one in August that, according to the recent testing, i am relatively cancer free, and not needing another radiation treatment.

That is the good part.  The bad part is that I still feel awful, and the last time I called, the only thing I received from them was a bill.  Sent the day after I contacted them and left a message.

It's tricky, being unwell for this long.  And being unwell in a way that isn't as dramatic looking as the cancer patient image seen on movies and TV.  People tell me I look good.  Which is the opposite of what I feel.  I started by getting defensive.  By getting angry.  I have spent too much of my life perfecting the practice of looking OK, just fine, terrific when I'm not.  So, when I feel awful, and people tell me I look good, I feel like they don't care.

Probably quite untrue.  But fuck it.  I'm difficult right now.

This man told me that people are going to say things so that they don't have to feel bad.  And I've done it myself.  Trying to put a positive spin, think positive, fake it 'til you make it, things'll come around, you'll see, stop being such a baby, buck up, you're just loving this aren't you, being the center of attention, the poor little sick boy, just stop this bullshit and get on with your life.  you know you're OK, so JUST STOP FAKING IT!!!

I'm not fine.  I'm not OK.  I'm not faking it.

I've been unwell for too long, so things tend to normalize.  And i forget to conserve my energy.  And I forget to be defensive, to give myself space.  And I begin to doubt myself.  To doubt I'm that unwell.  So I start pushing.  And I push too hard.  And I collapse.

This process was very obvious when I was still cashiering, which I did all through the treatment until August, when I moved to a different department.  I am an introvert to begin with, so it took a lot of energy to be the final impression of the friendliest store in town, the message stitched in bright yellow on our aprons.  Add to that the constant forced question by hundreds of customers "How are you?"

And they don't want to know any real answer.  They just want to cover the uncomfortable moments spent waiting so close to another human being while their groceries are bagged and they pay for them.

Yes, they weren't all like that.  Fuck if I know why I told any of them, because not one took it in any real way.  Most found it as an avenue to talk about themselves(insert hypocritical alarm going off here). 

So many people tried to help.  And so many people did help.  Help more than I imagined.  And I have my thank you cards here.  And a building stack of papers where I try to write and write and write ways to express gratitude.  But whenever I start, other things start automatically adding themselves to the note.  things like hope and when I get better and other positive affirmations that I don't feel.  So, i stop, angry, because I'm being fake.  I'm not well.  And that's what I want to write.  But then, other things start adding, like all the bullshit I've been through recently, like how I lost my wallet two days ago- at my therapists office, and another Endocrinologist who seemed perfect is notacceptingpatientsatthistime, and the healing retreat that I somehow was able to get the clouds parted enough to plan and make a reality is tripping it over itself and falling apart, and I'm going to have to cancel it, and...

Page after page after page.  What to write?  What to say?

You know who is the most fucking brave person in my eyes?  Merritt Wever.

Here is her Emmy awards acceptance speech, in it's entirety:

"Thank you so much! 
Thank you so much...
Um...
I've gotta go."

 

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.

Prelude to suspicious-- the biopsy

Predate moments:  The biopsy.

Sounds like a band name.  The Biopsies.

After the ultrasound, which proved that, yea verily, there was a lump of something that wasn’t supposed to be in my throat, in my thyroid, and the lump was measured at around 4 centimeters(pretty damned big) and well formed(read- not just a sack of fluid, but firm and not breaking apart), they decided a fine needle biopsy was needed to figure out what it was.  Benign?  Cancerous?  A wad of tissue? 

First off- do not let the whole “fine needle biopsy” fool you.  As much shit as I’ve been through, I believe the biopsies to be the most scarring things that happened.  I would not wish them on anyone.

First off, I went back to the same lab I did the ultrasound, and had the same woman as the lab tech.  She was very eastern European, in speech, and, I suppose in what I stereotype in demeanor.  Pretty tough. 

Only she couldn’t do the biopsy.  She was a tech, and they needed a doctor to do the biopsy.  So, I waited in the dark room, with the bed, and the side medical fixture with all of the doo-hickeys needed for different medical things, and some more technical things, like the swivel light, and cameras and such.  Small metal tray of tools.  And a beautiful painting picturing four women of different ethnicities in garments that billowed out and took up the whole bottom of the picture.  On the wall.  The only thing illuminating in the whole room.  Everything else was dark.

I waited.  Got checked on a couple times by the tech- let me say, she was a nice woman, just not that outwardly sympathetic.  Finally, she came back, and with her was… John Boehner.

Seriously.  This guy looked exactly like John Boehner, only maybe 85% his size.  And he did the breezy doctor talk which shows he had the “I care, but I don’t have to listen to what you say” patter down, and things got real.

First, I was to lie down with a pillow wedged such a way under my shoulders that my neck was bent back to the pretty uncomfortable state.  Meanwhile, I had a long goatee at that time, and the tech proceeded to take tape and secure it onto the side of my chin.  Basically, every time I thought of turning my head, it would vibrate.

So, there I was, in a pretty excruciating position to begin with, and he is applying local anesthetic to my neck.  A little squirt here, a little squirt there.  And we wait.

Small talk.

What the fuck is it with anyone in a position of working in a situation like that who thinks I would want to do any sort of small talk?  All I was focusing on was trying to tense the right muscles in my shoulder and neck so I wouldn’t have severe cramping for the next few weeks.

Oh, and another thought.  This one still gets me.  If you have the room specifically for lying people down, and poking and prodding them, DON’T. PUT. THE. PICTURE. ON. THE. WALL.  If you want something to look at, fine.  You’re an asshole in that situation.  If you are concerned for maybe comfort, but even a simpler thing, focus for the poor individual you are biopsying, put the picture on the Ceiling!!!

Unconventional?  Sure.  But what the fuck do you care?  You’re in and out as fast as you can be.  Just do it, and be surprised how people react to that. 

Seriously.

Onto the best part.

My neck is “properly” numbed, and out comes the needle.  NOT A FINE NEEDLE.  A looooong, big needle.  It would have to be.  Why, you ask?

Well, this is how it goes down in my biopsy:

The doctor takes the needle, and pokes it in somewhere around your collarbone.  He then proceeds to travel it all the way up diagonally to where the lump is.  I would say at least three inches.  But wait, it gets better!  Now that he has confirmation from the ultrasound that he has hit the lump, he begins to vigorously jiggle the needle back and forth, so as to collect cells from said lump.

In spite of the anesthetic, it feels like I want to hack up severe strep throat at this point.

This process is repeated.

Three more times.

It was going to be two, but Boehner said “One more time, for good measure.  Just to be sure”

Cheerful, like he’s dusting off a knickknack.

And the tech… I remember this quite well- the tech spent most of her time bouncing up and down… just in my line of vision.  I don’t know if it was for my benefit… I suppose so… but it was very weird and unacknowledged by anyone in the room.

Then I was done.  Band aid.  Ripping the tape off of my goatee.  The exit is thataway, mister.

I cannot account for the violation I felt with that.  There are much worse things in the world, I guess, but, goddamn it, it was a horrible thing to experience.

Here’s the clincher:

The first biopsy results—Inconclusive.  So now what?  Another biopsy, only this time, Mr. Boehner is not happy.  And he takes it out on me during the vigorous jiggling of the needle.  So much so that I do the only thing I can do.  Moan in pain, and the tech saying “Just another moment.  It’ll be over soon.”

She lied.

September 22nd, 2012

September 22nd is an odd occasion.  Its a festival that I still am understanding.  It is known as the festival of Mabon.

Last year, I was in the process of observing all of the neopagan festivals- ones that were taken from old source, and given new and fresh perspective.

The story of Mabon is a child stolen from his mother after three days of life, who then goes on a journey in the underworld until the sun starts to return in the next spring.  Its about high harvest time, saying goodbye to the sun who has been ebbing away, and making sure you are prepared for the dark of winter.  Its about getting lost, so you can get found.

It’s the first celebration, pagan or otherwise, that deals with the summer ending, and the wheel turning towards the dark, towards rest, towards deeper connection.

So, I made mayonnaise.

I make very good mayonnaise.  Rosemary mayo is my favorite.  The principle is easy enough, its just the making of it that puts people off, that is, unless you have a food processor or blender or whatever.  I like the old school technique, which is all about continuing to whisk away while you dribble the oil in.  

2 cups of oil.  

Drop by drop.  

Your arm gets tired, but you have to be careful to dribble it in slowly, or the mayonnaise will “break”.  I thought the idea of mayonnaise breaking was funny, just such a dramatic way of stating it.

 

It was a Saturday, and I had worked until five.  Now I was trying to prepare things so that I could go walk in Tualatin Hills Nature Park (part of the ritual for the evening.), and I wanted to make sure I had ample time before the waning sun had gone down.   

And I was making mayonnaise when the phone rang.  It was my doctor.  A very, very nice doctor.  Great bedside manner.  But he was getting on in years, and I am pretty sure he is going to retire any day now.

I wasn’t expecting a call.  I was expecting another office visit to discuss the curious thing that had happened.  Five months had gone by with test after test, all that agreed there was a big lump in my throat that shouldn't be there, but the one word that always came up was INCONCLUSIVE. 

I had undergone a fine needle biopsy(more about that later), and the doctor was calling to give me results.

The status had changed from inconclusive to suspicious, and I was to get an appointment as early as possible with an otolaryngologist- an ear, nose, and throat specialist.

The mayonnaise broke that evening.  Twice.  

I was invited to a friends Mabon ritual today, and I told her that I couldn't.  Couldn't face the day and people in that sort of mindset.

The ritual that I had planned that night was four chairs facing outward,a nd asmall table with candle and stones on it.  You sit in each chair and  acknowledge that direction, speaking to your gratitude.  This I did, after getting drunk on hard cider, and stopping several times to break down sobbing. 

How poetic of me.  How dramatic.  How much I want to bury this day, and keep one foot going on in front of the other.  But it keeps on popping up, like a scab looking like its ready to come off, and when I grab and pull, I realize too late that its not healed.  And I start bleeding all over again.