Backtrack 1- the endo visit

It comes to Sunday.  A day where I’m not doing anything except maybe slow down and take stock.

Because this ol’ depressed boy, he ain’t what he used to be.  No complete turnaround, but something interesting going on.  Motivation in a negative space.

So, let me backtrack.

First Endo, good first impression, the a complete fucking moron who couldn’t even follow the treatment plan she left for me, and left me in the lurch when I WAS FUCKING RADIOACTIVE. 

Second Endo, a brick wall of staff I continued to bang against until I said fuck it, even if they finally get my information, and stop doing this “Oh, we don’t’ have it, and we have to get it before we even can recognize that you exist” bullshit, how the hell would I trust anything that had to go through them?

Third Endo, a braggart of a seventy year old man, who had firmly entrenched beliefs, and whose main prognosis was “just wait it out.”  And I did.  And called back.  And didn’t receive an answer.  Or a real prescription, for that matter.

So, the search for Endo #4 went far and wide.  It included my chiropractor(probably one of the most galvanizing forces I have in my life right now), my naturopath, and my continued research into it.  After a long process, my chiropractor found one, that somehow got booked up within a few days.

Of course, I received this news while walking across a bridge, and contemplating what it would be like to jump off.  An intense therapy session had left me pretty damned low, and this news sunk me lower.  And I was only halfway across the bridge.  Then received a call directly afterwards about someone else in the same office.  Grand, great, why the hell not?  Couldn’t be worse than what I have been through, right?

Heh. 

Heh heh

hehheheheheheeheehhehhehehehhhHAHAHHAHAHAHAHAHAHAHAHAHHAHAHAHHAAHHAH!!!!!!

heHAH. 

hehehehehHAHHAHHAHEHhehehehehAHHAHAHAHAHAHAHAHHA!!!

I arrive at OHSU- the first time I’ve been up there, and it is very oddly balanced up on a hill in Portland.  I mean, the roads and paths between buildings rise and stoop at sever angles.  Its like if you lost your footing, you’d just roll and keep on rolling until you fell off a cliff somewhere.

Get to the office, lady at the reception desk seems all sweet and apple pie, until I’m waiting, and I overhear her go on a tirade about how Obama is screwing everything up.  And, hell, whatever, have an opinion.  There’s just a time and a place.

I go back, get weighed- weigh actually lower than I expected, go into the examination room with the nurse… and this is when things start to go awry.

In preparation for this appointment, I have four pages of information:  first two pages are my history with Thryroid cancer, operations, radiation, who I’ve seen, who I’m seeing, and drug and supplement information. 

Exactly what they asked for.

And the nurse is tripping over Every. Damned. Supplement. 

“what’s this?  Well, it’s not in the system, so… wait… what’s the next one?”

So much of a headache that she is still there trying to enter stuff when the doctor arrives.

Let me give you a clear view of the examination room.  There’s the door, which is close to the right wall.  This leads to the doctor’s station, where all the equipment, including the computer, and the oh-so-bewheeled doctors chair is.  The center of the room is empty.  On the right side is an uncomfortable stool set next to the examination table, then a comfortable chair in the corner opposite the door, with a little cubby to put things, like coat, umbrella, and bag in.

I immediately go for this chair when I get in.  I have a thing for being in the corner.  My back is to the wall, and I can scan the whole area.  And this is what I’m doing when the doctor comes in.

The nurse isn’t finished, so the doctor is immediately uncomfortable- his place of power(the doctor’s chair) is usurped by a lower henchwoman, so, he starts quietly berating her until she leaves.

He sits down and faces the computer.  Back to me.  And then states he would rather me sit- gestures over to the stool.  So I move.

First real thing he says to me:

“Does your family have any history of thyroid cancer?”

“Nope.  Just me”

“You’re the lucky one.”

I’m going to stop here for a moment, and start

AN OPEN LETTER TO ALL MEDICAL PERSONNEL.

Be who you are with the patient.  Sure, some people don’t like the cold, clinical, professional demeanor.  Fine.  Not everyone is going to like you.

But take this as a general rule:

IF YOU DON’T HAVE A SENSE OF HUMOR, DON’T FUCKING FAKE IT!!!!!!

It came off as mean.  Not even a  trace of dry irony.  Just mean.  “You’re the lucky one.”

Should have just stood up and walked out right there.

Actually, it wouldn’t have mattered as much as I thought, considered even with moving to the uncomfortable stool, he rarely turned toward me and talked. 

The only times he did is when I forced him to listen to me.  Because part of my four pages of preparation included a list of continuing symptoms that seemed to point to Hypothyroidism, despite the huge dose of Synthroid I am currently taking($50.00 for 30 day supply… AFTER INSURANCE).  Then, a list of questions, and a list of possible lab tests suggested as to get a clearer picture of all aspects of the complex impact removing a vital organ like a thyroid can have on my body.

He was after facts.  He was after numbers.  He wasn’t after any sort of real interaction with a human being.  So, my page of questions went unanswered, except for those that I really pushed for.  And any time I asked a question, he directed a rebuttal at me, and not any sort of response.

First real question I got to ask:

“What is your take about including other medications than just the standard dose of T4?”

Answer- a rebuttal about a study on how nine out of ten patients had no significant difference in trying one different medication.  He even wrote down ‘9/10’ on a piece of paper, as if it were meaningful, or if it had some sort of impact other than making me feel like he thought I was stupid and didn’t quite understand a ratio until written down.  I should have asked him “what about the one it did impact?”

Second question, and what I would consider the crisis point of this little drama.  It was me trying not to drown in his seas of numbers, saying:

“Here’s the list of my symptoms.  I have been having these since last April, after my radiation.  From what I have gathered, it isn’t normal for me to have such debilitating problems this far afterwards.”

  This drove it to the climax of “Well, I have to test first to see what is happening.” 

Then he started to rant that I probably had diabetes.  And he wouldn’t let it go.  It was like I had poked a hole in his rational diagnosis, and all he could do to defend himself was lash out.  Which is what he did.

Final question, just to be sure information wasn’t going to be squandered:

“Are you comfortable working with my primary care provider, who is a naturopath?”

Which provided him a rebuttal about how naturopaths must be too stupid to understand differences in thyroid issues.  And believe me, this is quite a tasty dish for Endocrinologists to chew on.

I got to ride the tram, though.  The little hop down the hill into Portland, very similar to the superfluous monorail in Seattle that doesn’t seem to go anywhere, and doesn’t seem to last long enough to enjoy.

Here’s the thing, though.  At every other stage like this with an Endocrinologist, it was pure despondency.  Life sucks.  It isn’t going to get better.  It must be something I’m doing.  Fuck, what is wrong with me?

Nope.  I was pissed.  Fuck, I still am so fucking furious over what that asshole thought he could do. 

And what’s more, later, I got all of the testing back.  And a tiny, tiny letter from him, UPPING THE DOSE OF MY MEDICATION, AND WANTING TO SEE ME AGAIN IN…. EIGHT MONTHS.

Now, my naturopath insists I have an endocrinologist, because… heh, heh… I can’t think of this without laughing… because- if I had an ‘emergency’- then I would have someone who could ‘deal with it’.

Heh, hehhhehehehahahahHAHAHAHAHAHHAHAHAAAAAAAAAAAAAH!

And there was another person, who, in their defense, was just trying to help, told me I should set up another appointment and fight him.   Fuck that.  I’m not wasting more of my money just to try to get a medical profession to get their head out of their ass long enough to see that they have a patient whose symptoms aren’t following the numbers.

And I realize something. 

I realize, that, in the grand scheme of things,

In my perspective, in my overall physical, mental, emotional, spiritual health…

This is progress.

...

It’s Samhain tonight. 

I did two things tonight that were kind of festive.  One, I watched It’s the Great Pumpkin, Charlie Brown!  And two, gorged myself on bread and pumpkin butter.  That’s it.

No ancestor table, no decorations, no pumpkins, there was candy to give to kids, but the only two who showed up didn’t have a costume, and had sacks that were very, very full.  Must have grabbed a lot from the bowl set out in front of the apartment below us.

Last year, I was recuperating, and was too doped up and depressed to try to put something together. 

I had put something together many of the years before, or went and participated with wonderful people in Boulder.  There is something I love about Samhain.  And it’s different than the triclk or treating, or the parties with some of the most fucked up energy of the year.

It was about honoring, and moving into my favorite time of the year.  From Samhain all the way into January.  Just had the best feelings for me.  Some down times, but good feeling.

Last year kicked my ass during this time.  And this year, just not…

Here’s an update.  I am seeing yet another endocrinologist on Tuesday.  I am still so fatigued, all I do is walk and go to therapy and acupuncture and chiropractor and work. 

And I don’t want to deal with people.  I’ve overwhelmed myself that all I want to do is hide until things make sense again, but that is a luxury I just don’t have.

I have the two people around me who care the most for me.  But I don’t even want to be around them. 

It sounds so wrong to say that, and I have been wrestling with so much self-hatred because of it this week.  And its going to be a lot more time before I get a handle on it.

I write this blog having so many things pushing at me.  Who is going to read it?  Will they like what I say?  Will they react badly to it?  Should I give a fuck?

Is the writing sound?  Is it interesting?  Am I writing good sentences, or is it boring?  Should I give a fuck?

Are these my real feelings?  Am I grandstanding because I know people are reading it?  Am I just trying to make people feel sorry for me?

Should I give a fuck?

Seriously, at what point is this just about me getting out all of the stuff that is in my head?

This week has been very hard for me.  Hard enough that I scheduled another appointment with my therapist, because I didn’t know how I was going to make it through the week.

That was hard enough.

I thought I had balanced out, but today, at work, I found myself sliding and sliding.  And its over some of the same fucking familiar ground.

There is something commendable when a company does a gesture to its employees.  However, most of them are a hit-and-miss.  How does one plan something that will take into account every single employee?  So, yeah, I get it.  You’ve got to catch as much as you can.

But today, when the free stuff consisted of nothing I could eat, and the whole prize giveaway is not for every employee, but only the employees chosen at random. 

Could be all petty.  But when you are left out of so many celebrations, you begin to wonder if they are not for you.

I worked at another place that had an employee appreciation party.  Pizza party.  Where the owner stood up and blathered out the thesaurus entry for ‘appreciate’, and we spent money getting him a thank you gift. 

I worked through it, because I didn’t want to sit there and watch everyone eat pizza.

People mean well, mean so well.  But when I hear everyone else talk about how wonderful, did you try, and wasn’t this so good, so great, that tune in my head starts going “One of these things is not like the other…”

And I start to sink.

And there were many other reasons to sink today.  Not just that. 

Its Samhain, and I could care less about ancestors, and the mystical veil being lifted between worlds.  I used to care, it used to be my favorite time of year.  Now, get it the fuck over with.

And the one thing I could have participated in- there was a palm reader.  People lined up, excited, how grand, how intriguing, titillating even.  I heard from many that she was good.  Very good.  Insightful.  Why didn’t I do it?

Because I was building a business quite similar to hers when the shit hit the fan?  And I have just recently shut down my website, and tried to eradicate the whole thing so I don’t continue to think of what I ‘should be’ doing with it?

Because I may have never been really capable of doing readings?  Sure, the intuition was there, but maybe not the coping skills?

Because my last reading was before my first surgery and given by a woman I trusted, a woman I admired, and she and another woman told me that I could overcome this without it being cancer?  That all I had to do was be on the right level, the right wavelength, and then everything would fall into place?

Who knows.  I didn’t do it.  And I worked right next to the room where it was going on.  And I had someone single me out, in what would be perceived as a good way, to ask me why I wasn’t doing the readings? 

So, slip and sink.  Down, down. 

Do I do it to myself on purpose?  Am I just making it worse?  Am I being the victim here?  Am I refusing to see any positive in anything?  Am I just a narcissist who has to do everything in a format that someone may or may not read?  Am I OK, and just making all of this stuff up in my head?  Am I actually selfish and cruel and cold and don’t give a shit about anyone, and will just toss them away after I’ve used them?

And right now, should I give a fuck?

October 24th, 2012

Got up early.  Early surgery. 

The whole morning blurred into motions, actions- getting to the hospital, checking in, going into the pre-operation room, a very tall woman with a key card opened up double doors into the rooms.  I was one of the first in there, got a corner room. 

I was told that only one person could be in the room with me, as they were small rooms.  I chose Steve.  I felt guilty about it, but Steve was the one I wanted there.  Steve has this brilliant ability to make intense situations feel more normal.  He has a social instinct that I admire a lot.  I remember the times he went with me to see my grandmother in the hospital.  I’d get so tongue-tied, but he would talk.  He would talk about normal things, things that took it away from the situation, and so would be a huge relief.

That’s a big part of why I wanted him there.  Although, its not like we could pretend something else was happening. 

There were bags for my clothes and shoes, and I put on a hospital gown and those socks with the gripper bits on the bottom.  There was a place to attach some sort of tube on the hospital gown, and I don’t know if it was a surgery thing, or a way to keep one warm.  The pictograms showed some sort of blowing air hookup. 

Anyway, Steve was there, and the pre-op nurse showed up, going over details.  That’s when I first learned the number system for pain.  And I also started the repetitive question- the simple name and birthday, so simple, but turned out to be such a grounding thing to do all the way through.  I thought it was annoying in the beginning, because I had to repeat it over and over again.

Some switch outs.  My mother in there for a bit, Steve in there, and the nurse and the anesthesiologist.  Never my father.  I believe we contrabanded both my mother and Steve in there.

It was an unending beginning.  Like this beginning.  I was hysterically social, coming up with jokes, and beaming and smiling- doing my best to cover up the terror that was leaking out of everything.  I had to pee every five minutes, and then try to resituate myself in the bed. 

The anesthesiologist was going to be there, monitoring me for the whole thing.  I never knew that, never knew exactly what an anesthesiologist does.  He was warm, human, and it put me at ease a bit.  He also told me that the moment they get ready to take me to the operating room, he’d inject me with something… that’s right- the IV was already set up at that point.

The time came.  I don’t know if I was ready or not.  He injected the stuff, and by the time the bed was mobile and going down the hall, I wasn’t feeling anything bad.  Fuzzy, fuzzy, fuzzy good. 

I was wheeled into the Operating room, which, I believe was one of those observatories… not sure exactly what they’re called, but I didn’t see people really.  I saw some lights close to me, and round object set up high, and I have a vague recollection of maybe counting down.  And that’s it.

When I was young, hell, even to this day, I have this memory that I push at.  It’s a memory of just dark.  Maybe its all just made up, but even from a small age, I believed that it was something to do with before I was born.  Whenever I pushed at it, to try to make sense of it, I’d get this feeling, deep down in my gut, like butterflies or anxiety, but deeper, and more… I don’t know… more subtle.

I try to nudge a the dark time that happened here, and the same feeling occurs.  No real images or memory.  Just dark.

And then conversation.

It sounded like an argument.  Three women in intense tones, and who knows, they might have just been bitching about something.  “O.R.” was mentioned.  And I thought it had something to do with me.

Although I was still pretty far away at that point.  It took me awhile to be able to do anything but listen.  It’s hilarious to think of all of the hospital scenes about people waking up from surgery- about blurry light, and then pop!  Awake. 

No.  I was hearing things for awhile, not putting anything together, still feeling… you know, that’s the thing.  It was one of those few times in my life where I wasn’t trying.  I wasn’t pushing myself to wake up, to get coherent.  I was just letting things be as they were.  And, hell, I probably couldn’t have enough anything to muster up some sort of fight or whatever.  It wasn’t about that.  It was about ease.

And then the edge of pain started to hit.  My neck started as uncomfortable, but then a creeping crick of pain in the back.  No incision pain, just probably how they had my neck placed to better get at the thyroid.

With the pain came my voice.  Barely audible, hoarse, but someone immediately noticed and came over to me.

Debbie.  Damn was she good.  She of course asked me the questions about name and birthday, and I don’t even know if I answered correctly.  I guess she spent all of the time on the computer right next to me, and did everything I asked.  I could not get my neck comfortable, and I don’t know how many times she got another pillow, or moved things around, or got another pillow, or a different pillow.  Not to mention ice shavings, and pain meds.  Oh, the pain meds.  Who knows how many opiates I was on.

This is the paradox of the whole thing.  The moments I started to become clear, and pain was under control, becoming less disjointed, less confused.  I started to feel more and more wonderful.  All of the edges were soft, fantastic.  I was fantastic.  I wasn’t worrying about a thing.  I was so filled with light,a nd happy at that time. 

Joyful.  I can count the times on one hand where I have been joyful.  And I cry now just to think about how pure that time was for me.  And yes, it was probably the drugs, but in the end, does it fucking matter?

I was so responsive to Debbie, and she was just doing her job.  I remember she had brown curly hair, frizzy, which gave more to the floating feeling.  Laugh lines.  She called me “a delight.”  And she was as well.  they were taking me up to my room, I was stable enough to leave, and I reached out my hand, and we kind of fumbled touching hands.  A touch, though.

I was radiant.  Every person I passed by I stared at, beaming, and every person smiled back at me.

And then I got to my room.  Bed lined up straight at the TV, perpendicular to the door and the window.  I wanted the window.  So, when the nurses came in, I simply asked them to turn my bed so I was facing the window.  It wasn’t how the room was set up, but they did it without thinking about it.

I had two nurses.  Two male nurses.  If I had one female nurse, chances are she wouldn’t have been as amenable to moving my bed around.

Paul and Ricardo were a dynamic duo- they were the best situation for me to start recovering.  They were like two sides to the masculinity coin.  One was like an anarchist Moby with glasses and a beard, tattoos and slight of build like ahipster.  The other was relaxed in that self confident way uber-masculin guys are- so self assured, real, he reminded me of pro-baseball player.  He was damned good.  And continued to have to leave, because of a woman down the hall.  He was the only one in the building who could speak Mandarin.

Setting me up in the room, the numbers system, basic stuff.  It was quite a bit of time before I realized no one had told my family that I was up here.  So, I mentioned it, and they got it working.

Then things started to blend into each other.  The uber joyful radiant stage was ending, and leaving me with pain and an increasing nausea.  Anti-nausea meds, more pain pills, and back to something. 

I had moved my bed, so the seating was not so great anymore.  Steve took the comfortable seat that could be unfolded into a bed.  My mother took the other chair, and my father leaned against the windowsill.

I do remember intitially speaking so levelly about all of my hopes and possibilities, so excited, so whatever, and then just drifting off and falling asleep.  Steve stayed with me a lot of the rest of the day.  So much talking to him about positive things, in any other instance I would get frustrated because he didn’t agree or disagree, but for then I didn’t care.

I was obsessed with something so simple.  I wanted to build.  It was so clear to me.  TO build, to build, just to make a strong foundation, and build off of it.

The only other things that happened that night were the head nurse on duty was so fucking Nurse Ratchett, she wanted to know why my bag was on the ground, as if I could bend over and get it out of her way, and she wanted to know why I wasn’t up and walking yet, like I was some sort of fucking lazy bum, and better just cut it out.  But, hell, her bitchiness got me up and moving.  I might hate her to this day, but it pushed me to get going. 

That, and, well, the incision.  It was stitched up, except for a drain tube, which looked like they popped a white balloon animal, and cut asection from the resulting balloon.  This was draining into gauze secured around my neck.  Secured until I started actually moving.  So, the whole night was spent watching another piece of gauze fall to the floor, and pressing the call button while the liquid oozed out of the tube and onto my chest and gown.  I ended up just putting a washrag there while I was lying down.

This all might be interesting, and it might not.  Its more about me taking myself through this again- looking at what I wrote, and remembering.

What I remember is that even after surgery, I felt in better health than I am now.  Of course, then, it was only half my thyroid, and they still had to do the biopsy to see if it actually was cancer.  So, in the grand scheme of things, there was a lump that wasn’t there anymore.  I was free from it. 

I was free.

I was free from action, free from doing anything but being there in the moment, getting better, staring out at the window, where I could see my favorite thing to look at- trees in fog.  Blue and green and hints of gold and dark, dark brown.  Just stared and stared and stared until I couldn’t see it anymore.

I was unstuck from the world.  Until Nurse Ratchett came along.  Then I walked to the end of the hallway, and looked out the window- Sunset highway, overlooking Cedar Hills.  Our first apartment was over there, just beyond some trees.

I can’t believe how idealized this is coming out.  Nausea was intense.  Pain spiked.  But if I had a chance to go back to these moments, I would.

I wasn’t worrying about being a selfish brat.  I wasn’t trying so hard.  I was just being.  It was the only time during this whole process where I just allowed myself to be. 

 

October 23, 2012

The night before my first surgery.

I was terrified.  So nervous.

I had been through a lot in my life- casts, hospital stays, almost surgeries, but never an actual surgery.

I had been spiraling down so many scenarios of what could go wrong.

Actually, it was one fear-based fantasy that continued to play over and over again in my mind.

Something would happen with the anesthetic, and I wouldn't wake up.  I would be in a suspended state for years, and then wake up, and everything would be different.  I wouldn't feel like I was older, but I would be, and everyone else would be too.

Of course I was also afraid I'd die on the table, I'd have complications and be disabled, or the most likely, one little slip, and my vocal chords would be damaged.

Or that nightmare about being immobilized by anesthetic, but still hearing and feeling everything.

Lots of fear.  All about the time that I wouldn't have control over.  Time that I wouldn't be conscious.  Where would I go?  Would I come back?

Both of my parents came out for the surgery, and, well, the last time they met up with me, our dysfunctional dynamic came back.  And I didn't want that to happen this time.  I found the courage to bring it up to both of them.  That this is about me, and not about them, and the moment they make it about them is the moment I ask them to go home.

To be honest, I worried most about my father.  I was so surprised he was coming.  Me and my father never see eye to eye, and I already knew he didn't like the Portland area, so...

But he came.  And give credit where credit is due.

they were staying in a hotel, so they left for the night, and it was just Steve and me.  Lots of holding, close, close.  I am not a big fan of spooning, I tend to have trouble with that much confining contact for more than a few seconds.  But we held on for awhile.

I think I slept a bit.  Just a bit.