2+2=7

I was never really all that good at math.  To this day it remains my father’s greatest disappointment in me that I can’t do anything but the simplest of addition in my head.  I figure if I really needed to do complicated long division on my own, they wouldn’t have invented calculators.  Even simple problems confound me and leave me stumped, grasping for answers that don’t seem to come even with they are probably obvious to everyone else around me.

Today was a bad day, in part because it involved numbers.

In addition to three waiting rooms, two doctors, one fellow (the medical kind), one randy nurse, two separate sets of paperwork (including one set of forms that was 11 pages long), and an interminable three hour wait, I also had my last infinitesimal shred of hope crushed under the heel of modern medicine.

I started at my regular general practitioner for my pre-surgery physical.  My doc, who I’ve been with for about a decade, is a nice enough guy but he always seems like he’s in a hurry and distracted – like my very presence there is something of an inconvenience.  He also isn’t very good with the optimistic bedside manner. When I told him about the esophagectomy, and every time I have seen him since then, his commentary usually goes something like this: “Oh… Geez… that’s too bad… Yeah, that’s a rough one… golly… that’s a shame.”

For this reason we shall call him Dr. Demi-Doom.  He hasn’t come right out and said “Well, you might as well start picking out caskets” but he sure is acting like there is a satin pillow in my near future.

Dr. Demi-Doom just moved into a new office and along with the new digs came a new set of support staff, including a woman that I am calling Nurse Jackée.  She thinks she’s fabulous and sassy and funny and a bit scandalous when in fact she’s just inappropriate and a bit creepy.  She keeps commenting about my tattoo and how “hot” it is.   Today, when I had to disrobe so that I could get an EKG, she handed me a gown and then stood there staring at me for a few moments before saying, “Okay, I’ll give you some privacy.”  When she was putting the electrodes on my chest, the gown started fall open around my nether regions and I grabbed it to keep it closed – she said, “Shoot, I thought I was going to get to be a perv.”

I understand what she’s going for – hence the Nurse Jackée reference – but she doesn’t get the nuances of black woman campiness.  I can say this with authority because it’s almost identical to drag queen campiness and I have known more than a few drag queens in my life.  See, there’s a fine line between diva and disaster on both sides of the target.  Go too far and you come across as desperate and shrill; don’t go far enough and you wind up with inappropriate and creepy.

By the way, I thought of the Nurse Jackée thing and then when I got home I Googled it and of course Funny or Die had already beaten me too it.  Go watch this because it’s really funny and from here on out things in my story aren’t.

I got my EKG and my blood drawn and my urine collected and then had to go to a different place to get a chest X-ray.  This of course meant another waiting room (bland, utilitarian) and more forms (two pages, not bad).

Then this afternoon I went for my second second opinion, this time at UCLA.  You may remember me telling you that they have the #6 ranked gastroenterology department in the country and that they specialize in these types of esophageal cancers.  You may also remember me telling you that the reason I am not having anything major done here is because they don’t take my insurance.  But I wanted to get their take on the situation, even if it meant paying for consultation out of pocket and filling out 11 pages (!!!) worth of forms.  Well, mostly filled out.  I’m sorry, but I don’t know how old my grandparents were when they died and I certainly can’t recite our entire family’s medical history back to the time they came to this country.  I wanted to list a fictional great, great uncle and indicate that he died from syphilis but I figured that I would be the only one who would think that was funny.

The thoracic surgeon I was meeting with sees patients at UCLA’s hematology and oncology center, so it was a big waiting room filled with other cancer patients.  This is where the day really started to go down the toilet.

Last week, the USC cancer hospital waiting room I was in was also filled with cancer patients, but most of them looked like me – healthy-ish, probably just starting or maybe just finishing their journeys with the disease.

But at UCLA the room was filled with people in the throes.  There was one woman in a wheel chair who was so weak she could barely carry on a conversation with the nurse.  A man had a prosthetic leg that was obviously fairly new because it seemed to be causing him a great deal of pain whenever he walked on it.  Another woman with a big hat covering her chemo burned hair broke out into tears as her husband tried to calm her and her teenage daughter furiously played some sort of game on her smartphone.  This was not a good room.

And unfortunately I had a lot of time to absorb every last little detail of it.  There was no traffic going to UCLA so I got there about 45 minutes before my 4:15 appointment.  Then the doctor was running behind so I didn’t actually get brought back into an examining room until 5:00 so about 90 minutes of that room’s desperation and I was ready to go quite, quite mad.  Or quite, quite madder, perhaps.

Then I sat in the examine room for another 45 minutes until finally the doctor came in, or at least who I thought was the doctor. Psych!  He’s the med student doing his fellowship with the doctor, who wanted to go over the case with me before the real doctor came in.  So fine, I talked to George O’Malley and told him why I was there and he told me that the surgery was my only shot and I really didn’t have a choice.

Excuse me, Little Grey, I didn’t come here to hear your opinion on the subject, I came here to talk to the real doctor.  So scurry along Izzie and go get Dr. Shepard.

These are all Grey’s Anatomy references by the way.  Just go with it.

Anyway, so Dr. McGeeky comes in and won’t look me in the eye and immediately starts drawing on a piece of paper, explaining things that I already understand.  He told me that I had a PET scan and an endoscopic ultrasound.  I thought, “I know… I was there.”  Then he told me about my tumor is and how far it has progressed and where it’s located.  All of this I already knew so I gently prodded him to get to the good stuff: what do we do about it?

“Surgery is the standard of care in these cases and it is your only chance for a cure.”

Well, fuck.

I don’t know what I was hoping for.  I guess maybe I wanted him to tell me that because they are the #6 gastroenterology department in the country that they have a special procedure known only to the Top 10 that involves being healed by unicorns with rainbows and cotton candy kisses.

Failing that, I at least wanted him to tell me that the surgery was no big deal.

Instead he kept throwing numbers at me.  10% (that would be mortality rate of the surgery), 20% (the rate of incidences in which the place where they join the stomach and esophagus leaks and they have to go back in to repair it), 30%, (the percentage chance that there really is lymph node involvement even though the scans didn’t show any), 30% (the risk of complications both big and small), and 40% (the chance that despite all of their best efforts, the cancer will still come back within 5 years and kill me).

This was my last shot; my last hope that I had a good option.  I don’t.  And so now all that is really left to do is decide whether or not I’m going to have the surgery.  I know it should be simple.  It’s basic math.  Add the chances that I’ll make it through the surgery fine and will live a long life cancer free, subtract the risks and the pain and the recovery and the major lifestyle changes, and then compare that against the chances that I’ll have of surviving if I don’t have the surgery.

I just wish I was better at math.  And I really wish it was all that simple.

Fight or Flight

I’ve had exactly one real fight in my life.  It was eighth grade and after months (perhaps years) of torment from a junior high school bully I finally decided to stand up for myself and fight back.  So when said bully came up behind me and hit me in the back, as he did almost every day, and called me Fatso or a Lard-ass or Girl or whatever witty nom de plume that he came up with that time, I threw down my books (with a great deal of drama) and turned to face him, fists up, ready for battle.

I threw one punch and missed by a mile.  Then he beat the shit out of me.

I have a very vivid recollection of being on the school bus home, trying not to bleed on my brown pleather jacket.

It looked something like this. It was the late 1970s, leave me alone.

I bring this up because I’ve been getting a lot of e-mails and Facebook comments congratulating me for being so brave and for having such a good attitude in the face of all this cancer stuff.  A friend even went to go so far as say that I was being almost cavalier about it.  Others have encouraged the fight, the battle, and the kicking of cancer’s ass, a phrase I even used a couple of months ago when I first found out.

If I may once again stretch the definition of a word to its breaking point, the “funny” thing about all of this is that I feel neither brave nor cavalier.  I don’t feel cowardly or particularly enthused about it either.  Those who know me well know that I don’t have a good attitude about anything, ever, generally speaking, but in this case I also don’t think I have a necessarily “bad” attitude about it.  I definitely don’t feel like I’m fighting but at the same time, I don’t feel like I’m running away. Well, not yet.

For the last two months I’ve had ups and downs and lots of sideways but through it all what I have mostly had is me.

I don’t really buy into the theory that cancer changes a person.  Instead, I think it amplifies us – it turns up the volume on the parts of our personality that were there all along.  It presents a situation in which who we are is a little more obvious than what we show of ourselves in our normal, everyday lives.  People who were inherently brave before will act bravely as they deal with cancer, it’s just that we haven’t really noticed their bravery before because they never had some sort of major hurdle to get over that required a show of it.  There have been no busloads of nuns and orphans stuck in rising floodwaters to be rescued, so to speak.

I also don’t agree with the whole good attitude/bad attitude thing; that somehow the former is a requirement for survival and the latter is a death sentence.  The late Molly Ivins, a delightfully mouthy columnist who wrote frequently of her cancer travails, once said “I suspect that cancer doesn’t give a rat’s ass whether you have a positive mental attitude.  It just sits in there multiplying away, whether you are admirably stoic or weeping and wailing.  The only reason to have a positive mental attitude is that it makes life better.  It doesn’t cure cancer.”  Amen, sister.

And lastly – and this is really important – I don’t think dealing with cancer is a fight or a battle.  That implies that there are winners and losers and that somehow those who lose are to blame; that if they had only fought harder they could’ve kicked cancer’s ass.  Mary used to call it her “tribulations” and I’m glad because the fact that she died should not imply in any way that she didn’t fight as hard as the person with breast cancer who survived.

I used that ass-kicking phrase when I was first diagnosed and now I regret it.  I have learned that cancer is more complicated than those kinds of platitudes.  There are many more shades of grey in between those black and white castings of good, bad, brave, coward, win, and lose.  At least it is for me.

That’s also important… everyone deals with cancer differently and there are no rights or wrongs.  Well, if cancer makes you do crazy things like wear black shoes with a brown belt or vote for Mitt Romney, then honey that’s just wrong, but in the sassy gay sense of the word not the literal one.   So to all of you who have had cancer or all of you who may get cancer, if you need to put on your boxing gloves and a big smile to face it then go for it.  Likewise if you need to curl up in a ball and scream “Why me?” over and over, then that’s a valid choice also.  Annoying for those around you, but valid nevertheless.

For me, I’ve had moments all over the emotional spectrum.  I’ve found ways to laugh and keep myself entertained but I’ve also cried and cursed and raged.  It’s just that I’ve mostly done it all in private because that’s who I am.  I can write about anything – just wait until the post about the bowel prep I have to go through before the surgery – but expressing those kinds of inner workings in front of other people?  I don’t do that.  You can blame my WASP-y upbringing or you can call me emotionally stunted, but again, that’s just who I am.  I’m a fairly even-keeled kind of guy – I prefer to just get things done without causing a great deal of fuss about it.  Having cancer hasn’t changed that, it has merely amplified it.

On the other hand, my experience so far with cancer has been primarily a mental one.  I haven’t had to go through chemo or radiation or any of the other horrible things that people with cancer have to deal with.  So far the worst thing that has happened is hearing a Muzak version of “Sussudio” while on hold with a doctor’s office.  That nearly killed me.

So we’ll see what happens after the surgery.  It scares the crap out of me (literally – did I mention the bowel prep?) and if it is as bad as I believe it’s going to be, one of my other dominant personality traits will most likely come out – I do a LOT of bitching, moaning, and whining about things.  You have been warned.

Now having said all this, I definitely appreciate the encouragement and thoughts and prayers.  Yes, I even appreciate the prayers.  Those who know me well know that I often rail against organized religion and don’t have a “spiritual” bone in my body but I understand that God and prayer are important to a lot of people and that it gives them comfort so it’s definitely okay with me.  I put all of it in the same bucket… well-wishes, happy thoughts, prayers to God, good vibrations, good juju, mystical energy from the alien overlord Xyrglyph… I’ll take it all.

Say Anything

I talked to a friend of mine earlier tonight for the first time in a couple of weeks.  I thought it was a little weird that we hadn’t spoken much but I am more than a little bit self-involved these days so it wasn’t more than a passing thought every now and then.  But I was taken aback when he told me that he didn’t know what to say to me.  First, this is not a person that usually has a lack of things to say and second, I was shocked a bit that I forgot.  I forgot what it’s like to be on the other side of the cancer relationship.

I remember finding out that my best friend Mary had breast cancer for the first time.  Mary and I had recently started working on Las Vegas travel writing projects together and I called her from a payphone at the Luxor, just steps away from a mechanical pharaoh that rolled around the attractions level blasting “Walk Like an Egyptian.”  I prattled on about that and other Las Vegas minutiae until Mary said, “I have something I need to tell you.”

“That doesn’t sound good,” I said.

“It isn’t,” Mary replied.  “Or at least it isn’t now, but it will be, or at least is should be.  Probably will be.  But now, it’s not good, but maybe not as bad as…”

“Tell me.”

“I have breast cancer.”

My memory sucks.  I don’t really remember anything prior to last Wednesday with anything more than a hazy vagueness, but I remember that moment with stunning clarity.  The noise of the nearby casino, the heft of the big black pay phone receiver, the strains of “Walk Like an Egyptian” hovering in the background like some sort of highly inappropriate soundtrack created by a music editor with absolutely no taste in, you know, music.

“Fuck,” I said.  It may have been “Shit” or “Goddamnit,” I really don’t remember, but it was definitely a curse word.  It summed up the brief moment of panic that I had; the utter helplessness in the situation.  What do you do when your best friend has a disease that could kill her?  Or at the very least suck really, really badly.

Me, being me, I immediately did what I always do when faced with these kind of challenges, which is to jump into action to figure out how to surmount it.  The problem was that there wasn’t anything I could actually do.  This was Mary’s fight and I was just on the sidelines; a cheerleader waving my pom-poms for a really important game.  So, I decided, if that’s the role I needed to take, then take it I would.  My idea: The Cancer Kit.

The Cancer Kit was a package I put together that contained what I viewed as the essentials necessary to get through battling the disease.  Since there would be chemotherapy and that would involve hair loss, I immediately drove to the Liberace Museum to get a bejeweled baseball cap and then went to Serge’s Showgirl Wigs to get appropriately outlandish replacement hair.  To both of our mutual disappointment, they didn’t come with headdresses.

Back in LA I added in a Princess Diana calendar on which to mark off the days of treatment and toys for Mary and her husband Steve’s dogs because one often forgets the children in situations like these.  I got several trashy magazines and a healthy supply of chocolate because of all of our mantras, our favorite as probably this: Chocolate Fixes Everything.

The role I assigned myself in Mary’s cancer life was that of the court jester; the village idiot.  Beyond that, though, we never really talked about it all that much.  I mean, we talked or e-mailed almost every day, but cancer was usually not a topic.  There was simply too much celebrity gossip, political silliness, and food porn to discuss.

But one thing we did agree upon is that cancer happens not only to the person who gets it but to all the people in his or her life.  And we also agreed that just like most medications, results may vary.  Some people want to talk about it endlessly and ask about all the gory details, others feel as though they should keep a respectful distance, some shut down, and others caper madly while wearing those silly hats with the bells on them.  None of these reactions is any less valid than the others.

Like I said, I forgot what it’s like to be on the other side of cancer.  It’s not fun.  Sorry about that.

Now, I don’t want to presume that my having cancer has had some grand impact on your life.  I also don’t want to presume that you, whoever you are reading this, just shrugged and went back to watching the Olympics.  I mean I have to presume that since you are reading this, you are at least a little interested or perhaps, like me, you don’t care about the Olympics and you have nothing better to do.

But regardless, you should know that I get it.  You can say or not say or do or not do or think or worry or cry or shrug or whatever and it’s totally fine and valid.  You’re not going to “bother” me if you call or e-mail.   If I’m not in the mood to talk, I just won’t pick up the phone.  And I’m not going to be offended if you don’t want to call or e-mail or wouldn’t know what to say if you did.  You have your reaction to cancer and I’ll have mine.

Hopefully we’ll have a hearty laugh about it later when neither one of has cancer, okay?

Cancer Bingo

About a week until the scheduled surgery and now less than a week for me to proverbially shit or get off the proverbial pot, proverbially speaking.  I will need to make my decision by no later than Tuesday evening because that is when I will have my last meal.  It’s not literally my last meal – I’ll be able to eat after I recover from the surgery, but I won’t be able to eat very much that is interesting that’s for sure.  So let’s call this my last GOOD meal.

That’s a lot of pressure to put on one meal.  I’ve been putting a lot of thought into it – perhaps entirely too much thought – but what I keep coming back to is Fatburger.  I love me some Fatburger and it fulfills a lot of the criteria that a last GOOD meal should satisfy.  It should be insanely caloric and very, very bad for you; there should be little, if any, redeeming nutritional value to it; and if all possible, the word FAT should be in the title.  But I still have time to decide so if anyone has a better idea, please feel free to let me know.

Today, I went in for my first second opinion.  The second second opinion is on Monday at UCLA, but this first second opinion was at USC Norris Cancer Hospital.  You know… the one with the free valet parking for patients?  I know the real reason they do that is because they have sucky self-parking options but I’m choosing to believe that it’s because they figured that if you’re there, you have cancer and therefore free valet parking is the least they could do.

It was also nice because it meant a short walk from the air conditioned car to the air conditioned building.  Did I mention that the temperature in Los Angeles is 172 billion degrees today?

Anyway, there is more paperwork to fill out and, since this is a hospital, an actual admissions process to go through.  After a short stay in the admissions waiting room (more of an admissions wide spot in the lobby where they stuck a few chairs), I was pulled into a depressingly bland little room with a depressingly bland little man who did not smile at any of my attempts at humor.  In fact, no matter how hard I tried I could not get him to deviate from his prepared script.

“My name is Walter.  I will assist you with your admissions forms today.  I will make a copy of your government issued identification and your health insurance card.  In a moment, I will have copies of the paperwork for your records.”  I kept waiting for him to start talking about his time as the 16th President of the United States.

Yes, I just made a Disneyland Hall of Presidents joke. Booyah!

Walter computed that his work with me was complete so he disconnected himself from his port and went wireless so he could show me where the next waiting room I needed to park myself in was located.

Waiting room #2 was big and airy, with lots of windows overlooking a nice courtyard, today’s newspapers and very current magazines, and a TV playing some sporting games happening in some other country.  The problem with this one was that a lot of the chairs faced each other and there were a lot of people waiting.  Unlike most of the other waiting rooms, this one was at a cancer hospital so you knew that the odds were that most people in the room had cancer or might have cancer or were recovering from cancer.  You’d think this would have created some sort of solidarity but instead what I saw was almost competitive in nature – sly looks as people tried to gauge who was sicker than whom and what type of cancer the person sitting across from you might have.  I could almost hear the game…  Breast 42; Gall Bladder 14; Ovarian 23.  BINGO!

Or maybe it was just me.

My appointment was with an oncologist that we will be calling Dr. Not Fucking Around.  Although she was very nice and tolerated my nervous flapping about with aplomb, she was definitely of the “Conversations are meant to relay information between two people in the most efficient manner possible” type.  Simply put, there was no chatting about it being 172 billion degrees outside or anything else that wasn’t germane to topic at hand.  She wasn’t quite the animatronic Lincoln that Walter was, so I decided to just roll with it.

For the most part, Dr. Not Fucking Around told me what I already knew, which is that surgery was not only my best chance for a cure, it was pretty much my only chance for a cure.  It’s a terrible surgery with life-altering implications, but the other options – a less invasive procedure, chemo or radiation only – were not going to cut it.  They might delay it, but they wouldn’t fix it.

I boiled it down: “So what you’re saying is that if I remove the emotional component of it and stop being such a big, whiny, terrified baby about things, it would be clear that surgery is the only choice here?”

“You’re not being a baby,” she said.  I decided that mean she DID think I was being whiny.  And big.  I think she just called me fat.

The one thing she did stress that is kind of stressing me out is that I should have my surgery done by people who do this kind of surgery all the time and not by people who do it sometimes.  I get that, but at the same time I also feel as though my regular doctors, whom I trust, are all saying that Dr. Frenchy and Dr. James Earl Jones are fantastic surgeons who have the skills necessary to do what needs to be done.  So do I go with known quantities (even if they are known in a two-degrees of separation way) or do I go with people who have better resumes?  I’m inclined to stick with what I’ve got for a few reasons.  First, my regular doctors wouldn’t be able to be involved if I go to a different hospital and I need that kind of stability and second, if I were to cancel now I’d have to start all over and that could mean many, many more weeks of this soul-crushing, brain-busting anxiety before I could get this over with.

But regardless, Dr. Not Fucking Around is referring me to a surgeon at USC who does these procedures all the time and also wanted to give me referrals to former patients who have had the surgery, which I thought was very nice.  I don’t know that I will act upon those referrals but we’ll see.

So that’s it on the cancer front until Monday when I have my pre-operative physical with my regular doctor and my second second opinion with a gastroenterology specialist at UCLA.

BTW – to everyone who has commented, e-mailed, or just thought good thoughts, thank you.  Those who know me well know that I don’t ask for help easily but in this particular instance I can use all of it that I can get.

A Serious Error in Judgment

Throughout my life I have always tried to balance the two sides of my intellectual nature, which can best be summed as follows:

Side 1: Knowledge equals power
Side 2: The dumber you are, the happier you are

This usually manifests itself in a voracious consumption of information until I start to get overwhelmed and then I walk away, tiptoeing along that fine line between the two sides.

Thus far in the cancer saga, I’ve been walking more of a drunkard’s path, zigging into knowledge to the point of near hysteria and then zagging back out into oblivious denial that any of this is really going to be happening. The latter is usually achieved by watching multiple episodes of old sitcoms back to back.  I recently finished watching all seven seasons of “The Golden Girls.”

“You can lead a herring to water but you have to walk really fast or he’ll die.”

The aforementioned zigging, oddly enough, has not been coming from the actual sources like my doctors.  With them I have been taking the basic bits of information they have been giving me but avoiding going into too much detail with them.  I was worried that if I let them get too specific about what they were going to do to me I would run away screaming, never to be found again.

So where I have been getting most of the information that I have been relaying here about the surgery and recovery?  Well, I have been filling in the holes with what I could find on the Internet.  I know, I know… step away from the computer.  But here’s the deal: I work in the Internet world, so we understand each other.  I trust the Internet and all of its inherent untrustworthiness.  I know the Internet and I know when I should believe it and when I shouldn’t and generally speaking the information it gives me, no matter how terrifying, is comforting to my “knowledge is power” side.

Or at least it has been until last night.

Last night was a bad night.  I woke up at 3am and immediately started thinking about all of it – the cancer, the surgery, the recovery.  It was this horrible non-stop litany of terrifying possibilities in my head over and over and over.  I finally gave up thinking I could go back to sleep around 4:15 and got up, answered some e-mails, wrote a post about what I do at four in the morning, and then went to work.

I began wondering if my strategy of not getting the full details from the guys who were going to cut me open was an error in judgment.  Could my trusty Internet have been the equivalent of duct tape on a busted pipe? Were the dumber-you-are gaps in my knowledge-is-power what was causing my full-blown, unable to sleep anxiety attacks?

So I did the dumbest thing I have done thus far in this entire tale of cancer woe: I called Dr. James Earl Jones (one of the two surgeons who will be performing the operation) and I told him to give it to me straight, no chaser, leave nothing out, all the gory details.

This was dumb.  This was really dumb.  This was an epic of dumbness.  It was the Olympics of Dumb and I won every single gold medal and, oddly, a few silvers in the same races in which I had won the gold.

If you are at all squeamish, skip ahead to the place where it says “SQUEAMISH SAFETY ZONE.”

He started with, “Before the surgery a large bore needle will go in your wrist and another in a vein in your neck.”  I should’ve have flung the phone across the room and salted the ground on which I was standing at that point, but I didn’t.  I thought, “This is BEFORE the surgery?!” but what I said was, “Uh-huh…”

The anesthesiologist will talk to me and ask me if, in addition to the regular anesthesia, I want to have an epidural block, which will continue after the surgery is over into the first few days of recovery.  Dr. James Earl Jones said with the utmost of sincerity and urgency, “Tell him yes.”

Once I’m under, they will start sticking tubes into me.  The first will be a chest tube on the right side to drain fluid.  The second is a chest tube on the left side to drain fluid.  The third is a “J-tube,” which goes through my abdomen into my lower intestine and will be used to supply me medicine and, later, nutrients.

(Jejunostomy for those too lazy to look it up and no, it has no relation to the word jejune unfortunately because having a tube stuck into one’s abdomen is the complete opposite of dull)

The next tube is the catheter into my bladder (men everywhere just winced) and the last tube (for now) is the one down my trachea, which will be hooked up to a ventilator.

Dr. Frenchy will cut several small holes in my abdomen and insert laparoscopic tubes, through which he will use cameras to look around to make sure there is no other evidence of cancer.  If he is unable to be satisfied that he is getting a clear enough look with the laparoscopic tools, he will pull those out and simply cut me open across the stomach and do an open laparotomy.  If there is even a speck of something that looks even vaguely cancerous anywhere else, they will close me up and send me off to recovery – it just isn’t worth putting me through the hell of the surgery when it won’t do any good in the long run.

Once satisfied, Dr. Frenchy will take the first steps via the laparoscopic tools (presuming he is still using them) to immobilize my stomach and widen the hole in my diaphragm.

Then Dr. James Earl Jones steps in and makes a large incision on the right side of my chest and uses a rib spreader to gain access.  He will pull my stomach up through the hole in my diaphragm into my chest, clamp off the esophagus and stomach around the tumor, and then cut out the tumor plus several centimeters on either side to ensure there are good margins.  The lymph nodes around the esophagus and stomach will also be removed at this point.

Then he will hook everything back up again by sewing what’s left of the stomach and what’s left of the esophagus back together and put them, more or less back into their proper places (minus the 5 or 6 centimeters they have removed).  Then all of the various incisions they have made are sewn or stapled or glued.

At that point, yet another tube is installed.  This is the NG-tube (nasal-gastric) that goes through the nose into the stomach and will be used to suck out any fluid build-up.

When I wake up in intensive care, all of the aforementioned tubes will still be in place including the breathing tube hooking me up to a ventilator.  And yes, I find that almost as utterly and completely terrifying on it’s own as the rest of it combined.

They will try to get me off the ventilator by the end of the day but all of the other tubes will remain in place for 2-3 days while I am in intensive care, including the catheter and NG-tube down the back of my throat.

The day after my surgery the big excitement will be when they try to get me into a sitting position on the side of the bed.

Once the chest tubes, NG-tube, and catheter can be removed (hopefully by day 3), I will be moved out of intensive care into a regular room.  Note however that the feeding tube stays in.  Also on day 3, they will attempt to get me to take a few steps and I will be given a “few sips of water.”  Note that this will be the first thing I have consumed in 4 days and it will have been 6 days since I had any food.

Somewhere around here is when I face the biggest challenge – the swallow test.  I will swallow some barium liquid and be put into a CAT scan machine to see if there are any leaks where they hooked up the stomach and the esophagus.  If not, we’re having a party.  If so, I am rushed back into the operating room and they do it all over again.  Seriously.  They’ll take more stomach, more esophagus, and try to hook it back up again.  Rinse, lather, repeat.

Also somewhere around here is where I will most likely get the results of the biopsies they have run on the stomach and lymph nodes they removed.  If there is no cancer, party.  If so… well, then all of this has been for naught.

Presuming we get to party, then day 5 I will get clear liquids and day 6 I will get my first “food,” which will consist of something like pureed meat.  Mmmmm, taste the goodness.  If that goes well, I get to have the feeding tube removed.

We gradually work our way up to soft foods and I will be able to swallow pills by day 6 or 7 and then I can be released.

This is all best-case scenario, believe it or not.  Seven days is the minimum I will probably be in the hospital but could be in there for 10 days if there are any complications along the way.

Oh, right, complications… forgot about those.  I had stopped taking notes by the time he got to that part so I can’t recite them all but let’s just say that this is described as one of the most traumatic surgeries that can be done on a person that doesn’t involve fixing some sort of injury and so there are about a dozen different points in the procedure and recovery where it could all go to shit and I wind up dead.

SQUEAMISH SAFETY ZONE


… and then unicorns come in and heal me with rainbows and cotton candy kisses.

So what is my state of mind after all of this information download?  Did it make me feel better to really know what I’m in for?  Fuck, no.  Before, I was freaking out.  Now, I am now in full-blown, screaming-meemie, hysterical panic.  I am fairly convinced that I will not sleep again between now and the surgery.

The one – and I do mean ONE – tiny bit of information that I got that gave me just a moment’s worth of comfort is when I asked Dr. James Earl Jones why he doing the operation with the big cuts instead of the complete laparoscopic approach.  He said, “Because I am going for a total cure here and I need to see what I’m doing.”

What was I thinking?  I blame it on the lack of sleep.  Oh well… I just started watching “Soap” on DVD so I have 4 seasons worth of TV to keep me company while I am wide awake at four in the morning.

I’m officially not having fun.

Those Who Are Tardy Do Not Get Fruit Cup

Things I do at 4am when I can’t sleep:

  • Stare at the ceiling.  It’s white.  There are no tiles to count.
  • Think about work and all of the ways in which I have probably screwed something up or made someone angry
  • Go through YouTube for random clips of old movies.  Couldn’t find the one that the references so this will do:

  • Watch the trash truck come at 4:15am.  It makes a lot of noise for 4:15am.
  • The sunrise.  It’s much less interesting than most people say it is.
  • Think about turning on the TV and then accept the fact that there is absolutely NOTHING good on at 4am.
  • Check my e-mail.  It’s usually spam sent since I checked it before I went to bed.  It is comforting to know that if I ever have erectile dysfunction, I have many options.  Oh and that nice Prince from that African country seems very honest.  I think I’ll help him out.
  • Have a thought process that goes something like this: cancer, surgery, should I have the surgery, what’s the surgery going to be like, will I survive the surgery, cancer, I don’t want to have a catheter, will it hurt when they take the catheter out, will it hurt when they take any of the other tubes out, will I be able to swallow with the ng tube in or will I feel like there’s a tube in my throat, when will I be able to swallow pills, what if I can’t swallow pills because I have to take a lot of pills to manage everything else that is wrong with me, will the cancer come back, cancer, are these the right doctors to be doing this, what should wear to the hospital, will there be a good 3G signal so I’ll be able to check my e-mail for spam about erectile dysfunction, will I have erectile dysfunction after they take the catheter out, cancer, cancer, surgery, cancer, cancer, surgery, cancer.
  • Stare at the ceiling some more.

 

Cancer Porn

No, I’m not just sitting around waiting for Armageddon – there are still lots of things to do between now and the surgery.  The main thing is to obsessively, endlessly troll the Internet reading every last word ever written about esophageal cancer, staging, treatment, and prognosis.  Yes, it’s cancer porn and in many ways its effect on me is remarkably similar to that of real online porn.  My pulse races, my breath comes faster, I get a little sweaty, and then when I’m done all I want to do is eat and go to sleep.  The problem is that cancer porn results in extended hysterical anxiety and trust me, it lasts longer than four hours.

Other than that, this week I’m meeting with (hopefully) two other surgical oncology specialists for second and third opinions about all of this.  The one that is set is on Thursday is with a doctor at USC Norris, which is one of the preeminent  cancer facilities in the world.  How do I know this?  Because in their instructions on how to get there, it indicates that they have free valet parking for all outpatient services.  Yes, it’s just like a Vegas casino.  Hope I win!

The one that is still pending is with a doctor at UCLA’s gastroenterology department.  This place is ranked the 6th best such gastro-program in the world behind the likes of The Mayo Clinic, Duke, and Johns Hopkins.  The first problem with this place is that they don’t have free valet parking.  Once it has been offered to me, it became important to me for some reason.  The second is that they don’t take my insurance so I’ll definitely be coming out of this place with a lighter wallet, but hopefully with more clarity.

The first question I will be asking is whether or not I should have the surgery at all.  Everything I have read (and everything I’ve been told) indicates the answer is yes because chemo and radiation won’t do the job on their own.  But, who knows… maybe one of these docs knows more than the Internet.

The second question I will be asking is whether or not the way Dr. Frenchy and Dr. James Earl Jones will be doing the surgery is the correct approach.

Regarding the latter, according to what I’ve read, there are several ways to do this surgery. The old way is where they flay you open like a sea bass getting ready to go on the grill.  They don’t really do this much anymore unless there is something tricky about where the cancer is located and/or if there are complications during surgery.

The newer way is most often referred to as a minimally invasive esophagectomy (MIE) and there are two ways to do that, which basically add up to minimally invasive (MIE) and really minimally invasive (RMIE – ™ Rick Garman Productions).

RMIE is done entirely with laparoscopic tools. Four 5-10mm holes are made in the right side between the ribs, long thin tubes with cameras and lights go into the holes, and the surgeon disconnects the stomach and cuts out the cancerous part while watching on a monitor instead of looking directly at your insides.  Then six more small holes are cut in the stomach and another in the neck to reconnect everything and remove the part they took out.

MIE is pretty much the same only with the addition of a 3-inch incision made just below the ribs on the right side.  This is to allow the surgeon to be able to take a hands-on approach (literally) to the hooking things back up part.

Dr. Frenchy and Dr. James Earl Jones are planning the MIE approach, although I haven’t been able to get real clarity as to why other than “that’s the way we do it” kind of answers, which never sit well with me.

I haven’t read or been told that there is a significant difference in risks and complications between MIE and RMIE nor is there a big difference in recovery, so I don’t know why it’s important to me, but it is.

I also want a dispassionate third part to tell me the straight skinny on what I have to look forward to after the surgery, because here’s where the cancer porn really starts getting exciting.

Five year survival on stage 1 is 90% unless it’s 80% or 60% or 45%.  It depends on which particular bit of cancer porn you are looking at and the wild variations are mostly because true stage 1 is so rare.  Plus, most people who get this are usually older and that could skew the results as well.

The one thing that most of the cancer porn agrees on is this: even with the surgery and even if it is truly stage 1, it cannot be cured.  There is a better chance that it will come back and kill me at some point than not.

Stupid Internet.

Anyway, after the consultations, presuming I’m really going to do this (which is my presumption but not my final decision yet), I go for a pre-surgery physical on Monday the 13th, a pre-surgery screening on the hospital on Thursday the 16th, and then at the hospital by 6am for the surgery itself, which is scheduled to begin at 7:15am.

Oh, and I have to stop eating on Wednesday afternoon, so my last real meal will be Tuesday night.  Haven’t decided what I’m having yet.  I figure it should be something insanely caloric and artery clogging, because it won’t be with me for long.  Why?  Because Thursday starts the two most dreaded words in the English language: bowel prep.

I’m going to go look at porn now.  The real stuff.  Why?  Because….

August 17th: On This Day in History

  • 1786: Davy Crocket is born
  • 1807: The first commercial steamboat sailed in New York
  • 1893: Mae West is born
  • 1907: Pike’s Place Market opens in Seattle
  • 1915: A category 4 hurricane hits Galveston, Texas
  • 1943: Robert De Niro is born
  • 1953: The first meeting of Narcotic’s Anonymous is held
  • 1958: Belinda Carlisle is born
  • 1960: Sean Penn is born
  • 1969: Hurricane Camille hits the Mississippi coast
  • 1979: Vivian Vance dies
  • 1980: Infant Araria Chamberlin disappears in Australia, taken by a dingo
  • 1982: The first compact discs are released to the public in Germany
  • 1983: Ira Gershwin dies
  • 1998: President Clinton admits that he had an affair with Monica Lewinsky
  • 2008: Michael Phelps becomes the 1st to win 8 gold medals in one Olympics
  • 2012: Rick has his surgery

I don’t know if my thing will make Wikipedia, but I think it should.

Figures of Echoes

I’ve been thinking a lot about Mary these last few weeks.  Most of you know who Mary was but for the record she was my best friend for more than 20 years and she died of breast cancer in 2010.  There is a lot more to her and us than just that but for the purposes of this discussion it will do.

To be honest, Mary is never far from my mind.  I think of her every single day and I still miss her in ways that are impossible to look at too closely because that, my friends, is one dark and scary rabbit hole.  But recently she has been even more present as I stumble along this weird, cancerous path.

By “present” I don’t mean some sort of spiritual manifestation.  My own personal belief system doesn’t involve the concept that after Mary died she had nothing better to do than to hang around watching me sitting on my fat ass watching television.  I believe once you’re gone, you’re gone.  Heaven, hell, and the afterlife?  <Shrug>  You can’t prove to me that they exist but I can’t prove to you that they don’t so let’s just call it a tie and move on with our lives, okay?

What I do believe in are echoes.  I don’t want to get too metaphysical here, but I think people leave behind traces of themselves as they move through their lives.  Just like the echo of a “Hello!” into the Grand Canyon will reverberate back to you long after the word was shouted, I think that the echoes of people and the lives they led are around us all the time.  And I think that sometimes, for whatever reason, those echoes are easier to hear.

You may think all of this has to do with cancer.  Mary had cancer – died from it, despite her and a virtual boatload of doctors’ best efforts.  I have cancer.  Not a hard leap.

But that’s not what it is.  Well, not entirely.

I had a conversation with Mary many years ago about my situation today.  Of course then it was hypothetical.  Because of the Barrett’s Esophagus, I knew I was more prone to esophageal cancer and so it followed that someday I may find myself in the position of having to get an esophagectomy.  Even then I knew it was a particularly gruesome and dangerous surgery.

“If it comes down to that,” I remember saying, “I wouldn’t have the surgery.”

“Yes, you would,” she said.

“No, I wouldn’t,” I said.

“Yes, you would,” she said.

It went on like that for a while until she asked, “What’s the alternative?”

“Sitting on a beach and enjoying tropical cocktails,” was my reply.

I had several reasons for my rationale:

  1. Surgery has a disturbingly high mortality rate.  She pointed out, accurately, that the alternative was death and that death had an even higher mortality rate.  Fair enough.
  2. Even after the surgery, the long-term survival rate is disturbingly low.  Again, she pointed out the survival rate of death, which is even lower.  Still fair.
  3. The quality of life after the surgery involves a very limited diet, a lovely little thing called “dumping” (don’t look it up, just trust me), and other unpleasantness that I didn’t think would be worth it.  This time she suggested that if I died, my quality of life would pretty much be zero.

It’s that conversation that has been echoing around me.  At first it gave me strength.  Those were some good arguments she had.

But lately I’ve begun to wonder… if we could have that conversation today – if she were more than just an echo – how would it go?

Because here’s the deal: I still feel the same way I did when it was just a hypothetical.  I don’t want to have this surgery and to be honest I haven’t decided that I’m going to.

I’m not afraid of death.  Sure, that may change when I’m closer to facing it, but right now it doesn’t scare me.  Pain scares me.  I’m afraid of being incapacitated.  The idea that I’ll never be able to eat normally again and will have to always make sure I’m near a bathroom because my insides have a tendency to randomly flush anything that gets put into them is terrifying.  And the notion that I’d go through all of that and still wind up dying from cancer pisses me off.

Which leads me to wonder what Mary’s side of the conversation would be like.  Would she still defend the idea of doing whatever it takes to stay alive?  Would she think that everything she went through over those 12 years of what she called her “tribulations” with cancer was worth it just to have it end the way it did?

I think she’d probably say a lot of it was.  All of it?  I don’t know.   Those of you who knew her might have an opinion on this but let’s be honest: the best we can really do is “I don’t know.”

There is one part of the conversation that would have to be different today.  Back then we talked about who would take care of me during the long recovery period after the surgery.  There was no question – it would be her.

Put down the phone and delete the e-mail – I know that I have lots of family and friends out there who are willing to help after the surgery and I deeply appreciate it.

But it was supposed to be Mary.

I’m not sure what the point of all of this is.  There probably isn’t one other than my bizarre habit of finding therapeutic value in writing about my emotions rather than experiencing them.  Writing about how terrified I am makes me a little less terrified.  And reading what I’ve written about being terrified makes me less terrified still, as if the second, third, or fifth time the words come back to me they are a little softer, a little less sharp, a little further away.

Almost like an echo.