Talking Me Down off the Ledge

Gastro-Guy has been on vacation for the last couple of weeks and just returned to work today to find a somewhat hysterical message from me waiting for him.  I’m not really hysterical but anxiety level is creeping steadily upward and I sort of needed a familiar voice to calm me down instead of those coming from all of these new-fangled doctors that I have been seeing lately.

He reassured me of several things.  First, he confirmed that in his opinion, Dr. Frenchy is, in fact, the guy I want cutting into me.  As Gastro-Guy put it, “You pick a surgeon based on skill, not on personality.”  Good advice and officially taken to heart.

Second, he agreed that Dr. Frenchy and Dr. Wile E. Coyote, Super Genius are probably skeptical of the Stage 1 diagnosis for the very reasons I outlined in my post on Friday.  In the last 5 years, Gastro-Guy has sent them only a couple of real Stage 1 patients so they are very, very rare.  However, he still firmly believes that it is Stage 1 for me and put a 90-95% probability on it.  Being a gamblin’ man, those odds are appealing to me.

Then again, many slot machines are set at 90-95% payback, and we know how often those actually come up with jackpots so we wait until the PET scan to actually come all the way off the ledge.

The Last Steak

The Smokehouse in Burbank, California, July 15th.

In attendance: LeeAnn, Chuck, Wes, Nettie, Diana, Steve, Laura, and Steve (different one).

Consumed: 7 or 8 pieces of the cheesy garlic bread; onion rings; a cup of the French onion soup; a 12 ounce Filet Mignon; a baked potato with butter, sour cream, and chives; caramelized onions; a chocolate mousse cake; and 3 glasses of pinot grigio.

The Food Bucket List has gotten a bit smaller.  My waistline has gotten a bit bigger.

It’s All Making Sense Now

I had kind of a bad reaction after I met Dr. Frenchy, which I was chalking up to him not being a teddy bear of a man.  Today I met with the oncologist and now a lot of stuff is starting to make sense to me.  I realize that my reaction to Dr. Frenchy was not because of him it was because of what he was saying, even if he wasn’t really saying it directly.

I really liked the oncologist, whom we will henceforth refer to as Dr. Wile E Coyote, Super Genius, because his name sounds either like a cartoon character or like some sort of roadrunner catching device built by Acme.  Dr. Wile E Coyote, Super Genius has all of the warmth I was looking for, was brimming with information and straight-talking advice, and offered me a job after he saw my binder.

But here’s the thing… I was freaking out a bit after meeting with him because of the aforementioned clarity.  What is clear to me now is that neither Dr. Frenchy nor Dr. Wile E Coyote, Super Genius really believe that I have Stage 1B cancer. They think it’s worse.

Esophageal cancer is a tricky little bitch.  There are usually no symptoms until someone notices that they are having a hard time swallowing.  At this point the tumor is so large that is constricting the esophagus and has spread so far that there is very little that can be done about.  Stage 3 is the most common diagnosis and Stage 4 is not too far behind.

A Stage 1 diagnosis is rare and so both doctors are preparing both themselves and me for what could be some bad news.  Neither are doing it directly – they are attacking things in a fairly oblique way – but that’s pretty much where their heads are at.

This has me freaked out on multiple levels, but all is not lost yet.  As described in other postings, I’ve known about this issue for years and have been monitored regularly.  There was no evidence of any nastyness on the endoscopy before the one that caught the cancer so it is very, very early for me. Stage 1 is absolutely possible and, in fact, likely.

But this is where the last post about staging becomes important.  The lines between Stage 1 (which is fixable and has a high long-term survival rate) and Stage 2 (which is a coin toss at best) and Stage 3 (which involves “torture” as Dr. Wile E Coyote, Super Genius put it and pretty lousy odds) are razor thin.  One silly lymph node and I’m at a heads or tails 50%.  Three lousy lymph nodes and I’m setting up my umbrella on the beach.

So Dr. Wile E Coyote, Super Genius agreed that there is no need for chemo or radiation before the surgery provided we can validate that is really is Stage 1.  He called Dr. Frenchy and they decided to cancel the CAT scan and do the full-on PET scan instead.

Of course the week I wasted trying to get the CAT scan scheduled (“There has to be clowns…”) is now really wasted and another week will probably be scrubbed as they try to get all the approvals and what not to schedule the PET scan.

And yes, there will be more forms and hold music.

All the World’s a Stage

Before we go any farther it is important to have a brief digression into the various types, stages, and potential outcomes for esophageal cancer. This will become key soon for reasons that will become obvious.

There are two types of esophageal cancer.  Squamous sarcoma is one and it usually occurs in the upper part of the esophagus and is usually caused by things like smoking and drinking.  It is nasty and rarely survivable.

Andenocarcinoma is the other and it happens lower in the esophagus, usually caused by acid reflux. This is the kind I have and it too can be nasty but it depends a lot on how far it has progressed.

Stage 1A is what Gastro-Guy originally thought I had – that’s the cancer with an asterisk or carcinoma in situ.  The cancer is just sitting there on top of the tissue not really doing anything other than looking around, trying to decide where it’s going to go.  It’s like Hitler before he invaded Poland.  This is easy to get rid of through a simple outpatient procedure and the recurrence rate is negligible.

Stage 1B is what Gastro-Guy thinks I have after going in there with his fancy toys.  It means that the cancer has invaded Poland (aka the sub-mucosal layer of the esophagus) but it hasn’t gone any further.  The most common treatment is the esophagectomy surgery that I have described and the recurrence rate is very low – 5 year survival is in the 90-95% range.

Stage 2 is when the cancer has moved on to Denmark and Norway, otherwise known as 1 or 2 lymph nodes near the tumor.  The treatment here involves chemo and radiation to try to ensure that it isn’t spreading anywhere else and THEN the surgery.  Survival drops precipitously here and is only around 50%.

Stage 3 is when the cancer has marched into Belgium, Holland, and Luxembourg, also known as more than 2 lymph nodes.  That’s right 3 or more lymph nodes is Stage 3.  Treatment is high dose chemo and radiation – the kind you often have to be hospitalized for – and then surgery.  Survival is only around 10%.

Stage 4 is France.  Or Russia. Or Egypt.  Basically anywhere in any other part of the body.  At that point it is time to go sit on a beach somewhere and enjoy the view.

The short version of all of this is that If what I have isn’t stage 1, well, then it becomes a whole other kind of fancy cocktail with fruit hanging off the rim  (I refuse to use sports metaphors like ball game and I don’t eat seafood so kettle of fish is out).

Scared yet?

 

My Food Bucket List

As mentioned, what I will be able to eat after the surgery will be severely limited.  See, my stomach will be partially cut out and then the rest of it will be pulled up to be attached to what’s left of the esophagus.  This means the stomach looks more like a tube than a sack – it’s sort of the same thing that happens for morbidly obese people who get the lap band surgery.  Also, part of my esophagus will be cut out and that’s the thing that mushes up food as it heads down toward your stomach.

The details of the limitations are TBD and will depend on how much they have to cut out, but generally speaking I can expect to have to eat several small meals a day instead of a few regular ones, and anything tough, fatty, sugary, spicy, or acidic will be off the table (literally).

So, with that in mind, I am developing a Food Bucket List – a list of all of the food I want to eat one last time before I can’t eat them anymore.

It’s a long list but it involves all manner of cheeseburgers (Fatburger, Rick’s, and In-n-Out are way up near the top), Zankou chicken with the pita bread and garlic sauce, Kentucky Fried Chicken, a really good spaghetti and meatballs, a really good chicken carbonara, anything with bacon, and a huge steak with a massive baked potato slathered in butter and sour cream on the side.

Regarding the latter, a bunch of friends and I are going out this Sunday to the Smokehouse in Burbank.  I hate that it may very well be the last steak I ever eat but I can’t wait to eat it!

And again, yes, I totally get the irony in all this.

Annoying Thing About Cancer #24

The hold music.  When one has cancer one needs to schedule a lot of things – doctor’s appointments, mainly, but also tests, procedures, referral recommendations… the list goes on and on.  And since one must call to schedule most of these things, one is often placed on hold.  As a general rule, so far, the hold music sucks.  I have heard Musak versions of Phil Collins’ “One More Night,” “We’ve Only Just Begun” by the Carpenters, and “Send in the Clowns.”  You’d think a Musak version of the latter would be redundant, but apparently not.

Annoying Thing About Cancer #37

Paperwork.  There is a lot of paperwork associated with cancer.  I’m seeing a lot of new doctors and every one of them has about 6 pages worth of forms to fill out that cover everything from my height and weight to my family’s medical history back to the time we came to America.  Then there are the medical leave forms for work; the disability forms for insurance; the temporary disabled parking permit applications… I only wish it was improving my penmanship.

Beauty School Dropout

I met with the surgeon today, finally.  For the purposes of this discussion we’ll call him Dr. Frenchy, partly because he’s French and partly because it makes me think of Didi Conn in “Grease.”  He doesn’t remind me of Didi Conn in “Grease” but I think you should always attempt to find ways to associate things in your life to characters from movie musicals of the 1970s and 80s.  I’m still waiting to meet someone that I can call Rizzo and/or Kira.  (look it up – that’s what Google is for).

Now, here’s the thing about stereotypes – they are often unfair and incorrect.  I know that seems like a leap in context but stay with me.  For instance, the French are often described as somewhat aloof.  And surgeons, in general, are not often described as being warm, cuddly human beings.

Please to note that Dr. Frenchy is both French and a surgeon.  Please to draw your own conclusions to those two facts.

Look, I’m not saying that I need a surgeon that is going to hug me and bake me cookies but this is a big, surgery so a little bit of hand-holding would be appreciated.  Call me a wuss.  It wouldn’t be the first time.

But Dr. Frenchy gave me the lowdown in a briskly efficient manner, and almost none of it involved cookies:

  • He only completes about 1 in every 5 of these types of surgeries because most of the time when he gets in there the cancer is worse than they thought it was and at that point it isn’t worth putting the patient through it
  • He wants me to go meet with an oncologist and a cardiothoracic surgeon, the former to determine if there should be any chemo or radiation before or after surgery and the latter to reach up into my chest and connect stuff after Dr. Frenchy has disconnected stuff

Now, there was a bit of good news.  Because my tumor is so small, the amount of my esophagus and stomach that have to be removed is fairly small and so the recovery and it’s long-term implications are not as severe.  I should be able to be working from home after a couple of weeks and although I’ll probably never eat “normally” again, and certainly won’t get to enjoy many of my favorite foods, it won’t be quite as militant diet as I was anticipating it would be.

I have to go get a CAT scan and then I have to see an oncologist this Friday.  That would be the 13th.  I’m going to try not to read too much into that.  Then the cardio-God is next week.  Surgery probably not until the last week of July at the earliest.

 

 

Ties that Binder

I’m a bit of a control freak.  Okay, maybe “bit of a” is a bit of an understatement.  Yes, someone apparently gave me OCD for my birthday a few years ago because I’m really big on the whole organization concept.

I figured out why about two years ago.  My best friend Mary was dying of breast cancer and I went to her house a couple of days before she actually passed away to stay until the end.  Part of the regimen at that point involved lots of different medications at lots of times.  To keep himself organized, Mary’s husband Steve was writing doses and times down on a torn piece of paper.  I looked at that and said, “Oh no… no, no, no.”  I then went up to Mary’s computer and made a spreadsheet with color coding.

Here’s the thing… when you are faced with things that you can’t control, things like spreadsheets can be comforting.  Spreadsheets make sense.  There are rows and columns and Auto-Sum – it adds stuff for you!  For a person who can’t do anything but the most basic of addition and subtraction in his head this is incredibly satisfying.

So that brings me to the binder.  Yes, there’s a cancer binder – it has tabs and everything.  Shut up.  It makes me feel better.