Time Is Up

WE ARE TOLD THAT WE ALL HAVE A CERTAIN AMOUNT OF TIME IN THIS LIFE. WE BELIEVE THAT, AND WE NEED TO BECAUSE IT GIVES MEANING TO OUR ACTIONS AND KEEPS US STRIVING TOWARDS SOMETHING WONDERFUL.  I KEEP THINKING I DON’T HAVE ENOUGH TIME BUT I'M REALIZING THAT I'M LOOKING AT IT WRONG.  I HAVE ALL THE TIME I NEED.  I JUST HAVE TO CHANGE ONE THING – MY BELIEF ABOUT THAT AMOUNT OF TIME.  IT'S LIKE BELIEVING THAT YOU’VE JUST BEEN BORN, BUT INSTEAD OF 80 YEARS HERE, YOU WILL HAVE 2, MAYBE LESS.  BECAUSE OF THAT, MY ACTIONS WILL HAVE MORE MEANING, I WILL STRIVE EVEN HARDER, I WILL LIVE MORE.  ONLY CONDITION : I MUST MOVE MUCH FASTER. LETS GET GOING.

Ow.

Well, surgery recovery has become WAY easier now that I only have one incision to worry about.  I'm finding that not moving around a lot gives rise to much watching of television and bush-wacking of the internet.  I seem to be watching an awful lot of survival shows - go figure right? - ones where they drop them off in the middle of nowhere with just three tacks, a compass and a blueberry and they have to fight their way back to civilization.   I suppose that it's endearing to watch people struggle and it gives me a warm feeling to know that, no matter what, I can take a shower every day.

David found some interesting comics from a great webcomic www.xkcd.com.  Apparently, he is dealing with a similar situation with his wife, different type of cancer though.  I thought they were cool.

I am currently just smothering myself in the every day.  The awesome moments that we have several times a day: lounging around with the family talking and laughing, waking up every morning glad that you're still here; eating a particularly good grape.  These things are good.  They make me feel lucky.

For now, taking things slowly.  I keep overdoing it a little every day and I pay for it all evening.  Thank goodness for pain medication.  Feels like your insides are going to pop through to the outside.  Very Ridley Scott.

Meeting with the oncologist tomorrow to start the new war plan.  I am anxious and excited to get this going as soon as we can.  Action means we stay at least one step ahead of all this and any small amount of control makes me feel better.  I hope all of you have a wonderful evening surrounded by the small things that make you feel lucky.

Love to you all~

Well, shoot....

Well, things did not turn out as I had planned. To say I am disappointed would be a huge understatement - much like calling WWII a "spot of bother.". When they opened me up they found masses on the abdominal wall that were cancerous. Sooooo, they took samples, played with my liver a little (which is fine), and sewed me back up.

I am officially Stage 4.

Next step is a chemo plan to hopefully kill the masses and continue to shrink the growth in my esophagus and stomach. That will be the plan until it isn't necessary anymore.

Love you all.

Well, Smack My Ass and Call Me Cthulhu....

First and foremost, here is the completely awesome picture that a deeply cool chick spent TONS of time drawing for me.  It's my inspiration picture, I'm framing it and putting it in my hospital room as a source of inspiration to get better fast - I titled it, "Determination."  Thanks Holly, you rock.

Secondly, had all the pre-op tests and whatnot on Thursday and here is the general overview.

I NAILED the pulmonary function test, function was above average so that's a plus.  Suck it lungs.  Met with both surgeons and actually made one of them laugh.  Well, David did actually.  He asked him if we could keep the pieces they cut out.  There was a slight pause, he laughed and said in a thick accent, "Um, no."  Apparently, they need those pieces for the pathology lab so they can be sure that they grabbed everything.  He did give me an awesome little booklet of "Your New Esophagus" or some equivalent of that.  Here is a diagram of how my new insides will look:

I will have a new little tube-sock stomach basically in my chest.  So, if I ever overeat, I will have a lump in my chest?!?   Well, won't happen, so I guess no sense in worrying about it.  The feeding tube is sexy, isn't it?  David is going to put googly eyes on it just to keep things interesting - nothing like anthropomorphizing something ACTIVELY coming out of your body.   I will have that lovely little ripcord for about 3 weeks after I come home.  I will have to push a "paste", for lack of a better word, through it several times a day and gradually I will mix in more regular oral food and decrease the feeding tube fun time until they just pull it out.  Hope my chute doesn't blow when they do.....

We have to be at the hospital at the glorious hour of 6am.  Surgery begins at 7:30am and will last approximately 7-8 hours.  They will open me in the front and in the side, towards the back.  They take out the upper part of the esophagus and the top part of the stomach.  Then they stitch the damned thing up and push it up into my chest and reattach it to the bottom part of the esophagus.  The day after surgery, they will want me up and walking.  I cannot even believe that.  I'll spend about two days in ICU and then they will move me to a regular room for the rest of my stay.

About 6-7 days after, they will have me swallow a colored liquid and if nothing drains out through the drainage tubes coming out of me like Dr. Octagonapus from Spider Man, then I am good to go and there are no perforations along the reattachment area.   If anything leaks, then we all scream and run around the room flailing our hands around.  Well, actually, they wait another day or two, give it time to heal some more and then they check again.

They'll want me up and walking every day, several times a day, (did I mention all the drainage tubes that will be coming out of me? and the catheter and a lovely tube running down my nose and into my esophagus so my stomach/tube sock doesn't fill up with air and place too much pressure on my newly crocheted esophagus) plus breathing exercises and I'll tell you why....  Working around in there must be very tight and cramped, lots of other big organs are in the way and generally being jerks.  So, when they intubate me, they will only send oxygen into one lung.  As a result, the other lung will naturally deflate and move out of the way so they can get in there and do their bidness.  I am just a little creeped out by this, but what the hell do I know.  So, I get to do breathing exercises to kee me from contracting pneumonia - I am sure that Maggie knows ALL about these.

Diet: Clear Liquid, then Full Liquid, then Soft Foods and then slowly start introducing some regular food a little bit at a time.  I should be able to eat somewhat regularly in about six months and full recovery within a year from surgery.  For quite a while, I will be eating about 8 times a day and literally eating a "bite" at a time.   Good thing is, with a much smaller stomach, as long as I behave, I should be able to stay trim for the rest of my life.  Gotta glean all the good stuff you can.

More soon, love you all.

Random Things

Running 'round like crazy trying to get every last sock washed and paperwork seen to before next week.  Went to a "Look Good...Feel Better" event where they teach you how to manage make-up and wig styling when chemo has robbed you of your rosy glow....and your eyelashes.....and about half of your eyebrows.  Apparently, it doesn't rob you of a sense of humor.  I was amidst ladies with a median age of about 60 and everyone threw off their wigs and dug into mascara, eyebrow pencils and intensive repair eye creams.  This is how it works:  vendors like MAC, Estee Lauder and the like, donate really nice products that go into a special kit.  Then lovely people who volunteer their time, including a cosmetologist,  go through the whole process with you about moisturizing, staying out of the sun and how to draw a passable eyebrow.  They feed you a light snack and send you toddling home with all the makeup in your kit.  People are incredible.

Tomorrow is the big pre-op festival at Northwestern.  Pulmonary function tests, tons of blood work, meeting with a nutritionist to learn my new and fabulous diet, meetings with the two surgeons and topping it all off with a lovely ECG.  Gotta be there at 7:30am so tonight David and I will have the bedtime of a 5 year old.  I am sure it will be a grueling day but I should have a great idea of what the surgery procedure will be, exact time lines for recovery etc and be able ask LOTS of questions.  Then I can pass all that information along here and we will all know what the hell is going on.

More tomorrow ;)

WHA...WHA?

First of all, let me begin with this:

Secondly: surgery is currently scheduled for April 24th.

WHA..WHA? 

Yes, in 12 days they will be slicing me open like a bagel and removing, well, what-the-hell-ever they think needs to be removed, I suppose.  All kidding aside?  I am just a LITTLE freaked out by how suddenly this is all coming about.  I guess part of me is relieved as well, I can move past this phase and get on with the being alive part - sans Jeffrey. 

I asked myself if there was anything I wanted to accomplish before the surgery date.  My answer was surprising and simple.  I wanted to go for a bike ride, eat at this amazing Indian restaurant David knows about, sit in the sun and spend as much time with my family as I could.  Weird how you think you have this long list of things you hope to do/accomplish in your life and when it comes down to it, you could probably fit it all on a sticky note.

Looks like I will be in residence at Northwestern for anywhere from 7-14 days.  Most bench-markers have me thrown out after 10 days.  The most important pre-requisite I have to pass before they will let me out is the ability to swallow without internally looking like a spray cheese canister.  Mmmm, bacon flavored.

Recovery time is about two months.  I have never had a surgery as intensive as this one and cannot even imagine a recuperation time of two whole, bloody months.  I guess it's time to take up a hobby or start playing online WOW.  Hobby it is.  I will be posting more frequently between now and the surgery and, hopefully, there will be good documentation during the hospital stay to keep everyone informed. 

I want to dedicate this paragraph to my love, David.  He tirelessly takes care of my needs, my wants and sometimes just extra stuff I didn't even know existed but makes me smile and laugh. He is selfless, funny, optimistic, fun to rant with and an excellent partner for a good old 11:35 p.m. philosophical discussion about life, the universe and everything.  You always hope that just once in your life you can meet someone you would most like to emulate.  I married them.  Lucky fucking me.  I love you, Puntin.

To everyone who has sent letters, cards, well-wishes et al, bless you.  Thank you so very much for taking time out of YOUR life to make a difference in mine.  You all are the reason I am getting through this and I am so deeply grateful to you all.

Lastly, I leave you with a pictorial representation of my attitude:

I'm Might Be Dumb, But He's Ugly

The pump is finally out, my digestive system seems to be returning to normal and I actually have a little bit of hair growth.  I have already had the follow-up CT scan which showed no growth, and most importantly, no spreading.

Let me lay out just how clueless I can be sometimes.  Before the CT scan I am wondering to myself:

"Self?"
"Yeah, Steph?"
"Um, why do you think they are scanning me again?"
"Doctor stuff..."
"Oh...ok."

Then we meet with the oncologist who informs me that the scan is relatively unchanged from the first one performed back in January.   I begin round two of my self-inquisition:

"Me again."
"Yessss?"
"Guess they didn't need to do the scan after all, I mean if nothing has changed."
"Hm, well, they seem happy about it so I guess that's good."
"K."

Well, after the scan I realize that David seems unusually relieved.  I decided that questions were in order, apparently I am missing something here.  After I question him, I learn that the purpose of that second scan was to determine if there had been any compromise to any of my other internal organs.  You know, important ones like your kidneys and liver, lungs and the like.  The right two neurons fire in my brain and I realize that this whole time waiting for the results, I had been blissfully unaware that this problem even existed and that poor David had been legitimately concerned for the whole week waiting for the report which pronounced me free and clear.  Well, except for the whole esophagus/stomach thing.  DERP.   

Today was the trip out to Northwestern to have the follow-up endoscopy with ultrasound.  I have to tell you.....I really have a strong dislike for 'ol Jeffrey, but then I saw him....(shudder).  This guy is UGLY, not just mildly unattractive or slightly disturbing, but full-on John Carpenter's The Thing kind of ugly.  Here is his Glamour Shot session:

Ugly little spud ain't he?  I know the image is a little hard to see, but the third color picture from the left is Jeffrey.  And he looks pissed.  The second picture from the left is where he is worming his way into my stomach.  What an asshole.  The good thing is, because they could actually get the scope through this time, the G.I. doc was able to get a good look and believes that I am a good candidate for the surgery.  There is the faint possibility I won't lose the entire stomach in the process, but I am waiting for the surgeon's opinion on that one.  I should hear by the end of the week at the latest what the general ballpark guess is for surgery.  Could be 2 weeks from now and it could be 6 weeks from now.  All I can reckon is that the sooner he's out the better.

More news as I gets it. 
Love you all~