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~ 

A Tuesday

Ok, so sitting at the hospital, in this shirt:

Which reads: "My cancer is rarer than your cancer: (neener neener).  Honestly hoping I don't run into someone whose is worse than mine, because (cough) how embarrassing would that be?  I am drinking the equivalent to a half gallon jug of the weirdest and most mildly-disturbing-tasting liquid in prep for my CT scan.  This is one of the big deal ones.  What I am crossing my fingers for is some measure of

"OMG, NO ONE HAS EVER RESPONDED THIS WELL TO CHEMOTHERAPY.....well, there may have been this one guy....BUT EVEN HIS CASE WASN'T AS AMAZING AS THE PROGRESS WE HAVE SEEN HERE.  ALERT THE MEDIA!"

Most likely scenario is that there will be SOME reduction in the size of Jeffrey.

Instead of looking like this:

 The little bastard will look more like this:

After this test, the agenda is to get the pump removed on Friday (faint with gratitude) and have a second endoscopy performed - this time at Northwestern - this coming Monday.  The surgeon wants a chance to peek at Jeffrey as well before they schedule anything.  Personally, I am extremely glad my surgeon wants to see for himself AND I am glad for the second procedure....because the first time they tried this, they couldn't even pass the scope past his (Jeffrey's) fat butt and get a good picture.

As we get updates about the shrinkage, I will definitely make sure and post it here.  Otherwise, I am looking at a very nice break from chemo and from poking and prodding, puking and whatnot.  I am going to enjoy a beautiful spring and we will go from there when the time is decided.

Epilogue to Last Friday

So, I kinda left that rope swinging in the wind didn't I?  Last I had mentioned, there was a potential and looming trip to the hospital and then I just vanished off the face of the internet.  Sorry about that.

Well, my temperature went up to 100.6, the doctor decided that as long as I didn't feel too bad, I should wait for the antibiotics to work and only needed to worry about the hospital unless I started feeling really off - which never happened.  So, that settles that.

This past Tuesday, I went in for fluids (sounds like Jiffy Lube) and whilst there, they ran my blood work again.  The white blood count had gone up to 4.5 from 1.6.  Looks like Friday is a go.  This will be the last cycle of three weeks.  THE LAST CYCLE.  I only gotta tote that bale for three more weeks and I will be:

1. Three steps closer to killing this SOB
2. Two steps closer to getting a break and getting strong again
3. One step closer to Jeffrey's official notice to VACATE THE PREMISES

I fully believe that my counts will be great on Friday and we will pick up that sword and come out swinging.  

Actually, I have had probably the best week in too long of a time.  I've felt good and continued to feel a little better since Tuesday and now on Thursday evening; I am feeling pretty fine.  I will enjoy the hell out of this evening and relish tomorrow morning and smile all night as I watch Claire perform in her school musical, Grease.   And I will get up on Saturday morning and I will say to myself: "Only 20 days to go, slick, get the hell out of bed and fight back." 

"Once more unto the breach, dear friends, once more;
Or close the wall up with our English dead.
In peace there's nothing so becomes a man
As modest stillness and humility:
But when the blast of war blows in our ears,
Then imitate the action of the tiger;
Stiffen the sinews, summon up the blood,
Disguise fair nature with hard-favour'd rage;
Then lend the eye a terrible aspect;
Let pry through the portage of the head
Like the brass cannon; let the brow o'erwhelm it
As fearfully as doth a galled rock
O'erhang and jutty his confounded base,
Swill'd with the wild and wasteful ocean.
Now set the teeth and stretch the nostril wide,
Hold hard the breath and bend up every spirit
To his full height. On, on, you noblest English.
Whose blood is fet from fathers of war-proof!
Fathers that, like so many Alexanders,
Have in these parts from morn till even fought
And sheathed their swords for lack of argument:
Dishonour not your mothers; now attest
That those whom you call'd fathers did beget you.
Be copy now to men of grosser blood,
And teach them how to war. And you, good yeoman,
Whose limbs were made in England, show us here
The mettle of your pasture; let us swear
That you are worth your breeding; which I doubt not;
For there is none of you so mean and base,
That hath not noble lustre in your eyes.
I see you stand like greyhounds in the slips,
Straining upon the start. The game's afoot:
Follow your spirit, and upon this charge
Cry 'Death to Jeffrey!'"

Damn.

Well, the title was supposed to be all in caps and repeated about ten times with exclamation points and cannons firing (behind the scenes of course) and then some form of mushroom cloud.  Sadly, as I sit here and type this, all I can muster is a very small damn. 

I've been off the 5-FU pump for a week now and the ulcers and sores in my mouth have almost completely healed.  This is probably the best news I have had in quite some time.  Today was the consultation to see if they could put the pump back in.  Initially, they were all "YEAH! Let's do this thing!  Let's put it in right now!"   We ran down the hall, through the paper banner that inexplicably said "GO TIGERS!" and set about hooking the butterfly access up to my port and getting the blood work out of the way so we could hydrate me real quick and then hook the pump back up.

For those of you who may not know.....your blood work is crucial to you continuing your treatment.  It's like a court order handed down from the doctor, who looks at your numbers and then stamps PASS or FAIL on it.   Well, I FAILED, big time.  My white blood counts are 1.6 in a range of 0.0 - 10.0.  The most crucial component of my numbers is sitting at 0.6 in a range of 0.0 - 5.0.  Needless to say, no dice on the pump.  I went home and was feeling a little funny, so I took my temperature.  Joy of joys, I am sitting at 100.3.  *sigh*  Anything over 100.5 when your immune system is suppressed means that you get to spend the weekend at Club Hospital.  So the doctor has put me on two separate antibiotics for the next ten days and I will get another chance at all this next Friday when I have my final big treatment. In the meantime, I have to keep checking my temperature and if it goes to 100.5 or above, I get to take a ride to the ER.  Super swell isn't it?

I may be consoling myself tonight with something entirely bad for me that I can actually taste now.

Round Two.....FIGHT!

Let's just say that the slack-jawed look on my face as I type all this will suffice to define the least week.  I will try to be as concise as possible, since there is a lot of ground to cover - needless to say I missed being able or willing to type here.

So, last time we were together, I was bemoaning the inevitable loss of my hair.  Such a vanity for human beings isn't it?  Men and women alike, there is something just so fundamental to the biological markers on our bodies....the hair, the eyelashes, the eyebrows - all convey so much information when we look and talk to each other (and ourselves).  I made it through the last big chemo treatment:

There is a simply wonderful story behind this picture.  My Aunt Brenda, has a sincerely beautiful friend in Mattoon, IL, a Ms. Jodi Sparks.  She belongs to the Shawl Ministry Group of the First Presbyterian Church, and inquired of Brenda whether or not I would be interested in a Prayer Shawl.  Brenda affirmed this and unbeknownst to me, Jodi began to make a Prayer Shawl for me during my chemotherapy, surgery and recovery.  So about two weeks ago, this beautiful shawl arrives in the mail on my doorstep along with a lovely card and the kind of letter that can only be described as a "good day maker".    I now wear it faithfully every time I go in for treatments and it is the only thing that keeps me warm in those cold rooms.  One passage Jodi shared with me in her letter has been stuck with me ever since and I think it most likely will stick for the rest of my life:

  "Courage does not always roar....sometimes it is a small voice at the end of the day that says I'll try again tomorrow."  Bless her, and thank you so much, Jodi.

So I had the treatment and went home to pass out.  I figured that the rest of my hair would most likely start falling out in clumps over the weekend and I might as well just shave the beast and be done with it.  So we decided to make before and after pictures for point of reference.

Here, I am tired but pretty much OK.  Lord, did I have NO clue what was coming around the bend.  Smiling like a lemming and expecting basically a repeat of the first three weeks of treatment.  HA?  Below, you can see the small forest creature that rose up from the remnants of my shave, complete with googlie-eyes.

 And below, you see the after.  I am looking JUST a tad "monkish" but otherwise content and happy with the fact that I do not have any strange or unexplained lumps, depressions or protrusions on my skull - that would have been less than optimal.

And then things got INTERESTING.  Saturday and Sunday went pretty much as I expected.  Tired, a little wiped out and I had developed not just mouth sores but ones in my sinuses, throat and a killer set of ulcers along my bottom lip.  Monday rolls around and I am unable to even get up off the couch.  I chalk this up to the cumulative effects of the chemo and figured that by Wednesday I would be back up and running and close to "normal".

Uh, no.

Wednesday rolls around and I realize that I haven't showered in days or brushed my teeth because I cannot physically move off the couch.  At this point, I'm feeling a little dizzy, not really able to eat or drink much because the sores are now impeding even simple functions like, sleeping and not being a mouth-breather.   Again, I figure that this is just because it's round two and I should be just great after the weekend.

Thursday:  My husband forces me to call the oncologist's office by threat of physical violence.   Result?  They tell me to come in right away.  Thank goodness I had finally taken a shower.  Turns out that, moron here, is severely dehydrated and the sores have gotten so bad at this point that they have decided to unplug the 5-FU pump for a week and then start up again at a 25% lower solution.  Basically, I was thirsty, REALLY thirsty and the 5-FU was kicking my butt all over the place.  Three hours and two litres of saline later and I cannot believe the difference.  They remove the pump, which means I can enjoy regular showers for the next week - SQUEE - and prescribe me a Magic Mouthwash to help me eat food and a lovely little elixir of Lortab for the pain and swelling.  Upshot is, I feel like an entirely different person.  I went back in today for another two bags of saline and the mouthwash has made it possible to eat and drink again.

I have already been through the dialogue, both external and internal, about my own disappointment in having to come off the 5-FU for a week.  Naturally, I question whether or not this could affect my treatment negatively - anything not going to/killing Jeffrey is a concern of mine.   But then, I know that it won't help me any if the treatment kills me rather than cures me.  So, I got off that train of thought and decided that I am going to enjoy this next week with no pump hanging off me like Prometheus' stone, feeling a lot better with the pain managed and an understanding of the finer points of hydration.

Love you all~

Nice Knowing You Were Hair

Well, recently, the 5-FU pump is starting to kick me in the ass a little.  I am WAY more tired than I think is fair (stomp), keeping food down is a little more challenging and the best part is this:

I compiled this little happy, hairy tribble yesterday at work.  Yes, the hair has decided that this has been fun and all but it's OUTTA HERE.  So, basically we are counting down the time until I go all J.I. Jane.  There is something fundamentally Freudian about parts of yourself falling off.  It gives you a creepy vibe and that's putting it mildly.  I suppose now we just place bets each night on the amount of hair I can brush out into the sink.  The betting pool is now open, please wear your safety gear and remember, no running.  Pictures will follow of the grand event, hopefully this may boost our ratings :P

Claire came with me to the last pump re-fill.  I love that I actually have something in common with a car now.  BEEP.  I asked her if she was happy that she came and her response was, "Yes, and ewwww."  I'm guessing that watching them pull the needle out of my port and then put another one back in might have been a tad weird but she wanted to know what all the hubbub was about and now she does.  Normally, they don't let children back there, you know, chemo chemicals floating all over the place and we don't want her slipping in a puddle of cisplatin or anything, but they put us off to the side and let her watch.  Really a wonderful group of people over there.

Love you all~

The Universe vs. The Chemoverse

Howdy friends and neighbors.  Been quiet here for a few days as I am adjusting to the changes.  However, I am happy to report that today is the first day I have felt close to "normal" since this all began.  I even worked out doing the P90X2 warm-up with some lunges and push ups.  Now, it was only for about 5 minutes and I was sprawled across the couch afterwards panting and heaving but 5 minutes is 5 minutes, my friends, so yay.

I have discovered something recently that has been a source of comedy.  There are two existences running parallel for me right now: The Regular Universe and The Chemoverse.  In one, things seem to run much as they always have, gravity is the same, physics the same and everyday activities are the same.  However, in this alernate universe called Chemoverse, strange things happen that make no sense at all.  These are the things that make me laugh.

For instance,  in the regular universe, a brunette has a fair amount of landscaping that is required facially.  Plucking and grooming and whatnot.  All the brunette girls out there will know this to be true:  when you try to pluck a hair it's like trying to pull the anchor up on a cruise ship with your bare hands.  That little SOB ain't budging.  But in the Chemoverse, you simply "suggest" that perhaps the hair would be happier not on your face and it comes out with hardly any effort at all.  By the by, this is also the first inclination that I have that my hair probably won't be around much longer.  If the folicles are already of the mindset that they really don't care if facial hair stays or goes, I am guessing it is just a matter of days before the rest of my hair gets the memo and just kind of heaves a collective *sigh* and falls out.

In the Chemoverse, gravity seems to be that of a brown dwarf or some other vastly heavier planet.  Running up the stairs is the same, except the "running" part.   I can actually get up the stairs, but find myself looking longingly at the bed sometimes after I do.  Objects weigh more, not just me, but things like purses, briefcases and my cat.  Bending over to pick them up usually results in some awesome Pink Floyd laser show when I stand back up, minus the music. 

And food.  I know it LOOKS like an ordinary bowl of soup but it tastes like the backside of what I imagine a yak to taste like.  I know it is a CRACKER but it smells like a foot and tastes not much better than one as well.  Garlic, once a love of mine, now smells so strong I can't stand it and if anyone has eaten any, as most of my family loves to do, I can smell it coming out of their pores for days after they've had it. 

I am also suspicious that the Chemoverse has a much different climate than the normal universe.  I am cold even in front of a space heater.  If I could physically engulf the space heater into my body I think I would still be seaching the house for a blanket.  It's COLD in the Chemoverse, people, very cold.  I will be re-visiting this idea many times over the next several months so hopefully it won't be old hat by then.

In other news, I seem to be tolerating this round better than expected.  My white counts, platelet counts and hemoglobins are all still in the high range which means that Jeffery is freaking toast.  I am already noticing less difficulty swallowing and I don't have the pain in my stomach that I did before the treatment began, so this means that the little bugger is on a diet and losing weight.   Also, the oncologist ran a series of blood tests to determine if I still showed positive for that hypercoagulation genetic marker that popped up after my stent was placed in 2010.  Everything came back negative, so I can also tell Coumadin to take a flying leap as well.  NO MORE BLOODTHINNERS can I have a hallelujia?  

Love you all~

Ugh.

I honestly cannot wrap my brain around the transformation that has occurred over the last few days.  In a nutshell, this SUCKS.  I laugh at myself now when I used to worry about working out on a daily basis or if I was stuffed up or had an upset stomach for a few hours.  PHAW!  That is kid's play.  Now it's wondering if a certain smell will send me running to the bathroom, trying to sleep at night with this infernal tube snaking around me and trying to figure out how the hell to get clothes to cover the damned pump that whines at my side 24 hours a day 7 days a week.

I'm more tired than I can ever remember being in my whole life.  Not just fatigue where you slump on the couch after a rough day and veg for a bit, but the huge numbing tired that makes it hard to focus your eyes or even lift something.  And it's almost always there.  In the background, thumbing it's nose at me.  I feel hollow like most of me isn't even really there sometimes, like smoke.  It's a tad humiliating.

On the other hand, I think to myself - "If I'm feeling like this, then Jeffrey must be REALLY feeling shitty" and believe me, that makes me feel much better.  I just miss feeling normal I think.  I already look at other people wistfully and wish I was in their shoes, worrying about picking their kids up from school or what to make for dinner instead of riddled with guilt that I'm not giving my daughter enough right now or that dinner is just something that happens at a certain part of the day and I'm no longer on the invite.

I find myself falling asleep a lot, out of the blue and then waking up two hours later and wondering what time it is and what the hell happened.  It's kinda weird to lose track of time like that.  But enough complaining, I suppose I am doing fairly well up against the average patient experience, I have great support and I'm not in my 60's or alone.  I just wish I could develop a quicker learning curve and start assimilating this into my daily routine instead of letting it run my daily routine.  Waiting every morning for a few hours to stabilize before I can get ready is rather irritating and huffing and puffing with fatigue after getting dressed is beginning to make me laugh and then get teary and then laugh again.  I expect there will be many firsts here and many lessons to learn, let's just hope I am smart enough to pick it up quickly.

First Chemo

I had the power port put in yesterday, here is a gruesome picture of that.

PLEASE understand how much I must love everyone following this to post such a horrendous picture of myself, it is truly the best "I love you" I can give you all :)  Now this puppy hurts a bit right after they put it in, it made me walk like a partial hunchback for most of the afternoon.  The good news was that the drugs they gave me stayed in my system for a bit after and I didn't have any pains in my stomach for the WHOLE afternoon which means I was able to EAT FOOD.  Believe me, this was a banner day, I did a small and freakish little dance after lunch.

Now today was the first trial run of this little port and my first round of chemo.  My schedule is actually better than most I think.  I go in this first round and I get all three drugs.  It takes about 5 hours but I tried to be really on my best behavior and then decided that joking and laughing was a lot more fun.

Yes, my shirt has a cowboy on it that says "Chemosabe" - it got a few laughs so I was much pleased.  The Epirubicin, the one that makes my hair fall out in about 14 days (we will LOVE those pics) is also colored a bright red and, consequently, also makes my pee the same color.  Very Christmasy.  Then after the Cisplatin, they put in the pump with the 5-FU.  The 5-FU runs 24 hours a day, 7 days a week from the ugliest piece of medical equipment I have ever seen:

So I have this little bag I have to carry everywhere with me all the time.  It has to hang on a hook when I take a shower, I don't even know how sleeping with the thing will work as it is connected to a tube that runs into the port in my chest.

That is the first week, just one day and all three drugs.  The next week I just go in to have the pump refilled, same with the third week.  Then the fourth week I go in one day and they do all three again.  So really, I am only in there one day a week and only one in three days will be the long day.  So YAY!  Updates will be forthcoming about how good/bad I may feel, they pumped me full of steroids and anti-nausea medication that is supposed to last for about 3 days.  I love you all so much and I have a BIG shout out to Maggie for hanging with me for quite a while and keeping me smiling.  I love you girl.  And as always, my perfect husband who made me laugh a lot, went and got me lunch so I could eat before the nausea kicked in and looked after my every need/want.  I love you Pumpkin.

Hair Cut

Ok, well, I decided that if the drugs I was going to be on for chemo were going to make my hair fall out, I decided to take matters into my own hands and beat it to the punch - so to speak.  So for a recap:

This is what I looked like before - not too bad.  Mind you, I haven't cut anything approaching a length off my hair in about 15 years.  Here is the before picture in the salon:

Here is mah new look, I really like it actually, went with a violet brown color with these awesome little chunky highlights in magenta.

There it is, that little shit thinks he's taking my hair?  Well, he don't have the style and color sense I have and at least I got over 16 inches out of his grubby paws and into the hands of Locks of Love.
Next up is first day of chemo - ugh.

MOTO

Ok, so my husband, the most awesome man ever, has decided that before I can no longer eat the food at the places that I love so much, I should have a hell of a send-off.  With that, we took our daughter and went to Moto in Chicago this past weekend.  It was a trifecta of purpose: my birthday, Claire's early birthday, and a farewell to food for a while.  At this point I feel I should add that I am not being melodramatic, but depending on how the surgery goes and what they may have to remove, I may not actually be able to eat in places like this again.

Here is the menu:  It was printed with edible ink on a springroll with crumbled peanuts, pickled veggies, cilantro, fried mushroom slices, tofu and a spicy pineapple sauce.  So you roll up all the ingredients into the wrap and then dip it into the sauce.  It was totally fun.

 This was called Black Out, three pieces of mahi poached in olive oil and from left to right, sitting on top of a puree of forbidden black rice, next is a small portion of Russian black caviar, then fish atop the balsamic gastrique with fried basil on top, another dollup of caviar and finally fish atop a parsnip puree with a black garlic foam on top.  They used squid ink to dye the foods that weren't naturally black but they left the mahi alone so it really stood out.

Here we have Garbage Salad.  It actually tasted just like a deconstructed pizza.  Sauce, basil splattered all over the plate with home made sausage, rolled up prosciutto, two pieces of home made dough, and a packing peanut made of pork skin.  It looks much worse and tastes much better.

This is Nose to Tail.  It's a suckling pig served in different preparations in a circle to represent the nose to tail concept.  Porkbelly with a mango puree, braised ham with a Jerusalem artichoke puree, crispy pig ear, pork tenderloin and a pork rind in the center.  The whole circle on the plate was a mango puree with small bits of freeze-dried pineapple and a pipet in the center of a coconut/pineapple puree with rum.  Excellent.

This was a bread sauce with small carbonated purple grapes.  When you bit into them, it was like drinking a grape soda.  This was probably my favourite flavor profile of all the dishes we had. 

Bird's Nest:  Poached quail's egg on a bed of fried egg noodles and a crispy green onion on the side.

This cracked me up.  They called this KFC Dinner.  They had taken a roasted chicken, freeze dried it, then shaved it into a powder and used the powder to make a pasta that tasted just like roast chicken.  It was amazing.  There was also a small, truffled biscuit, mashed potatoes and gravy on the bottom and a powder of 11 herbs and spices.  In the corkscrew-looking utensil, they had put fresh oregano in it so you could smell the oregano while eating the chicken.  Just nuts.

This was the Cigar Trio: from left to right, Serrano ham and Wisconsin aged white cheddar, then a small Cuban with shredded pork, Swiss and a pickle, finally a Philly cheese steak cigar.  The ends had been dipped in a tomato sauce that made them look lit.  Then they shook a freeze dried mixture of salt and pepper and spices to dip them in that looked like ashes and smoked when it hit the ashtray they served them in.  The cigar has been my favourite thing they have done since they opened.

On A Log: these were all ingredients that were foraged by some crazy and awesome hippy in California named Crazy Squirrel or something like that.  It comprised a mushroom puree spread along the length of an actual branch foraged from the wilds of Chicago and atop that were an assortment of hedgehog mushrooms, acorn mushrooms and various other little mushrooms that were out of this world.  By this time, we began to notice a certain "fullness" encroaching on us.

This was a lovely little bit of wagyu beef with sauteed veg and a cauliflower puree.  Little pork cracklin on top.  The beef speaks for itself and honestly didn't need anything else with it.

Egg Drop Soup: Actually the "egg" was a mango gelee ball encased in a lemongrass pectin that looked like an actual egg.  They poured a foam on top that I think had coconut in it and was simply delicious.  A nice break in the palate from the rich dishes before.

This was really cool.  The top picture is a glass bowl sealed at the bottom with caramel.  There is applewood smoke floating at the top of the bowl and they had sealed it with saran wrap and then poked a small hole in it so we could smell the smoke inside.  At the bottom of the bowl were three little marshmellow cubes with small sprigs of rosemary poking out of the top.  The bottom picture is the accompanying dish that came later with a small quenelle of truffled ice cream, currants, and a powdered cinnamon and nutmeggy kind of thing with small wafers stuck inside.

This was Elvis Circa 1974.  The top thing is a peanut butter ice cream sandwich with an edible picture of Elvis on it.  Underneath is banana slices, fresh jellies and peanuts.  It was totally awesomepants.

A little molten lava chocolate cake with honey inside, powdered yumminess with peanuts, currants and ice cream on the side.  I couldn't even swallow another piece of food at this point, so I took a bite comprised of all components and then passed the plate to Claire.

ACME Bomb.  It was a liquid center of caramel covered in hard chocolate with a marshmellow fuse that they lit at the table.  Once it burned out you popped the whole thing in your mouth.  A signature dessert for them and I loved it.

After we were finished, they allowed us to go downstairs and visit/tour the kitchen.  We met Ricky and Chris from Top Chef (we like that show and were genuinely bummed when they were eliminated), joked about the vagaries of chicken salad sandwiches, and met each and every incredible member of an incredible team.  We got to hear stories, laughed and then took an amazing group picture.  I hugged each and every one of those talented people and was truly grateful to have dinned on the fruits of their imaginations.  I am in awe of their hospitality and their heart, if you ever have the chance, PLEASE GO, you will never forget it. 

Up next:  The French Laundry

Well, crud. Had the PET yesterday, still waiting on the report to come in, hopefully by Friday. Met with both surgeons, they described the procedures quite effectively. Two eight inch incisions, one from the front middle section of my thorax and one along my right side. Surgery is about eight hours and I am confined to quarters in the hospital for about 10 days getting nutrition through a feeding tube in my side.

In the meantime, the oncologist I met with today has outlined the following:
Next Thursday I have a power port implanted - I will put milkshakes in it!
Next Thursday I go in to learn about my chemo treatments
Next Friday, I begin a 9 week bout of chemo therapy, including Epirubicin, Cisplitan and a constant 24 hour dosing of 5-FU that runs into the power port (I have already thought of three jokes about the 5-FU) My hair will fall out in about the next three weeks along with many other unpleasant side effects
After 9 weeks I get scanned again, I get about 6-12 weeks to recover from the chemo and then we schedule the surgery.
After I recovered from that, it will be another 9 weeks of chemo again.

Here is my gameplan:
I will cut my hair next week in the shortest and cutest style ever and maybe even dye the tips a cool color
I will have a head shaving party when the time comes and I will let Claire shave my head

I have come up with the following list of the positive things about chemo:
1. Shorter showers, no conditioner and no blow drying
2. Lower grocery bill due to nausea
3. Energy conservation NOT growing any hair
4. No shaving!
5. Weight loss
6. Knowing where all the best bathrooms are
7. Lots of cool hats
8. Long naps
9. Loads of downtime for hobbies and movie watching
10. Drawing different expressive eyebrows everyday
11. Temporary scalp tattoos
12. Husband won't roll over on my hair at night
13. No tangles
14. Medical marijuana! Well, if I lived in a state where it was legal :D
15. Possibility of Hulk-like abilities

Ok, done for now, brain is fried and I gotta watch something funny to get back in balance.

Love to all~

One sore throat and massive propofol hangover later and we have an update.  The endoscopic ultrasound went rather well, all things considered.  The stricture is too tight for the scope to have gotten all the way down in there without the risk of me being able to pay the flute with my esophagus.  However, what they were able to image gave us a peek into the sordid world of Jeffrey and found that he is performing on stage three.

Yes, stage three.  Now, while better than stage four, and believe me, I am SO damned grateful it isn't stage four, it means that the little turd has made a rather comfy cancer hammock in the wall of the esophagus and is growing into the muscle.  So far, he has not had his sticky fingers in any other part of my body so I am calling that a definite win.  It does mean that I need to book my ticket for the chemo/rad express departing in the foreseeable future - I hope first class is still available.

So, Wednesday, we meet with the A-Team over coffee at Northwestern Memorial, I have a wonderful PET scan to confirm that there is no spread and that the jerk is confined to quarters like they believe he is.  Thursday, we meet the staff for the chemo/rad trip and find out when that starts, how long, how many times a week, etc.  I am not looking forward to how much this will suck.  I really don't want to be tired all the time and honestly, throwing up is at the top of my "Don't Wanna" list.  I will be picking Maggie's beautiful brain to pieces for tips and tricks and whatnot.  Thank goodness I have her.

Thank you to my mom and dad for spending most of their morning/afternoon counting ceiling tiles in the waiting room and being propositioned by volunteers with fig newtons and nutri-grain bars.  I love you both and I was glad to see your faces today.  I am so lucky to have such an amazing support system and I am also shamed sometimes at how much better most people I love are better at this than I am.  But I will learn!

For now, I am going to do a little work, still a little tired from earlier but it keeps my mind occupied and I like that.  Then, veg in front of the flickery box and just enjoy some time with my awesome family.

Love to all ~

After seeing my regular doctor last night, I was afforded what I am taking as good news. When I picked up the report for the CT scan, David and I both looked at it, scratched our heads and then shrugged. So, I took the report with me last night and just dumbly shoved them at the Doc and grunted a few words. He was able to give me a MUCH better description of what was there.

It looks as though, from the scan, so I am taking this all with a grain of salt until we get more firm results from the ultrasound and PET scan, Jeffery has not spread anywhere else inside my chest, thorax or pelvis. Meaning, no other organs appear to be affected. He says Jeffery appears localized to the distal portion of the esophagus - the part right before it goes into the stomach - and the very top portion of the stomach. The only concern there is that the bugger is growing into the wall of the esophagus and isn't clearly differentiated from the surrounding tissue. Meaning that Jeffery is playing hide-and-seek in there. BUT, I will take whatever good news I can squeeze out right now, and I'm hopeful with regard to the next couple tests.

So, sleep came much easier last night and that is the long and the short of that.

On another note, thank you so much to every person with kind words, loving thoughts and just general badassedness. I really appreciate every one of you more than I could ever express here on this page. I am truly a blessed woman to have such incredible family, friends, wonderful insurance and the tightest support staff anyone has ever seen.

Maggie was a lifesaver this week, woman, you are honestly one of the toughest I have ever had the honor to know. Thank you so much for your love, your advice and your experience - you saved me from myself this week. I am buying you more than a few drinks to celebrate when this is all over.

Love to all ~