murphyormel

wacky reflections from a nutcracker wannabe

Category: Celiac Disease

The Junior Mint of Cancer.

Somehow, this feels weirdly connected to those appendectomy -shaped cookies my daughter and I made as a care package for my brother years ago.  She was roughly three or four, and I failed to look up the shape of the appendix prior to the promise.  She liked the pink icing.  I was mortified of my ridiculous shaping of the cookie cutter.

Thyroid Cancer is indeed the Junior Mint of cancers, but a year ago, all I could hear was that awful word.  It’s scary and unknown.  It’s new and I’m too young and busy.  I was newly alone, frightened and unsure of the next pop in the nose coming my way.  But, it’s a year later, and my lens on life is incredibly different.

So this is a Mel or Murphy way to share my news.

(and yes, the appendix is quite phallic shaped, but I had already made the “let’s make pink cookies with mama” promise to my small girl.  At least my brother must have had a good laugh over my good intention yet incredibly inappropriate family gesture.  Personally, I was horrified and didn’t realize the sex ed lesson I was giving early.  Wait, that makes me progressive.  Now, I just tell her It’s ok to kick him in the walnuts.  (OMG, another cookie reference.)

No worries, as my FB posts state, I did not hit the mark yesterday after-all, and another full dose treatment was issued yesterday afternoon.  Like prostate or optical, thyroid is treated with radio iodine, and therefore is a lot less chaotic and messy than other cancer treatments.  There is no 30+ week radiation, instead, it’s a lead filled canister with cold, aluminum tasting water and let’s just say it- RADIATION- which you drink with a straw THEY hold for you and folks wait outside a locked door.  The Geiger Counter is real, and folks DO back away when you exit the room.

It’s the junior mint of cancers.  But, illness just like a broken arm or heart, must be addressed. We must ‘refute, respond or fix’ (ok, yes, the legal side just came out too- this is what isolation does!)

I really had prayed for the D, meaning the 60-70% of people who do not need the repeat dose, but the damn high achiever in me couldn’t help herself and had to work the curve, so, off to lunch, a glass of wine to calm my already high-strung nerves and more waiting while the Hazmat lady and the expensive and yes, radioactive material, is brought into Siteman Cancer Center.  (Still floors me that you sign advance paperwork that says, “yes, I will be back to drink radiation.”) But of course, we agree eagerly and look for the nearest sandwich place to pass time.  Let’s face it, it is being held at an offsite facility, because it is too dangerous to keep near people!  But for you, Melissa, we would like to offer a pink straw and a dental coverup”.  The price is just right.

– I am ok, though isolation is incredibly boring, and I miss my daughter desperately.  We were allowed an air hug on Tuesday . Today, I must take two showers a day, flush the toilet twice each time, drink juice and more juice, enjoy a swollen jaw line and wonder if nausea will hit.  On the upside, no makeup, and I haven’t blown my hair dry in days.  Small pleasures.

– The only pain I have endured is that of the laxative they made me take Wednesday night in prep for the abdominal scan to ensure there was no spread, even microscopic.  There was not.  Whew!  But damn, the Dulcolax is like trying to pass a colonoscopy by a unknowing participant.

– I learned how to play, “Words with Friends” on my Nook last night.  I was terrible but learned “Zeus” is not a word and “Pee” is.  (Sorry, my MU Journalism peers, I too couldn’t believe I received points and even today have trouble admit accepting those points.  It won’t happen again.)

– I was driving over to the center yesterday at 6:30am, and saw our new outdoor board blank.  We are so close.  It’s ok there is no hazard pay after our drive-by of the prospective board choice caught us in the middle of what must have been “just after gunfire” . My friend, Jim said,  “those four dudes are eating gravel.”  I say, let’s sign a contract!  Prospective board location was validated that day.  Traffic, construction, gunplay…people will slow to see our signage and not forget the beauty of the blue heart and “Off the Chart” art.

– I was driving home at 3:30pm yesterday and saw the new board up.  Faaantafabulous!  It was beautiful and made me cry.  ok, that and the lack of both the organ and thyroid hormone after two weeks are a sentimental combo.  Timing however, couldn’t have been more perfect.

– Prince Harry and that brunette are having a baby, and that pisses me off. (still have anger issues over the miscarriages)

– I can eat whatever is left in the fridge, as I can’t be around anyone for three days, so today, I had cream cheese for breakfast. Tomorrow, it may be candy corn.  I really should have planned ahead.

– There were folks in that waiting room far more ill than me, and for my Junior Mint of cancer, I am grateful it is me, not a child or my own sweet tween.  I have my hair, fine shoes, still not wearing blue velour and a pea coat that makes you think sales rep not patient.  I’m down with that look far more.

– Thank you to so many of you who have texted, called, emailed and loved on me to get me through a blurrish, hellish year.  Much I can’t recall, as I started on this sick couch a year ago not sure how the wind would blow, much less a direction.  I could hear you, I simply couldn’t listen.  It has been a perfect storm of pain.

– It isn’t over, and I have much work ahead, but the gym and bike call me from afar, and my energy WILL return.

– Thank you to the nice lady in the HazMat suit who let me take these photos.  She remembered me from last year, or that’s what they say to all the sophomores of the Junior Mint Society.

– I received more presents last year.  Hey, what’s up?

– My Charter on Demand bill is going to be higher than several dinners out, and I’ve watched all there is on Hulu.  I find Teen Mom quite engaging.  (God, I need out of here!)  btw- Magic Mike is magic.

– Man, I really wish I had a Junior Mint.  Love that cool, wintry taste.

– My twitter feed is full of fun material, but my followers have barely grown.  Apparently, my quirky Murphy self isn’t up to the Ashton Kutcher, Taylor Swift “tape your boobs to their dress”, persona.  Probably should    rename MurphyorMel.  That must be the issue.

– I had my condo cleaned by a professional a day before I went into isolation. ($75 so I could sleep through clean. But no, still no guilt.)

– My therapist encouraged me to buy a rocking chair to soothe myself this year, and here it sits….holding buckets of goodwill clothes.  ok, had it been a Mizzou style chair and actually fit anyone’s decor, rather than the enemy U of I (my dad’s alma mater and laughing his ass off right now), I might use it.  (But I can’t rid myself of it either.  It cost nearly three times the cleaning of the entire condo.)

– Thank you to you for reading about my silliness.  It will not stop.

– Thank you to Temperpedic.

– Thank you to Siteman Cancer Center

– Thank you to my sweet girl.

– Thank you to the makers of Junior Mints and Radio Iodine (and more importantly the delivery person for radio iodine).  A sentence likely never crafted together, and somehow, appropriate today.

I am still not a shrinking violet (which is turns out has very strong roots), but next year, I will come back and finally get the negative result I need.

There is no understanding of how/why this cancer starts, but it is one of the fastest growing and folks don’t typically know until it presents in a large way.  If you or someone you love experiences thyroid issues, please, please, please ask.  I only knew my own fate because of a strange bird with a twisted sense of humor, Crazy Aunt Delilah.

Cheers,

Mel

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Shoot a camera out of your ass and call it a diet?

All the tests, oh the tests.  Colonoscopy in my 30s and every 3 yrs for life, upper GI, lower GI’s, scans, more scans, blood work ++++++, even swallowing a camera to shoot out my behind….and one final blood test to reveal……..

Being Celiac isn’t a diet.  Who in their right mind would name it a diet?  It’s a life sentence of the way we should all eat, meaning healthy.  But damn, it’s not ideal.  Folks like to use the phrase “Gluten Free Diet” as if it’s a fad.  LOL!  Take it from a four+ year vet, it is no diet or fad.  In fact, many celiacs actually gain weight in the beginning b/c all the foods that were taken away are suddenly available. Their bodies need the nutrients that have been lacking and when you can’t have, you want more, right?  These foods are suddenly at your fingertips in the frozen section with high caloric opportunity …and best yet, crazy high expensive and STILL no taste*.  You don’t care.  You just want the donut.

It is a limited range of tasteless, bland offerings never organized in any way that makes sense at the local grocery store (except Dierbergs in my area- they rock).

Imagine your life without bread, cookies, beer, anthing with flour/white, wheat, rye or barley.  Yes, that means no more Mich Ultra or Oreo’s- even licorice is off limits. And silly stuff like lip balms, spices, soaps, toothpaste, etc.  And I know there is G-F beer b/c someone at AB felt pity for us celiacs, but did anyone taste test that stuff?  Ick.

Gluten is glue and as a filler, you yourself experience its effects every day.  Even today’s Vodka’s which used to be safe are no longer safe- the majority too are grain based.  Just ask the bartender who isn’t a player, they will be straight with you.

The Gwyneth Paltrows and Uma Thurmans of the world who say it’s a diet that keeps them fit are not giving the full picture.  They are just cooking and eating well.  Or, their hire-in cooks are preparing healthy menus for the family.

I’m no scientist, but it doesn’t take a genius to guess that preservatives initiated the celiac bug in the first place.  If not, why the numbers skyrocketing on diagnosing Celiac Disease?  We don’t choose this. It’s embarrassing and feels high maintenance anywhere in public, and damn, I want that big juicy burger on a bun with a cold one just like my cool girlfriends.  Plus, it’s hard on the family.  My poor girl had to take peanut butter on hamburger buns to school for the first two years so I wouldn’t cheat and eat her bread slices.  Even today, I have to freeze them to keep my grubby little hands away.

And can someone tell me how my German grandparents ate lard on bread, rolls and dough of every kind, fried everything and still bowled and line danced into their 90s?  Living from the earth rather than the freezer section sure does make a difference.

Too bad I can’t cook.  Lard v. Glue.  Hmmmmm….

Sure do miss those banquet pot pies though.  They rocked.

TRIVIA FACT: We are not allergic to gluten.  We are intolerant.  An allergy is when your body fights back.  An intolerance is when your body fights itself.

*Udi’s bread is the only thing I can imagine has brought back some taste.  Thank you.  The price tag for healthy eating at $6.00+ per loaf is sad but worth it when desperate.  If I wasn’t a marketer myself, I would really be ticked at that strategy.

http://en.wikipedia.org/wiki/Gluten-free_diet

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