Thursday, September 27, 2012

I am That Kid.

Remember that kid in elementary school that snorted a strand of spaghetti out her nose & grossed out the entire lunch table?
I am That Kid now.
The Edelmans are sucking it up for me too :)
Yup. That's a Nostrogastric Feeding Tube I might be sporting for the next 6 months or so. There's many ways to look at this. I can hang Pandora beads on it, clip notes of my current status on it, Nose Dreadlocks, Boogie Bungee ~ numerous ideas. There's that new fad diet that involves a nose feeding tube. I can put some Vera Bradley stickers on it and there ya go ~ just like the Rich & Famous.

"TORS" apple pie.
Yet another mind-blowing medical experience under my belt. Truly amazing. You can read more about TORS here. 
As usual, we felt fully confident of our medical team which helps calm the jitters. Dr. O'Malley made it a point to lift that pie off me and spirit away with it. Dr. Weinstein spent time chatting with us & Dr. Rudolf made sure I didn't feel a thing. Big fan of that. 

Hysterical notes from the slab.
Breathing Tube disguise.

Breathing tubes. I pray none of you ever have to go through breathing tubes. I felt I was on the point of asphyxiation most of the time, even though the kind nurses constantly reassured me that yes, I was getting enough air. There was a whole horn section of us determinedly wheezing out musical notes. With our mini trumpets, we earnestly tooted away at various speeds and tempos. After getting my tube out, I felt so sorry for the occasional poor soul who would run up the whole scale with a quaver at the end. I jotted down lots of Very Important Notes that I can't make heads or heels of now. They are funny though. Also, I made a diversionary mask to cover my tube, ala Cindy Crawford. To think a zit would used send me into a tizzy is laughable now :)

Dr. Phil
Medical Stuff: HUP released me on Tuesday. I may eat pureed foods ~ no liquids though because I might asphyxiate on them. It takes me about 1/2 hour to eat 1/2 cup of applesauce so lunch dates are out for a while. I have my very own Visiting Nurse; a lovely lady named Robin, who will be checking on on me to make sure I'm cutting my toe nails and not supplying the neighborhood kiddies with The Good Drugs. She is about my age, has critters & loves old houses. We will hit it off well.

Craig & I  will go back in on October 2nd for pathological reports & to talk about whether I will need radiation, chemo or a combo of the two. Drs. O'Malley & Weinstein both seemed pleased with the results thus far. This makes Craig think, "Oh Good! Nothing to worry about!" and it makes me think, "Oh Crap, what is hiding there?". On the whole though, due to amazing family & friends and extraordinary medical care, I think my head is in a good place and my body will soon follow. Craig is trouping bravely along, minding the Ice House and making me feel special. Phil is pretty much self-contained & has a credit card:) I have started to do housework and worked on some graphic stuff for the store, so I know I am feeling bettah & bettah. I feel I turned a corner today in healing & was able to cross off a bunch of To-Do notes ~ oh so satisfying!

Here's a few tips I've learned: 
• Bring an extension cord for your cell phone charger. Don't forget earbuds.
• Bring lip balm.
• Abandon modesty & just "go" with the flow.
• Bring paper to make Important Notes on ~ you will not be able to remember or understand the garbled important points you earnestly had to write down from your bed of affliction, but looking at them later is a hoot.
• Yes, you have to have the Heprine Shot.
• It's probably not amusing to your room mate if you try to write your name on the heart monitor by holding your breath, because an alarm will go off. It will halt her snoring for a minute or so though.

Here's some assorted pictures of the people of HUP. Looking at them again makes my heart squeeze, they were so kind to us. It makes all the difference.
ALL the nurses were Absolutely THE BEST CAREGIVERS! 

Smiles are the order of the day at HUP.

Craig took pictures of the animals for me:)
Mr. Fist eats Pureed Peas.
Everyone was kind & friendly, and, most importantly, laughed at my jokes.
Thanks for the love!

Tuesday, September 25, 2012

There's No Place Like Home

Home from hospital ~ thanks for all the well-wishes. xxx's

I will write more tomorrow ~ right now I'm happy to be home, showered, bathed & in the lovin' arms & paws of family :)

Thursday, September 20, 2012


Frig is ready for when I get home from the hospital :)

Made pies until I ran out of doughs.
I got the automated call telling me when to be at the hospital tomorrow: 5:45am. Wow ~ I'm going to owe Craig big time for this!

To all my graphic friends, I hate how I can't wrap type nicely around the photos in this particular blog format. It drives me nuts.

TORS pie before baking.

Spent the day prepping for being away from the house for a WHOLE TWO DAYS. Also, I baked some apple pies; some little ones for Craig & Phil and one biggie to put on my chest when they wheel me into the op room. I'll supply the plates & forks ~ they have the knives. I've resorted to Shameless Heavy Duty Brown-Nosing by putting the initials of the procedure: TORS, in cut out dough letters on the top crust.

There are a few comments that may wake me out of tomorrows anesthesia. They are:

"Oops!" and "Five Second Rule!"

Ready to unzip my neck :)
Neck update! Feeling bettah & bettah every day. Swelling has really gone down in the last day or two. Still have the Numb Skull, although I believe that numb area shrinks a little bit every day. The instructions sent home with me regarding the Surgi-tape says I can remove it now... I started to peel it off but I was a-scairt I was going to unzip my neck. Okay, I just screwed up my courage and peeled it off ~ not bad!

I put myself on a liquid diet today in order to avoid un-lady-like things like farting under anesthesia 
(O the horror!) or having to poop while in the hospital. I blame this on my Mom, who was a very silent-bodily-functions-kinda woman. There. I hope you are amused.
Here are the finished pies for Team O'Malley~ Weinstein & my boys.
 A box of Chiclets from my buddy Mo. Heeee-eeey!

O'Malley, The Alley Cat, from "Aristocats"
When I hear Dr. O'Malley's name, the song "O'Malley the Alley Cat!" drifts through my brain. What is wrong with me?

I'll be back a-blogging After!

Friday, September 14, 2012

Talenti, O how I love Thee!

The sole depressing medical news I have to share
with you today:
One big honkin' zit I'm getting from eating entirely too much Talenti gelato. This stuff is Da Bomb ~ my own version of crack. Craig & Phil steer clear of it, rightly sensing they may come to physical harm if they dare to dip a spoon into it. I was under the illusion I wasn't getting enough calories ~ heh! I idly turned the Talenti container around to check out the nutritional facts. 240 calories per serving, 4 servings per container. Almost 1000 calories in this wee container! I am most certainly getting enough calories, as you see how I'm eating it ~ straight from the lovely container:)
Here's my mug, er, neck shot this morning, after nine days. Jeeze, it looks great, huh? It is still a little stiff. I feel a pulling in it, like things are knitting together. I am still numb on and around my left ear. Left jaw has the feeling of dental Novocain wearing off. My range of motion in my left arm is getting a little better too. I'm almost ready for some neckin'. Just sayin'. (sorry Phil:)

Getting back into picking flowers, baking, housework :~P & errand-running, usually done in Full Make-Up. Not watching as much Bravo TV as last week. Curse you, Real Housewives!

Life. Yay!

Our dog, Shadow, is getting quite a workout these days. Between Phil's school books dribbling in via UPS & the Goodie Train that keeps stopping for me, Shadow is kept mighty busy monitoring all the activity.

Woof! Woof!
My friend Monique tried to do a Stealth Goodie Drop yesterday. I heard the Dog Alarm & looked out the kitchen window to see Mo slinking up the driveway, trying to hush a wildly barking Shadow. "Shhhhhhh! Shhhhhhh!" She brought numerous thoughtful goodies, including this hilarious drinking vessel: A RedNek glass; a Ball jar with a straw. Suitable for all types of libations ;~) Thanks, Mo. It's in constant use.

Woof! Woof!
FedEx man bravely walks up to the porch with a biiiiig box. For me! Inside was this lovely Fall arrangement from the Weaver Company. Thank you. It's beautiful!

A few days ago I took a call from our insurer, Aetna. It was Debbie from Aetna Care Management & this was an "Outreach Call". All I could think of was that the medical bills are starting to roll in to Aetna and Debbie was sent to ferret out what was going on. I was worried I would say the wrong thing (not sure what that would be though) and she would say, in Soup Nazi  fashion: "Oops! HAHA! No more coverage for you! Good-bye!" 

Insurance stuff scares me almost as much as cancer stuff :O 

I went to Staples & bought a bunch of colorful folders so I can keep track of all the paperwork from various offices. Almost daily now, a new piece of paper from Aetna arrives in the mail.

Dr. O'Malley's team have been generous with their time, answering my questions & concerns. They always get back to me ~ I couldn't be more pleased with my care from them. I feel confident about the next step.

I probably won't have anything to post until after the TORS surgery. Thanks again for all the love!


Tuesday, September 11, 2012

Apple Pie kinda day

A sure sign of Health ~ Baking!

Yup. Yesterday, I decided that making this Apple Pie was more important than vacuuming. The boys agreed.

Day Four after surgery, I ventured out in to the world. My choice of venue? WalMart. 'Cause I'm such a classy gal. With Craig at my side (which rarely happens for WalMart visits) I grabbed a cart and set off down the aisles. I had to pull over & keep waiting for Craig because he stopped at every cute baby we passed & I briefly wondered if he would trigger some type of "Amber Alert". Anyone staring at my neck? Nope. Too busy with their own lists and thoughts.  At one time or another, we all have stuff going on. Yep, I couldn't even scare up any gaped mouths at WalMart. Actually, think about it, WalMart is probably the best place for maiden voyages for when you think you look... weird :) 

So, what's your neck look like?, you ask.

Here's how it looks five days after surgery. Cripes, and with no make-up. Still a little swollen, with puffiness around the chin & jaw, but things seem to be knitting together nicely. There goes my "Nearly Headless Nick" Halloween idea.

And now for the boring "Old Person Talking About Their Health" part for those of you who want to know...
I have one more day of taking steroids. Today I noticed that I didn't take my first dose properly, so this may be why I am still Jet-Puffed.

NOTE: It is probably a good idea to ask your spouse or friend to read through your prescriptions first even though you think you know, in your Percocet-induced fog, what you are doing.

The outside area of my left ear is still numb, but I think this will gradually go away, as the numb area seems to shrink a little bit every day. The first day, 1/3rd of my scalp was numb, making me an Official Numb Skull. The only issue I seem to be having (other than cancer, heh-heh) is sleep. I've tried Tylenol PM, Mid-Nite, and NyQuil's new ZzzQuil. It tastes every bit as revolting as their green stuff which was a hopeful sign, but alas, it did not send me to La-La Land. I have since read reviews on Amazon: "The only active ingredient in this "new" product is 25mg of Diphenhydramine hcl which Nyquil ZZZ labels a "Nighttime sleep-aid." This is the EXACT ingredient in benadryl and store brand equivalents, that cost much less, which those manufacturers label as an antihistamine." I feel like such an un-doped dope! If this continues, I'll call my family doc for a magic pill script. On the plus side, I am listening to lots of "Selected Shorts" & "This American Life" podcasts through the night. I like being read to.

O the kindness of friends & family! A sincere Thank you. Your thoughts and prayers warm the cockles of my heart.

My neighbor Jill is channeling my Mom. She brought over a huge pot of soup & multiple other edibles. Also, Girly Stuff from her & her girls such as chick flicks, glossy mags & chocolate. I know what you are all saying: "But, but... I wanted to bring stuff tooooo!" Let me tell you, Jill was not to be thwarted or reasoned with. She determinedly breached the Bolinger Gate even though the bridge was up, the lights were off and the alligators were loosed in the moat. She marched right in with that honkin' big vat of soup, asked how I was & looked me over closely for a minute then swept right back out again. The nerve of some people.

Soup & Chick Flicks!

My Bro & Sis In Law, Steve & Cindy, gave me this box of delights gathered from their recent Napa visit. "Tell Susan this is not a Cancer Gift!" they instructed Craig to say. Heh! Looking forward to indulging in some zin. Saturday's looks especially wicked :)

Friday, September 7, 2012

Easy-Peasy (mostly)

Home and comfy. No awful staples running Frankenstein-like around my neck and I'm only on Tylenol.

Operation went well. Many handsome interns & students lurking around ~ just sayin'. The lovely pedicure I gave myself was wasted, due to having to don a pair of beige booties. Got a pair of my very own hospital issued Big Girl Panties... Bring it!

Here's my Anesthesiologist, Mark Caruso, who I wanted to make good friends with because he was going to make sure I was deep in dream-land when this all went down. I quickly drew a Happy Face, with a neck with dotted lines & scissors showing where to cut & "Have A Nice Day... Please!" written on it and left it lying on my chest as they wheeled me in to surgery. I want people to be happy when they are cuttin' on me.
Mark did a good job, as I don't remember a thing. He needs to work on his "Goin' Under" shtick though. He had nothing! I said, "Do I need to start counting back from 100 now?" And that's all I remember for about 5 hours as a whole group partied around my neck. I just hope nobody dropped a Junior Mint in there. They took out all the lymph nodes in the left side of my neck. I can just picture those little old nodes, sloshing about in a beaker somewhere. Self-disappearing stitches & steri-strips (white tape) & I'm done the first stage.

Here's my surgeons, who were really nice ~ no God-Complex attitudes in evidence.
 Dr. O'Malley
and Dr. Weinstein

Here's my Before & After pics:



 Hee-hee, okay, here's the real after:
It's still swollen, but isn't scary at all. Squeamish me could even look at it. I screwed my diamond earrings back in and am ready for the next step.

The only bad thing was that I found out I'm allergic to morphine. No opium dens for me, kiddos. That was The Worst feeling. Imagine your worst headaches & nausea. (Elisabeth, I thought of you many times). A few more hurls and they deduced I was allergic to morphine. My room mate was a lovely older woman who was operated on earlier in the day and as I hurled into my puke bucket, she shouted "NURSE! NURSE!" for me. Thanks, Elaine ~ love ya. The poor woman had to hear my moans and feeble weeping all night, punctuated by hurling noises. My only complaint: The nurses didn't/couldn't figure it out sooner & didn't/couldn't give me anything else. It wasn't my neck that was hurting ~ just the worst headache I ever had ~ even compared to my one & only experiment with Tequila shots many years ago. Saving grace came in the form of my morning shift nurse, Maria, who brought me crackers, ginger ale &... Percocet:) Within 25 minutes, I could have wept with relief, as the headache faded.

Next is transoral robotic surgery, or TORS. O'Malley & Weinstein are the inventors of this procedure and have gotten may accolades for this technique. No external cuts ~ it's all done through the mouth. I just wish I had a bigger mouth. If Carly Simon & The Cookie Monster had a love child ~ that big.

The more I do this surgery stuff, the less it worries me ~ must be all my friends and family praying & thinking of me. Thanks so much! I go between weeping and laughing as I read your comments & emails. It's all Good Medicine, friends:)

Tuesday, September 4, 2012

A limp & a nod

My brother Jim writes very well but spells atrociously.
He spells Lymph Nodes as Limp Nods, heh-heh! Love you, bro, & thanks for a blog title.

Okay, so this is what I am going in for tomorrow at U. of Penn in Philly;
A neck dissection is used to remove the lymph nodes in the neck for cancers of the throat and voice box. This is done through a neck incision and is not done robotically. In the vast majority of cases, this can be accomplished with a “selective” neck dissection that allows for removal of mainly fat and lymph nodes with preservation of other important neck structures. These are reconstructed in a very cosmetic fashion. 
I googled "Neck Dissection" and couldn't get past the illustrations of the neck laid open. All I could picture in my head was a Gary Larson-type gaggle of doctors around my opened neck, seeing if they could make my legs jump by touching this nerve or that one. Like that frog in Biology I.

Come on, that was funny.

I will ask if perchance, could he take in a fold or two, please? I figure that fits in with the "very cosmetic fashion" they talk about in the description.

In usual woman-fashion, I am wondering what to wear in the hospital. The literature says "Something comfortable".  How do you project respect & take command of the situation in Snoopy PJ's, no bra & Yikes! ~ no make-up?

Today is the official First Day of School for Phil. Now, there was a day not long ago where each First Day of School was a morning photo shoot. Phil & me, posed on the sidewalk, Phil walking to bus with a cool wave to Mom, etc... You know the drill & have the stacks of pictures, doncha?

Here's Phil's First Day of School shot this morning:
Yup, he's pulling away in the truck with a bagel in his mouth. Hey, I still got the FDoS picture didn't I? 
I can also see that I have to take that jacket to the tailor.

I wrote up instructions for Craig for the whole two or so days I may be away, complete with highlights and underlines. I know he's always a little annoyed when I do this ~ as though he can't be trusted to tend the livestock. Can't help it though ~ it's how I roll. He's lucky I didn't leave detailed instructions on the correct way to load the dishwasher. Sorry Craig!
There now. Does that make Craig look like he's about 10 years old or what? And Jill, you are not, repeat, not, the "bums down the road"; it's the house across from you:)

Thanks for all your lovely replies and emails ~ you all made me cry a little, laugh several times and feel very special!

Monday, September 3, 2012

An Awkward Intro

Hi friends & family! I decided to start this blog a few weeks after we discovered I have Cancer Of The Tonsil, of all the ridiculous things. I mean, really? I've never heard of such a cancer before & what the heck is the color of the ribbon?

It is getting unwieldy for me to remember who I told what to & when I told them or even if I told them at all ~ and I don't even have a large circle of friends (but they are all Very Choice Friends). I hate to think of Phil & Craig being my medical transcribers, the poor things:)

I've always dealt with things by writing down my thoughts; ever since those pre-teen diary days. Remember those little "pleather" books with the flimsy lock & key? Oh, how I wish I would have saved those gems! After I married Craig, I got rid of all but one page where I had written, after dating Craig for about a month, "I think I met the man I want to marry". So, here I hope to write down everything you wanted to know, but were afraid to ask, because, lets face it ~ cancer is... awkward.

Go pour yourself a glass of wine and hear my tale. This is what I'm having as I write this:
(Lemoncello, Pellegrino & Crystal Light, in a tall water bottle)

Here's the email I sent to my brothers:

I've been having a sore throat for a while ~ since March of 2011, as a matter of fact. Got tested for strep; clean. My family doc couldn't see anything so she sent me to an Ears/Nose/Throat doc that June of 2011. He had a CT scan taken and said I had calcification of my throat ligaments (officially making me an Old Fossil, I guess). This past June, it started to hurt worse so I went to the ENT doc again, who ordered another CT scan. He still couldn't see anything but thought the left tonsil should come out. Last Thursday I woke up from the tonsil operation to find out the doc just took biopsies of the tonsil because he found cancer. Rats! The pathology reports confirmed it and off I go on a series of doctor appointments. Today I had a PET scan and this Tuesday I go to a head & neck specialist at University of Penn who does robotic surgery ~ cool, huh? I keep picturing R2D2 from Star Wars workin' away on my neck, beeping and chirping...
I've discovered Valium, which acts like wine, but without the calories  :~D    Craig is the Optimist, as is Phil. Me, I'm waiting to see what the PET scan reveals and poppin' Valium with a glass or two of wine, a No-No, but screw that! :)
It's all good though, whatever happens. I'm determined to retain my sparkling sense of humor.
I'll keep you in the loop & as Monty Python says: "I'm Not Dead Yet!"
Then I sent this one out to a few other folks a few days later. Hopefully the links will work if you want to know more about the Who & What stuff:
Hi Everyone! 

Thanks so much for all your concern & prayers ~ they sure are working:)

After 40 minutes of circling the sprawling University of Penn complex ~ in typical "Country Rube" Craig & Susan fashion ~ we finally made it in to see Dr. Bert O'Malley this morning.

Scheduled two operations: One for Sept. 5th to remove the lymph nodes in my neck & the 2nd one on Sept. 21* to robotically (TORS TransOral-robotic-surgery) take out my left tonsil & any other, er, nastiness. 

This Thursday, a big team of doctors all get together to discuss tumors (What snacks are served at THAT meeting; cream-filled donuts?). I'm to call Dr. O'Malley this Friday for the lowdown on my condition, after he has read all my various discs, scans & tests & discussed my case with the TT (Tumor Team). 

There may be a combo of surgery, radiation & chemo prescribed, so I just might have one heck of a scary Halloween costume planned... just sayin'.

With bottom lip a-quiverin' and eyes a-leakin', I asked him if I would live to see Phil graduate. Doc smiled & said he hoped I would see my grandkids graduate :) 

Thanks for all the thoughts & prayers ~ I truly appreciate them.


* Happy Birthday Jill!
There! Now we are all caught up. When O'Malley said I'd live to see my grandchildren graduate, I felt much better about this whole thing, but it hasn't stopped me from cleaning out a few drawers & stuff ~ just in case:)

My hope is: to soon be up and about, trailing after Phil's golf team with camera & bug spray.

I'll post with anything I think you may find interesting or that is new. Feel free to leave a comment with ribbon color suggestions:)