Friday, October 26, 2012

And now a word from my brother Bill...

My brother Bill sent me the following email after reading my last post. I snorted coffee through my nose (which is really easy for me to do now) while reading it. Hope you enjoy it too. Bill is the brother that looks like this guy on the TV Series, "Abandoned":

Anyway, here's what he wrote me...

Jeeper, what a drill! And the SureKill Expy. to boot. You really must have pissed off someone important. 

Allow gobs of time for the SKE in the rain. And The Lord have mercy on you if it snows or sleets. I have spent hours on that 13 miles of what we so euphemistically call highway, with enough youthful impatience to frequently add to the misery of my fellow motorist. I should have had vanity plates, "dkhd@large". 

Suggestions for whiling away the coffin time. Try tunes that inextricably bolt themselves in your cerebral cortex like: "99 bottles" etc...., or that one that goes,"have a holly jolly Christmas...."  , or perhaps,"Jesus Loves Me". 
Further time wasting opportunities include but are not limited to making up new lyrics to familiar tunes. 
While bailing boxes for FedEx I have come up with verses describing my job there to the tune of "Fat Bottom Girls" (one of Freddie Mercury's best rip your face off blues/rock tunes). The sad consequence being whenever I now hear that song I think of package handling. 

I am empathic about the plumping dye. Took some stuff laced with Barium (!) once in an effort to revel my plumbing to the experts when I showed up at the Phoenixville hospital whining about kidney stone(s). Then had to stand in back of a brobdingnagian Etch-a-sketch while the decision makers peered into the front of it. The best description I can come up with for that experience was a spreading feeling of warmth, tinged with growing apprehension and a special kind of personal alarm. I suppose if that feeling were to unfold while walking one of the Sedona's Vortex trails, it would have been deemed a blessing or at least a positive experience. But the clinical environs of the E-room in conjunction with my growing unremitting dull pain forced subscription to a negative & apprehensive frame of mind. Moreover, in spite of professional medical prognostication, I did not feel completely normal when exiting the building. This due in no small part to the alarming experience of urination the Barium overboard before my release. Nothing quite like that has happened before or since. 
The hospital visit exacted manifold repercussions with a net result. I will suffer more pain than that what drove me there then, before going there again. I suspect that sort of thinking is an intended result foisted on hapless denizens by the front line authorities. 

Let me know if I can help with transportation needs. I get off work around 9:30 AM weekdays. And can cut out at 8:30 AM if needed. 

Wednesday, October 24, 2012

Susan gets a tat

Yup. I got a tattoo today. It's to help line me up on the slab so the radiation will go where it's supposed to go. Here's a couple of pictures:
See that lil' dot?

Here's what it looks like way up close:
Hello Kitty!
Today's visit was to make a mask & to take a CT Scan, with contrast, which is iodine injected into the blood stream. You are warned that your genital area will heat up and many people fear they are wetting their pants :) Been there, done that, checked myself. I feel like an Old Hand at some of this stuff. Once again, my juicy veins were oooo'd and ahhhh'd over by the lovely Nurse Pat. Then she stuck me.
"Just a leeettle pinch now..." they all say.

Next, The Mask. Before the scan, the two nice techs had me lay on the slab that moves in and out of the CT scanner and proceeded to nudge and move me around until I was lying Just. So. They bolted down my shoulders (that's what it seemed like ~ accuracy is obviously very important) and started putting a white gauze shroud around my hairline, covering my hair. I asked them how I would look as a nun and started singing the first line of "How Do You Solve A Problem Like Maria" from the movie, The Sound of Music

Next, The Mask. It starts out looking like this:
The Mask

It feels like it's made out of the cloth similar to the disposable Olay face cloths I use to remove make-up. It is wetted with warm water then put on my face & quickly molded to my lovely contours. The edges then feel like they are somehow bolted to the slab, and there you are... Trapped and trying not to feel claustrophobic & wanting to be a Good Sport and Model Patient for all these nice people who are just trying help me, for cryin' out loud :) 

A Song! A Song! I desperately cast about in my head: I have to have a song to sing in my mind or I will rip this thing off my face and leap up off this table. Of course, the only song I could think of was "How Do You Solve A Problem Like Maria" from the movie, The Sound of Music. Next, I trotted out the catchy: "Doe, A Deer, A Female Deer" from the same movie, picturing those mischievous Von Trappe children hanging from the roadside trees all dressed in their homemade drapery clothes. I sang these two songs over & over in my head for three hours while moving in & out of the scanner. Okay, it was probably more like 15-20 minutes. 

"IGNORE THE PHANTOM ITCH ON YOUR NOSE, Susan. No, you do NOT have to cough. HOLD STILL!" These stern Susan admonishments were interspaced between the verses I sang in my head. 

It wasn't bad. It's Mind Over Matter, fighting down the claustrophobic issues. Here's some cool pictures of The Mask. I get to keep it when I am done treatment, although one tech told me most people never want to see it again. I'm thinking some kind of artwork...
Cool, huh? Damn, my eyebrows look great.

Here's the slab, er, CT Scanner

My Hannibal Lechter impression. Can you understand the claustrophobic feeling?

This is Dr. Peter Ahn, another "Top Doc" in my book.
After all the scans were done, I went to see Gina, The Scheduler for the radiation appointments. I start on November the 9th with a "dry run", where they sit me down and arrange me for the actual radiation machine. Then the treatments will begin on the following Monday and continue for five days a week for six weeks. Thanksgiving & Black Friday OFF :)
I asked several of the tech's how long they thought I would be able to drive myself and they said between three & four weeks, so hopefully, I will only need two weeks of rides. Which I hate to ask for. Just ask my friend, Jill, who has been hovering over me like a mother hen, bless her heart. I hate asking for help. 

Hate, hate, hate. 

If you want a thrill-filled ride on the Schuylkill Expressway with a cranky patient, please leave a comment below or email me & I will email you Jill's email: she is scheduling rides, damn it. I'm trying to get scheduled for 11:00-11:30am slots, but Gina told me the schedule can change. She says to allow an hour for the treatment, although the actual radiation only takes about five minutes. Craig & I have dubbed it "Penn Time", as Penn's time is different from ordinary time, just sayin'. I have clocked the rides at about an hour each way, knocking on wood for bad weather & over-turned semi trucks scattering who knows what on the road. 

There! I've really talked it up, huh?

Next, a post-post op with Dr. O'Malley on the 30th. What food item should I bring in for them?

Thursday, October 11, 2012

another bite of elephant

Yesterday was my appointment with the Penn Medicine dentist, "Dr. E". (Go ahead, you try saying Dr. Elizabeth Evtimovska.)

A Chopper Hopper. One piece of vintage I DON'T want.
I inherited many wonderful things from my Mom ~ alas, her soft teeth gene came bundled with them. Those of you who know me well, know the dental delights I have gone through with my teeth over the years. Implants, bridges, bone grafts ~ from cadavers!, flippers, sinus lifts; many surgeries & procedures to make the smile that I have today. Kudos to my awesome dentist, Dr. Ann McHale, & her staff of Anns (and one Linda) who worry and fret over my teeth just as much & maybe more than I do. Thus, I was nervous to the point of tears about this appointment. Excellent Worrier that I am, I just knew I was going to be scheduled to have all my teeth pulled.

Dr. E took one of those cool panoramic x-rays that shows the whole mouth, poked around in my mouth, took one more x-ray of another war horse of a molar of mine and said... I was good to go. I melted in the chair ~ as if all my bones had suddenly disappeared ~ at this news. And, yes, I cried yet again while pitifully grasping the Doctor's hand and thanking her. I would have bowed & scraped to her if my bones had not just left my body.

And yet another swallow of elephant...
I drove myself to & fro my appointment. It wasn't horrible. Under an hour going in and a tad over an hour coming home. O may it continue!

Check out these hand-made cards Stacie Olsen made for me ~ how delightful! Hand-embossed, all kinds of embellishments; they are lovely. If you don't receive one, it's not because I have deemed you Unworthy, it's because I used 'em up already.

Hand-made & lovely designs. Would it be redundant of me to say "Thank You", Stacie?
These are definitely TNTTO (Too Nice To Throw Out) after receiving. I only hope I have worthy words of thanks to write in them!

And here's a completely unrelated picture of a guy on a TV show called "Abandoned" who looks exactly like my brother Bill:

This is what my brother looks like.
Dang, that's a big diamond.
Here's how my neck is looking these days.

My voice still has that "strangulation" quality. I am unsuccessful at yelling at Phil, our 16 year old, to pick up socks, come for dinner, etc... Craig has started saying "What?" while at the same time walking away from me:) (Actually, he only did it once but I thought it was funny & blog-worthy.)

I am an avid listener of the hour long radio show called "This American Life". I download it onto my iPhone and listen as I fall asleep at night. Last week, the show titled "What Doesn't Kill You" was featured & the first story resonated with me.

"In July, Tig was diagnosed with cancer. A week later she went on stage on Los Angeles and did a now-legendary set about her string of misfortunes. This is an excerpt of the full performance, which is available for download at Louis CK's web site. (13 minutes)"

To me, the first story was laugh-out-loud funny.

Thank you for caring about me & for all your prayers ~ it's working :~)

Friday, October 5, 2012

Okay, a more in-depth post, if you're interested...

So I was pretty darn excited to hear Dr. O'Malley say no chemo & out with the feeding tube ~ Yay! Maybe it was the donuts ~ made fresh daily at the Ice House, yo.
Always ready with goodies I am.

Trish Dooley
The first lady we meet at our appointment was Trish Dooley. I thought her job looked like fun. She put me through my paces on how much movement I could do with my mouth & different vowels. Then she got out an assortment of foods & drinks for me to try to swallow. This was the Best Test Ever & I passed with flying colors. Trish suggested that my nose tube could come out. Yippee! Thank you, Trish!

Next stop, Dr. O'Malley. He concurred with Trish and 1-2-3! out came the tube. Craig was amazed how long it was ~ gross, say I.
He said everything was healing nicely and set me up for my next appointment with Dr. Ahn, a Radiation Oncologist for the next day. We said good by to our friends at Doc O'Malley's office ~ a wonderful team of people whom we had total confidence in. (Plus, they complimented my baking.)

Dorota (R) and her lil' sister!
The next day, my wonderful husband drove once more down that awful road, misnamed the Schuylkill Expressway for our consultation with Dr. Peter Ahn. I thought radiation would be once a week for a few weeks. WRONG. It will be five days a week for six weeks. I will make this my new part time job, as one of Dr. Ahn's nurses said I would be able to drive myself. My heart also sank as I heard what radiation does to your teeth. My teeth have sucked down thousands of dollars already to keep 'em from misbehaving. I think I may have to have a few that my dentist & I have been watching, pulled. sob!
   • I will have to apply flouride gel to my teeth daily for the rest of my life. 
   • My saliva glands will be fried so I will have dry mouth for the rest of my life.
   • I may have to have a stomach feeding tube put in towards the end of the treatment because my throat will be too sore to take food & drink.
All those years of smoking were SO NOT WORTH THIS. This is what I did to myself.
The good side is, it will get rid of my facial hair on my chinny-chin-chin:) and most of all, hopefully will fry any cancer cells still running amok in my neck.

I was given a booklet describing what radiation treatment entailed. The cover looks more like planning for End of Life. What do you think? What exactly are they saying with the lighthouse illustration? Rough seas ahead?

There was a few things in it that made me giggle. This is one of them:
 Whew~ I'm so relieved! But I so was hoping to be able to heat up a can of Progresso in my arm pit.

After hearing all this dismal news, I was feeling a little weepy because I'm a Dental Wimp. All's I can say is Thank God for Fairy God Mothers and Fairy God Friends. One friend decorated our entranceway for the season, plus left a fun goody bag, full of delightful & thoughtful things. I know I'll be using that Teddy, Mo!
Shadow approves of Mums

Corn Shock & adorable scarecrow decor added.

Ain't he cute?

A Bounty of Booty Bag delights! The shaw around Teddy is a Prayer Shaw, knitted by the
 Ladies of First Methodist Church in Phoenixville. Thank you ladies!
So, my 80 year old mother in law not only braved our big exuberant dog, but made her way up our railless steps with that Prayer Shaw that the ladies of her church made just for me! I love you Mom! My friend Mo also left these words of advise for when things seem overwhelming:
"How do you eat an elephant? One bite at a time!" 

I think I'll start on the tail:)

My Hero

Here's my Hero, Craig. 

He has been by my side throughout this whole ordeal, carting me about, waiting in small rooms, waiting by bedsides & being my extra set of ears. Plus, he has taken care of things on the home front ~ weird stuff for him, like shopping, laundry & pet medicating. Oh, and did I mention he also has a business to run?

Thank you so much, honey, I appreciate all you are doing for me!

Wednesday, October 3, 2012

Quick Update

Just a quick up date ~ a longer one to follow in a day or two.

First, thank you for all your thoughts & prayers!

• Doctor O'Malley & Dr. Weinstein & their team are fairly confident they were able to remove all the cancer. In our meeting with Dr. O'Malley yesterday, he said because the cancer was so close to my carotid artery, he is prescribing radiation and chemo. Just a minute ago, his assistant called me and said it would be just radiation ~ YAY!

• Feeding tube is OUT ~ Doc's all agreed I was healing so well, and, I passed the Drinking Test:)

Monday, October 1, 2012

O this lil' voice of mine...

My voice sounds like Marlon Brando's in "The Godfather".  

You would think that that would command a little respect, huh? You are probably imagining my dear family gathered 'round my knee, eagerly awaiting each bit & morsel of audio brilliance to fall from my lips... Nope. I have to repeat myself all the time, wave my hands, throw things and the only way I can yell at my teenager is to send him a text in ALL CAPS.

After being on The Nose Straw for the past week, you would think I would be ravenous, but I'm not. Food looks interesting, smells good and I look forward to eating it again, but it is not making me crazy to not chew & swallow it. Who'd a thought? It will be fun to compose My First Meal. With any luck, I won't have to cook it :)

Medical Stuff: I still have a hard time sleeping at night. I'll fall asleep and wake up in about an hour with my tongue feeling like an old dried out dog toy ~ one of those rawhide pig's ears or something. I wonder, with genuine fear: can your tongue dry up beyond reconstituting? No pain at incision sites, just inside the throat, which is still sore ~ between  0 and 4 on the pain scale.

Tomorrow's post op day, where we hear what the news is regarding radiation, chemo or a combo of the two. I'm so cheap, I'm waiting to hear before I make a hair appointment. I am also going to meet with a Speech Therapist there. One contacted me & told me she would come out to my house. Just for yucks I kept saying, "I'm sorry, I don't understand you" and "What was that?". I had to 'splain I was just joking with her. heh.