A day of reflecting.

Vilma Griffiths, BSN, RN, OCN

On my visit Thursday, I tried to get on the scale fully loaded: water bottle & heavy purse. The friendly but gimlet-eyed nurse spied what I was up to ~ foiled! ~ and asked me to put them aside before getting on the scale. Earlier in the week, I contemplated wearing my cowboy boots and filling up the extra room around my legs with spare change & claiming any jingling sound was from my spurs. I still managed to keep my jacket on and I thought heavy thoughts as I was weighed. Two pounds up from last weigh-in & for the first time in months there was no concern voiced over my weight.

Vilma, the nurse who has been with me for my decent & travels through Radiation Valley and the climb back out, chatted with me for a bit about function levels of taste, swallowing, pain, etc... She is always ready with a warm hug and a genuine interest in my well-being. God bless her!

Reflecting 

I waited in Examining Room 8, anticipating a fuller report of good news on my cancer, after getting the brief email that the PET scan looked good. I thought about all the other people sitting in the other rooms up and down the hallway, waiting to hear... what? What kind of days do my medical people have, breaking bad news in one room and good news in the next? How do they insulate their psyches?

Right Now, In The Moment, I feel optimistic and will try to live currently rather than Future-ly. I am doing all I have been instructed to do to keep good health. Am I living now as if this could be my last month/year/decade? No. I feel like I'm still waiting for other events to play out. I'm waiting for my husband to not have to work seven days a week. I'm waiting for my son to be settled and happy in his college/job/marriage. There's stuff I would like to do; go out West & dig for fossils and pan for gold; walk on a warm beach & look for shells. The reality is: Our son Phil will be just fine. He is a good, smart, mature young man. Craig will probably be working seven days a week for quite a while yet, as Phil has a bit of schooling to go and Craig is a Good Provider. I need to find a satisfying pursuit so I can continue to live in the Present and stop doing the what-ifs about the Future, whether they be happy or sad. I'm on the brink of something.

I think Craig & I were in this same room when we met Dr. Ahn for the first time after my operations and before the radiation. Dr. Ahn told us of all the side effects of radiation, and they were legion. This radiation treatment, provided by the nation's top Head & Neck specialists, would hopefully eradicate any cancer cells that eluded TORS. When I thought of the Now and the Future (survival!), the future side effects of radiation seemed distant and oh so minor after a cancer diagnose. "After Treatment" seemed so very far off as we all sat in Examination Room 8 on November 12, 2012. I remember Dr. Ahn having a moment's trouble figuring out the number of days for something and I piped up, "Wait ~ an Asian who can't do math?" For an uneasy second, my heart stopped, as he was silent. "Crap!", I thought in a panic, "I've offended my doctor on our first meeting!" "Hey, that's prejudiced!", says Dr. Ahn in an upbeat tone, and everything was okay.

Over four months later, I sit in the very same big beige chair as Dr. Ahn numbed my nose for a look down the pipes. He and I both watched the video screen which showed the progress of the teeny video camera up my nose & down my throat to the area where the tumor had been. There was a smooth, flat, yellowish scar area there. Dr. Ahn says they see this type of presentation sometimes & will keep an eye on it. He told me of some things to possibly expect in the future:
• 40% patients develop a thyroid issue, because the thyroid is radiated during treatment. My blood will be tested for thyroid function twice a year. 
• There is a possibility of a blood clot forming from my carotid artery also getting radiated. This clot could break off and possibly cause a stroke. I will see a Cardiologist who will monitor me.
Both of these possibilities are easily treated with... a pill. It looks like a freakin' pill case may be in my future after all. It's gonna be the prettiest damn pill case I can find!

Reflecting

After my appointment, I felt peace. I decided to finally check out the Penn Museum. I felt insignificant as I viewed various scraps and shards which were all that were left of entire civilizations which rose into being & fell into obscurity. What does my one little puff of life matter? Millions have risen & fallen before me and perhaps millions more after me. I wandered past statues of great kings, whose very names were lost in the obscurity of time. I thought of the Bible verse: "For all flesh is as grass, and all the glory of man as the flower of grass. The grass wither, and the flower thereof falls away: but the word of the Lord endures forever." 

I wandered into the China Gallery, which is housed in the tall round tower that I used to look down at from various hospital windows and wonder about. This Gallery was my favorite room. It housed sophisticated sculptures and delightful novelties.

When I left & walked up the sidewalk between the hospital and the museum, I felt that a chapter in my journey was at a close. I had vowed that I would get to this museum as I would look down on the tall round brick tower from my different hospital rooms and wondered what was inside.

Main hospital at HUP where I would look out windows
& speculate on the contents of the "Round" tower.

That curious round tower!

Something kind of bazaar...

Some minutes after getting the news that my PET Scan was clear, I happened to look down at my left palm and saw a little cut that I didn't remember getting. It started at the bottom of what I think is my palm's Life Line and extended for 3/4's of an inch further. I'm taking it to mean that my life had just been extended :)

Giant Sighhhh :)

Dr. Ahn
Don't you call him Dr. Off (his joke, not mine)

Dr. Ahn.... Ever a man of few words & even shorter emails:

Ms. Bolinger,
 PET scan looks fine. I will see you shortly.

 Whew!

Thanks all for your prayers, peeps.

I go to see him this Thursday for a follow-up.

Nuclear Farts

I had to add Marvin the Martian to this sign...

Insert Body Here

On Friday I went in for my PET Scan. I had one back in August when I was first diagnosed with cancer so I knew the drill. Things were done a little differently at Penn than they were at our local hospital, who used a small lead-encased vial containing the radioactive material which was carefully extracted and fed into my IV. At Penn, a dishwasher-sized machine held the material & delivered my dose without the nurses having to fiddle with scary containers. I reclined in my honkin' big recliner in a curtained off area with dimmed lights and "relaxed" for about an hour while the marker fluid flowed into all my nooks & crannies. Before the scan, I was asked to use the potty, and once again wondered where all the radioactive pee went. And what about farts? If I farted, would it be a Nuclear Fart, destroying all humanity within scent radius? Fortunately, being the Lady that I am, humanity has been saved.

Michelle, who worked the PET Scan.

Me, relaxin'. That is the machine that delivered my dose of, er, marker fluid.

A few days before my scan, I was convinced I had the worst & most stubborn case of painful Thrush ever. I phoned Erin McMenamin, my Oncology CRNP Extraordinaire, and she asked me to stop in after my scan & she would take a look, bless her heart. I brought some goodies with me, in appreciation of seeing me without an appointment. (Make your own cute Spring-Cone.) Erin sat me down & clicked on the Flashlite app on her iPhone (heh-heh!), and took a look.

Little cones filled with Happiness :)

"No, you do not have Thrush." She asked if my tongue felt like pins & needles.
"YES! Exactly!" says I. Erin explained that this is because my nerve endings are healing so this is a Good Thing.

Hurrah! I am so relieved to hear that this is all part of the healing process.

And here is a picture of Erin, for whom I am mightily grateful for:

Erin McMenamin, MSN, CRNP and
TCP (Totally Cool Person)

It is Sunday night as I write this. I find that I am only a little nervous about my scan results. I have not cleaned out any drawers all weekend. (Although I did not send out invites for Easter at our house ~~ just in case.)

Things I am noticing... 
(feel free to skip, I write this mainly for others in my Throat Boat)
• My hair is growing back! I backed up to Craig, flipped a handful of hair up and commanded, "Look!" Craig asks, "What am I looking at?" I turned around and smacked him in the arm. "My HAIR is growing back!" I explained.

• Sometimes I sleep great & sometimes I am awake until Dawn spreads her rosy fingers, yada, yada, yada. I fill the space between the small hours by listening to podcasts. A recent one I've stumbled on after googling: "Stories", is one called "Risk". One story a week is produced and I have listened from 2010 all the way up to the late 2012's. Sleep better return before the stories run out! Other favorites are This American Life and Selected Shorts.

• I do the Lymphatic message on myself daily and try to wear my attractive compression bandage as I go about my day here at home, whipping it off & behind my back when any of the boys come home. My left ear gets blocked up, then clears. I'm guessing this is because of my lymph fluids saying, "Where the heck are we supposed to be going again?". Also, a tooth-achy kind of feeling in my jaw that comes and goes.

• And my poor tongue! It's sore and it's tiresome to eat and talk. I didn't realize just how much I thoroughly enjoyed those two activities. Craig's probably praying this continues, heh-heh! A Silent, Skinny wife.

• TMI Alert!
Because my tongue and throat are a bit different than my original stock issued model, eating takes time. My small bites of food tend to form into a big mush ball and I have to keep quietly coughing it back up into my mouth for several go's before I can finally swallow it. If I am by myself, I cough it up with all the gusto, noise and facial contortions of our black lab, Shadow. I drink lots of water with my meals.

My 15 minutes of Fame, courtesy of Cancer

I was contacted by Penn for an interview about my experiences as a patient and to link this blog with their page so others going through this can come visit me. I am thrilled to help anyone I can. When the interview is up on their site, I'll post a link.

So now it's Monday

Waiting for results. Will post when I hear!

The C-Bomb

Me (L) with my teeny but fierce
PT trainer, Dana. Jeeze, my
hair looks really stupid.

I finished my last physical therapy session at Apex for my left arm, which was weak because muscles had to be cut during my neck dissection. My arm is almost back to normal now & able to carry multiple shopping bags :)

'Ears to you!

I am nearing the end of lymphodema therapy at the Radnor branch of HUP. Stephanie taught me how to gently massage the lymph areas to drain the lymph fluids. I have to wear a compression bandage around my head for several hours daily, like an old-timey toothache cure. It makes me giggle every time I put it on because it reminds me of The Three Stooges and plus, it makes my cheeks puff out. I have not allowed my husband Craig to see this lovely vision, and rip it off whenever I hear him coming. I can dress it up for seasonal occasions by adding assorted animal ears, though. Easter is coming, so I made bunny ears. Too bad I don't have the boobs to go with.

Recently, I stopped at our local market to pick up some items & as I was at the self-check out register, the woman employee who stood at the main register said,

"You look great! I almost didn't know you, you've lost weigh!"

"Yes! It's the Radiation Diet!", I piped up brightly.

The poor woman! Her face fell instantly and she started stammering, "Oh! I'm so sorry!" I apologized for dropping the C-Bomb on her, explaining that I was used to the idea but I keep forgetting how jolting it can be to hear "CANCER" for the first time. I'm sure it conjures up a different & horrible picture for every single soul who hears that word. Who doesn't know of someone who died of cancer?

I felt bad for the awkward spot I put her in and I silently vowed not to do that to people anymore. I'll be hearkening back to my Mom's training of "just graciously say thank you". Let me get it out of my system here. RADIATION DIET! RADIATION DIET! RADIATION DIET!  Whew.

Dinah, making sure I cross my t's and dot my i's.

The only issue I (think I) have now is this damn thrush in my mouth. I just finished up my 3rd round of Fluconazole and it seems to be less and less effective. Eating some foods is like eating shards of glass. I'm finding that once again, I'm less & less interested in food. This is a quandary at our house because my husband & son don't want to eat because they don't want to gain weight, especially Phil, who is couch-bound from ACL surgery last week. I have to eat but don't want to eat. I even bought a box of Frosted Raspberry Pop Tarts ~ my own version of crack ~ and they are still here after three sunrises. I've had a Secret Pop Tart Addiction ever since my Mom refused to buy them, almost half a century ago. When I share this painful addiction, people look at me like I'm nuts. "POP Tarts? Yuck!" they say.

I haven't tried a glass of wine yet, but look forward to it!

I do buy healthy foods ~ honest. I bought green grapes and discovered I could barely open my mouth wide enough to fit a grape in. If you are reading this and are undergoing a similar procedure, please do your mouth exercises to keep the scar tissues from becoming wooden and immobile! I constantly have to remind myself of this.

Life is resuming a more normal pace & I am mighty grateful!