Keen-O!

The keenness of Life is renewed with every clean PET & MRI scan.

This past Tuesday I went to Penn Radiology for a PET scan. I was about 45 minutes early, due to the gods smiling upon the Schuylkill Expressway. Michelle, one of the techs, slipped me in early. She remembered me which made me feel good. That's how they roll at Penn.

I've taken a lighter approach to filling in medical forms.

When my tube time was over (about 30 minutes) & my nuclear pee peed, I had several hours before my appointment with Doc O'Malley. I wandered over to the Penn Museum to visit my favorite exhibit, the China Gallery. You should go. It's a mere $10 admission July & August. Be forewarned, only the Iraq section is air conditioned.  

I peered into the crystal ball and tried to see the results of my scan.

Tang ceramics tomb figures. Beautiful.

I started in the Iraq exhibits (getting my fill of AC) & spied a picture of a very familiar-looking object; a CT scanner of the likes of the one I was just in. The researchers used the scans to examine artifacts! Cancer is the least concern of those mummies.

Feeling a bit like an artifact myself.

About a week ago, I noticed that the left side of my neck, where all the excitement had occurred, had a new slight protrusion. It was enough to make me clean out a few drawers, I am telling you. I kept it to myself, and tried to prep once again, for my demise. I had seen Phil graduate which was my #1 Goal and figured well, at least I'd be able to see him off to Northeastern University. ... I kill myself off on a regular basis.

In Doc O'Malley's exam room later that day, I pointed to my neck and joked that I was on Step Three of the Five Steps of Grief. Quicker than a hungry vampire, Doc's hands were on my neck. He looked, poked & prodded and said it wasn't a tumor. He explained that radiation effects pop up for years and years and that's what he thought was happening with my neck. Well for cryin' out loud, life is interesting, ain't it?

2012 Donut Karma. Started it Day 1. 

Alas, although the actual scans popped up on Dr. O'Malley's computer screen, the techs had not yet completed their report. (Yes, of course I took this as an ominous sign. When will I learn?) As he scrolled through them, he said he thought they looked great but reminded me he wasn't able to read them like the techs would. I was to call his office Thursday for the results, giving me plenty of time to flick through various scenarios :)

Thursday dawned and the results of my scans were pronounced "awesome". It's Donut Karma. I bring a tray in for every appointment & almost got jumped for them in a crowded elevator up to my appointment.

That evening, Phil & I attended the memorial service for a woman tragically killed in a car accident. She left a husband and a son Phil's age. Heartbreaking.

It was far too easy for me to imagine Craig & Phil in the place of the grieving husband and son.

After the build-up and release of the anxiety of scan time, I always vow to be a kinder person, more patient and less OCD. So what if the kitchen floor probably should have been cleaned yesterday? Just let it go that I picked the wrong grocery line to check out in. What does it matter if that idiot driving in front of me is a bonafide "Left Lane Dick". Ok, well, that last one still matters.

So, my wish for you? Make hay while the sun shines, look for beauty and try to live each day realizing it's a Gift. Don't forget to thank The Lord :)

As I write this post, a farmer is actually making hay while the sun shines in our field.

Beauty right outside the doorstep.

One Year Anniversary

One year ago today I woke up from a tonsillectomy to hear my ENT doc say, "I am sorry to tell you this but you have cancer."

Looking outside Penn Medicine window September '12

Those of you who have received a cancer diagnose may have experienced the unreality of those first few days with the thought galloping around in your head "I HAVE CANCER" accompanied by your stomach doing a flip-flop every time you try to re-digest the thought.

It's amazing what you can get used to with the passing of time. I still get flip-flops in my stomach on occasion but I'm getting used to the idea that yes, my days are numbered ~ like every one of us. It's just that I've had a longer look behind the curtain than you. It certainly gives flavor and relish to mundane tasks. Mowing the lawn (about a 3-4 hour job) used to peeve me and make me sigh with resignation. I can't say I leap upon the mower seat with zest now, but I appreciate the beauty around me more & enjoy looking at my finished work. This summer, with all the rain, I've certainly had a lot of enjoyment :)

Looking outside the same window August '13

In the past two months I've had another MRI, blood tests and a few doctor appointments. All is well. I will continue this gig for years as this cancer has an 85% chance of coming back in five years if it is going to reappear. (Flip-flop!)

A friend surprised a laugh out of me when he wrote "... At least 50% of (doctors) graduated in the bottom half of their class, and, when you get down to it, academic stardom does not translate into professional competence, so that makes all of them suspect. ..."
I must say, my doctors at Penn inspire my confidence & hope. What ever comes down my path, I will never worry that I made a wrong decision choosing them.

I think I am more easy-going now and ~ this may seem odd ~ in a way, happier. I don't sweat the small stuff so much. I'll catch myself worrying about something and then ask myself, "So what? What's the worst that can happen?" Cancer puts things in perspective.

I always opt for dessert these days. I buy a book if I want it. And, losing 40 pounds has made it more fun to shop for clothes :)

I'm baking again and have been put on a strict "One Pie Per Week" limit by my son who has discovered he likes my pies very much. I've made a few batches of jam, planted lots of flowers and am redoing a bathroom. 

Our beloved Fluffy >"<

On a sad note, I had to put our amazing & wonderful Fluffy to sleep. This kitty was my Constant Companion as I went through operations, radiation & healing. She was always at my side. She was 15 years old and I hope I see her again. She was one of a handful of animals I have known in my life who were truly Special Souls.

Phil & me @ Rolling Stones concert

Health Stuff for others who may be going through this: No sleeping through the night due to a combo of waking up with dry mouth, quaffing water, then waking up to pee several times a night. I've been using a number of mouth-moistening gels & lozenges to find the right combination to allow me to sleep. ENJOY your restful, unbroken sleeps, people! Thank goodness for interesting podcasts, Solitaire & Facebook. 

• My scar bothers me just a little. It feels stiff & stretched & sometimes itchy. Been putting Vitamin E oil on it. I give myself lymph massages because I can feel lymph fluids collecting in the area above the scar as it tries to find a new route. 

• I've been off Gabapentin (Neurontin) for a few months now and, glory be! My memory is slowly improving, if I remember correctly.  :)

• I have normal energy levels and there's no limit on what I can do. This was tested on recent college tours where we walked miles of sidewalks looking at schools. Just give me a water bottle & a place to pee and I'm good to go!

• My left ear is back to full-strength hearing levels. Shadow (our dog) gives it regular workouts.

Look Ma! No cavities!

• Teeth are holding up well ~ radiation is tough on teeth because saliva glands are destroyed. I'm in good hands with the Phoenixville Family Dentistry team of Anns & a Linda.

Since being diagnosed with Tonsil Cancer (Tonsil Cancer still sounds like a fake cancer to me), I have heard of or met three other people who have it. One has had a neck dissection & TORS at Penn as I did, then went to Mexico for a different form of chemo treatment. He did well and I have not heard any updates so I'm taking that as good news. 

My son Phil has his first Gardasil shot, which prevents certain HPV viruses, found to be the new leading cause of throat cancer.

I'll leave you with a beautiful pie shot. Thanks for coming along on this journey with me. Ya all Rock.

Craig's favorite pie. I love you, Craig!

cutting lawns & coupons

Found in an antique store...

Just wanted to chime in with a lovely boring update. The best kind :)

On the Dental Front ~

The Silly Sappy Smiles Family

At my first cleaning after all the hubbub in my mouth, Linda, my Hygienist, and I were both ready to jump as she carefully poked around in there. I did jump at one point which made her jump. After we got that out of the way, we both settled down and got 'er done. Everything looks pretty good & my treatment has changed from "Upgrading" to "Maintaining".
I've started using "Biotene Gel" at night ~ a dab on the tongue seems to help with the dry mouth, so I don't wake up as much for a drink. Since I drink so much water during the day though, I wake up to pee three to five aggravating times a night. I always look out the window on my pee trips, hoping to see a shooting star, a fox or deer wandering through the yard, a skunk even ~ nothing yet! The odds are in my favor though :~)

Cutting Lawns & Coupons ~ At first I was secretly worried that riding on the lawn mower would "jounce my cancer back". I know this makes no sense, nor is it a medical term or concern, but it was still in the back of my head. What cured me was seeing how "other people" mowed our lawn. Terrible swaths of cut brown grass clippings, jagged lines and swoopy-looking margins. (Was it cut this way on purpose? hummm.) I'm too Type-A to put up with that. Cancer jouncing was a risk I was willing to take. Oh the satisfaction of a well-executed cut!

Also, I find myself cutting coupons again. This means I am more concerned with saving .50 on a box of Baggies® than I am about being around to use 'em all.

Phil's Prom ~ 

Yup, there we are with smiles plastered on our faces. (On our perfectly mowed lawn I might add.) Phil sure rocked his tux and his date was a lovely young lady indeed. He goes to another prom in mid-May, so his bum knee is not holding him back on the prom front. Phil has one more year of high school to go. He works hard at his studies and is such a funny & nice person. We couldn't be more proud.

Latest Scan Results ~ 

Thank you for all your thoughts & prayers, peeps!

So far, so good! I go to see a cardiologist in a few weeks. I had a blood test to check for thyroid functions & other stuff & will probably get those results in a few days. I go to see Drs. O'Malley & Ahn in July. As for how I feel, my tongue is still wonky. Pins & needles and reduced taste bud function. I am petering out my Gabapentin dosage and will try to stop entirely in the next few days. Hopefully, my brain cells will regroup and I'll be able to remember stuff better. "Scatterbrain" definitely applies to me now! Energy levels are getting close to my normal laziness. Sometimes I wake up grumpy & sometimes I let him sleep.

Thankfulness Levels ~

Still high! Surely I would have liked to skip along, blissfully unaware of my mortality for at least another decade or so, but being forced to think about the possibilities has also been a blessing. I realize that my family is amazing and able to do all kinds of things without me offering opinions & advice. I have been forced to think about the what-if's and different choices I have. I have even been forced to clean out a few drawers! It's all good.

As The Dust Settles...

Shadow, Friend of Bluebirds.

I just made three doctor appointments ~ ones that everyone makes: a dental cleaning, a ordinary old physical & a cardiologist appointment. Okay, maybe not every one makes a cardiologist appointment. I was advised to make one so my carotid artery (the one that nine out of ten vampires prefer) can be monitored for possible blood clots since it was radiated along with the rest of my throat. The tumor was very close to that artery.

Spent a satisfying weekend cleaning out some of the gardens and have the beginnings of the seasons "garden patina" on my fingers & nails to prove it. I put up a bluebird box yesterday and have two pair of bluebirds feuding over who gets it. Todays mission; buy more BB houses.

Here's the link that will take you to the interview I had with Erica Voll, who writes for the University of Penn website: Penn Medicine Focus on Cancer. I sure hope that it, along with this blog, can offer additional information from the patient's viewpoint for anyone who may be undergoing these procedures.

I had a Band-O-Bald running around the bottom of my scalp.

Info for others who may be going through this...

My new hair is coming in nicely ~ no grey! This picture is 14 weeks out from last radiation.

My tongue still has the "pins & needles" sensation, but it is slooooowly diminishing. I haven't spurted spontaneous tears in a while, except for a totally unrelated event; when the writers of Downton Abbey killed off Matthew. 

I massage my lymphatic fluid vessels every day and try to wear the compression bandage as long as I can bear it. I can see (what I think) is a little bit of lymphedema now and then and it keeps me on the stick. Because I google stuff. And the images for "Lymphedema of the Neck" are NOT attractive.

Here is how my neck is looking these days.

Mouth opening abilities will be tested with the dental cleaning I have scheduled next week. I can open it about two fingers wide. This requires the squishing down of anything bigger than, say, a sandwich. That's okay though. When I was first set free after radiation, I was told to practice opening my mouth until it was at the point of pain, and to exercise my neck by doing a series of exercises. At my last appointment, I was told NOT to do this anymore and not to push my mouth opening any further either, as they are changing the thinking on that. It makes me wonder if we will ever stop learning about our bodies and the ailments they get. 

I recently saw an article published by Reuters about a company called Navidea Biopharmaceuticals Inc. They've come up with a cancer diagnostic agent that "... was effective in identifying the first lymph node reached by the disease in patients with head and neck cancer.  The diagnostic agent, Lymphoseek, correctly identified cancer in 38 of the 39 patients determined to have cancer in their lymph nodes, the company said. ... The company said detection of cancer-affected nodes by "Lymphoseek" led the the removal of only about four lymph nodes per patient on an average, while surgery ~ considered the gold standard to detect the spread of cancer ~ led to the removal of about 38 lymph nodes per patient. ..." I think that's pretty exciting! I sure hope it doesn't cause Hot Dog Fingers though.

My constant companion is a water bottle. 

My scar doesn't bother me one bit, aesthetically. Actually, I think it's dashing and romantic. I even have a vampire bite mark ~ two whitish scars ~ where my two drains were. Several times a day I will put moisturizer on the scar area. I'm partial to good old Cetaphil. The scar still "pulls" a little and pains me just a tad when the lymph fluids make it puffy above the cut. In the photo of my hair coming in, you can see where the neck around my scar is a tad puffy today. 

Couldn't resist buying these lovelies...

I bought a big, floppy straw hat to wear outside, since I'm to have no sun on my neck for this first year. Plus, I couldn't resist buying some pretty flowers when I went to get the bird boxes.

Speaking of flowers, I'm thinking of myself as more of a "Perennial" than an "Annual" these days :)

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!