Tuesday, November 27, 2012

Hair today...

Yay! I finally have something to write about ~ I'm losing my hair! And here I always thought it would be our teenager that would make this happen. Just kidding, Phil is a wonderful teen ~ nay, a man in teen clothing.

Suddenly! This morning in the shower a great glob of hair gathered at the drain, plus more as I combed.  Dr. Ahn said there would be days like this. Actually, he told me that I may lose the hair around the bottom of my scalp, and that's where it's coming (going?) from.

On the bright side, my left cheek is as smooth as the day I was born :) No facial hair that I can see.

I'm losing hair~
it will come back.
I'm losing taste~
it will come back.
I'm losing voice~
it will come back.
I'm losing cancer cells~
it better not come back!

My friend Jill has organized my limo service which kicks in next week. I had hoped to drive myself longer but the doc is putting me on narcotics soon and says I can't drive when I'm on 'em. It should make for some dreamy trips down the Schyulkill! On the other hand, if I drove on drugs, I would be like 25% of the other drivers. Many heart-felt thanks to my Drivers.  <3  (that is the symbol for a heart, Aunt Sue & Mom!)

Today's trip should be interesting. I'm watching the snow fall & the cars crawl. My appointment is at 11:30 ~ think I'll be leaving soon with my empty Ragu jars!

T'was a slow but easy ride down & back from the city. I saw several cars in ditches and one over-turned truck. The good news is, I did not have to use my "equipment". No lady-like Ragu jars for me; I brought a honkin' big Tupperware vat.

Friday, November 16, 2012

My Brother Bill chimes in again.

My last post ended with the fervent wish that I would never have to pee while on the Schuylkill Expressway. Brother Bill quickly replied with the following missive...

Peeing on the Schuylkill:
Someone should write a book. My fellow commuter, Bob favored orange juice quart containers (due largely to Bob's predilection for robust swigging of OJ while at the wheel and his questionable vehicle  housekeeping standards).  Back then in the 70's they had fold open spouts rather than the modern screw cap configuration. The spout afforded full nozzle insertion.  This reduced the challenge to simply insuring gravity remained a friend. The procedure was best executed while stopped in traffic as it required posturing & attention not commensurate with vehicular operation.  Bob reports the process is typically at least messy, particularly if a quart container is not enough. And of course one is left holding an open container of urine until arriving at destination. 

I understand from another friend, Roseanne that a Ragu spaghetti sauce jar is more suited to those members of the gentler gender. That has the added luxury of resealing the container as long as one keeps track of the lid. 

Me, being a Buckwalter boy,  well I typically do not plan ahead until I have several painfully uncomfortable experiences "under my belt". Subsequently my approach is to put off relief until the point of near uromysitisis* poisoning, then pull over, get out and pee.  Along the SureKill that means:
a). If gridlock, I have a suite of spectators who are afforded the complete spectacle of an understandable but socially repugnant enterprise. 
b) one wheel of my ride is strategically selected for a golden shower. 
c) I subsequently have time to reflect and measure the new found relief against the embarrassing new level of regard the local element of my fell motorist hold for me.  Fortunately those days were prior to the now ubiquitous video and camera phones. 

This approach, however, did once have a ancillary benefit. It was a dark and stormy night. I was trying to get home in rush hour traffic and snow in a high mileage vehicle that had developed a new noise. The noise, on reflection, was isolated to either a bad wheel bearing or something gone wrong with a wheel brake. When I exited the vehicle I selected the most suspect wheel to huddle over. Sure enough, most of my excretion was turned to steam on contact with the wheel. The bearing was so far gone it was making things very hot.  I believed I helped cool things a bit. 
That evening I had passengers on board because:
a) the snow storm was bad enough they left their cars at work to catch a ride in my 4X4 Bronco. 
b) They were celebrating the approaching holidays with adult beverages prior to the trip. 
c) their homes were on the way to my home. 
We all found the episode to be a source of humorous diversion largely due to item b.  
Guess I'll have to start saving Ragu jars :)

A mythical medical condition employed to explain to law enforcement officers as to why you were urinating in public.
"If I don't go when I feel like I have to...I could get Uromysitisis and die!" -- Seinfeld (The Parking Garage), paraphrased

Thursday, November 15, 2012

3 down, 27 to go

There's my Mask, waiting for me.
Here's the Linac machine (a.k.a. The Zapper) that kills cancer cells ~ and many other cells ~ in daily five minute increments.

The Techs are awesome, supportive & fun. They spend their working hours down deep in the bowels of the Perelman Center building. N'er does a ray of sun ever reach its beige colored depths, but the people who work there are mighty sunny :) I've been thinking of funny things to do to the techs...

• Use an eyeliner pencil and make a whole bunch of dotted "tattoos" around my real one.

• Tape "Help Me" on the soles of my shoes, ala Catholic Wedding High-jinx Style.

• Point to the person next to me when my name is called (already did this & it got some smiles).

How does radiation feel? 

If The Zapper didn't make noises, I wouldn't know anything was happening. 

Here's what happens when I go for treatment...
My name is called in the large reception area, and I go back into the spa-like changing area & don my choice of two designer johnnies ~ one ties in back, the other worn like a robe. I get to keep my clothes on from the waist down, plus my shoes. I wait a few minutes in a smaller waiting room. Usually there are a few other people there and I wonder what battles they are fighting.

Next, when my name is called, I go down the hall to one of the five Linac machines housed in rooms of thick walls & huge heavy doors (I'm guessing the door is about 4" thick). I take off my outer robe, lie down on the slab, grip each handle at my sides and wait as the two techs bolt my mask down to the table & move me about slightly to line up the laser beam with my tattoo. The techs leave the room, shutting that honkin' big door behind them. They reassure me if I have any problems, just raise my hand, as they are watching me every second through a camera or a window. 

Got me both ways :(
As long as I'm not late for my appointment
or do not have to pee, I'm okay with it!
My eyes are closed due to the mask, and I start mentally singing my "99 Bottles of Beer" song as The Zapper begins to make assorted humming & adjusting noises. The table I am lying on moves slightly forward and back until I am lined up. Various ranges of humming noises and bright lights start happening which I can see through my closed eyelids. There is a noise towards the end that has a higher-sounding more intense buzz than the other noises & I'm thinking that's when my radiation is being delivered. The first time, I thought I felt all the cells in my neck sit up and say "Wot the Hell?" and I haven't had that feeling again since. This treatment takes about 5 minutes. I get to about "72 Bottles" before I hear the door open. I get off the table, go change & am on my way home. Yesterday, since my appointment was at 8am, I got to go through rush hour both coming & going... w00t.

How do you feel after treatment? 

So many people have told me I will be tired that I think I am self-fulfilling that, whether I am really tired or not. I could be catching Craig's cold, or it could be PMS lurking, but I spent most of yesterday snoozing on the couch with occasional guilty bouts of light housework. I can't believe that I would feel any effects after only three zaps, but my incision site on my neck feels a bit tight & sun-burn-y. My tongue feels a little thicker. Dr. Ahn prescribed this for me for further down the treatment road when my throat & mouth are sore:  
"Magic Mouthwash #18" ~ I ain't kiddin'!
It's the first indication of humor I've ever seen on a medicine:)

I'm told that since The Zapper is indiscriminate on what cells it destroys, the best way for me to build up my good cells is by consuming lots of water & protein. I have to time the "water" part just so. I'm sure I'll have some "GOTTA PEE" moments on the Schykyilllksdjfkjas;lfjsdf Expressway. 

Maybe by the end of my treatment, I'll learn how to spell "Schuylkill" :)

Sunday, November 11, 2012

Dry Run

Friday was Dry Run Day to finalize position & area to be radiated on my neck. (Yes, I bought a bag of donuts for the techs.)

What to wear, what to wear...
I was led from the large reception area to a spa-like setting with ambient lighting, soft colors on the walls and carpeting on the floor. There were several large changing rooms and instead of big fluffy spa robes, there was a large selection of hospital johnnies to choose from. This solves my personal issue of coming up with 30 different fashion looks for the duration of my treatment. Here's my choice for Friday:
Feelin' groovy

From there, I was led into a room where I was to have a few more x-rays taken and final adjustments made to my mask. I met two more lovely people, Danielle & Erin, who bolted me down to the table & put my mask on. Pictures were taken as I sang my brother Bill's song suggestion in my head: "99 Bottles of Beer On The Wall". I got to 46 bottles of beer by the time I was done. Danielle assured me that actual treatment would take less time.
Danielle & Mask


As the techs were adjusting my masked self on the table, they were telling me what they were doing. It was mentally painful for me to not be able to speak, as I had the mask mouthpiece in my mouth. There's only so many inflections you can put into a muffled "ummmm-hummm", and certainly no witty quips, which this situation just cries out for.

When I was all done and leaving the spa environment for the big waiting room, I heard the Bell being rung. There is a silver ship's bell in the room & when patients finish their last treatment, they step up and ring the bell. A huge burst of applause & cheers greet this happy peal. Today's bell ringer was a boy of about 9 years old. A large group of his family was gathered around wreathed in smiles & tears as pictures of them with the smiling young boy were taken. It was very moving. His Mom was holding a shopping bag with the boy's mask in it.

Last Treatment Bell
So, Monday I start my own journey towards the bell.

Wednesday, November 7, 2012

en Garde!

I am still learning that I never know which way the road will twist. 

On Monday I got a call asking me to come down to HUP Wednesday (today) and have an ultrasound & a needle biopsy of a lymph node on the right side of my neck. (All the partying was recently done on the left side.) Dr. Ahn saw something on my most recent CT scan which he wanted a closer look at, since it could change the radiation treatment.

I had a whole day to stew about it & clean out another drawer or two.

I decided I could handle another neck dissection, but if I needed another TORS operation that required a breathing tube, I may just walk out in the woods somewhere, pick a nice place to sit and start singing my Death Song, just like those old Native American women.

I thought about a few friends of mine who have had needle biopsies of their breast tissues & how painful they said they were. Sitting between these two girlfriends who have had breast biopsies was like sitting between two women comparing painful birthing stories :)

So, you see, I was fully primed & jumpy when I was lead into the small examining room and asked to lay on the table. The ectoplasm-like stuff that I remember from pregnancy ultrasound days was applied and the right side of my neck was carefully ultrasounded. Pictures were taken & examined. Drs. Jones & Patel figured out where they wanted to go in for the samples. First they sprayed my neck with numbing spray and then I was given a needle of novocain, which felt like ~ all together now ~ "a leeeettle pinch". Then, with Dr. Jones, the experienced doctor looking on, Dr. Patel (the learning doc) proceeded to take biopsies with another needle. When I heard her (Dr. Jones) asking Dr. Patel to "try to move the tip blah-blah-blah...."  (medical talk), I had to pipe in with Yoda's saying:

Do or Do not. There is no try.

Do or Do not.
It didn't take long and my one foot only lifted off the table slightly at one point ~ more in anticipation of pain than actual pain! So for all of you who are stewing about a needle biopsy ~ STOP right now, because it doesn't hurt. At least the type & area that mine was done did not hurt. Sure don't want to try one in the boob though.

Also, the samples were looked at directly & I was told without delay that there was no cancer in that lymph node ~ just normal lymph node-y stuff.

I was given a Instant Ice Bag thingie & instructional discharge papers which as far as I know are still sitting by the table. I was so relieved to hear that one side of my neck was still behaving that I gushed my thanks and was back on the Schulkill Expressway in two shakes of a lambs tail.

My neck is just peachy & here's a picture to prove it. Just a wee tiny red spot. Bet you can't even see it.
Now I can look forward to celebrating Phil's 17th Birthday dinner at the Black Lab Bistro in Phoenixville with Doris & Phil (Gran'ma & Gran'pa)!

Knock on wood.

Test run for radiation starts this Friday. I'll report back here with pictures :)

Friday, November 2, 2012

Kicking Some Cancer Butt

I went for my post-op, one month out after the TORS operation and was oooo'd & ahhhh'd over about how well the surgeries were healing. Dr. O'Malley was pleased. Of course, I was wearing my Kick Cancer's Butt Boots and bearing another catering tray of Ice House donuts ~ what could go wrong?
Kick-Butt Boots

I still have an ever decreasing area of numbness around my left ear & left side of tongue, but I am eating & talking ~ nay, even yelling at times ~ almost at my pre-surgery range. I am also delighted to find I am able to issue my ear-piercing unlady-like whistle at practically the same startling volume as my old self. Surely God is Good:) My sleeping is much improved. After the surgery, I used to sleep sitting up in bed ~ awkward ~ and only for exactly 1 1/2 hours at a time until my dry mouth woke me up. Now I sleep up to five hours straight.

Because I elected to go for the TransOral robotic surgery (TORS), the healing time was much shorter & the radiation level does not have to be as high as if I were to have undergone traditional surgery. The traditional surgery for this type of cancer is very rough because of how deep in the throat the cancer is located. Bones would have to be broken, extensive cutting & scarring... a possible tracheostomy while healing took place. It would have been a hard, painful road to travel & my hat is off to those who have gone that route. :'(

I'm grateful for the sheer luck of being located near  Drs. O'Malley & Weinstein & the amazing staff at HUP.

Next up, a "practice run" on the radiation gig on November 9th, then the real thing on the 12th. I'm thinking I should bring donuts.