The Tardy Bell

Hello all you peeps! As I've written emails to some people, texted or talked to others, I realized I'd better get on the stick and write a new post ~ WITH pictures of "The Ringin' 'O' The Bell". For cryin' out loud, how could I omit that? Thanks, Miz Munchberry, for pointing out where I was remiss. So, here ~ without further delay, are the Bell pictures and oh what a happy day that was.

Ta-Da! Craig, myself & our son Phillip on Christmas Eve ~ last day of radiation.

And here's my radiation buddies, Theresa & Don:

Don & I were on the same radiation schedule & he rang out on Christmas Eve too!

My actual doctor appointments are slowly peetering out to every few weeks, once a month, etc...

• I have an MRI scheduled for February 19 and a PET scan in March. 

• I will go for twice weekly therapy for my lymph nodes in my neck for a few months, called "Complex Lymphedema Therapy". This will help drain the lymph fluid from my neck, lessen the swelling and aid in the healing. 

• I will go for PT for my shoulder to get back full movement of my left arm. 

Erin McMenamine, my most awesome Oncology NP of the amazing silver hair, is so reassuring to talk with. She listens to my fears, tells me they are normal and only has encouraging words to say. God Bless you, woman!

I keep my medicines in a pretty lidded basket in the kitchen, trying to disguise any taint of illness from Phil. I am happy to report that I am only on one nerve pain medicine. Way down from the oodles of bottles & potions I juggled in days past! I will begin down-stepping the Gabapentin starting next week, as per Erin's orders. Hopefully, my missing brain cells will return and I can stop going through packs of "Post-its". My computer screen is wreathed in Post-Its!

What else? I have taken a few yoga classes until I caught Phil's cold ~ bah! Feeling ready to start yoga-ing again in February. I have scheduled a Hair Appointment. I have gone shopping at the mall. I have prepared actual dinners with a protein, a starch and a vegetable. Of course I have baked:)

Now it's Phil's turn for medical stuff. He came down hard on his left leg during a basketball game & heard a pop sound. Diagnose? Torn ACL, nine months in a brace, lots of PT. My heart bleeds for him.

Dr. Lipton at Brandywine Orthopedics surveys the damage.

Seems I'm not the only one in the fam getting MRI's.

Should I suggest he start a blog?

My radiation mask is still rolling around in the back of the car. I absentmindedly push it aside to load groceries.  I have mixed emotions about it. I was thinking about jamming a cigarette in the mouth section and hanging it up on our sunporch, where Craig smokes. Then I thought that would just annoy him. I know he doesn't want to smoke. I know he wants to quit. He will or he won't. (How Yoda-like:)

But I hope he will. I remember a few years ago when I was still smoking, I would wonder, "Is this the cigarette that is going to be the last straw on the camels back? Is this the one that's going to send my nice, delightful healthy cells over the edge?"

Thanks again for keeping me in mind & for the prayers. Boy, I sure appreciate 'em and I am daily humbled by the care and concern of my friend, family & medical team.

Ya all ROCK!

Happy New Year!

A Happy New Year to us all!

I realized an update is way overdue!

I am feeling so much better these last two days. I feel like I've
turned a corner ~ yay! Yesterday, I had the energy to put Christmas
away (mostly), and am finally keeping up with the wash. I am starting
to think longingly of yoga class and dreaming of making lovely home-
made dinners again. Cooking & cleaning: a sure sign of returning health!

I go back in to see the docs this Wednesday, then again the end of
this month & in March. A PET scan will be taken a few months out &
will hopefully reveal a healthy neck.

The recovery starting on Christmas Eve was pretty rough. There was a
time when I just cried, bent over the sink with my pills clutched in
my hand. It was so hard to take them with my throat so sore. This was
the "Magical Weight Loss Period". I didn't eat anything for days &
days and didn't care. (Remember, I started out with a healthy
reserve!) I was barely drinking. I slept all the time, with Fluffy, my
couch buddy always with me. What a good cat.

Now, I could care less if I never saw another Bravo show, I've watched
so many!

I got a kick listening to Craig & Phil make a nice dinner for
themselves while I was under. Phil went to the market and bought all
stuff you would be proud of; produce, fresh scallops, etc... They made
a Surf & Turf meal of scallops & steak, complete with two vegetables.
AND CLEANED UP! It was a proud moment for me, I'm telling you. They
did this several times since.

Wednesday: Today, I went for my first of quite a few follow-up visits. As expected, everything is healing along to schedule. I was told that my taste buds will come back in about six months, my throat will take a good 14 months to totally heal (!), no sun on my neck for the first year, etc... All stuff I can live with, and, have no choice in anyway so I'm not sweating it. I was reprimanded for losing weight, but am secretly delighted. I got the green light to do yoga & go to the gym. One of my complaints has been fatigue and it has been shown that the more exercise you get, the better you beat fatigue!

Don & Theresa, I hope you are reading this, as I am wondering how you are. Please email me at suzan@ptdprolog.net and let me know how things are. 

So, I'm on the mend. My eyes tear up when I think of all the
kindnesses extended to me and my family during the last 4-5 months. I
am so blessed to have you all in my life! The thoughtful cards and
gifts, the rides down to Philly ~ I couldn't have done it as well as I
did without all your love, caring and prayers.

Down to the wire!

Three times a day.

My friend Mo told me what her Dad used to say:
"How do you eat an elephant? One bite at a time."

I am down to my last bite of Radiation Elephant this Monday the 24th. The last time I will ever have to lie down under that huge Linac machine and have my head bolted to the table via The Mask. Hurrah!

The only thing I will miss is the wonderful people I have met along the way. I am having a hard time gathering my thoughts because of all the meds I am on, but my new buds, Theresa & Don have been pestering me to make a new entry. So, this one's for you, Theresa & Don! Don is undergoing the same treatment as me, as far as the mask & radiation schedule goes. We will both be done radiation on the same day. Don is much braver than I, as he is undergoing chemo at the same time :'(

Theresa & Don

A handsome ER doc. (Yeah, I had an overnight at the ER)

I sighed to Craig, "I can't WAIT for this to be over!" & he replied, "Yeah, but you will miss the people." I've got to say he is correct. Here's some more pictures of people at HUP who have made me smile &  inspired me... 

Kimberly & Paul. Paul rang the bell last week.

Add caption

Kay & Carol, volunteers in our
little corner of HUP. (They are not
conjoined twins.)

How I productively spend my days...

Radiation Vacation

Mo's Creations ~ beautiful, huh? I have to give the toolbox back after Christmas:)

I seem to be having a hard time gathering my thoughts enough to create an interesting post for you-all. They scatter here & there more than usual. A friend told me this was the case with her also when she was on one of the same meds. *whew* So that's why I haven't updated for a while.

Today will be my nineteenth out of thirty treatments, so I feel as though I'm coming down the home stretch... Come On Sea Biscuit! the crowd in my head roars.

Today's appointment was pushed back until 6:10 tonight... because the machine broke down. Ummm, huh? I wouldn't want to be the person it broke down on, nor the first person to go after it has been fixed. My one nightmare as I lie strapped to the plank under the humming machine is that it will run amok and keep radiating me until my neck burns away from my body, while the techs frantically try to turn the machine off.
There. I said it.

Christmas lights covered in snow.

I put up lights & decorations (such as they are) several weeks ago. I sure like me some Christmas lights!

Thin & crispy ~ not what I was going for. 

I saw a cooking show where Sand Tart cookies were featured. My mouth watered as I viewed the soft, puffy cookies. "I'm going to make them!", I vowed, and got the butter out to soften. Well, I screwed up somewhere along the line because instead of soft, puffy delishishment, I got hard, crispy, radiated throat-ripping flat cookies that sat around the house for days and were finally banished to the trash can. The first time I can ever remember throwing away cookies :(

Elephant Eating Chart

So says Miz Ellie

And here's a snappy saying from my antiquing bud, Ellie Carroll, who always has such a sunny outlook on life :)

How I'm Feeling (Bitch & Moan section)

At my eighteenth treatment, I am on Gabapentin; a nerve pain reliever, Magic Mouthwash; a numbing agent, a mouthwash for thrush (a condition that seems to come with the radiation territory), a topical numbing gel for the inside of my mouth, a (what I think is a) mild narcotic for throat pain and (Oh how it kills me to say this word...) a STOOL softener because all the meds do a number on the pipes. Oh, plus fluoride for the teeth every night. I was contemplating getting myself a pretty pill case then thought in horror: "Old Lady-hood is raising its ugly head". Plastic baggies will do just fine for a few more weeks.

Laundry Station
a.k.a. Dining Room Table

My throat & mouth still hurt, despite the meds & I am tired lots. Instead of doing the wash, cleaning & marketing all in about a half a day or so, I now choose which one task has to get done. The family is not complaining one bit, and in fact, probably don't notice the wafts of dog hair. As long as clean underwear and socks magically appear on the dining room table, they are fine. 

Bless their hair covered hearts.

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!

Update:
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.

The Secret Life of Radiation Techs

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 :)

*

Uromysitisis
	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