Tuesday (11-23-2010)

Tuesday, Tuesday...so good to me...

Feel like I'm inside a tin can...

So happy to be home, but.......the shakes are taking over my entire body...

Shakes and neuropathy are a major influence on my daily agenda..

today: stay home, rest and rest and STOP SHAKNG, PLEASE......

..5FU humming along in my little pouch...

The tremors just keep coming....my legs....my tummy.......ugh..

I made it through seven....

Monday (11-22-2010)

MONDAY MORNING.......


It's 6AM and David is up, showered and dressed..I look up from our bed with sleepy eyes....

"Best get moving. Today's the day."

I totally forgot..(really, I did)...

Shower, dress, breakfast, and in the car..

Traffic is backed up and dead stopped, but David knows all the side ways to go....

He's good with that......."you have to be in Boston by 8..."

Park the car and upstairs to hook me up...the needle doesn't hurt at all (thank you John)....

Downstairs to see Emily (my nurse practitioner) for the go-ahead...

"you are the best we have".....she says....Others are doing good, (but Gail is doing the best)...

I let them know that it's because of my friends and the prayers and energy they send my way...


I will do this!


Back upstairs for my infusion...

I get a bed...I get the quietest room....

For the first time, I sleep, sleep, sleep....

David sits by my bed, reading his book and watching over me....He calls this my "dormant state" and tells me he is my protector while my defenses are down......

Nurse John keeps my pumps pumping......

sleep

Now it's 8:15 and time to hook me to a port-a-pump and off we go....

dinner......

bed..

sleep

Sunday (11-21-2010)

Sweet Sunday..

Papers, puzzles, funny papers..

My dad would always say, "you're funny enough"...

yes, I am..    :-)

Last night I had a moment where my head came above the surface..

I felt good, really good...I was even able to make a dinner for David and I.

Today....not so good...I feel like flat mush..

..all the color is washed out of the world today...

I try to think happy thoughts....I really do.

David took me to the grocery store with him...couldn't do it..

Oh I tried..walked around with so many moms and their daughters...gathering cans of pumpkin and cranberry sauce....I can feel myself slipping away.....

...I miss my Grace.....

... I miss my life...

I begin to crumble and retreat to sitting in the car with the wieners....

It's the thinking thing again.....I'm lost in a sea of sadness and what if ....and why... and how did this happen...?

.........try so hard to think good things...

Tomorrow I am back to start all over again....

I know I need to be strong....not really a choice...I must be strong...


I'm scared....

Saturday (11-20-2010)

..oranges..I crave them..

.....cut and suck..cut and suck..I just want to suck the juice out of the segments...it isn't so much orange juice that I want....it's the entire process of biting into the piece and drawing the liquid from it....I am sick with desire...

I can see it in my mind..when I tell David, we head out to stock up on oranges, grapefruit, limes, and a pineapple.

Arriving home....coat is still on..I am slicing oranges in a frenzy..the juice in my mouth is exquisitely satisfying.....cut and suck...cut and suck......I'm actually enjoying consuming something...



I have 48 hours in which to find the strength to start this cycle again...will I be ready?.. can I do this?

..this is not a trick question, but it is a question that must be asked..

...and answered..

.....by me.....

My answer is YES!!!

..never quit...never give up....

..I am committed to enduring whatever it takes to overcome this disease...

...as long as I can stand up....as long as I am breathing.....I will continue to push this aberration..this distortion of life......from my body...

I will be whole again....

Friday (11-19-2010)

..this was a lost day..

..the abdominal discomfort is unapproachable with medication...

so cold that I relegated my day and night to the bedroom with space heater and electric blanket..

..we're talking 75 to 80 degrees for fragile comfort...

...hard to come out of myself today..

Monday is coming soon..

Thursday (11-18-2010)

wow! I don't want to do anything at all. If I try to put my body in motion, my stomach precedes all other movement....booosh....booooosh...bam!

...I sit quite still..

My wieners had baths this morning; soft and sweet ....the two cats are taking it all in with their saucer eyes..thinking about washing the cats, just for fun (the thinking, not the washing)..

..they would be so mad at me..

there was a time when Fall meant the sounds of people raking their yards and kids playing in the leaves... and if you can remember far enough back, the taste of burning leaves in the air as they were burned at curbside...

things change....now the sounds of Fall are dominated by the incessant whine of motorized leaf blowers...

It's really windy today....EEEEEEEEEEEEEEEEEEEEEE..the leaf blowers whine on three sides of my house with the child-men who have discovered a new noisy toy...EEEEEEEEEEEEEEEEEEEEE..they blow the leaves (where are they blowing them?)..the wind blows them all around even as they attempt to dominate nature.....

My yard has soooo many leaves now...

"love thy neighbor".....

Wednesday (11-17-2010)

....very foggy inside...

..most important thing is to be ready for next Monday's infusion..I have four more days to get strong.

I am so detached from everything; something has come undone. The environment is foreign, distant and not recognizable as the same reality that I lived in just six months ago..string theory??

There is the pain...not just nausea and discomfort....

..pain meds help......pills, pills, pills......yuchh..

There is movement inside me....we can actually see my abdomen spasming, churning and scraping...

Not so long ago, the fetus inside me  moved and kicked with all the joy that new life promises..

...this would totally be the opposite...



David took me out in the car today to get some air and get away from the house for a bit. We drove around aimlessly for almost two hours. ....through Concord and around, on a cloudy/sunny day..

When we got home, I was glad to be back....to succumb to the incessant fatigue and discomfort in my own space ....my comfort zone......

heal....... please heal...

Day 9 (Tuesday, 11-16-2010)

..incapacitated..

..one can paint with a pretty broad brush with just that one word....

.for today...paint me.......

Day 8 (Monday 11-15-2010)

...Monday is a funny day....your mind swims with the possibilities of the beginning of a new week.....
you know you're going to be so productive.....

..but the cloudy weather brings me down....

..the recovery time between infusions gets longer with each dose........

.....today..sleep, sleep, sleep.......

..make me stronger........ sleep.....


..after the first infusion, the recovery time was pretty short... kindof liking having a virus...

..each successive infusion increased the number of "down" days....and lengthened the time until the days would start getting better....

today is a leaky kind of day....my eyes, my nose.....my mouth...all leaking fluids profusely....no energy...

....maybe tomorrow will be better....

..Andres, my "Sun friend"...I think of him as my "Sun friend" because he is a scientist studying the Sun....

..his reaction to my cancer was so grounded, so genuine....and he knew that he couldn't stay long.....and he didn't stay long......thank you Andres.....

..today..hats, gloves and a petite silver angel on a chain found it's way to me ....

..thank you, sweet sister Robyn........

...gifts so soft.....my illness must pull at her heart......courage, sister........

..i am so lucky to have friends who love me and pray for me everyday...

..my son gives me great strength...calls every night to pray with me and to say: "God, lift up Gail. I love her so."...

...courage....

Fragile.....

.....we rarely are able to go out...basically, three destinations are available these days...
MGH for infusions and tests, Walgreens pharmacy for the myriad of prescriptions that my body needs to continue to function in an acceptable manner, and last....yes, Starbucks...some places are the equivalent of comfort food for the psyche.....

I think about David. He has cancer as well. He never talks about his cancer..He never seems to think about his cancer...He just wants mine to go away....

This afternoon he convinced me to come out in the car to get some air and pick up some pills...we appended a Starbucks visit....for fun..

I take a seat while david orders and acquires our special drinks..

...my mind starts to churn with my stomach...I think about how much this man loves me...How I just cannot go...

..I can't keep the tears back and as I look up I see that David has noticed I'm crying and comes to me..

.."you're thinking, aren't you?"...

..he knows and I know the odds.......DAMN!

..but I am strong.."like bull"...

I should never have gotten this..where..how...who...what???........no answers..

..I can and I will beat this...No question......"not everybody dies from this..."

David smiles at me so much......."Soon, David, this too will be just a memory and we will be happy once again...."

I love this man of mine....He tries so hard.....so hard....

...Grace...David brings her forward..She knows I can kick this...she knows my strength....that strength is something my daughter shares with me.....

..Sunday washes over us like a huge, warm blast of air....

..newspapers....fire in the fireplace....cats curled up next to a warm arm...wiener dogs sleeping and loving us with their wiener dog eyes......

...funny papers..sooo funny...

..and NO THINKING.....

promise

Day 7 (Sunday, 11-14-2010)

David's thoughts on "how chemotherapy doses are designed":

1~ Evaluate health and strength of patient.
2~ Determine how much of each drug it takes to kill patient (yes, KILL the patient).
3~ Back off the severity of the dose by 5% to 10%..
4~ Combine 4 separate drugs, each one just slightly short of fatal dose.
5~ Administer infusion to Gail.
6~ Serious disease requires serious medicine.


Gail's thoughts on chemotherapy:

1~ Thank God there is something I can take for this.
2~ A serious disease requires a serious medicine.
3~ I am stronger than these drugs....
4~ I will survive and I will do anything I have to do to succeed......



I am alive...i am awake...the sun is out..the house is warm....I am loved and I love.......

..I have one goal: I must be healthy enough to receive my next infusion in a week..

...barely enough time to get my head straight..

I knew that the side-effects of the chemo would become more severe with each infusion...the word of the day is cumulative.....the side-effects are cumulative......

my prayer...my hope is that the severity of the side-effects is an indicator of how much damage is being done to the cancer cells...KILL THE CANCER!!!!

Day 6 (Saturday, 11-13-2010)

..my eyes are not yet open but I know it's Saturday..


..Saturday...YAHOO!


..every day should be Saturday...


..cartoons..kids playing in the street...dad's home...


..it's sort-of a mini-christmas feeling.....no school..just riding my bike and eating pancakes and...yes; Saturday..


.."don't move Gail"......."stay still"....capture this moment and hold on for dear life....


..now I'm up and my tummy starts to roll....ick..yuck...


okay, maybe Saturday isn't a mini-christmas...


..it's 8Am and David is in the basement with two workmen who are putting a small sink in his new "shop"....


..the never-ending story of moving 20 years and 2000 square feet of materials, tools and machinery into a 250 square foot area....not sure how this works, but the seams on the house are bursting.....


..David has to put everything in a place and find a place to put everything..I want to help but..impossible..


..so much tummy sickness...


sleep..yes, sleep...


tomorrow will be a better day..

Day 5 (Friday, 11-12-2010)

..still here

...consciousness comes slowly...

Neulasta has it's own side-effects...yup...it does...

... just need to sleep..whether I want to or not...

I'm up and dressed...

I get an hour or two each day..immediately after I wake up in the morning..I almost feel like Gail...

I think: "I feel pretty good"......if I say it enough, will it happen?

I know my body is waging war inside.....no, I KNOW my body is waging war inside!

this is a day of: sleep, half-sleep, dozing, napping, "resting my eyes", sitting up, lying down...

on and on and on..............I ask David, "is this is how it will always be for me?"...

the fog is intensely thick......

Day 4 (Thursday, 11-11-2010)

..the fog is beginning to thicken ever more around and inside me..

so..here's my understanding of how chemo works:

The healthy cells in my body are well-rounded little guys and gals. They have the ability to divide and create new cells and (most important) they have the ability to repair damage right down to the dna level.

The cancer cells also have the ability to divide, but this attribute runs amok. The cancer cells divide so rapidly that they create masses of themselves, feeding on the bodies resources and interfering with the normal processes of maintaining life. They literally suck the life out of you.

Achilles heel:

Cancer cells suck at repairing damage.

Here comes the "kill the cancer" part..

The cocktail of drugs used in a chemo infusion is designed to disrupt and damage the dna in such a way that the affected cell is no longer capable of division (reproduction). Since cell life is finite; the cancer cells die without reproducing.

Now here's the zinger: The dna disruption is systemic in the body. Yuppor, all the cells in my body are damaged each time I have an infusion. The healthy cells gradually repair and resume normal functions as the cancer cells die off.

All this microscopic stuff translates into a body in chaos. A machine whose parts are at odds with themselves and whose most basic particles are somewhat confused about their function.

The bone marrow produces blood cells. The white blood cells in our bodies have a life span of 72 hours.
The chemo damages the white blood cells so that they are incapable of reproduction.....
Without white blood cells, my body has no way to protect against germs, bacteria, virus........

Which brings me to Thursday

today is centered around a shot of Neulasta....this is a drug that stimulates production of white blood cells..

..so now these cells are receiving two diametrically opposite instructions:

1~STOP ALL CELL DIVISION AND PRODUCTION OF NEW CELLS.

2~EMERGENCY! EMERGENCY! QUICK, DIVIDE, DIVIDE....

Meanwhile, every other cell in my body is in repair mode, even while being attacked by the drugs..

........my body is so busy on the cell-level, that it hasn't much left over for things like consciousness or energy or......

The systemic confusion is evidenced by every sense organ sending messages that my brain doesn't recognize.....food is no longer familiar in taste or texture....cold things burn...hot things are too hot...sweet things can make my mouth pucker...or not...





the Neulasta injection must be timed to be administered between 20 to 24 hours after the pump was removed...(it's all about the 72 hour thing).

Ahh.. here's David at 4:30....

"wake up love"....."I'm so sorry, but it's time for your shot".....

Day 3 (Wednesday, 11-10-2010)

I get out of bed. I momentarily forget that I'm attached...

..attached to a relentless pumping of 5FU into my blood stream..whirr, click...whirr, click..

I hide the bag under my pillow so I won't hear it at night..

..still hear it.......cat thinks it's her new "friend"..


Today is "get that out of me" day...The bag and pump have been my constant companion for the last two days...filling my body with yummy chemotherapy goodness.....yeah..

One night, I pulled on the tubing (thinking it was something else)...not a good idea..

It's a 46 hour process, so that means that I have to wait until six-thirty tonight to be rid of it..

..another day..another blur....

it's 6:30, here's David with purple (sterile) gloves, syringes and bandaids...

routine by now: remove bag..inject saline, inject heparin...pull the inch-long needle out of my chest-port..

I'M FREE!!!

Showers are once again a possibility (and a joy)..

I can't wait to have treatment 12 finished.. (I think this all the time)..

Then, the port can come out and I will be free of this cancer stuff...

and I will stay strong...


Do I ever think maybe I'll lose this fight.....do I think what if I don't get better.....do I have awful scary moments that consume the light and breath and sound and.. feel I'm somehow grown apart from the rest of society, humanity...apart from the healthy ones..


Yeah sure, everyone does.  


My husband calls me an Amazon warrior..He says he is in awe of my strength, courage and endurance..
He weeps to see me weakened by this onslaught..he says we are in this together...and so we are...


I reassure him that it will all turn out alright...


I am strong! I will stay strong!


Watch me....

Day 2 (Tuesday, 11-9-2010)

can't let my feet come in contact with the floor...

thick warmies for my feet....wool gloves for my hands and ready for adventure..

must eat breakfast.... tremors mostly hands and arms..

thoughts are thick....my voice is weak and unsteady

standing is not a viable option and sitting resolves into reclining..

let this day pass.........

nausea is my constant unwelcome companion...

more pills.....

This is my blog:

In July of this year (2010), I was diagnosed with metastatic pancreatic cancer.


I had a physical in February and the blood workup showed that I had fat in my liver. Not to worry, a fatty liver is very common. My cholesterol was high, so my doc set up an ultrasound of my liver as a precursor to beginning a regimen of statin drugs.


As the ultrasound was underway, the technician commented (to me) that I should have a follow-up with my PC Doc. Hmmmmm...


"two lesions on the liver and a dark mass on the pancreas...let's get a CT scan."


From CT scan to gastroenterologist to MRI and then two (yes two) exquisitely primitive and painful liver biopsies later; the diagnosis is presented: adenocarcinoma of the pancreas with metasteses to the liver (pancreatic cancer, stage IV).


Let's see; what do I really know about pancreatic cancer at this point? Steve Jobs lived, Patrick Swayze died....... All the stages of shock and grief hit me at once: denial, anger, deal-making...more and more denial..


This is not happening. I am a non-drinker/non-smoker. I have focussed my entire life around being capable of taking care of myself in my "golden years". I have maintained an exercise regime during my entire life...thought I was healthy..


Less than five percent of people diagnosed with this disease are alive after three years. The majority are gone within the first 9 months.


I am officially declaring my place in the survivors ring. Somebody has to be in the 5%.....trust me on this one..






Three months later:


Written on the day of my sixth treatment with folfirinox (look it up), the most agressive chemo-therapy treatment in use today. Approved only for candidates who are in top health and strength, because of it's intense side-effects.


My life (right now) is centered around Cancer. I just came home from my sixth chemo treatment.


Nowadays, my tummy is always in a state of turmoil. My belly shows visual signs of the roiling feeling that I am living with.


My eyes ache and are constantly leaking fluid. I am unable to swallow without serious difficulty. My throat feels like it cannot close, then it feels like it cannot open; all at the same instant. 


One (or more) of the chemo drugs causes neuropathy. The effect is cumulative with each treatment and manifests as piercing pain in my hands and feet if I come into contact with anything cold. If I attempt to swallow anything cooler than room temperature, it is like swallowing broken glass. This continues for days and days......


My mouth is over-manufacturing saliva... There is so much saliva that I can't keep from drooling...


My hair is a memory and my memory is flawed...


Some days I can't form words..... or stand without wavering.


Sleep is my best friend for the peace and rest and gradual restoration it provides....


Sleep is my worst enemy. It steals the time from me. Some days I sleep 22 hours.....most days I have trouble staying awake.


The fatigue is manageable only by acquiescing to it's demands...






Did I mention the tremors?


During the infusion, my entire body begins to shake uncontrollably. This continues for at least twenty-four hours and tapers off to (just?) my arms and hands. Continues for ten to fourteen days... Just in time for my next infusion....






After six more treatments, I will be done with all of this and my hair will come home. Its short now. I look cancer ravaged; 'cause I am...

Miss my hair  ... Oh well.

Part of my blog is to tell point by point what is going on inside me and outside me.

Monday (November 8, 2010), David, my loving husband and in-house nurse drove me to MGH (Massachusetts General Hospital) at 8AM to start my blood work-up and day-long Chemo. He comes armed with all the games and books and love he can put into his bag and we are off.


We arrive at the hospital around 9 and make our way to the 8th floor of the Yawkie Cancer Center.


First stop: to see my infusion nurse and take vitals. "Hook me up John", and a needle is inserted into my port (this is a surgically implanted IV point that  can be easily accessed for infusions, blood draws etc..).


John draws my blood and then downstairs to see Doctor Clark to evaluate my blood workup and make sure I am healthy enough to endure another treatment.



"Hello my friend and reader-of-the-charts, Doc Clark". He smiles at me and even smoothes out his wild eyebrows. He is happy with my progress.

..Tells me that out of fifteen patients on folfirinox, I am the only one who is still able to tolerate the full dose after five infusions. Makes me feel proud.. Makes me feel hopeful..Helps me believe.....Helps us believe..........


A few questions from my "Nurse David" about a new drug to add to my infusion;  but I don't really listen. I am so happy to be his only patient to make it to number six on full dose.

Hanging on the good news...Picks me up. ..Handshakes and smiles and back out to start the big day.  Elevator to floor 8 and check in...


We are fortunate today to have a bed for my eight-hour infusion.


Drugs, drugs, drugs, drugs and MORE DRUGS.  TV helps pass the time and the time does pass. John goes off duty, followed by a replacement nurse who has to leave to go home to take care of her babies. The floor is emptied as everyone else has gone home except for the staff administering the last stage of my infusion.

Now it's 45 min left... Dragging,  Dragging on . 30,... 20,......10 minutes left.


Finally, the last bag is empty and I am hooked up to my take-home pump. A portable infusion of 5-FU which I wear in a fanny pack connected by tubing to my port; runs on a nine volt battery.


In 46 hours, David will remove the needle from my port and disconnect this pump.






GET ME HOME NOW! is all I feel. It's 8:30 and I have had my fill.. Cold is not my friend... Hat, gloves, warm car. Home! Home!... Please, take me home...

David makes me a wonderful dinner of hot crepes and I sit to absorb the warm smell of batter toasting up to a thin crisp pancake.


Thank you David.

Getting up the stairs to bed is hard work .... Made it.
Into my jam jams and  UGG, UGG, UGGG,  YUCK!

Head is spinning, tummy is flip-flopping. Can I fall asleep? NO! NO! NO!

Conan is on,  YIPPEE....first night back.....

Sleep mercifully comes, but with it I dream a Bright Red Devil with a sharp,barbed, forked tongue is straddling my chest. His knees temporarily pin my arms as he forces his greasy, slimy, painfully-barbed tongue down my throat. I awaken in motion as I wrestle him off of me and throw him acrosss the room. Bam! Into the wall and gone. I look over and find I am alone in bed. David is downstairs. I turn on the TV and David comes back when he realizes I am awake.


The TV stays on and the sleeping is on and off until 6AM. can't sleep anymore.. 

I rise to dress. YIKES!  My hands, my feet;  full-blown neuropathy.