Tuesday, October 18, 2011

Flying By the Seat of My Pants

I am writing this since my publisher wants MY story from the beginning.
My beginning didn't begin with YouTube or my husband getting a horrible disease called Cancer.
My story begins some 50 years earlier...
Hang on.
This may be a bumpy ride.

Chapter One

My first recollection as a kid was of being a happy one.
I remember people would always call me "Smiley." I loved everyone.
We were poor but smiles and hugs and laughter were free!
I was four years old.
Life was good. Life was fun. 
We lived near downtown small town Indiana where there were candy stores and pet shops and movie theaters on every corner of cobbled brick streets. We ran these streets and we had fun. 
We were together.
I had my big brother and big sister and my superbly beautiful Mom.
I remember that we moved. 
A lot.
One dark wintery night a very tall man came to our small cramped apartment that we had just moved to months before.
He wanted something. I assume it was rent money.
My beautiful Mom was crying. Three small kids, rent to pay and a limited grasp of the English language. 
He sat in a chair that was way too small for him. He scared me. The radiator hissing scared me but my mom was crying and HE was the reason why.
Why wouldn't he just go away?
Why does this ugly old man make my Mommy cry?
He's sitting here in our dismal living room on a too small chair looking so stern and angry in his ugly dark suit and glasses.
Go away!
I can make him stop looking at my Mom with his eyes so mean. I can!
I will.
I open the closet door and it creaks on it's rusty hinges. His cold eyes slither over to me.
I open the door wider. Staring at him. My eyes locked on his face. Daring him to keep watching. Wider. That's it. Keep your eyes right here, mister. 
I open the door even wider and at the top of my lungs I yell, competing with the screech of the rusty hinges straining to open the heavy door as I pull the knob.
"Stop barking you big watch dogs! There is a man out here that you can bite if you want. Bite him hard! Bite him before he leaves. 
He's leaving SOON!"
My eyes never leave his face. 
He is staring at me. 
My imaginary dogs must be scaring him, my 4 year old mind thinks. Ha!
His head shakes as he keeps his eyeballs on me standing in an empty closet doorway, dirty pajamas, threatening him with big, mean, imaginary dogs.
He stands up.
He looks at me as he tells my Mom... 
"You have 3 days to get the rent money or you are out on the street and your crazy kids too. Oh, and we don't allow "dogs" in here.
Money or Get Out!"
I stick my tongue out at his retreating back as he slams out the apartment door.
Ya! He's gone.
I curl up in my moms lap as she cries.
"You did good, Lana. You scared that man away" she tells me in her heavy accent as she wipes her eyes and a small smile appears on her perfectly red lipsticked mouth.
I thought she was the most beautiful person I had ever seen. She was my beautiful mom.
2 Days later we were moving again....
This time we moved to an even older, smaller, rougher house where neighbor kids ran wild and the wind was the only thing that whipped down the dark dirty streets.
We moved into the upstairs of a duplex apartment that was in such a bad state no one else would rent it. 
I would wake up many nights and hear  my Mom crying in the other room to The Platters singing "Smoke Gets in Your Eyes" playing on the scratchy record player and it was always a sign my mom would end up all night in tears.  Sobbing. I would get up from the bed I shared with my brother and sister and rubbing my eyes would curl up on her lap in hopes of helping to make the tears stop. What made these words make her cry so much? If the song is so bad, why listen to it, my 4 year old thoughts would say.

They asked me how I knew
My true love was true
Oh, I of course replied
Something here inside cannot be denied 

They said someday you'll find
All who love are blind
Oh, when your heart's on fire
You must realize
Smoke gets in your eyes

Now laughing friends deride
Tears I can not hide
Oh, so I smile and say
When a lovely flame dies
Smoke gets in your eyes
Smoke gets in your eyes 

It would be before the next move, the next apartment, the next angry landlord's visit that my mom would leave and I'd not see her for years. 
No imaginary dogs could keep her here.
No crazy little girl's desperation moves could stop the train that was about to roll over us all.....

Thursday, October 6, 2011

Take This Cancer and Shove It!

Not much happening here in this 
cancer-rabbit-hole we fell into.
I like it like that.

My husband still can't sip water... Very well anyway.
Food? Forget about it. Can you imagine not eating even ONE bite of food for FOUR whole months? I can't. 
(Food is my Friend)
He says water goes down but he's not sure if it stays there or if it's simply spit. So... I gave him a small amount of orange Gatorade to drink.
It went down and mostly 50% stayed down. Being orange-colored helped to sort out what it was he was spitting out. 
He says he still feels something back there gagging him if/when he does swallow. Hmmm. 
Is it a tumor?
Is it dead cancer?
Is it scar tissue?
Who knows, but he refuses to go see the Ear Nose and Throat doctor and I can see his point... to a point. All of my nudging and nagging get me no where.
(I've even threatened to use the Company Credit Card and go on an extravagant  Shopping Spree again... Still nope.)
He says "Why test what you won't treat."
He just simply does not  LOOK like a man with cancer any longer. 

The dull grey coloring is gone. He has those pretty flushed cheeks and ruddy complexion back that made me fall in love with him.
He is no longer losing weight. I feed him every 3 hours 6 times a day. 6 cans of Isosourse canned liquid a day via his feeding tube.
He no longer coughs up blood.
He no longer has that raspy "hot potato" voice.
He is no longer so fatigued he can't move one step in front of another.
He has even been going to the office 2-3 hours a day.
You tell me.
Does that all sound like a sick and dying man?
No symptoms~~ no cancer, right?
So, we wait. 
The PET Scan is scheduled for the end of November. That will tell the true story.
The truth, The whole truth, and nothing but the truth.
It's still too early to do the PET Scan now as the radiation is still inside his body and he would light up like a nuclear reactor.
So... As I said, we wait.
Waiting has never been my strongpoint but we are learning to cope.
Life goes on and time waits for no man... or woman.

 (Where did I put that Credit Card anyway?)

PS. I noted that Steve Jobs passed away.
RIP Steve Jobs.
He had the same rare Neuroendocrine cancer my husband has.... 
I feel a Scarlett O'Hara moment coming on again......

Thursday, September 29, 2011

Today, I Am Scarlett O'Hara Again...

Today is the day.
We have been walking around this house these last few days as nervous as two long-tailed cats in a room full of rocking chairs. 
So scared.
So worried. Praying and asking God and the doctors to give good news.
All of you (my little heartbeats) have been so wonderful and diligent.
So kind and supportive. We are no longer strangers. How can we be?
You were here with us thru this fight. 
Pushing. Reading my words.
I love you.
We both do.

We arrive at the oncologists office 5 minutes ahead of time. As I exit the car and slam the door behind me, I tell my husband...

"When we return to this car, we will be two completely different people. Our lives are about to change directions. Remember that as we climb back in to go to go on our way."
His look says it all. Kind of a "Oh Crap" look.
We enter the building arm in arm much as we did as we walked down the aisle of our cathedral after saying "I Do" at our wedding.

Both of us have been waffling at what the results of the scan will be.
One second... 
It's going to be All Clear.
The very next half second... 
It's going to be devastating news.
We check in and sit in the waiting room. 
Time clicks by. 
My heart beat quickens each time a new patient is called in. We sit and memories of radiation and chemo slip thru my mind. OUT! Those days were so grim and cold. Today is for positive not memories of painful treatments.
We are finally called.
We pass the oncologist in the hall. 
He hugs us both in a warm bear-hug.
Is that a good sign or a bad sign?
We are put into a holding room to wait some more.  We try to analyze everything. 
"Did he hug us because he knows we need to go choose funeral attire or did he hug us because he is about to give us happy news?" My husband asks me.
"Good grief, stop that. He hugged us because he ...."
My mind goes off that cliff.

The door opens and the doctors smiling face enters.
We both move the very edge of our seats.
He begins to ask random, mundane health questions.
"Get to the point. The Bottom line! Enough with the chit chat." I want to get right in his face and yell.
We've been waiting 6 days for this. 
Finally, his words.
I melt.

All looks Clear.
You are in Partial Remission.

Come back in a month for another CT Scan, a Flex Scope, and a PET Scan in 2 months and we will know more. We can then see if it has spread or if it is all dead. Most of the tumors are gone but some are there and I hope inactive."

Enough said! 
We Gone.
In my mind, we are out the door and escaping this place like a 2nd grader when she hears the bell ring for recess. RUN! School's out!
Freedom! Escape.
Back to the safety of our car and away from this place!

Not so fast, lady.
What the heck is "Partial Remission?
Isn't that somewhat like saying you are Kind of Pregnant?
Just like Scarlett O'Hara would do, I pick up my handbag and practically skip out the door.  Fiddle dee dee.
"We'll think about that tomorrow."

Monday, September 26, 2011

The Countdown

Monday Evening
Friday it began. 
The countdown to Thursday.
To me, it's criminal to make a person wait 6 days to find out the results of the CT Scan taken on Friday.
This weekend was brutal. We did everything to keep our minds off it.
Gin Rummy. 
A race to see who could complete the USA Today Crossword first.  Watched old movies curled up together on the couch. 
It didn't help at all. It's always there. 
Haunting your mind. 
Taking your breath away. One minute convinced the outcome will be perfect. Then in the next instant, dashed to depths of despair that it won't be.
Our appointment on Thursday is at 10:00 and I may not have any eyelashes left by then from stress and worry.
You see, this test will show if the cancer is gone or not. Did the treatments work? All of the pain and trauma? Will it be good news?
So, basically, we will get a 
"You will live" or a "You will not live"
Sometimes I can't even wrap my mind around that.
To look at dying so close and personal? 
Someone asked me in the comments about Henry's anti-nausea medicine. Is the dose strong enough?
It's not that sadly.
It's when he tries to swallow. Tries to brush his teeth, sip water.
He says he gags. 
The tiniest sip of water goes down then comes right back up.
(He hasn't drank water or eaten by mouth in over 3 months)
He says he feels something back there and it chokes him.
(I cringe just writing these words down)
My hope is that it's dead cancer stuck back there. Cancer that was killed by the radiation. Cancer just stuck  there doing nothing but being dead.
Please be DEAD! Please don't show up on a CT Scan as alive!

The doctor's words are our future. 
I wonder if I will whoop in glee or melt into a puddle of crying blubber on the floor of the office. 
If this is this hard for ME... Imagine how it must feel to be Henry?
I can't even.
So... We wait.
We continue to play cards, do the crossword and watch movies with Thursday, 10:00 on our minds.....

Thursday, September 22, 2011

Living In Purgatory

Thursday Sept 22
I drug my laptop out to the front porch on this beautiful autumn day to write this.
Dappled sunlight peeking thru the almost century old trees in the front yard. Light breeze.  Crisp air
You can almost smell fall's impending arrival today. Fall is my 3rd least favorite season. 
Everything is dying....

My Mother-In-Law passed away.
Our good friend with brain cancer did too.
My husband and I didn't even attend either funeral. Not that we didn't care or want to be there to show support and say good-bye  to these two wonderful souls.... 
You see, the day they died, My poor husband was battling his own illness and was crouched once again in front of the lavatory puking his guts up. His blood values so poor that hugging or shaking the hands of loved ones that did come to pay their respects would have and could have been deadly.
 I truly think his Mom wouldn't have minded a bit that we weren't there for her on that last day. Our friend wouldn't have cared either. 
Funerals and graveyards and sadness. They are my envelope these days and if I don't put that stamp on them and seal them up tight, what does it even matter? It doesn't.
September 15th came and went but the appointments to check and scan and scope didn't happen for us. My husband refused.
He hasn't given up, he simply doesn't want to know or deal.
I have been nudging him more as each day passes. 
"We really ought to make a phone call to see what is happening with you."
 Limbo is a fabulous place to be but some days it is more like Purgatory. Not knowing what next month or next week or tomorrow or even 30 minutes from now will be is no good way to live.
Last Saturday I had reached my absolute limit. 
My curling iron took the brunt of it and now looks more like the letter "C" than any kind of hair styling tool since I banged it over and over and over on my vanity table  until it was DEAD.  
Repeating over and over with each blow the word 
My heart feels dead. My mother in law is dead. 
Our lives and our future seems dead.
Do I exaggerate? Too much Drama?
Try it for a week.
Live it for a month.
Experience it with a loved one.
I feel like we are living in a pressure cooker and the lid blew straight off the top on Saturday.
I get so many notes and phone calls from amazing friends that say,
"Just hire someone. Pay a nurse to come feed him via the tube for a day or even two. Hire someone to give him his meds and clean up the puke and do what you are doing daily. Get out of that house! 
Ya, right.... How in the name of God do you PAY to have someone hold your husbands hand or rub his shoulders as he hurls up two days of meals? Will someone that doesn't truly love him bother to wipe his mouth and give him comfort when he's hurting?
 How do you PAY to have a nurse LOVE your man for you?
My answer, at least for me... You don't.

I did what any red blooded American wife would do in time of crisis and frustration.
I took the credit card and Went Shopping! 
Boy, did I shop. It felt so good. So wrong yet so right.
I returned home after a 2 hour binge at the mall.
It was my version of Shopping Fast and Shopping Furious.
 Sephora, Saks, Neiman Marcus, Macy's. 
Pure Bliss and forgetfulness and racks and shelves of normalcy. 

You know how you lay in bed in the quiet of the night right before you go to sleep but instead you and your spouse talk? 
Some of our best talks are at that time. Heart to heart in-depth talks.
Two nights ago, holding hands in the dark, we made the decision to finally call the doctors in two weeks and get the ball rolling once again. See what and where we are  in this disease. 
Is the cancer gone? 
Two weeks.

The phone rang yesterday morning.
It was the oncologist's office. 
"We have you scheduled for your scans on Friday after blood work at the lab. Be there at 12:45. Expect the scans to last 4 hours. Then, you have an appointment on Thursday the 29th with the doctor to discuss your results."
We will have the results on Thursday, next week.
I think we both want to rush back to the safe cocoon of our ignorance now that it's out of our hands.
I WILL get him to that appointment tomorrow. 
I will!
We are both so Nervous. Anxious. Fearful.
Fingers Crossed.....

Tuesday, September 13, 2011

Let's Do the Limbo Dance

Good Morning.
Sorry I haven't posted in a while. I have no excuse except my life is not my own anymore and at the end of each day, I am usually too tired or too emotionally drained to write my own name.

Besides, there's not much happening in the way of new information that would or could help anyone going thru this nightmare.
I have made a point to take at least one hour each day and either go for a walk or go to the gym to punch a punching bag or do something so simple and delightful as visit a friend. 
The 15th of September is fast approaching. The 15th is the day we are to go get the Flex-Scope to look and see what is happening in the throat that we so recently burned to a crisp to kill the cancer and anything else in it's path.
But.... Here is where it comes down to choices. Not MY choices but my husbands. It is, after all his life and illness.

He wants to do absolutely nothing. 
No tests or scopes or scans or needles or IV fluids or blood transfusions. No shots or pills or rinses. 
No more medications.
No doctors. 
No appointments.
At first, I raved at him like a lunatic. 

What do you mean do nothing? 
I am one of those people that learned a thing or two from watching Dr. Phil.
My philosophy is: 
"I'd rather be Happy than Right"
I don't need to be right. I'd rather be happy. Being right all the time isn't me. I can be wrong too. I am not a control freak in any way but I was going to fight this one to the bitter end! 
In tears and in a rage I stood my ground. 
Face red. Hair in tangles and fists clenched.
This side of hysterical. 

"Yes, you ARE going to scans and scopes and appointments. I'll drag your sorry ass all over town but we ARE and we will! Are you hearing me, Mister?"
We were NOT going to do nothing. 
Nope. No way. Not an option. 

Then out of the blue I got this note from a beautiful YouTube Subscriber:


Just wanted to let you know that you aren't alone with this cancer thing. My dad was diagnosed last year with poorly differentiated carcinoma. Pretty much the same thing your husband has, but different wording. My dad, at the age of 58 noticed a growth on his tonsils. He went to have it checked out, which is when the doctors decided to remove his tonsils and do a biopsy. The say the older you get the worse the recovery is for having your tonsils removed. Tis a true statement. The biopsy came back stating my dad had cancer. They immediately started chemo twice a week and radiation 5 days a week (as I'm sure you know EKG's and whatnot). My dads whole face and neck was blistered. He was constantly spitting of that mucus stuff you were mentioning. He couldn't eat, he couldn't drink, he could barely sleep. I've never seen my father be as thin as he was. The pain pills he was on, made him hallucinate. It was terrifying and I really thought I was going to lose my father. He pulled through it though. He last step was to go get a final test to see if the treatments worked. Being the stubborn man he was. He refused. The doctors told him if the treatments didn't work, the next step was to do a massive surgery on his neck and jaw, removing part of the jaw and going in and removing the cancer, as well as additional chemo and radiation. My dad said that wasn't an option. He said he rather not know if he still has it. He said if he has it, then he will die from it, but he rather not live the rest of his life knowing that is what will lay him to rest.

Anyway, I rambled enough, but just know you are not alone and I know what you are going through. I hope for the best for you two and I hope your husband stays strong!

I read this note 5 times. I read it to my husband. He made me read it again nodding to each word in the entire note.
We did everything we were told to do to this point. 
We failed at nothing.
No matter what the scopes and scans and tests reveal, my husband won't do the surgery (Can you blame him?) So why?
It's up to God.
So, we are sitting in Limbo Land doing the Limbo Dance and that's fine. 
In a month, I will gently nudge him to move in that direction but for now....
I would rather be happy than right.

Limbo cool limbo fine
Ev'rybody gets a chance
Clap your hands it's party time
Do the limbo dance

Let's go on a holiday
(let's go to jamaica)
Fly in to montego bay
(let's go to jamaica)
Maybe find a hideaway
(let's go to jamaica)
We can limbo on the sand
To a steel drum band

Limbo cool limbo fine
Ev'rybody gets a chance
Come on and move your body down
Do the limbo dance
Limbo cool limbo fine
Ev'rybody gets a chance
Clap your hands it's party time
Do the limbo dance

You will hear the limbo song
(when you're in jamaica)
You'll be dancin'all night long
(when you're in jamaica)
We can party on and on
(when you're in jamaica)
We can limbo on the sand
To a steel drum band

Sunday, September 4, 2011

Nothing Left Today

Today,  I am writing this because I have a break. Two minutes.
 I have had so many notes and letters and calls wondering "Why no blog post?" 
"Is everything ok?"
No. Not really. It's not.

My husband is better one day and then bottoms out the next. Two trips to the ER. IV fluids every Thursday and blood work. 
Diarrhea one day
Constipation the next.
Did I say vomiting? 
Anti-nausea meds and Murilax.
Which is it today? Vomiting.

Blood results call for blood transfusions.Hemoglobin is as low as it gets.
6-8 hours in the Emergency Room.
New blood. Thank You to whoever donated this blood. Who are you?

My Mother in law is dying.
My heart is breaking.
Will I ever stop crying?

I can't go next door to see her. I have nothing left. Zero.
I feel so guilty. My mother in law is like the mom I never had to me and I can't see her like this. I can't spare one second of heartache to give her? 
I feel so numb and empty today. Hopeless.

My son just called. His girlfriend left him. He told me he wants to starve himself to death.
I just hung up on him.  My heart is wrung out to the last drop.
Tomorrow will be better, right?

Thursday, August 25, 2011

What a Day

Thursday 5:00 a.m.
I am writing this in complete darkness on my iPad on 3G.
How did we ever get by in life without 3G?

Now that treatments are over and we are "Out to Pasture" I finally made an appointment to get my hair done. Nasty looking roots and scruffy hair. Who am I these days?
I needed a three hour window between feeding tubes, bandage dressings, pills and just being "nurse" and was really looking forward to today. 

To go to a salon and forget for three hours and be pampered. *sigh

My three hour hair appointment was going to be like Heaven. Escape.
3 hours in a beauty salon... New sights and smells and people becoming beautiful. Beautiful hasn't been in my vocabulary at all lately. I feel a mess. No feeding tubes or bandages or nausea here...
As soon as my sister Karen applies the color to my hair and the foil wraps I take two minutes to call home.
The phone rings. I almost hang up worried that I will have woken him and sleep is so precious right now. It comes and goes for him in 3-5 minute intervals. The mucus is like the Spawn of Satan waiting there to choke or drown.
One more ring and I'm going to hang up and fly out the door foils and all and go check on him. I can peek in the window and just see and know he's alright.

He answers in a sad little croak. "Hello?"
"How are you? Are you ok?" I ask with a load of apprehension sitting on me like a brick bat.
"I'm fine. He answers back but I can tell, Something isn't fine.
"What is it? I can tell by your voice something's up, now spill it. Spill it now!" 

I tell him with so much authority. 
When did I become so authoritative?
He knows I mean business so he tells me. 

"I found a lesion on my tongue. It's small but it hurts."
My heart just sinks and I swear I feel every foil on my head go limp.
A sore on his tongue could mean this stuff is spreading. Already? Treatment just ended on Monday. Does this and can this metastasize so quickly? Not going there. I am being and living and EATING positivity these days. Eating it for breakfast lunch and dinner.
"I'm on my way out the door" I screech into the phone. My voice so high pitched I don't even recognize that it's me once again in panic mode.
"I'm fine Lana.  Just relax and then check it when you get back. I shouldn't have told you" he says so weakly into the phone, his voice so tired.

My day at the salon just turned not so fun and I asked Karen to step it up. It's finished and looks fine. 
It's hair.
I race home. There is a storm brewing. 

Big dark evil looking clouds fill the afternoon sky as I pull into the garage.
I run in the house throwing my handbag and heels to the side like they are enemies and get to work.
I check out this lesion. It's there but not as horrible as I had imagined on the drive home.
I will call the doctor tomorrow or as soon as this storm rages itself out. The wind is picking up and lightning strikes are everywhere outside. The world seems to be groaning in response to my fear of lesions and bad hair.
I set out to feed Henry his meal via his feeding tube. Sometimes I feel like I have a 3 month baby to care for, but as moms we don't mind feedings etc. It's what we do.
Te phone rings as soon as I flush the tube with water and shut it. It's my son telling me to watch the weather reports. It's getting worse outside by the minute.
Sheets of sideways rain, hail and wind.
I run to gather candles and flashlights as the dark sky menaces and the wind howls.
I hear a limb crack off the 75 year old trees in the front yard.
The power flickers then goes off with a crack of nearby lightning then goes off. 

Total darkness.

My husband is pacing in circles and I can see in the dim light of the flashlight that he is looking  the color of a rotten green egg and says he feels nauseous.
My cell phone rings.
It's my mother in law's nurse. Her oxygen is run by electric and the power has been cut off by the storm. Can I come next door and help her? The reserve portable tanks are there and full of precious air but she can't get them running. 

Are you serious right now?

I can hear the  hail as it bounces off the skylights. :Ping

Lightning strikes are coming faster by the second. The storm intensifies and so does my husbands nausea.
My husband is on his knees puking into the guest powder room toilet. The storm is raging.
Who and what do I do first?
This rescue of my mother in law's oxygen supply has been practiced and rehearsed many times by her in the last 6 months. She lives in constant fear of the power going out and her oxygen being cut off. 

She will panic and I know it. She's 95 and very ill herself. 
She's 95.
At 95 years old you get one thing in your mind and that's all that's there. Her oxygen situation. She dwells upon it. 


I asked her once, "Sally, if there's a full on tornado going on and your power goes out, what do you want me to do?" 
I truly dreaded her answer. She's 95 you know.
"Why Lana,  you come over and get my portable oxygen going for me!"
Simple as that, huh?
Just open the door and do I run over on foot or drive my car? Which is safer in a tornado?

 I check on my husband in the weak light of the flashlight. I give him cold washcloths for his mouth and get him settled back into his chair. He's ok just wracked by the heaves to his sore damaged throat and the newly filled feeding tube. Hurling with all that is so painful and traumatic.

I grab my big umbrella.
The storm has not let up one bit.

I brace myself, count to three and run the 200 yards to my Mother In Law's house.  My new hair-do or the fear of lightning hitting the umbrella? I throw the umbrella aside and make a dash. Run!
Her oxygen is off, the house is pitch black and the girl we hired to care for her is scared to death. Of the storm or the lack of Sally's oxygen I don't know which.
 Her hands are shaking. I can't see her face in the pitch darkness but I can sense her fear. 
I get her oxygen running and do most of it by memory in the dark as the storm rages on outside. Done. 

Now back home I race across the yard that separates our two houses to check on Henry.
He looks so wan and weak. Pale and puny.
Tomorrow we go for blood work and IV fluids to hopefully give him some pep in his step.
Still no electricity. 

10:45 a.m. Thursday
We arrive at the chemo infusion clinic with no showers and half brushed teeth. Mussed up hair and yesterday's clothes on.  All this from a girl that would apply blush just to go out to get the mail.
We sit in a private infusion room. No more 3G today as I write this down in my blog.  The Chemo clinic has power!
My blog has become my lifeline to the outside of this cancerous world we have found ourselves dumped in to.
Storms are over. 

Monday, August 22, 2011

Graduation Day

7:00 a.m.

Today is the day!
All weekend we have both been repeating "One More Day" with giant smiles. (Well, my face was a smile, my husbands more of a fake sad grin, to keep me happy)
One more treatment today and then this torture ends.
No more Mask.
No more radiation.
No more chemo.
One more day. Today. It ends....

My husband hasn't been sleeping in bed. 
He has to sleep sitting straight up these last few days since the mucus is so thick in his throat. He has no saliva anymore so this thick stringy stuff just collects like rope in the back of his throat and it chokes him. 
Every 3 minutes he must spit it out and when I say it's like rope, that's no exaggeration. It's thick, stringy and will choke a horse.

If he slips and lays too far down, I can hear him choke and each breath is like dragging a car down the drive with no tires. I wake up with a start when I hear him gasping and think 
"Breathe, breathe, exhale....wait.......
Inhale...Wait.... exhale..... Inhale.... Wait...Breathe, dammit breathe!"
I can hear that stuff caught there and air has no chance to penetrate it.  
Gross? Youbetcha. I can stand vomit or blood... Mucus and spit? Thick and slimy? 
Not so much.

I wake up and stagger to the living room in the still dark pre-dawn of morning and find a very pale, weak, sad looking husband sitting upright in his favorite lounger. Wide awake.
I remind him... "One More Treatment" with a shaky grin.

He shakes his head. His voice is completely gone now.
He looks like something the dog drug in from the back yard. 
How can he possible put on that dreaded mask, be clamped to the table flat on his back and lie there without moving for 40 minutes thru one last radiation treatment and not choke to death.
Does ONE more treatment matter in the grand scheme of things? 
Probably not but I gently remind him that we can and will get thru this last one. One more.
10:00 a.m.

We leave and arrive at the clinic.
I am so fearful they will tack on some surprise additional treatments but they don't.  
Our parole begins today.
They call his name. I sit and wait. The time seems to be dragging. What is going on in there? Is he choking to death on that crap?
I hear a siren wailing in the background. Is that coming here or to the hospital  right next door? 

I feel as tho I took one giant breath as I entered this building and am afraid to take another.  Time is crawling. I know they give him a safety buzzer if he is in trouble but geez, this is a man that never ever complains.
Tick tock... One minute is an eternity.
Finally, I see him turn the corner and his sad little face tells me he is done. 
It's over.
No more treatments.
My eyes well up with tears at the thought. I told him I would drag him thru this. Neither of us is pretty but we did it!

Now what happens?
The other patients all call it "Getting put out to pasture"
They send you home and you wait. Wait to get poked and prodded and then scanned for a recurrence. 
The chemo stays in your body several days but radiation takes about a month so to scan now would all show up as red hot inflammation from the burning and searing of the radiation. 

As I am writing this, our phone rings several times. It seems the word is already out. Our initial doctor's office calls to  schedule an appointment for a flex-scope in 4 weeks.  The radiation clinic calls for a follow up in two weeks just so see how he is progressing. The chemo clinic calls to schedule an appointment for an infusion of  IV fluids on Thursday.
We may be in the pasture now but it's not going to be all rosy.
The feeding tube must remain in place. 
If anyone reading this is or will be going thru this or helping a loved one, I plead with you... Implore you and encourage you to get the G-Tube and get it in place before treatment begins. To do it after, you will not have the energy to do so. 
It has saved my husbands life. 
He has lost 40 pounds but would have probably lost double that without it.
Also, it helps to get pills and water in via the tube. My husband stopped drinking or even sipping water a week ago. I am told he will have to go thru therapy to re-learn how to eat and drink. His muscles have probably locked up. (I know that feeling. My heart locked up about 2 months ago)
So, for now we are out to pasture and I am glad to be there. We have a month of innocent oblivion. We don't know a thing and for now, I'm happy about that. 
Recurrence is now our enemy.
We hear so many people that have treatment then say after the first scan, "I beat it. I'm cancer Free!"

Not so fast... 
Since entering this nightmare and learning more than I ever wanted to know about cancer, I have discovered that you are only as good as your last scan. 
We won this battle. We made it thru the treatment. 
Now we must win the war.
Recurrence, keep your smelly ass outta here!