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?