Graduation Day

Monday
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.


No? 
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. 
Recurrence.
We won this battle. We made it thru the treatment. 
Now we must win the war.
Recurrence, keep your smelly ass outta here!

Feeding Tubes are like Dial Up Internet.

The Dreaded Tube~

Ugh. I could write a book about that freaking ugly tube. 

It's nasty. How would you like to see food disappearing down a tiny tube into a hole punched into your stomach and the damned thing just dangles there like an appendage some alien life-form stuck to you but can not be removed. I know it is life-saving but I hate and more importantly, my husband despises it!

A LinCare representative came to our house in a van marked "MEDICAL SUPPLY" and backed into our drive-way.  The young girl came in and gave me a lesson on how to feed my husband. Ha! I couldn't cook him a meal, how in the world am I going to feed him thru a tube?

It was a lot of information to absorb but you know what?

I did it!

One can yesterday at 375 calories, two cans today and 3 tomorrow until he is up to 2750 calories a day. 
7 Cans a day.

His taster has gone now. Everything tastes like plastic. His mouth has sores from the radiation. His salivary glands have completely left town.  

Dry mouth. No taste, no appetite, no fun.

The PEG Tube will be a life saver down the road. It's ugly but necessary. 

I think the hardest part of this for my husband is this:

This cancer has taken over his life. Completely.

This is a man that is President and CEO of a large successful company who has always had and been in control of everything in his life.

Now... Now he is or feels he has control of absolutely NOTHING.

He can no longer use his favorite deodorant. No mouthwash. His usual Crest Cinnamon toothpaste has been replaced by some nasty BioTene  for dry mouth. 

Say Bye-Bye to the Sonic-Care toothbrush. No more shaving. No aftershave. He is not allowed to drive and for him to have some woman... especially ME who is the world's worst driver on the planet drive him around is killing him. Now, he can no longer even eat a "Manly Meal" he has to be fed thru a hole in his stomach. It takes a toll on a man's pride.  I know it's hard for him but better to suffer a bit of pride and still be here. Can I get an Amen!

I want to share with you a note to a dear friend.

All of you have been MY support and I LOVE each and every single one of you more than you will ever know.

Dearest Donna~

I'm sorry we got cut off on Thursday. The surgeon came out and it all went well but, ugh. It's just so sad. My big, strong, healthy husband with holes and tubes and blood and being so thin.

Why did I think I could shove a full course meal down that tube? I had dreams of making lasagna, soup, even chicken and shoving that stuff down a tube. Ha! It would be like going back to Dial-up Internet. Shoving a Grilled Cheese Sandwich thru a straw for a 100 miles. 

LinCare (A Medical supply company) came yesterday and brought 2 cases of the "food" (2 cases 24 cans of canned liquid life), latex gloves, syringes, paper tape, etc. and showed me how to use it. I shudder to think about it.  It looks like crap and smells even worse. UPS will deliver these supplies to us twice a month. I used to wait for UPS to bring me Christian Louboutin's ordered from Barney's New York, wonderful makeup and skin care from Lancome or FUN packages from from far off places...

How does a girl trade parties, French restaurants, trips, flights,  shopping and luncheons, Chanel and FABULOUS for feeding tubes, syringes and bandages and blood and illness and mucus and food in a can?

I think God thought we were cruising, which we were, and put a giant speed bump in our path. NONE of those things are important, are they?

I mainly wanted to write to you and thank you for so much. For being here for me. For understanding. For being strong. For being YOU.

I finally got to the post office to check my mail there and found your beautiful gifts. I am excited to use that mask! It looks so relaxing. I am seriously thinking of having a wonderful glass of Australian wine and wearing that mask for the evening. Escaping.

Also, I have the NYX Jumbo in Milk on my eyes right now. It made me feel normal to wear it from YOU. The pink Yum lipstick is SO ME!!!

I love it! I love you.

I love everything and appreciated it more than you know. ooohhing and ahhhing over makeup gave me a sense of being ME again and I truly love you for giving me THAT! Let's see... Make up or bloody bandages. Yup. I'll take the makeup even if it's only a 5 minute reprieve.

When this is all over.... One of us is going to fly to meet for lunch. Right now, I fear even leaving the house for 30 minutes. I don't even know what it is I fear but I have this imaginary tether tied on me to him.  Think I can save a life? No. But as I told him....

I am going  to DRAG him thru this. It will NOT be pretty. In fact, it will most likely be very UGLY but drag him thru it I WILL! 

We will come out of this on the other side. Neither of us will be pretty but like a soldier dragging the warring wounded to safety, that is what I will do. We may become bloody and bruised but we WILL get thru!

I woke up this morning and came to the realization that we are turning into a very old old couple. 

George Clooney once said that "There is one year in a person's life that they age 10 years".... This, for us, is that year.

Love You Always

Lana

Tests

10:00 a.m. 2nd Radiation treatment.
All went pretty well. 
Going into the Oncology clinic is an experience in itself. Sad to say, I never knew these places even existed... Before now.
Everyone should go to one. It's a kind of sacred place in an odd kind of way.


It is kind of like a Methadone Clinic I once had to go to pick up papers of a drug addicted mom.
Everyone arrives at their own designated time. We all seem like addicts that arrive and wait to get the drugs they pass out but instead of drugs, it's radiation beams. Most everyone has black marks penned in on their bodies where the Radiation will blast them. It's like they wear a badge of where the cancer is located on their ravaged bodies.  My husband's lines his entire neck and down his chest.
There are loads of chairs and tables, coffee and a large table where the patients with no family to sit and hold their hand seems to congregate. On the table is a beautiful puzzle being put together by the hands of cancer patients. Some are at the end of their treatments and some, like us are just beginning. 
You can tell the newbies because we have that "I'm so lost. I'm so scared" look in our eyes. The veterans seem so used to it, almost hardened to it. 

Today, I was sitting in my chair and this tall slim gorgeous woman walked in and checked in at the front desk. She had very short almost white hair. I noticed her because she had on a pretty white ruffled top and cute jeans. When she turned around, we smiled at each other.
She was stunning. So elegant even with her practically bald head and perfect makeup. 
I have never known a stranger so I commented to her how beautiful she looked and her makeup was so pretty. She told me that her makeup routine is her saving grace. She told me it is her sanity at the beginning of her day. I asked her how far she was into her treatment. She said she has been doing this since November non-stop! Wow.
She had gone into remission for one week and it has flared back up but this was her Journey. She told me she knew her journey would soon be over and she was ready. She was tired.
 I remembered my first blog post was named A Journey of Fear. 
She must have seen the fear and anguish that is like an envelope that surrounds me.. She sat by me and held my hand and whispered to me that it was all God's way. I sat in the middle of a very crowded waiting room while a perfect stranger held me in her arms and comforted ME. This beautiful woman had probably been thru more hell that I can even imagine. She hugged me and held me in her arms for a very long time. She seemed to never want to let go.
My journey with my husband is just beginning and I have the horrible feeling that her journey is about to end too soon.  I cried and cried and this seriously ill woman held me so close. 



Today, my husband refused to eat. He has lost so much weight. I see his once so perfect athletic butt fading before my eyes. His arms are looking so thin. I try and BEG him to eat but he says just the thought of food makes him nauseous.  
I made a pact with myself to NEVER eat in front of him. Ever. How could I? This is a man that loved his steaks and pizzas and junk food. Today, I grabbed a bologna sandwich and hid behind the freezer in the storage room and ate it standing up, hurrying in case he came to find me. It just seems so wrong to enjoy food in front of him when he can't any longer. His feeding tube surgery is scheduled for the 7th of July.  He will get fed but will never taste it.


We have a brain MRI tomorrow after the 3rd radiation treatment. For some heinous reason, this rare cancer loves to find a home in the brain. 
I pray his head is sharp and clear.  He is fading on me and my heart is aching. He says he's tired already and this fight hasn't really even begun!
His best friend and former NFL coach  is flying in next week to stay a few days. I am crossing my fingers those two "good ole boys" can talk about football, quarterbacks and game days and he'll be a motivator for him. We need a miracle right now.


PS. Floridapossum/ Pamela has started a candle site for my husband and I am amazed once again by all of you. I showed this to my husband tonight and he broke down in tears. 

floridapossum said...

Hey Sweetie did you see all the beautiful candles we've lit for y'all? http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=LI

People are still lighting them. 

All of the candles lit for him all from perfect strangers from across the globe is simply astonishing to us both! 
Your words are like magic and we treasure each letter, message, comment and tweet. 
I only wish I had the energy and time to personally answer each one.  You are all pushing us both forward and I feel you there. You bring us comfort.
I love you all and love your messages of Hope and Love.

Scans and Needles and Probes... Oh My!

Remember what seems like months ago but was only days ago I was BEGGING for answers? 
Ha! Now I don't want any more answers. I want to rewind to two weeks ago when we were just a normal happy American couple living the normal happy American Dream.
Working, laughing, enjoying life as everyone else does. 
R-E-W-I-N-D

If only it could be that easy.
I look at my husband and I have to rush to a room where I can close the door or hide behind a bed or wall to cry. I must stay strong. If he sees me break I swear he may crumble and we have the fight of our lives ahead of us.
We drove for miles to get a biopsy consult. This was supposed to be No Big Deal. The Ear Nose and Throat specialist was to tell us what kind of biopsy and how the procedure would go. Instead, he read the previous CT Scans and decided to do a light probe right there in the office. He stuck a very long piece of cotton gauze soaked in a numbing agent up his nose, left it there 10 minutes, came back and then shoved a light down his throat and looked around. 
As of now the official name is Squamous Cell Carcinoma of the Tonsils and Throat. 
The EXACT same cancer that Michael Douglas had. 

But....
He has ordered more tests. A PET Scan, EKG ( to see if he's strong enough for what's ahead) and more Blood work on Monday. 
A PET Scan is a full body scan to check to see if this monster has spread to other organs. 
Dear God, please let it not have spread.
The lymph glands are 3 times the size of what they should be and his windpipe is being strangled by these cancerous tumors. There are 6 lymph glands in your neck. 5 of his are huge and growing.
 Time is not our friend anymore.
We used to make lists of things we had to do:

*Fly to Miami
*Gas up the cars
*Pack for a trip
*Buy new shoes and a dress for a gala event
*Go to a Wedding today


Yesterday, we made an entire new kind of list that made me want to hide in a closet and never come out:








*Buy a cemetery plot
*Pre-pay for our funerals
*Get our banking affairs in order
*Tell his 95 year old mom that her only son has Stage 4 cancer
*Meet with all the kids and break the news
*Tell as many of our friends that we can
*Call our dear friend and cancel our plans to attend his daughter's wedding. (I bought the most fabulous Zac Posen dress to wear but now Who really cares?)
*Find a doctor in Huston TX at MD Anderson that specializes in this type of cancer
*Decide if before treatment begins to get a feeding tube placed because his throat will be burnt to shreds by the radiation. Drinking water will be like entering the gates of hell for 6 to 8 weeks of radiation and chemo.


I apologize for being so depressing. You all know me. I am always one to make droll boring things into funny fabulous things. I can't seem to find one thing fun or fabulous anymore. At least not right now....