Today is Tuesday.
Remember that ugly, vile, horrid report?
The Pathology Report?
11:00 a.m. My husband had his very first Radiation treatment today. Time is NO longer our friend. No time to go to MD Anderson, Huston, TX although we going to IU Medical on Tuesday next week for a 2nd opinion.
The drug of choice today for the anxiety was Valium. Much better. He did it. He wore that mask and the treatment was over 20 minutes. I was so proud of him! He came out of the room grinning even tho he had black marks all over his neck resembling a road map route of the back streets of Istanbul.
Every week day for the next 8 weeks we are to be there to blast and sear his throat but if it works, it'll be worth it, right? Radiation shrinks the tumors. Chemo kills them.
Chemo begins after the PET tube and Port Tubes are surgically installed.
They give him a special toothbrush and toothpaste. Nothing even close to him can have any form of alcohol in it. Also, a special cup and a recipe of baking soda and salt to be gargled every time he thinks of it to cut down the thick mucous that is about to become the inside of his mouth.
3:00 p.m. An appointment with the surgeon that did the biopsy and he has that dreaded
I am ready for him and his nasty pages of paper. I have a copy of that disgusting report in my fat little fingers that he doesn't know I have.
I have done what so many of you had told me so kindly NOT to do. I spent 6 hours on Sunday into the wee hours of the morning taking that report apart sentence by sentence. Piece by piece. Word by word.
Mitosis. Apoptosis. Tumor. Emboli. Immunohistochmical. Necrosois. Cell Stains. NeuroEndocrine.
I researched the report like a drug addict searching for a corner to sell crack.
I felt I knew what it was and what it said but, guess what?
I am no medical professional. I know how to extinguish a fire in a cabin. I know how to
inflate a life raft. I know about lipsticks and nail polishes and bleach blond hair.
Medicine, I am clueless about and probably know only enough to be scary.
When the doctor told us he was going to explain the "report" I sat up a little further forward in my chair. My palms sweaty and my heart beginning to quicken....
Words. Medical words. The worst medical words.
Fear. Gripping fear.
Large Cell Undifferentiated Neuroendocrine Carcinoma is one of the rarest forms of cancer. It has little to no information and success rates are completely unknown.
It is cancer of the Endocrine Glands and cancer of the Nervous System.
I have never seen my husband show fear EVER. I have seen him cry at a sad movie especially ones involving animals. "Milo and Otis" made him weep. "Old Yeller"? Forget about it!
I have seen him sad but never scared. Sadness is not fear.
From the corner of my eye I see that his hands are trembling. Tears in my eyes. I could feel the tears. Huge big stupid tears splashing onto my notes and my copy of the report.
The doctor is talking and the room spinning.
18 months. 18 months. 18 months?
For the seventh time the words "18 months" keep repeating from his mouth as if on a loop.
18 months. He won't say the words but gosh, we're not idiots.
He says to remain positive. To enjoy the time left on Earth. To look at the blue sky and the green grass.
18 months. Be happy he loves his wife. 18 months. Reflect how he ran a company that was in the family for over a hundred years and made it a success.
Enjoy the small things and love the big things.
My husband looks at me. Our eyes lock. We stand. My legs feel like lead in my pink Louboutin's. My knees buckle and I have to be helped back up to standing. I want to yell and hold my arms out and run down the halls knocking down everything in my path. Run thru the halls of the medical building and crash over carts, careen into patients and be a weapon of mass of destruction.
We head for the door. All I want to do is go home.
As we are walking out the exam room door the surgeon stops and tells us "Oh, we may have to do that tracheotomy if this treatment doesn't work so your airway isn't blocked and you can breathe. There are also alternatives. Cut off the tongue. Remove the voice box, thyroid and all of the salivary glands. A complete throat redisection. This is if the Chemo and Radiation don't work. It may buy a bit of time."
We are in complete shock. I see my husband almost quake at the thought. I feel that if I open my mouth a scream of sheer horror may be heard for miles. My teeth are biting into my lips to remind me to hold myself together.
Cut off his TONGUE??
Dissect his entire throat? To live for only 18 months?
All I am and all I want is to escape this nightmare and go back to our beautiful lives.
18 months? It's a death sentence.
We are going to fight this like I have never fought before. I am going to eat positive for breakfast lunch and dinner. I am going to spit it out and live it and give it back to my husband every day. 18 months is not acceptable.
Day 2 of treatment is tomorrow and my big girl panties are getting tighter by the second.
We HAVE to fight!
18 months will come and go and God willing my husband will be with me December 25, 2012.
P. S. Your notes and letters keep us both going. We have spent so many hours in waiting rooms sitting in stiff chairs and hunched on exam tables.
I love to read each and every one of them to my husband. It makes me so proud to show him how wonderful this world is and that the people in it are angels. At least the ones that have touched our lives are. You.