A 2nd Opinion and Some RED Lipstick

Nothing new about this Tuesday really.
Just an average day. Not.
The 4th of July Holiday weekend used to be fun and fabulous for us.  We are usually busy and hectic on the 4th.  Barbeque's and friends. Swimming in the pool. 
Sunshine and laughter. 
 This one for us was sad and depressing. 
Here is a note I wrote to a really dear friend this morning. 

Good Morning Beautiful &*%$^^#

This weekend was awful. TRYING to get Henry to eat something has been .... Hard.

He has lost 40 pounds since this began. Bring on that feeding tube. At least with my horrible cooking, he will never have to taste it!

Feeding tube and chemo port are Thurs.  :(

Today, we meet his best friend in Indy and then go for that 2nd opinion at IU Med. 

Henry is giving up. 4 days into treatment and I'm not sure if it's the cancer or the treatment but he feels like absolute crap.

All we do is look at 4 walls. We need a jumpstart! His best friends comes today. 

Let's hope he can do the trick. 

I pray for a miracle, Henry says he prays for a massive heart attack. Not funny, huh? We have only just begun. 

God, I am so sick of my depressing self. Maybe I need to write in  my blog again. It helps me to get it out and move forward. So...

Now I am going to go get beautified and wear something FABULOUS to go see a new doctor. Why not, right?

I am gong to wear a white Herve Leger skirt,  my fav black Christian Louboutin's and a Chanel jacket and 

YES... RED lipstick! and tell CANCER to kiss my Fabulous ASS!

Mother F*cker can just go ruin someone else's life today! Ha! I feel better already.

I love you so much

Lana

To say our fabulous fun lives have changed is an understatement.  Trust me when I tell you, this could happen to anyone!  An exaggeration? Nope. 

None of us, you or me are immune to tragedy. Whether it be an illness or an accident, it can come to our houses and move right in. Stay awhile. Put it's dirty feet all over your home and your heart. Eat at your soul. Smell up the place and not leave.  Three short weeks ago we had plans and dreams and a life. Now... Not so much.

 My advice is this, plain and simple:

Don't just TELL those you love that you love them. 

SHOW them! Every day.

Tuesday 10:00 a.m. 

Oncology Clinic

5th Day of Radiation

My husband has zero energy. Listless. Given up.

Won't eat. His fun sense of humor is fading as fast as my bleach blond hair when Clairol comes to town.

I am almost excited about him getting this feeding tube! 

(This from a girl that would only get excited by a pair of Christian Louboutin's? Ha!)

The PEG Tube and Port for Chemo are scheduled for surgery on Thursday and it will be hard but good. 

The Good, The Bad, and the Ugly.

The Good... He will eat. Well,  sort of eat. 

The Bad....I will be cooking (yes ME who can't cook to save my soul)

I will be buying a blender and a food processor and pureeing all his food and sliding it into him via a tube installed in his stomach. 

The Ugly.... My cooking is ugly and grinding it up until it's unrecognizable and looks like slime to be fed into a tube directly into his stomach will be ugly. 

Can I do that? OMG. The thought scares me so bad. 

I have not been sleeping at night. I wake up 20 times a night and worry.

When I was flying, I would have this recurring dream that went like this...

We would be inflight. 35,000' cruising speed. All is well.

Suddenly, the aircraft  begins to shake and dip. Roll and sway. Passengers screaming. Complete chaos. I am standing in the aisle. At a complete loss. I FORGOT to do SOMETHING. I can never remember what it is I have forgotten but the aircraft is going down. Fast. I can hear the wind whistling and the thin cabin walls about to come inward from the pressure. Falling. Screaming. All these lives.

 It's ALL my fault! I failed to do something. What?

I wake up in tears. I am distraught and confused. Wracking my brain to remember WHAT it is I fail so badly at. 

It never comes to me. It only comes the next time I dream it. 

Last night and most nights since this nightmare began...

I wake up standing in the middle of the room. 

Scared and panting. Cold. Sweating. Last night I woke my husband up. 

I was still asleep but talking. 

I told him I had just signed his death sentence. 

"What?" He says. 

I repeat it. "I just signed your death sentence." Once again, I have forgotten to DO something! What? It's all my fault. 

I have FAILED.

I suddenly wake up to full consciousness. I am in tears. 

So afraid. Panic. I realize what idiocracy I just told my very ill husband. I am being positive? Ha!  I have always lived my life so flip. I have flittered thru life without a care in the world. Much like Scarlett O'Hara, I would say 

"Fiddle de dee. I'll think about that tomorrow." 

Well, life isn't so easy when you love someone but can't help them.  I fear I will FAIL. I fear I will Fail HIM.

I fear he will get worse and It will be ALL MY FAULT.

Ok, back to the oncology clinic. The 5th treatment goes well and once again, we are called into the doctors private office. What now? What possible news can you tell us now?

More x-rays tomorrow. They are switching gears. More radiation. Twice the power in the beams and adding one more week. We are now up to nine weeks to finish this!  

Balls to the Wall.  Kickstart this cancer. Be as aggressive as it is. Shrink the bastards!

The downside.... A greater chance at causing Multiple Sclerosis or paralysis. Lovely.  Fiddle de dee... I'll think about that tomorrow!

2:30 p.m. IU Medical Center

2nd Opinion

We arrive with our best friend the NFL Coach. 

My husband still calls him Coach. I love seeing them together. We sit in the waiting room and the Good Old Boys stories are flying. They are so cute. It's almost as if...

As if this is not really happening but we are just having a fun chat in an odd office building. 

Laughing. Swearing. Being men. I almost feel as if I have entered a secret fraternity and should leave them alone. They are like college boys in their silliness and stories of past football plays and gossip of other players. It's fun!

The doctor calls us in. She has an entire NEW direction. 

LESS Radiation Less chemo. What? 

I want the "Balls to the Wall" approach. My husband and Coach are elated. They are almost giddy with the new plan. 

I TRY to be but somehow my trust level is zero about this. 

WHY let up? Why not hit it? Shrink the bastards? What happened to THAT idea?

Coach begins a pre-game speech. He pulls his hard stiff chair as close to the doctor as he can. He gets his face as close to hers as physically possible without touching her. He raises his voice like a coach before the Super Bowl.

"I am a COACH. I want YOU to be the Head Coach. I want You to get in there and WIN! Beat this! You can DO IT! 

Be the HEAD Coach. Now, Let's get in there and make this happen!"

I am impressed. I am not an athlete but know I just witnessed the inside of a locker room. 

Instead of sweaty football pads and mouth guards there are stethoscopes and bandages. 

I literally want to stand up and scream like a cheerleader. 

Go! Team! Go!

I'm not sure why but as these two "boys" leave the room so happy and charged up,  patting each other on the back like they just scored a winning touchdown,  I feel this sense of panic. 

We have the players, the coach and the game plan. Why do I feel like we may lose the game?  Why do I fear we will fail?

Fiddle De Dee.... I'll think about that tomorrow.

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.

The Report....

Today is Tuesday.
Tuesday.
Remember that ugly, vile, horrid report? 
The Pathology Report?
Tuesday
Horrible Tuesday.


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 
Report. 
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. 
18 months.

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.