Showing posts with label Large Cell Neuroendocrine carcinoma. Show all posts
Showing posts with label Large Cell Neuroendocrine carcinoma. Show all posts

Monday, September 3, 2012

One Last Kiss

The day of the funeral...

To feel so numb but to have so much to do is such a contradiction in terms. All I want to do is go to bed and stay there with the blankets pulled over my head.
Let someone else do this. I can't.

Phone calls from people, food and flowers arriving at the door. God, I hate the smell of roses now. So cloyingly sweet. The smell seems to penetrate the house but mostly my brain.

A friend of mine that I had met at the Radiation clinic... (That seems like it was a 100 years ago)
Her husband had died of the same horrible cancer my husband had, told me that she had put her dog up in the bed with her husband to let him know that he was gone.
Ewwww, so morbid!
After my husband had gone, I did just that.
Both dogs were thrilled to be up on the bed I had denied them access to these last weeks. The little Chihuahua, much older and wiser, sniffed him all over. Looked up at me with such sadness in her soft brown eyes then laid her little apple head on his arm with a small sigh. She bared her teeth at anyone that tried to move her from his side.
Izzy, usually so rambunctious and out of control, sniffed his face once, jumped off the bed like she had been shot from a cannon and hid under the bed in the next room.
They both knew.
I'm glad now I did this. They are both grieving but seem to know why their beloved master is not here. He's not coming home....

Shower, makeup, hair. Like an auto-mon get ready for this day.
Meet the rest of the family, cousins, relatives, life-long friends at the funeral home.
Pall Bearers
Saying good-bye. More tears. More sorrow. More prayers. More sadness.
One last goodbye. More tears fall onto his face. "My Darling, please know that I will always love you. Forever. Unending."

I see the six best friends of my husband, the pall bearers, bring the casket and loads of flowers out to the waiting hearse. Such a sunny pretty day but a black hole in all of our hearts. I feel as if my knees will buckle and I will become one with the parking lot.
I am just led around like a four year old. Totally clueless. I have never done this before.
Not this.

Our limo follows the long black hearse. Others follows us. A long steady stream of cars
winding thru the streets to the church Henry and I attended every Sunday that we could while we were home and together. I see people and recognize their faces but my heart can't acknowledge their presence or why they are there to tell this wonderful man good-bye.
So many people crying.
So much sadness.

People speak at the podium and the priest says the Mass. My husband is lying there beside me in a white draped coffin with a cross of gold embroidered on the delicate cloth.
The priest begins The Lord's Prayer.

Every Sunday, all of our married life and before, as "The Lord's Prayer" was being said, we would recite those familiar words, my husband would reach out and grab my hand as we spoke the words....Hands locked in a grasp, all of the week's issues and problems would seem to melt away....

Thy Kingdom Come, Thy will be Done

No one to hold my hand now as that beautiful prayer was said, I reached out and laid my hand on the coffin. Never to hold his hand again, sobbing, as the prayer and the people prayed.
I could hear people crying behind me. He was so loved.

Back to the limo again.
Winding thru the streets. We don't go straight to the cemetery. Police escorts leading us past his business. All of his workers out lining the street in a silent salute and good-bye to this amazing man. Gone too Soon. Too Young... Too Good.
Following the hearse to the cemetery. A tent has been set up with chairs under the old oak trees in the spot we had chosen over a year before.
The sun dapples through the trees and glistens on the mirror covered casket. His name and birthdate and the date he left us engraved so beautifully on the top of the glass.
The priest ends the prayers and before they lower my beautiful husband into the ground, I bend to kiss the top. I leave an eternal lipstick print on the glass as I tell him one last good-bye...








Tuesday, July 31, 2012

How to be a Widow


*sigh*

Who would ever want to purposely write about this crap?
Certainly not me.
I am no expert.
I know how to be a wife.
I know how to be a mom.
I know how to be a woman.
I know how to be a friend.
I know how to be a CASA
I know how to be a Flight Attendant.

I am clueless how to be a widow.

When Henry was first diagnosed, I searched the internet like a freak looking for miracles. Plenty of stories of men with this horrible disease but never an ending. Never a wonderful outcome. Henry's cancer was a rare one. I just wanted an ending. Anything that would be good.
Posts were out there written by wives or loved ones going thru this same thing but the postings would just suddenly stop....

Nothing

My heart somehow seemed to guess the outcome but my brain refused to accept defeat.

The day after Henry died, a friend of the family stopped by with trays and platters of food. Friends had all pitched in to provide food for the people that would be stopping by.

Thick slices of slow cooked tenderloin. Thin slices of fresh salmon with lemon and capers.
Desserts. Meat and cold cut trays. Buns, breads
Fruits, vegetable trays, cheeses, crackers and endless lists of food to feed the masses of people that were to stop by in the days to come.

While everyone else feasted on these foods,
my friend discreetly pulled me aside and gave me some advice.....

"Lana, people are going to be watching you. Judging you. No matter what you say or do, it will be scrutinized and picked apart. What you wear and how your makeup looks each day for the next who knows how long will all be judged. Not because of any other reason than that you are now a widow and people will talk. Be careful."

What?
Holy Crap!
That all sounded horrific.

It also sounded sadly true.

Other friends offered advice of their own. These are actual texts from friends offering their best advice. I think I used each one. Those days were all a giant blur.

Wear low heeled shoes. Don't eat a heavy meal before the showing.
Don't eat fiber or you will have to use the bathroom too often. Don't drink water or you will be running to pee every 5 minutes. Bring mints. Chew gum. Bring lipstick.
Sit whenever possible.
Ask how did you know my husband to people you do not recognize.
Hug those you love. Shake the hands of those who you don't know. Excuse yourself and go to the ladies room any time you need to. Bring Wet-Wipes for your hands. Keep your chin up. Wear waterproof mascara. (L'Oreal Voluminous is amazing! I cried the equivalent of a river but my mascara stood up)

The day of the showing came. I had two black dresses I thought would be appropriate. One a Michael Kors for the showing and the other Alice & Olivia with long black gloves for the burial and funeral mass.
No low cut cleavage showing. No mini lengths. Nothing tight or too sexy. Nothing revealing. No flashy jewelry. No heavy cakey makeup.
I wore my hair straight and not too fancy. Just subtle and sad.
That was me.
Subtle and sad.

I arrived at the funeral parlor with it's old elaborate furnishings, velvet walls and spindely chairs 3 hours before the doors would open. I asked the funeral director to please lock the doors until the family was ready to receive. Ugh. Receive?
My son and daughter-in-law on each side of me, bracing me up. Giving me strength to see him again for the long day and evening to come.
I slowly approached the coffin where my husband was lying in state.
I couldn't wait to see him. He died on a Thursday and it was now Tuesday. I hadn't seen his face since he had died. I made the funeral home wait five hours to take his body from my house.
I didn't want to ever let him go....

I missed him so much. I was excited but scared shitless too.
One on each arm I was shaking. It seemed like a mile to walk the few steps to see him.

He seemed so at peace and looked so handsome. I had brought his wedding ring. His hands had become so swollen those last weeks that he had to remove it. I found it in his bureau in an envelope with the date he had removed it along with these words..... 5/27/2012 "From My Girl. * * * * * "
Those numbers. Those words.
Those words had reduced me to tears and sent me straight to bed for an entire day.
I slipped the ring back where I had placed it so many years ago at our wedding. It looked so right on his finger again. A band of gold with 5 diamonds.



Each diamond a word.
* * * * *
I Love You Very Much.
I* Love* You * Very *Much*
We signed every note we ever left each other with 5 dots.
* * * * *
I Love You Very Much

I bent to kiss his face and whisper how much I love him.
My tears fell like tiny drops of dew onto his face.
Dried up tears.
So many.
I knew he would carry them to eternity and it gave me some dreary kind of comfort. A part of me would forever be with him and since my heart was already there, it seemed right.

I was asked where I wanted to stand.
Near my husband so I could look at his beautiful face and gather strength to get thru this
The family was in place. The doors unlocked.
The people came in droves.
So many people.
So many beautiful stories of the kindness and good deeds or humorous things my husband did to touch so many lives. Each one a treasure. I keep them all in my heart and remember them even now.
The hardest ones to bear were from the young men that worked for him. Some were still working there but many had grown and gone on to bigger and better jobs. Each one came to me with tears and a hug to tell me what my husband did to change their lives for the better. Or a funny story to tell.
To see these grown men crying and missing him so much was very heart-warming yet difficult at the same time.
Hour upon hour the people came.
I knew my husband was wonderful but had no idea so many others did as well.
For nine straight hours they came and line went on and on....



My family and dear friends didn't leave me alone. I finally caught on.
I asked, "Are you all afraid I am a danger to myself or others. Is that why you stay?"
No, they replied, we are just concerned for you to be alone.

Henry had become so much of my life in the last year since his diagnosis that my life was his. I gave up being a CASA, working, YouTube, blogging, shopping, lunches with girlfriends, friends etc. that now that he was gone, I was at a complete loss. No more feeding thru that damn feeding tube every 2 hours. No more helping him shower, no more bandages. No more being caretaker. I would have done it all again for a thousand years if he could have just stayed....

The funeral and burial was to be tomorrow. More of the same.
Sadness and tears.

Tuesday, July 5, 2011

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.







Monday, June 27, 2011

Decisions.....

Today ended up being the worst day of all.
Are you all sick of me yet?  
I sure am. 
I can't even look at myself anymore. A good friend that has been thru something similar told me to get up every day and put on lipstick. Do my hair. 
I really don't care anymore.



Weekends are ok but week days are the worst. 
Doctor appointments. Tests. Scan. Needles. Yada Yada
The mask we went to have fitted on Friday is done! 
Whoop-de-Freakin-Ding Dong.
My husband has played football and basketball with pain so great it would bring a lesser man down. Not him. They'd throw some novocaine into a pulled hamstring or torn ligament in  his knee and back into the game he'd go. Three broken noses his Senior Year in college ball. No big deal.

Claustrophobia is another matter all together. That mask freaks him out! The mask is fitted very tightly to your face then clamped down to the table while your arms are in chains to pull your shoulders away from your neck. Seriously, it looks like a Medieval Torture Chamber.


Today: 8:45 a.m. Home.
I give my husband who has never taken a drug in his life 2 mg of Xanax to relieve his anxiety of the mask. 


9:15 a.m. The 4th CaT Scan is scheduled with the dreaded mask to calibrate exactly where the radiation beams will go on the neck. Thy say they will salvage what they can. One salivary gland and maybe a slim chance to salvage the taste buds and voice box and his bottom teeth. His throat will be blasted by radioactive beams 5 days a week for 15 minutes a day for 8 weeks.



9:30 a.m.  An IV put into place. Time to put on the mask and get the CT Scan. He panics and refuses.
My heart drops. No mask= No treatment. He will have to wear this mask everyday of the week. 5 days a week for 8 weeks. The Xanax is useless. I coax and plead and cry and beg and  bargain with him. He has dug in his heels and says No! OMG. 


12:00 p.m. I am exhausted. Myself and three nurses have worn ourselves out but we finally,  2.5 hours later convince him to get the scan with the mask. Thank You Jesus! (How kind and amazing there are to take so much time and energy to CARE)
Claustrophobia sounds lame but it can be so debilitating. 


3:00 p.m.  First consult with the Chemotherapy Oncologist. 


The Pathologist Report. 
This damn report has dogged me all weekend and I almost want to burn it right there in the padded ugly purple chair and run like the wind while the ugly chair and the report ignite and are never seen again by mankind or the decorator that chose that ugly ass purple chair.


Chemo will begin after the G-Tube and Chest Port for Chemo are surgically installed. One will Feed and the other will fill my husband's veins with deadly chemicals to kill cells in it's path.
The report again. God, I don't even want to write to you what that ugly thing says.
The secretary of our family doctor was right. 
(From this date forward, her name will not ever be mentioned in my house or while I breathe air. She seemed to enjoy telling me that news.) I want to poke her eyes out with a spoon.



The Report........................................


My wonderful kind and gentle husband has not ONE but TWO kinds of cancer.  
Yes, ladies and gentlemen, he pulled the very short straw. 
We went to tell his 95 year old Mom the bad bad news on Sunday. She at first thought he meant that SHE has cancer (Remember, she does. She has a mass on her lungs but we never told her. Her affairs are in order. At 95 what does it matter really?) It seems that every male in his family has died of cancer. HOW did we not know this before????
He has Stage 4 Squamous Cell Carcinoma of the Throat AND a very rare form of very aggressive Large Cell Neuroendrocrine Cancer. Survival rate is slim. 
Now we know and now we fight but for what? 
75% chance it will return after treatment. 
My fight is dimming. His fight is all but gone. I don't even pretend not to cry anymore. I am so raw and scared and quite frankly I worry that he will suffer and then after 4 months of radiation and the chemo he will be seared and burned and poisoned and THEN he will die. I feel hollow. He talks about when he's dead and gone now.  Instructing me on what to do when he is...



I once knew a woman in real life that hated my YouTube Channel so much. She told me I had weird and bizarre people that watched my videos and that it was all very revolting to her. She would post about me on gossip sites and called my own brother to get him to make me stop posting videos. She thought all of my viewers were freaks. 
Not So. Not even close. I feel sorry for her closed up mind.


I have found that since being on YouTube, some of the most genuine, thoughtful, caring and most of all loving and giving men and women in the world has ever known! 


Today, I have cried tears all day long. 
Tonight I cry while typing this to all of YOU. You are so strong and steady and I have been sucking the very souls from all of you and your amazing strength and love you have shown to my husband and to me... perfect strangers. I have never been as blessed as I am right now, in a time of sorrow and fear as I am by each and every one of you.
Let me copy a Tweet for you...


savingsmallbiz 
@LanaIndianax Here's today's 


hug {{HUG}} The first beautiful flower you see on 


your path today is from me ;)




That is just ONE example out of the thousands I have received since this began less than 3 weeks ago.  Every day I get notes and comments and letters and messages and warm hugs and LOVE from you.  You are all angels here on Earth and I love you more than you know.  Thank You.


P. S. I saw her flower today as we walked out of the Oncology building.  It had the most beautiful bee buzzing around it. Loving it.
I stood there on the green grass of the perfectly manicured lawn and hugged my husband and cried.  See, I never ever took much time in a day to stop and LOOK and see the pretty flowers and what God has given me.  Given Us. Maybe God needs a warm and gentle, sweet and caring man in Heaven.
Maybe he will let me keep him.
I need him and I need all of you too. xo