A Hero's Message on Memorial Day

In honor of Memorial Day and Skin Cancer Awareness Month a message from a brave hero, Bob Pemberton: A strong Veteran and Cancer Warrior whose last selfless act was to leave this message for others to learn and grow...Mr. Pemberton...I salute you!

Dead Man Talking

By Brian N. Walin

After living with my cancer for many years now, I have met several cancer patients along the way. Most have some other type of cancer. Only a few have the same, rare tongue cancer that I do.

What makes this story so difficult to write is the fact that most tongue cancer patients I have met along my journey are no longer with us. Squamous carcinoma of the oral cavity is responsible. This is an extremely aggressive cancer that leaves the recipient with a 50/50 chance to live five years, after being diagnosed. If it has infiltrated the lymphatic system, it can further worsen those odds by an additional 25%.

In 2007, after being diagnosed myself, I began to aggressively fight back. I underwent several operations to remove the Stage IV venomous growth along my left lateral tongue and the floor of my mouth. Cancerous lymph nodes were excavated from my neck. An uncomfortable tracheotomy allowed me to breath. The corners of my mouth were filleted open to allow access to the project within.

Body parts were rearranged: a skin graph from my thigh covered the hole that was left after removing a skin flap from my forearm that was then used to fashion a new tongue. Dangerous radiation and cancer killing chemotherapy followed…more invasive surgery to my oral cavity and a two and a half year engagement with a life sustaining feeding tube protruding from my belly.

After months of speech therapy, mouth and tongue exercises, food modification, depression, and mounds of mind-numbing medication, I’m exhausted. I’m still alive, winning my battle, and eating some solid foods, but always concerned cancer will strike again and I will repeat this dance anew.

The clock is ticking. Half of my time here is gone, according to statistics, yet I am still cancer-free. In my mind I fear the evil will return. I think that is a fear all healthy survivors have. You live day to day with that cancer cloud looming overhead. I’m free, but am I really?

Every time I lose a fellow tongue cancer patient, it’s a staggering blow that brings me front and center to the harsh realities of this dreaded disease. I personally don’t have an issue with dying. I’ve faced that road before. It’s the suffering, pain, and overall loss of the quality of life that goes along with continual treatment that is an issue for me. Horrifically, “life altering” does not begin to describe the reality of the situation.

Many friends and family members of cancer patients ask themselves, “What do I say at a time like this? How do I react? What can I do?” or even, “Why?” as they watch their loved ones suffer a slow, agonizing defeat.

First, let me go on record to say there is no answer to, “Why?” It is what it is! It isn’t anybody’s fault. It’s not a punishment, nor is it anything you have total control over. For those of you with controlling personalities such as myself, let this one go!

Having been close to death a few times now, I feel I can give advice as to how you should treat a cancer patient. Just treat us as you always have. No matter how bad we look or how weak we are, we want life to be as normal as possible. Save the tears, we don’t need them. Jokes are a good thing, laughter is best. Reminisce about the good times, and hugs are always welcome, if not longed for.

We are no different with or without cancer, even if we have no hair! Be honest with us and yourself. We know our odds aren’t good. Don’t make things worse by throwing a pity party. Now is not the time to hide from the truth. While life hangs in the balance, emotions are raw. Don’t say or do things YOU might regret later AND say all the things you wish to say, before we are gone. We need to hear them now.

We need a caregiver and patient advocate who is strong and caring and understanding of OUR wishes and not those you think we want. If others object to the plan in motion, remind yourself, these are our wishes, not theirs. This could be our finale, our last goodnight, and therefore needs to be our choice how things should be managed.

Personally, I don’t like to be fussed over. I prefer to do as much as possible for myself, even if it appears I’m struggling. I will let you know when I need help. I need that independence to get my strength back. If I let you do too much, it’s like saying, “I give up!” which is never a good thing. I think it’s essential for a cancer patient to remain emotionally strong and independent to survive, if not be down right stubborn.

I’m compelled to write this, because once again a fellow tongue cancer patient’s life hangs in the balance. The harsh realities are rearing their ugly heads. Bob Pemberton, is a friend and fellow tongue cancer patient. I met Bob after I completed my last surgery, while still sporting my feeding tube. We had a long “talk” about life with tongue cancer and the necessity of a feeding tube.

Bob, is someone I look up to after being through so much more than I have at this point. When I now look at Bob, I see what my future might be. He’s like the senior classmen and I the novice freshman student.

I generally maintain this blog to surround readers with my life and my cancer issues…Me, Me, Me! But, today I am inclined to open up the door and let Bob in. Not just Bob, but other readers and fellow cancer patients. I thought I would set the stage and have an open, raw, discussion with a man who is facing a death sentence. Something has compelled me to do this. I can’t tell you why, but I think either selfishly I need it, or I feel that others need to hear it. Especially those who are healthy and think they have something to worry about. Perhaps we’ll even touch on the meaning of life.

For me this is a personal project. I wanted to enroll the help of several people who are also surrounded by cancer in some way, to interview Bob. My goal is to obtain an open and honest dialog about doctors, treatments, and what it is like when you’re not sure if there is a tomorrow. For those of you who get upset because you get caught in a traffic jam, or have lost your home or job in this bad economy…look out, this might just change how you view the rest of your life!

If you had the opportunity to ask a dying man life altering questions, would you, could you? In Part 2 of this blog post you will find six seasoned cancer veterans who volunteered to step up and ask Bob some riveting and emotional questions. Bob has agreed that EVERYTHING is on the table for discussion. This has not been easy for any of us involved. So, stay tuned for the most enlightening story I’ve ever written.

©2009 Brian N. Walin (All rights reserved)

LINKS: PART 2 - PART 3

I've Met My Match

Well, where do I begin? Nothing earth-shattering, just trying to get back into the swing of things. I've said it before and I will say it again...I KNOW I'M ONE OF THE LUCKY ONES!

I'm now into my 7 year Cancerversary and life should have returned to "normal" a long time ago. As a cancer patient you fight hard to survive as you watch some on your fellow warriors lose their battle and you begin to wonder if you are next. I started this blog as a means to communicate to friends and family what was going on in my life so I wouldn't have to repeat myself every time the phone rang.

Over time it morphed into a way to vent about my struggles and then a way to help others through theirs. As time progressed some of those I met at hospitals, doctor's offices, and this blog became friends. We shared our highs and lows through emails and other social media, but then things started to change. One by one I lost some of those people I began to feel so close to. We shared things with each other that only a fellow cancer patient would understand and we helped each other through of the rough times. Some of the emails I sent would not be returned and later I found they had lost their fight. Soon I would morn people I only knew for one reason, cancer. Some I had only known online.

I guess I should have realized this would happen, but I never realized the magnitude and the number that would die. Some of these people I knew for years. Last December I had the hardest blow of all. Jeanne Sather helped me edit this blog at times. Because of her blog, The Assertive Cancer Patient, which I referred to as 'Bitch Don't Mess With Me!" she helped me through more than just cancer.

One story she helped me with and I am most proud of was "DEAD MAN TALKING."  A story of a fellow tongue cancer patient who was losing his battle and finally passed before we put the finishing touches on the story. Bob Pemberton was the first cancer friend that really hit me hard because we had the very same oral cancer. When I heard the news of Jeanne's passing I just went into a fog. She fought so hard to stay alive. There was nothing more she could have done to survive that she hadn't already tried. This woman was a force to be reckoned with.

She was a professional writer, editor, teacher, National Merit Scholar, jewelry designer, and lived with cancer for 13 years. She studied in Kobe, Japan, achieved a Master's Degree and Japanese Language and a second Master's Degree in Journalism. Jeanne was a translator, worked for a Japanese Broadcasting company and also worked for Newsweek among other news organizations. All this while adopting and raising two boys.

I guess this remains the hardest part about this blog and the people I meet because of cancer. There are times I get so tired of explaining how I can talk, how hard it was living on a feeding tube for so long, and how much my life has changed. I tried to wipe away the bad memories and pretend all is well and the worst is behind me. Looking in a mirror doesn't help. My battle scars are plentiful and bring me back to the day I lost my tongue every time I gaze into one. I avoid mirrors as much as possible and don't even allow pictures to be taken anymore.

Jeanne once asked me to send her a current picture and as tough as it was I sent here one. She was being kind I know, but she sent a simple note back..."Very handsome man." Friends have said I've had the scars and bandages for so long they don't even notice them because they know me from within. A very kind way to see others and so appreciated.

On occasion a stranger wanders by and has to ask the inevitable question often at a time I'm feeling very normal and cancer is not even on my mind. Then with one sentence I'm back on the operating table. Last week I was out in the front yard trying to tend to the flower beds when two young brothers four and five years old walked past eating candy. They stopped and very politely asked.."What happened?"

Doppler wires that came out of my neck 3/14

A few days before this I had another battle with those damn Doppler wires coming out of my neck. Last year at this same time I had the same problem. This year four more tiny wires worked their way out of my neck infecting it and causing great discomfort. Once again I am bandaged up for the quadbillionth time. I've been one big bandage for longer than I can recall!

I had surgery SEVEN years ago and my body is still SLOWLY rejecting the shrapnel I was told was made of surgical grade material and I would not have a problem with. THEY WERE WRONG!!!

Total Doppler wires that have come out between  2007-2013

ANYWAY...As the two young boys approached and asked politely the very question I am so tired of answering, I went right to my canned smartass answer. I sharply replied, "What happened? You mean to my face and neck? I got hit by a bus!" The young boy thought for a moment and then replied in a very serious tone, "Oh, well then...you should have driving the bus!" He put his liquorice stick to his mouth, pulled with a snap, and happily continued his walk down the street.

BAM! I've just been one-upped by a four year old! Yes, sometimes you just have to find the humor in all of it. Even if it takes a little man to remind you! Cancer can be funny.


Peace B

JUST CHILL OUT!

Daddy is preparing a new post to update you all!

Love Dicky

World Cancer Day

REMEMBER THE FALLEN

HAPPY NEW YEAR!

Expect Nothing. 
Embrace Everything. 
Love Everyone. 
Find Peace.
B

Heifer International

I BOUGHT A COW!!!

"Why buy the cow when you can get the milk for free?"

There are several animals and other needs you can buy to help this charity. You can even buy a partial share in an animal. When you donate your hard earned money to a charity are you sure what your money is used for or how much of it goes to "executive expenses" that never reach the needy?

As you scramble for that last minute tax deduction, think about buying an animal for Heifer International. The business model is a sustainable method of using funds and not just throwing cash at the problem feeding only a select few. Your dollars buy something with a perpetual result, not just feeding people one time. It provides things they need to grow their own foods, teaching them that with their own hard work and your gift they can be independent.

Your gift does not just benefit one person. Families who receive your gift become donors as they pass the gift on to other families in their community. This allows them to help countless others as you have helped them.

If you can donate even a small amount, please help.

May you all have a blessed New Year!

Peace B 

HEIFER INTERNATIONAL LIFESAVING GIFT CATALOG

UNTO US A CHILD IS BORN...

MERRY CHRISTMAS TO ALL, AND TO ALL A GOODNIGHT!

My First Christmas Card
Mommy & Me

On a cold snowy winter's night in Detroit, Michigan, a child was born. My mother was dressed as Santa because of her big baby belly. She Ho-Ho-Ho'd one too many times delivering gifts and her water broke. Mommy then delivered her most precious Christmas gift ever, Me!

I wrote this for my mom as a gentle reminder of that exhausting Christmas day:

Hello Christmas!
by Brian N. Walin

It’s all warm and cozy, my cheeks nice and rosy. I cuddle and coo, like most babies do. I want to stay in here, with my mother so near. It’s just a small bedroom, though could use more headroom.

I hear noise surrounded, I’m kind of astounded. The music I hear is about a reindeer. I hear my Dad bellow, and Mom shakes like Jell-O. They’re having so much fun, but it’s my time to be Son.

I squirm and I kick and I even pick. And all I can hear are words of St. Nick. On Dasher, on Prancer, I’m sure you all know. But my Mom is showing, it’s my time to go. The party must stop now, it’s my time to drop now. I haven’t a care, I soon will be there.

So off we go rushing it’s my party now. I can only imagine, Mom feels like a cow. She turns and she twists, she’s barring down hard. I can only hope now, I won’t pop in the yard. We get to the Doctor he’s waiting inside, I’m kind of excited about this whole ride.

It’s my time to jump out, but I still have some doubt. I think I will stay in here, if just for one more year. It’s really not that bad, but I can hear my Dad. “Let’s go you small squirt. I want to see my lad!”

So out I go bouncing it’s so good to see, that I have become part of this family. It’s so great to see you, you’re all here for me. Then out of my eyes I spy a small tree. All of the sudden, a nip and a tuck, this just can’t be happening, it must be bad luck. A slap on the ass follows this all, and then I feel pain and I start to ball.

Why did you do that? I’ve done nothing wrong. I’ve really been so good, all evening long. There’s no need to hit me, I’m sure you will see. I’ll try to be real good, for this family. Don’t hit me now, I just want to stay. I promise I’ll brighten all of your day. Just give me a chance and teach me real well. I promise I’ll try not to put you through hell.

This day has been trying and awfully hard, but I thank God now, I’m not in the yard. I really can’t tell what had gone wrong, but I’ll always remember the deer from that song. It seems to be clear about those reindeer. That’s how it all started with me being here.

A swoop and coddle with cloths that do swaddle. I’m warm and I’m cozy my cheeks again rosy. I just need some sleep, I won’t make a peep, just let me drift off and start counting my sheep. This room is much bigger, it just seems so right. But I need my sleep now, I bid you good night.

December 25, 1960

©2005 Brian N. Walin (All rights reserved)

First day on the job and already napping. I just popped out and boy am I exhausted!

The Christmas Tree

Wish We Could Be Together At Christmas

I know some of you might have read this story before, but every year as the tree goes up I stop in peace to pay tribute to my wonder father. I think this Christmas story bears repeating. Happy Holidays! Peace B 

I grew up in Michigan. My aunt had a very realistic imitation Christmas tree manufactured by Mountain King, which I loved. I searched high and wide to find this tree, to place in the lobby of my new restaurant. When I was unable to locate one, I mentioned to my father during one of our nightly phone calls, “When I return home for the holidays this year, I’m buying a Mountain King to bring back to California.”

I searched for that Mountain King tree in California with no avail. It seemed the majority of Californians purchased real trees. I never agreed with the idea of cutting down a tree just for a few weeks of self gratification. I admit, they are beautiful and fill a home with a heavenly aroma, but I can’t kill a tree for that reason. Just the thought of the shear national number of trees cut only for this reason each year, makes me ill.

I was only in business for 6 months as the holidays approached. I wanted so badly to return home, to Detroit, to see my father for Christmas. I was born on this day and this has always been my favorite time of the year.

It wasn’t going to be easy, but I thought I could slip away between December 24 and 26. I was expecting business to be slow those days, but knew New Years was going to rock, so I had to return before. The crew was still green and I was still learning how to run a business. I don’t know what I was thinking, but I was going home! I missed my dad.

Nightly, I spoke with my father on the phone to discuss the day’s events. I’d bitch or brag and he’d listen and offer advice when he could. My father was a good man with the best work ethic of anyone I’ve ever known. He was a good listener and always offered sound advice.

Al Starkey and his wife Marge were new Little Caesar franchisees and had come to my restaurant to learn, while they waited for their first location to open in Monterey, California. Al and Marge were much older. Well... all the other franchisees were much older. I was the youngest franchisee at the time. Al wanted more experience running a Carry-Out unit and I needed the help, so it was a win, win.

I remember that day so clearly. It was a busy dinner rush and I was working the register. In the beginning, I had a hard time letting anyone touch the money. We had 4 phone lines that were constantly ablaze during the dinner hour. As I opened the cash drawer to make change, I heard an employee say, “Brian, it’s for you.”

“Is it an emergency?” a question I would ask anytime a personal phone call came in during a busy hour. I always heard a no, but this time the employee said, “Yes, it is!”

I was handed the phone and had a bad feeling in my gut. It was my Aunt Carol. This is a woman who NEVER calls. All she said was, “Brian, are you sitting down?”

Instantly I knew there was something wrong with my father, but before I had a chance to calculate it, she tearfully said, “Your father is dead.” At that point everything stood still. All I remember is sinking to the floor behind the front counter with the cash drawer left wide open and unattended as Al swooped down like an enormous eagle and scooped me up in his arms as I screamed, “NO!” with tears streaming down my face.

I wasn’t supposed to fly back for a few days and I wasn’t near prepared to leave at this moment. How will the restaurant run while I’m gone? I will need to be away now for more than a few days and I only have one assistant manager in my employ. I had no manager since that was my role. Who will make the deposits, get bank change, place the food order, pay the bills? Who’s going to sign the payroll checks? I will be thousands of miles away and for how long? What am I going to do?

It was all a blur, but in less than 12 hours I was on my way to the airport and a Corporate Little Caesar Supervisor was being flown up from Los Angeles to run my restaurant until I returned. There wasn’t anybody else closer to help. My restaurant was the first in the Bay Area.

When I arrived at the San Francisco airport, there were people everywhere, sleeping on luggage. The airport looked like a homeless shelter. Dozens of flights were canceled due to inclement weather. I waited in such a long line staring blankly at everyone and everything, not knowing how I even got to the airport.

Al had called our corporate headquarters and made arrangements for the supervisor and then managed to get me packed and rushed to the airport. I was on autopilot without a clue what was happening.

As I approached the United Airlines ticket counter, I handed the lady my ticket. It was for a flight on the 24th of December and today was the 22nd. I vaguely recall the conversation, but it didn’t go well. She assumed I was just trying to get on an early flight, because of the holidays. All flights out of SFO to Detroit were booked for days because of the weather.

I explained my father had died and I had to return home today. She accused me of lying, sighting that I already had a ticket and that she was sure I was just trying to leave earlier. She asked for proof of his death and requested a copy of his death certificate. With that I exploded. All my emotions came spewing out. “I don’t have one! He just died!” I snapped. With authority she responded, “I need to see some type of proof.”

I became enraged, belligerent in fact. “My father is dead dammit! I’m not lying to you! What the hell is wrong with you? Why would I make something like that up?” I was so loud and she was so offended and scared from my anger she called security.

I was escorted, screaming, into a private room, calling everybody, "Crazy!” It was I that was falling off the deep end. The security officer calmed me down and asked if there was a way to call the funeral home for more information. Once they confirmed my father was indeed deceased, EVERYBODY’S demeanor changed. My coach ticket was exchanged for a first class seat and I was on the next plane to Detroit. They couldn't do enough to make up for their mistake.

Seated next to me was a young boy, perhaps five years old, traveling alone with a large bag of toys. The flight attendant was well aware of my dilemma and apologized for the seating arrangement, but that was all that was available. It didn’t matter, just keep feeding me drinks (Black Russians) for the next 5 hours and I’ll be fine. I just want to go home!

I drifted off to sleep and the young boy escaped from his seat. That was just fine with me, until a very angry man stood before me, screaming at me, “Keep your brat and his toys out of the isles! His sh*t is everywhere!"

Apparently the lone child took out all of his toys from the paper bag his mommy packed and had strewn them all over the coach cabin without a care. As the angry man verbally assaulted me, I stood up to explain he's not my kid and fired back at my assailant, telling him to go f*ck himself. I think it took the entire flight crew to restrain the two of us. If this would have happened today, with all the flight regulations they have, we both would have been jailed.

They escorted the man back to his coach seat, picked up all the toys throughout the cabin and instructed the boy not to leave his seat again. I requested yet another drink, as the little tyke said to me, “You don’t like me, do you?”

“Right now? NO, I don’t!” I scowled, and the little boy pouted as tears welled in his eyes. “Look,” I said to him, “Let's make a deal. I’ll make you a tent to play in if you just be good, deal?”

That made him happy and I pulled out his tray table and shrouded it with an over-sized blanket. He disappeared into the darkness of the blanket and quietly played with a toy. It was peace on Earth…well peace at 35,000 feet anyway!

When I arrived, I was pleasantly plumbed from all the free liquor. My Aunt Carol was waiting at the baggage claim to pick me up. I insisted on immediately going to the house where I grew up. My aunt didn’t think it was a good idea. “Your father died in that house.” She expressed with concern. My two aunts and a neighbor were the ones that found my father dead in his arm chair.

“I don’t care. I didn’t see it and it doesn’t bother me. I want to go home!” I insisted. When we arrived, I let myself in and closed the door leaving my aunt outside, so I could be alone with my thoughts. I don't even recall saying good-bye.

As I entered my home I was in awe. Before me, lit up so beautifully in the living room, was the most precious gift I have ever been given. There stood the most spectacular Mountain King Christmas tree I have ever seen. It was decorated in all blue and green. My father, being the perfectionist that he was, had purchased strings of blue and strings of green lights. But, to make it perfect, he managed to exchange every other bulb, so they were arranged: blue, green, blue, green, blue, green. He knew only I could appreciate such an effort. Can you imagine the time that took?

The Most Beautiful Christmas Tree EVER!

There were blue satin bells and blue satin balls hanging, yards of blue and green tinseled garland, blue tinsel icicles, all topped with a huge blue velvet bow. To perfectly finish it off, wrapped around the base was a tree skirt that was made for my first Christmas birthday by a loving aunt. It was spectacular! Through my tears I spied a Christmas card propped at the base of the tree. I felt my father in the room with me as I slowly reached down to read the card:

“Wish We Could Be Together At Christmas. You were the best Christmas present I ever had.   Love Dad”

As I read, endless tears streamed down my cheeks. I fell to my knees and whimpered uncontrollably, gasping for breath. How did he know we would never see each other again? "Wish We Could Be Together At Christmas???" He knew I had a ticket to come home. I reread the card over and over “Wish We Could Be Together” It still read the same. How did he know?

The Most Beautiful Christmas Card EVER!

I cried myself to sleep that night and quenched the moon with my tears, curled up like a baby beneath the shimmering blue and green until daybreak fell upon the room, the wetness in my eyes still present from my crescendo of tears.

After the funeral there was so much to arrange and many bills to pay. When my father’s credit card bill arrived, the story of the tree gained clarity. My father bought the tree and decorations the very day he died.

My father died after he finished putting up and decorating that wondrous tree. Judging by his time of death, 11:05 PM, December 20, he purchased the tree that afternoon, spent hours putting it up and decorating, and began his nightly ritual; getting ready for bed, showering, putting on his PJ’s, then sitting down to watch the 11 o'clock news in his favorite tangerine colored Naugahyde armchair, seated within his bedroom. He passed away in that chair of a heart attack. I was told it was so massive, he probably never knew what hit him.

Two years passed and I could not bare to reconstruct the tree. It never made it into my restaurant still dormant after being placed back into its original box. I kept it for myself thinking someday I might put it up in my home, but it hurt too much to even look at the box. Eventually I gave in and thought, “He wanted me to have this tree to enjoy. He died giving me this tree to enjoy. Dammit, start enjoying it!" So, every year you will find dad’s tree lovingly displayed at Christmas, decorated as he left it for me to find, with the tree skirt and his card beneath.

To Dad,

Wish we could be together at Christmas. You were the best father a son could ever have.

Love Brian