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Meaning of life

"The meaning of life is to find your gift. The purpose of life is to give it away." ~ Pablo Picasso

Saturday, October 24, 2009

Spotlight on Cancer - Part 1

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

25 comments:

johnhenry said...

Brian,I take your sharing as applying to live overall. Thanks, Johnhenry

Dr. Swill said...

Johnhenry,

Thank you for you comment on BTGD. You will find in Part 2 our story will come full circle and be directed to everyone, not just cancer patients.

It has been a very powerful story for me to write and I've had some great assistance from experts all over the world. I hope you find it enlightening. Please pass the story along to friends and family.


Peace B

Anonymous said...

DR. SWILL, AS I SAT HERE READING YOUR STORY I BEGAN TO CRY AND I'M CRYING RIGHT NOW. SORRY, I GUESS SOMETIMES BECAUSE I'M A SEMI SHUTIN I HAVE TO MUCH TIME TO THINK.I HURT BECAUSE YOU AND YOURS HAVE HAD TO SUFFER IN THIS WAY. ONE OF THOSE QUESTIONS THAT THERE'S NO ANSWER. I FIND MYSELF PRAYING FOR PEOPLE I SOMETIMES DON'T KNOW BECAUSE THAT'S WHAT I DO BEST. OH NOT IN FRONT OF PEOPLE I DO MY PRAYING IN PRIVATE. I ALWAYS TELL GOD THAT I DON'T REALLY KNOW THE CORRECT WAY TO PRAY BUT I JUST FIGURE HE KNOWS WHAT I'M THINKING. I HATE IT WHEN PEOPLE HAVE TO SUFFER BUT WHEN I THINK OF HOW MY JESUS SUFFERED ON THE CROSS FOR ME I GUESS MY PAIN IS NOTHING EVEN THOUGH IT HURTS LIKE H/// AT TIMES. I HOPE PEOPLE START READING YOUR BLOG. YOU REALLY ARE AN INSPIRATION TO PEOPLE WITH CANCER. SORRY ABOUT NOT MEETING. I SELDOM GO OUT TO EAT OR VISIT THAT MUCH ANYMORE.

I'LL BE WAITING FOR YOUR NEXT STORY AND WILL PASS THE WORD ABOUT YOUR BLOG TO OTHERS.

TG

Anonymous said...

FORGOT TO GIVE YOU ONE BIG HUG.

I SEND YOU AN EMPTY BOX AND WHEN THE WORLD GETS YOU DOWN JUST OPEN THE BOX AND TAKE OUT A HUG NOT ONLY FOR YOU BUT YOUR MOM.

TG

Dr. Swill said...

Thank you TG for your love and kindness. But don't dwell on our pain and suffering. Look at your life and be grateful that you are well. Enjoy life to the fullest and don't waste it. Do something wonderful and life changing with the time you have.

Peace B

whabbear said...

Thanks for taking the time to write that, Brian. You are eloquent, moving, honest, and inspiring!

Dale said...

Brian, This is a very uplifting story even for those suffering from other terminal illnesses. I'm looking forward to the rest of the story.

Sorry if a similar post by me already went through.

Dale

CClark said...

ABSOLUTELY BRILLIANT!! Are you sure we are related?? Looks like you have all the brains!! I AM SO PROUD of YOU!!! You are my favorite "writer" of all-time!!!!

PS - went back to August postings (BM) - Before Mice - and have been mesmerised ever since!! Couldn't love you any more!!

Love, me

Dr. Swill said...

Whabbear - Thank you so much, I hope I can live up to your gracious compliments when Part 2 posts!

Dale - Thank you for finding the positive in such a difficult story. It's obvious you understand my intentions.

Peace B

Daria said...

Thanks for doing this ... it needs to be done.

Teri said...

Cancer came crashing into my life in 2001 when my husband was diagnosed. He passed away in 2003 but left me with a greater appreciation of life, although I have to confess it took a while for me to see it that way. I watched his daily struggles with a sense of awe that he could face such suffering with grace and courage. Having a place like this to go to would have made life a bit easier for him. He would have known he wasn't alone in his fight. Thank you Brian.

Larry said...

WOW ! Brian really is a smart guy and an excellent writer. Thanks for sending. Do you ever talk to him or correspond with him? --- LAS

Raden Galoh said...

Dear Brian,

Thank you for dropping by and leaving your foot prints in my blog... Don't be a stranger to me, please come again ya...

This entry speaks my mind, and you write it so eloquently. Thank you for saying it out loud bro!

Take care and God Bless!

Raden Galoh said...

Ah Dr. Swill, it's you that visited me and it is Brian that writes this piece...

I got em mixed up!

Thanx Dr Swill.

Dr. Swill said...

Raden,

We are one and the same.

Dr. Swill is a name that was given to me because of my writings.

Sorry for any confusion. I have visited your site on many occasions.

Peace B

nollyposh said...

Thankyou for the invite Dr Swill... i thought that something was in the air today... Perhaps a blessing X:-)

Tracey said...

Hey thank you for inviting me over.. Dr Swill

What a fantastic blog xx

Elsa D. said...

Thank You!

Renee said...

In many ways I could have written this myself.

You know I bet Bob even looks forward to the opportunity to speak openly about his thoughts to people who really can understand.

People who want to hear it opposed to those who really don't want to hear it.

You have gone through a lot my friend.

Renee xoxo

Elayne said...

Dr. Swill~Thank you for inviting me too! I look forward to Part 2 and a community of people who understand what it is like to live with cancer.

Love what you had to say in part one and couldn't agree more about how to live your life even in the hardest of circumstances.

Elayne~ 11 year survivor, stage iv metastatic breast cancer and training for my first marathon!

Peggy said...

Dr Swill;

Thank you for visiting my blog and leaving your calling card. I am a cancer survivir times two. Starting from the ripe ole age of 6 months. Last year i was diagnosed with LLC and am in the smoldering stage. Watch and wait , I call it.
The fear gets to me sometimes,but I am counting my blessings at the same time.
Nice to meet you and hope to see more of you!

Joanie M said...

Hi Brian! Thanks for the invitation. I already "know" some of your commenters. I'll be reading your blog a bit closer later on this evening. I don't have cancer but I am a caregiver for my significant other who is recovering from Large Diffuse B-cell Lymphoma. John recently underwent a stem cell transplant. We're hopeful the cancer is gone. We'll know for sure in about a month.

God bless you as you fight the good fight!

Dr. Swill said...

Joanie,

While going through treatment at MD Anderson, I met a man on our bus that underwent the stem cell transplant. He explained how that did it and it was fascinating! He had very good results with it.
I wish John well!

Peggy,

You have been battling cancer since you were six months old??? You are a miracle lady! When I go to MD Anderson for my check ups, it breaks my heart to see all the young ones, but strangely they seem to have the best attitudes!

I'm so glad I stumbled upon your blog!

Elayne,

Thank you. Part 2 is a little more difficult to read and even more so to write. I hope it provides inspiration.

Nolly Posh,

Very kind. Thank you!

Tracey,

Thank you and you're welcome! I hope you enjoy!

THANK YOU EVERYONE!

Peace B

Rachel C Miller said...

You are an inspiration! It is not about how many days we have on earth its about what we do with the days we have here on earth. I do believe that the power of the mind can and does provide us with miracles, call it prayer or conjoined thoughts. Alone we are one together we are the strength that moves mountains, you have my prayers for your continued strength.
Sincerely
Rachel

theBluesman said...

if not for this blog i would never have heard about cancer of the tongue, well it doesn't matter, go on live yr life to the fullest my friend and may God bless you & all your effort.

Words To Live By:

"The best way to find yourself is to lose yourself in the service to others." -Mahatma Gandhi