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For first time readers...my journey begins here: THE VERY FIRST BLOG POST (CC1)

Meaning of life

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

Monday, July 14, 2014

HOW MUCH CAN ONE MAN TAKE?

MISERABLE!


I am over this shit! For the past eight weeks I have been fighting what we think is an infection on my chin. It started out the size of a dime and now measures 3 inches long. More shrapnel from surgery has worked it's way out of my neck just before this began. I now have a cap fill of staples, wires, and tips from where they inserted a Doppler wire when they removed the cancerous tongue!

March 2014
June 2014

To the right of this is where infection began. Small at first, I went to the doctor. I tried a penicillin based antibiotic, Cephalexin. Ten days latter some relief, but not enough to solve the problem. So another ten days of the same drug. Twenty days later the wound had drained but was still not looking good. It was about five days later when I saw the doctor again and he put me on Dicloxacillian for another two weeks.

At the end of the two weeks the drug did absolutely nothing. In fact the infection site became bigger, harder, and SO much more painful. The pain is different than I'm used to. Yes, I said used to because I have several problems with pain in my jaw area, neck, and lower back. But even with medication this pain is different. It's like a hundred tiny needles stab me in the face and then it's gone. It's quick and comes out of nowhere. I'm assuming nerve pain? Bottom line is, my pain meds do nothing for it.

Finally I called the doctor when Dicloxacillian was finished and told him it didn't work at all. Now back to the one sulfur based drug that has worked in the past, but upsets my stomach, Extra Strength Bactrim. When I take this I just want to lay in bed and not move. The more I move the more it seems to upset my stomach. At this point my cheek is so swollen I bite it when I try to eat anything.

M-I-S-E-R-A-B-L-E !

Dinner has always taken me a long time to eat since I came off the feeding tube. Now it can take over an hour! I'm at a deficit with the new tongue fashioned from my forearm. The mobility is restricted and because it's smaller than what a normal tongue is, it's just harder to manipulate food. The swelling is making it even more difficult. I'm cutting up my food tiny pieces and only chewing half my normal amount while puffing up my mouth with air to chew so I avoid biting my cheek.

Since I began eating solid foods, I have always had to think when I eat. Where is the food at? What can I do to move it where I want it? A swig of water? A tilt of the head? Or maybe putting the fork back in my mouth the reposition the bolus of food. Sometimes I can't even hold a conversation at dinner because I'm concentrating on chewing. Over the years I've become more proficient allowing me to eat with friends without appearing like a total crazy person. The hard part is when I get something caught between my gum and cheek and it won't move. On a rare occasion I have to use my finger, which I try to avoid.

I've only been on the Bactrim for a few days now so the jury is out on whether it works or not. I see my doctor again in a few days and we'll go from there. I'm a little concerned if the Bactrim doesn't help because that could mean it's not an infection after all. I think the next step is a biopsy and/or hospitalization. I'm either becoming immune to antibiotics or my cancer is back. A few areas of my neck appear to have slightly swollen nymph node activity. When they did my neck dissection during my cancer surgery they found cancer in the lymph nodes and that's what prompted the need for radiation and chemotherapy. I would NEVER suggest radiation to the face unless it was your last option. I'm not sure I have the energy to go through all that again.

I don't want to leave the house. I look hideous. I can't do anything outdoors for fear of sweating and making the infection worse. I can't take anymore of this shit! Just shoot me! I'm FK'N MISERABLE! And maybe a little bitchy too...more than usual!

No Peace this time...B

Friday, May 23, 2014

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

Wednesday, April 2, 2014

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




Wednesday, March 19, 2014

Tuesday, December 31, 2013

HAPPY NEW YEAR!

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

Saturday, December 28, 2013

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


Wednesday, December 25, 2013

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!

Words To Live By:

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

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