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6 years ago  ::  Feb 22, 2009 - 1:07AM #1
spguyot
Posts: 4
Hi. I'm Shawn, 49, male, a musician, practically life-long smoker (still weaning off, aiming at total cessation), a recovering alcoholic, who was recently diagnosed with stage IV oral cancer. The good news is my PET scan just showed the cancer hasn't spread beyond the lower left side of my mouth, gums, outer cheek, and jawbone, and two lymph nodes in my neck just below. Hence, I'm set for sugery in a couple of weeks, followed by six weeks of in-hospital recovery; and if that goes OK, six to eight weeks of Monday-Friday radiation, then chemo. The bad news is, of course, the 15-percent, five-year survival rate for this cancer.

I'm basically terrified. I have a lot of support from family, friends, and band fans -- a few of whom are cancer survivors, including a former band mate. But I need support from people who have actually fought, or or fighting, the disease. A renewed spiritual life, which helped me away from booze, led me to discover BeliefNet a few years ago, and this seems an appropriate place to air my fears and hear some words of wisdom.
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6 years ago  ::  Feb 22, 2009 - 11:56AM #2
PaulW
Posts: 40
Well I wouldn't call it wisdom coming out of me, just lots of common sense at times. I wouldn't beleave any numbers that get thrown at you, plain and simple they don't know. My Dad had prostrait cancer. They told him he was a dead man, basically that was over 15 years ago. He is still in good health. I have a friend who had your type of cancer also. He is in good health with no cancer, they got it all, he chewed coenhagen for over 20 years. The one real key I see to help in the fight of cancer is to not let it get you down. Positive mental attitude goes a long way if you know what I mean. Peace
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6 years ago  ::  Feb 22, 2009 - 12:10PM #3
spguyot
Posts: 4
Keeping the positive mental attitude seems to be the crux of it, PaulW, and something that I'm struggling with. When I think consciously of gratitude for the many blessings I have received, and am still receiving -- loving family and friends, access to an  apparently first-class hospital and physicians, and the love of the god of my understanding, I can keep it together.

But sometimes I lose those threads, and my mind just starts spinning out of control, and I find myself awash in fear, anxiety, and gloom. I also get angry at myself for continuing to smoke a good 15 years after my heart told me it was time to quit, and the fact that this disease has struck at a time when everything else in my life was starting to turn in a positive direction -- freedom from the booze, rejoining my old band (which I drank and drugged my way out of the first time around) playing music that I love, repaired and renewed relationships, and continual spiritual growth and awareness of the divine presence.

So I'm open to suggestions of other strategies for keeping my mind in a positive space so I can be open to healing.
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6 years ago  ::  Feb 22, 2009 - 12:38PM #4
PaulW
Posts: 40
I have small cell lung cancer stage 4. I smoked for a lot of years and am now only 87 days quit from it. Everyone is differen't so it would be hard for me to tell you how to keep from the depression that can go with this stuff. I look at it this way, when God want to take me he will, no matter what I think, which is ok. The thing I see is for you to live life, don't just lie down and let it roll over you. You have music that would be a big outlet for me if I could play more then the radio, lol. Try to avoid negative people also, its like a syphon hose. they suck the life out of you. You have your faith, I am not sure if you go to church, but when I did there was all kinds of things to do there. I used to work for a church coffee house we did every friday night. We served anything you could get at star bucks usually with cheese cake. We had Christian bands come in and do their gigs. It was really cool and a good outlet for me. There are many things you can do, just don't give up that is the surest path to death!
Peace
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6 years ago  ::  Feb 22, 2009 - 11:25PM #5
nevillenosher
Posts: 126
Hi Shawn,

Paul's advice is good so the best thing is to do whatever it takes to keep from the negative thoughts and stay focused on on the good.  In my case it was watching Marx Brothers movies and 3 Stooges shorts and I Love Lucy.  It is different for everybody but if  you can find a way to laugh or to be doing something like Paul at the Coffeehouse just something to take your mind off of the illness and be focused on living life and enjoying being in the moment.  The cancer is part of your life at the moment but just don't let it become your whole life would be my thought.

All the best and do come back often and let us know how it's going with you,
Malcolm
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6 years ago  ::  Feb 23, 2009 - 10:00AM #6
frankieestep
Posts: 682
Hey Shawn!

Welcome to the board!!  Although I am sorry about what brought you here.  We are truly a great group of folks, here to offer whatever support we can.  It's not easy being positive during this type of thing.  I was diagnosed with stage 3 breast cancer at 41 years old.  That was almost 13 years ago!!  I had surgeries, chemo, more surgeries, and a 5 year treatment of Tamoxifen.  Then we got to the side effects of all the crap I had to take.  Way more fun than anyone should be allowed to go through!!

During the chemo, which was really hard on me, I had to make fun of anything I could.  For Halloween that year, I really looked for a Monk's robe.  I would have been a great Uncle Fester!!  I had the pasty complexion, black circles around my eyes, and the bald head.  Perfect look, but no robe to be found.  One of my friends who is also a cancer survivor used to "advise" me about what foods tasted better coming back up.  Yeah, I know.  Pretty sick humor.  But it kept me laughing at the cancer instead of letting it defeat me.  Then I could go on with my stories about being a bald woman in a truck stop, but I think you get the idea.

It wasn't long after my cancer treatments that my daughter had her first little girl.  Emily was the light of my life!  She died a sudden infant death at only 6 months old.  My daughter in law was pregnant with their little girl at the time, and my son came to me and asked how they could go on knowing that this could happen.  I told him what I will tell you now.  You can't go on if you live your life in fear.  Fear defeats you every time.  It will paralyze you, and take your joy of living from you.   
Cancer is the enemy, but the fear is a greater enemy.  Negativity is another form the fear will take.  Don't allow it to take away any part of your life!!! 

One of our dear friends here, Miss Itty, has such a beautiful spirit and zest for life.  She is such a spitfire, and is determined to live each day to the fullest.  We have a thread called "Just for today..."  Go there and see what we promise ourselves to allow "just for today".  Visit our Bedlam Saloon and read about how we vent and how we celebrate our lives.  One day at a time, we each live the best way we can.

So Shawn, we are here to share your journey.  Please let us know what's going on, and how you are doing!
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6 years ago  ::  Feb 27, 2009 - 7:56PM #7
spguyot
Posts: 4
The latest: Last week, I go the impression from my radiologist that surger seemed pretty likely; but Monday, he Tuesday, he called and asked me to om in for an MRI, explaining that they needed one more test to be certain. When I saw my lead physician, he surgeon, he explained that they wanted to make sure the cancer hadn't spread too far up toward the cheekbone, which could make sugery inadvisable due o proximaty to my brain, major blood vessels, etc. He hadn't had time to thoroughly examine the MRI, as he'd been in surgery all afternoon, but that he would know by the time of our appointment the next Tuesday, which was originally intended to test leg bone as oonor its for rbuilding the cancerous jaw to be removed. He emphasize that I shouldn't be frightened, but that he didn't want to make any promises in the absence of necessary factual data.

Still, I'm pretty shaken. With surgery, I have a chance for survival. Without it, they could only do "prophylactic" (rather that curative) radiation and chemo to shrink things enough to reduce my discomfort for however long I lived.
Right now, I and a bunch of family and friends are praying and creatively envisioning my seeing him Tuesday, being greeted with a smile, and news that the surgery would proceed. I'd like it if you other folks in this forum would add your prayers and positive vision to this. I have never needed faith in a loving God and the power of prayer and positive thing as much as I need them now!
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6 years ago  ::  Feb 27, 2009 - 10:09PM #8
frankieestep
Posts: 682

Shawn,


You continue to be in my prayers.  Please let us know what the doctor says at the visit.  May you be all smiles when you walk out!!!  Ok, I know you won't actually be ALL smiles, but I do pray that the surgeon will be able to do the complete surgery for you.  And I pray that you heal beautifully from this.

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6 years ago  ::  Mar 02, 2009 - 6:49PM #9
dpatel
Posts: 339

You will be in my prayers. God bless

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6 years ago  ::  Mar 04, 2009 - 1:22AM #10
Sierra Rain
Posts: 566

Shawn


Waiting can be the worst part of any of this stuff.  There is no plan or direction in the waiting time--just room for fear and anxiety to take a stab at you.  It seems to come in waves too.  My advice--let it roll over you.  By that I mean feel it--acknowledge it--or it will come back and bite you ten fold later --and then let it go.  It takes a bit of solitude--which can be surprisingly hard to come by at a time like this--and a bit of steel will--but you can do it--you can't move past the fear if you try to ignore it.  I was always surprised to learn that it wasn't as bad as I thought it was gonna be when I let myself just experience what I needed to.  Sometimes saying it outloud to someone helps too.  Often as the patient we feel like we need to protect everyone from how we are feeling--we don't want to add to their burden.  Unload.  Don't be afraid to do that when you need to.  Sometimes our fears are like 3 year old little kids that are jumping up and down for attention.  As soon as you look them in the eye and meet their needs they quiet down and resume normal activity.


I hope that helps a little.  Hang in there.  I will hang with you. 

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