Wednesday, December 8, 2010

DAY 1065 - Day 823 in Recovery Paradise

Elizabeth Edwards (1949-2010) was an advocate for staying strong while living with cancer.  She lived with stage 4 cancer for quite awhile.  This warrior in the cancer crusades lost the battle,  but made an indelible mark on the rest of the world with her actions and her words.  Her last Facebook post was:

The days of our lives, for all of us, are numbered. We know that. And, yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human," she wrote.

"But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn't possible to put into words the love and gratitude I feel to everyone who has and continues to support and inspire me every day. To you I simply say: you know."

For all of us, the game of life will have an end.  How we choose to live our days, hours, minutes; the impact we have on others, those that will carry our torch after we are no longer in the race; this will be our legacy.  It is hard enough to be strong and a shining example in the best of times.  How we choose to face our challenges and lead our lives in the worst of times will surely define who we really are and how we will be remembered.

I participated in a forum that is building  a Q & A checklist for the unfortunate souls yet to be diagnosed with Oral/Tonsil/Throat, etc. Cancer.  My contribution to the group was:

*Get all your dental work done before your face and jaw are radiated. I have the special custom made dental trays and fluoride paste.  I use it every night and will forever, as a result of the head & neck radiation. The bone structure is weakened and you want to avoid having any major dental work, post radiation,  if you can.

* Bulk up in weight while you can.  You need to have something extra to lose, because you will lose weight.  I added ten pounds and lost thirty-five.  You won't be able to eat again until much later so enjoy butter and cream on everything until it starts to taste like moldy cardboard.

*Seriously consider having a "peg"  feeding tube installed (a long plastic tube sticking out of your stomach so you can take protein and liquids on a gravity fed system when you can no longer swallow - not even water).  I thought I was a tough guy and got all the way through treatment - and then landed in the hospital the week after treatment ended to get hydrated and have the tube installed - Hated it .  Immensely!  But it saved my life.

*Maintain a light regimen of exercise, walking, stretching, anything - it is as good for your mind and it is for your body.  You will get weak and for me I was reduced to the pitiful shuffle of a 90 year old man.  Having been in sports in high school and college, I wasn't used to not being able to walk across the room.  I was a whiner about the exercise, so instruct your spouse, friend, caregiver, to be unrelenting on the encouragement to get a bit of exercise in daily.  You will be better off for it.

*Surround yourself with positive motivation, whether it is positive quotes, music, relationships, prayer, etc.  Develop a powerful, positive Mantra.  I used mine ( I WILL beat this cancer, I WILL beat this cancer, I WILL beat this cancer ) with a custom CD with 5 three minute songs during the 35 fifteen minute rads to fight the claustrophobia and "why me's".  To insure precise targeted doses of the radiation you are fitted with a custom face mask that bolts to the table and your body is strapped down to the table before they slide you into the radiation tube.  I used to ask my radiation techs if they charged extra to the S & M patients. Very claustrophobic.

*Start a blog or diary.  Sometimes this will be the only way you can communicate.  My throat was so dry and I also couldn't swallow - even if I could, it was too painful.  Writing in my blog solved the communication problem.  I remember friends calling to check up on me and having to hang up because I couldn't get any sound to come out.

 *Make a Gratitude List of all the good things you are thankful for and the experiences you have had in your life.  DO NOT write a bucket list (until you recover) Do not focus for one second on what you don't have or didn't do.  The size of the good-things-I-am- thankful-for Gratitude List will surprise you.  It will be much longer than you thought possible.  Make copies. post one in every room of your home and put a copy in your wallet.  Read it every day. Read it again.

*Radiation and chemo (perhaps surgery) Treatment is awful, but it is necessary to survive. I also hated going to the dentist my whole life,  but I did it because I wanted to keep my  teeth.  I hated going through rads and chemo, but I did it because I wanted to keep my life.  Treatment is just a job,  A dirty, nasty, unforgiving job.  Do the job.  Get it over with. Move on with your life, a better life for the number of days you do have .  Now you can write your bucket list.  I was lucky.  I have had the good fortune to live a fantastic and exciting life.  My list only had four things on it.

1.  Tell everyone how important they are, how much you love them and mend ALL your bridges. It is a shame that I had to get cancer to figure this one out. * I threw a party a week after I got my two-year, cancer free, diagnosis,  with over 50 people in attendance to celebrate my relationship with them - family, friends, and co-workers.  It was fantastic. I loved it- they loved it. Very fulfilling.

2.  I wanted to write and be published...and here we are on the world wide web.  I have feedback and emails from people from all over the world after reading my cancer blog.

3.  I always wanted to play in a rock band.  On my 63rd birthday (three months ago) I started taking music lessons on my new Fender electric bass. It is really a thirty year old NEW electric bass.  I bought it NEW thirty years ago in a momentary lapse of judgment in a fleeting mid-life crisis, recovered,  and promptly put it in the closet.  I rediscovered it, wiped off the dust and bought an amp. 

Sometime next year, my guitar teacher is grabbing some of his friends and is putting a band together for me, one night only,  playing the only three songs I know how to play, at a pizza parlor with a invitation to my friends. 

Then I can hang up the guitar - or sell it on eBay or God willing, live long enough to really learn how to play that thing and get into a real band.  All classic rock, country and blues of course.

Note: I am growing a beard and stopped cutting my hair - because I can (which is amazing because I lost all my hair during chemo and I thought it would never come back) to accentuate my new found Rock Star image.

4. Leave a legacy to be proud of.  I am compiling a print version and DVD version of my life stories, excerpts from my blogs and my new found deep appreciation for all those that are important to me.  I finished my will.  I have provisions for my wife and four children and my new grand children.  I intend to live a full twenty years more....but, just in case.

Long after the cars and bank account and things are gone, how you will be remembered, will be your legacy. 

I love these quotes:
"What we are is God's gift to us.  What we become is our gift to God. " ~Eleanor Powell

"It is never too late to be who you might have been." ~ George Eliot

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