DAY 612 - Day 511 in Recovery Paradise

About this time last year, I had just started back to work and was working part time, four to six hours a day. I had my feeding tube removed and was glad to be rid of it. It saved my life, but I hated it. Every time I took my shirt off, I conjured up the movie “Alien”.

My throat was sore (still is-really sore this morning) and I got tired very easily. Except for an occasional day, I have great energy and exist on about 6 hours (or less) sleep a night. I have my about 2 year mark coming up for my check up with another CTscan. They say that 2 years and 5 years are major hurdles to be declared a survivor. As my throat is very sore this morning, I find myself playing the “what if” game. The “What if my cancer comes back” equation is rather short and has an inevitable ending. Can’t change it. However, the “What if I am cleared for another year and beyond?” has far longer-lasting possibilities and a different set of responsibilities that I can change and control. “Time’s a wasting – better get on it”.

I have found a new purpose for the divesting of my accumulation of “collectible junk”. I am setting up new college investment packages for my grandson Zak and expanding the one I have for my daughter Sarah. My eBay energies will perhaps end up at Yale one day.

DAY 610- Day 509 in Recovery Paradise

I started this blog 610 days ago. I still stay connected to my personal lifesaver: the Tonsil Cancer Group on Google Groups. They are the only ones that I believed regarding treatments, expectations, recovery issues and specific solutions. Some are behind me and some are ahead of me in the treatment process, like a long line of friends holding onto each other trying to cross a nasty flash flood. We didn't see it coming and we won't all make it to the other side. Their sincere and truthful insights into the reality of Tonsil Cancer treatment and life after treatment made the bad times bearable. We are in different parts of the safety line stretched across a torrential river. We are obligated to each other now and obligated to help those behind us, as those ahead of us paid forward to help us.

This is the gist of an email I sent to a new member of our Tonsil-Cancer group tonight. This is not a club that actively recruits new members, but sadly, our ranks grow every day.

"Check out my blog. It chronicles my personal health decline from treatment and the return to health chronologically for me. I go back and reread it from the beginning often. Although it has been about a year and a half, it seems eons ago. There have been some cases better and some worse than mine, but from what I have read, I am pretty much middle of the road for treatment. I am 62 now and was 60 when I was diagnosed, the same as you.

I thought I was a tough guy, played through the pain in high school and college, and previously didn't have much time for people that were sick or whiners. This treatment you are about to go through in the long term will save your life, but in the short term it will kick your butt...but it is worth it...you may doubt that at about day 60, but it does get so much better that most of us are far better off than when we were diagnosed (mostly a positive mental change).

You are about to receive the gift of a very different, unique life. After treatment you will never look at ordinary life in an ordinary way again. Every day will be a gift.

When I get to thinking that I am tough again, I re-read my blog from the lowest days and am humbled. You might consider a blog (easy and free: Google - blogger). It inspires those coming behind you, it reminds you of your very human side, and it is the most effective way to communicate with people that are too nervous or scared to call you and for when you can't talk to them [remember: they are radiating your throat].

Listen seriously to the advice about a feeding tube, get prepped for a lot of down time--this was music for me (my eyes got too blurry to read, and I couldn't speak for a while). Drink an ocean of water. Put half-liters in all the cars, all the rooms of the house, along with tissues and spit cups. Get ready to spend some serious time inside your own head (perhaps the scariest part of this experience).

This experience will make you stronger, you will appreciate life more, and you will make it. My diagnosis and treatment [3 chemo/33 rads] seems unreal and so far away. Focus on the future, look beyond today or tomorrow. When my kids would get car sick, I would tell them to not look at the curvy road, look at the horizon.

Put a positive spin on this: You get to go on an incredibly scary roller coaster ride. You get to sit in the front car. If you could back out of line, you would--but you can't. You will get scared, but you will be cool and look brave. Everyone around you will envy your braveness and bear your testimony for years to come.

This group will.

We will be your loudest cheerleaders, because we have EARNED the right to do so.

We also all somehow got in the wrong line for the scariest ride on earth and couldn't get out without getting in the front car and plunging off the edge. Everybody in this group doesn't kinda-sorta think they know what you are going through; WE KNOW EXACTLY WHAT YOU ARE GOING THROUGH. You will make it through. You will live many more years of a fabulous, quality life and eventually die of old age, a happy old man.

By the way, don't forget to throw your arms in the air when your ride shoots off the top and everyone else is screaming like crazy. You will look very cool."

These are my new friends. We have never met. I know them better in two years than most of the people in my life I have known for 40 years. We share the same can't-get-off-the-roller-coaster-ride-through-Hell, like a recurring Twilight Zone nightmare, and it won't ever come to a complete stop. You live in 3-month, 6-month, 12-month increments, waiting for the clean report from your next CTscan, each report buying you more months and inching you up the survival percentage chart. Every ache and pain, cough, sore throat isn't viewed the same ever again. (A friend of mine, a brain cancer survivor, won't run for exercise, because if he injures himself, he thinks he now has ankle cancer.)

When the group members speak of their pain, joy, fear, positive outlook...you know EXACTLY how they feel. It is a club one would never sign up for, but once you are in, it is like the Mafia: You are in for life. We didn't have the power to stay off the Cancer Ride, but we do have the power to live fully with the time granted us, whether it is two months or twenty years, as each new day truly is "Another Day in Paradise."

DAY 609 - Day 508 in Recovery Paradise

Some of the people on my Oral Cancer forum question what they "did wrong". I have to concur that we didn't "do anything wrong" philosophy. We all now know that Oral cancer is caused by, drinking, eating, hot coffee, tea, hot cocoa, not brushing your teeth regularly, sex, drugs & rock-n-roll. All rock stars would be dead now if a bad life style was the cause. I lived a not-so-bad-style for 60 years before I received the "C" gift.

I live better and healthier now than I ever did before, I don't even stand close to the speakers at concerts anymore and I brush my teeth every night. Otherwise, I think I am good for another 60 and by then I will probably be too spent to care. My doctor told me don't smoke and don't drink too much to avoid other issues more prevalent than oral cancer, other than that, she said doctors really don't know what causes oral cancer or they would tell us specifically...being human and enjoying life can cause cancer [do monks get cancer?] just the luck of the draw...kind of like why I hardly ever win at rock, paper, scissors.

My advice is to live the remainder of your time fully, with no regrets, love those who mean the most, work on your legacy to be remembered by, mend all the bridges and for God's sake don't stop enjoying your life. There is always a bottle of good wine at the table (only 1/2 glass a night - I usually forget where I left it somewhere in the house-ha), I use my parent's heirloom china for spaghetti & meatballs instead of just at Thanksgiving, I hand-write and snail-mail note cards, the old fashioned way - not emails- to all my kids, my in-laws and my 3 college buddies as often as I can. I bought all the "Best of..." cds from the 60's-70's and crank 'em up on the car stereo everywhere I go. I have heard it on the forum many times before, can't change it - it is what it is - even if we knew now what we did wrong when we were 24...so what? Can't change it. We may not have the power over the quantity of time left, BUT WE CERTAINLY HAVE POWER OVER THE QUALITY OF THE TIME LEFT!

Go to bed every night with a smile on your face because you had another great day. I have finally come to believe my struggle with tonsil cancer is a gift. I never thought I was going to live forever, but I did put off a lot of personal stuff thinking I had endless days before I got "really old". I now have a renewed sense of purpose. I have traveled everywhere and done a ton of cool stuff. My "bucket list" is personal & private. Nobody but me can drive or fly me there.

My quote of the moment is:

"When you get old, don't slow down. Speed up. There is less time left".

Elvis Presley - Amazing Grace

DAY 585 - Day 484 in Recovery Paradise

About one year ago, on this day, I was preparing to go back to work after being off for 6 months. I went back to work part time the third of January, 2008 part time. I was still very tired and took a lot of naps. I still had severe issues with my mouth and had a sore throat with sores on my tongue most of the time.

As I talk for a living, my fear was that I wouldn't get my voice back. It was hard in the beginning and I just worked half days. I would be exhausted by noon and go home to take a nap. By April I was back to working full days. Here we are at the beginning of 2010 and as they say - "I am happy to be here." There were moments when I wasn't so sure.

The Tonsil Cancer Forum I connect with [ tonsil-cancer-support@googlegroups.com ] is full of others looking for support and sharing their stories of recovery ( and defeat). We all posted a photo from New Year's Eve with each of us toasting the others with champagne or milk. One of the group is going to photoshop all of us together for a group picture. Should be great.

Part of my Legacy Project is to not leave behind misc. "stuff" for my family to deal with. "Chasing Zen" is my goal - divesting myself of all the extra things I have spent over a half-century collecting. Some things are valuable and interesting and some are not. The "not" are easier to divest and I am starting there. Goodwill wins and eBay profits. For example, I have somehow acquired about 40 years worth of things like "shoe polish." I figure I will be around for only another 20 years, so I am building shoe shine kits for each of my kids and unloading now. Over the holidays I "gifted" my sons with all the extra spices from my cabinet. They like it and I am getting closer to my 'ZEN'.

I am looking forward to an unbelievable 2010 (I like the word 'unbelievable' as it works both ways). Happy New Year to all!