Saturday, October 24, 2009

DAY 512 - Day 415 in Recovery Paradise

Just finished by last quarterly check-up with radiologist yesterday. I was scoped through my nose down my throat (that was a wild ride for sure). Got a visual "all clear" and am scheduled for another CT scan around December. Oddly, now living in 4 month increments.

A year ago, I had my spouse write my daily blog and my post to the forum. My mouth got so dry and throat blocked, she would often guess (did a good job) at what I was trying to say and ask me - "How does this sound? Is this what you are trying to say?"...ha

I had wine and garlic chicken pizza tonight at great Italian restaurant with my family. No way I could have done that this time last year. It would have been me sipping water and watching and wishing.

As odd as it sounds, life is better now that it was before the diagnosis and it was good then. I appreciate EVERYTHING now. Daily, I wear a yellow "Live Strong" wristband to remind me of my CANCER and my new life commitments (as I truly sometimes forget it ever happened) next to a blue "Can't Change It" wristband to remind me to positively handle the things in my life that I can't change and an orange hairband (belongs to my 11 year old daughter) to remind me to maximize my responsibility as a husband and father. They accessorize really well with all my suits.

A friend of mine has a blog and a book re: "Can't Change It" that deals with the parts of life you can't change in a positive way. Ten years ago he was hit head-on by a drunk driver and declared DOA. A miracle recovery and physical rehabilitation has him now as a successful author and national motivational speaker. His unforeseen event turned his life totally around. He was a Cutco salesman one day and now motivates thousands. He used his "Unfair Opportunity" to totally change his life.

If our lives were a Nintendo game, we are now getting an extra turn and a chance to go to the next level. How many times have we all heard someone on the news lament that they lost a loved one and never got the chance to tell them one more time that they loved them?

Live not as though there were a thousand years ahead of you. Fate is at your elbow; make yourself good while life and power are still yours.
- Marcus Aurelius Antonius

Thursday, October 22, 2009

DAY 510 - Day 413 in Recovery Paradise

1 year ago today I wrote:

"I think I may have the flu. My stomach hurts and I feel nauseated with a bit of a headache. I managed to get four half-meals down today. That's 1500 calories. My last visit to the doctor ended up in me taking even yet more pills. If I didn't know better, I'd say my body is falling apart. I take pills for a heart condition, eye drops for glaucoma, pills for acid reflux, nasal spray and pills for my sinus problems, fluoride trays for my teeth, and dealing with recovery from chemo and radiation treatments for my cancer. Life is still good, and I appreciate what I have, but it would be nicer to feel better."

October 22, 2009 - had a fabulous day today. Felt great all day. Talked on the phone all day (yes, I get paid to do that) and ran an after-hours business mixer for the Chamber for 100+ business people. Had a glass of wine and a meatball sandwich. What a difference a year makes.

I still connect with my Tonsil Cancer on-line Forum. It was a tremendous asset in the darker days a year ago. My contribution tonight was:

A lot of us on this forum and in this unfortunate predicament,are in our 40-s to 60+ (All that wild living back in the day). Here is a song written by the Beatles 44 years ago (1965) -time flies when you are having fun - that still holds much relevance to all of us.

I listened to it daily during the darker days of my treatment. I had it on a CD with the Beatles' "Yesterday" [when all my troubles seemed so far away} and Bob Dylan's "Knockin' on Heaven's Door", Bobby McFerrin's "Don't Worry, Be Happy" and AC/DC - "Highway to Hell" [quite an eclectic mix, eh?] -that I had the radiation techs play while I was strapped down for treatment.

It was 15 minutes of barely controllable claustrophobia and I soon realized the time slot was equal to about 5 songs. "HELP" was the last song and when the CD got to that song, I knew I was almost done and could hang on - just embracing the words.

Thought I would share the irony of the words if you don't know it. I had been very independent and rarely sick my whole life. It soon became a theme song for me to fully appreciate my wife and friends and how incredibly lucky I was to have them around."


Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these days are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I've never done before.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these days are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me, help me, help me, oh.


Thursday, October 8, 2009

DAY 496 - Day 399 in Recovery Paradise

One year ago, I wrote:

"I still have the sore on the right side of my tongue, but it's getting better. I think it is healing because of the salt water rinse I gargle with 5 or 6 times a day. I think it is a canker sore and not related to thrush. I still am taking the thrush medicine and the rest of my mouth/tongue feels better. I still have a bit of a sore throat, however. The mucus was heavier and more apparent today than in the past few days. I also had more dry mouth today. Weird. I traded off between dry mouth for awhile and then mucus. I had most of my meals by mouth today, using the Instant Breakfast mix (375 calories) (2 cans each meal), but used the tube for the other brand, since it tastes like cardboard. It only has 300 calories per can, but it has fiber, unlike the IB."

I had commented on being up to 148 lbs. trying to get to 150. Am down to 142 and know that I am at my ideal weight. Went up to 144.5 last week (half & half + ice cream smoothies and peanut butter and honey sandwiches every night) and feel a bit bloated. Will stick with fruit smoothies and try and stabilize around 142.

Mouth still dry a lot. Had blood drawn yesterday and they had a hard time getting the vial full. Told me I had to drink for water. I am trying to add an extra liter of water a day to my diet. Today is Lise's birthday. Sarah and I made homemade Love Coupons for her. She is a great caregiver and I give thanks everyday for having her in my life.

I subscribe to a tonsil-cancer on-line forum. Some of the people that participated last year are not going to make it. Often the posts are of people’s successes, but lately have been dotted with posts from caregivers notifying the rest of us that their spouse had their cancer return. That is the unfortunate reality of this disease.

Love the time you have, tell everyone you love them, let the little things slide and know that just about everything that happens is little.

Quote for the day: "Every man dies. Not every man really lives." ....William Wallace

Saturday, October 3, 2009

DAY 491 - Day 394 in Recovery Paradise

My post from one year ago:

"My wife Lise comes home every single day for lunch. It's the highlight of my day. After lunch we walk around the block to get some exercise in. She makes me do it, even when I don't feel like it. It feels good to make lunch and have it ready for her. I do the same for dinner and have it ready for Lise and Sarah when they get in at 6. This is definitely a positive change over the last month."

I couldn't swallow anything - had to be fed through a feeding tube. I gagged constantly on the mucus. I could barely drink water.

Now I am about 1 year plus a month post treatment and although my mouth is very dry this morning...I did have a Subway meatball sandwich last often, last year, I would sit and sip water and watch my wife and daughter have one of those after Sarah's ballet practice...I wanted to be able to eat one so badly...a good portion of the pleasure now, is because I CAN eat it. I never had a meatball sandwich before this "inconvenience" and never even had a desire to. I eat pretty healthy, but occasionally have a burger or meatball sandwich just to see if I can. Dry bread is still out. Spicy is still an issue and the "spit pills" make me sweat out the top of my head like I had a double jalapeno.

A year ago I was holding up a drip feeder on my feeding tube while watching the "Iron Chef" on the food channel...thinking about that meatball I have double the pleasure because I CAN eat one.

Quote of the day:
"It is the Law that any difficulties that can come to you at any time, no matter what they are, must be exactly what you need most at the moment, to enable you to take the next step forward by overcoming them. The only real misfortune, the only real tragedy, comes when we suffer without learning the lesson." -- Emmet Fox

Thursday, October 1, 2009

DAY 489 - Day 392 in Recovery Paradise

I posted this recollection tonight on the cancer forum I participate in. Someone had posted a question to the group about the procedure for having one's feeding tube removed. Everyone chimed in with their story. This is mine - and I must say - it was very different from anyone else's...ha.

I couldn't wait to have my tube removed. I felt like I was a bit player in the movie "Alien". I waited too long to have mine installed - two weeks post treatment. I had told myself I was strong enough to make it through without the tube - I did, just for the length of treatment, but not for the post they say- the 2-4 weeks post treatment is the worst. I had lost so much weight and couldn't even keep water down, let alone protein drinks. I had to go into the hospital for 3 days to hydrate and be weaned off my warfarin (blood thinner for heart issues) and then had an operation to install the tube.

I figured it would be the same process to take it out. They took me back to a curtained-off cubicle in a post-op recovery room (about 10 cubicles in all). We waited for almost 45 minutes past the scheduled time and the doctor never showed. The nurses kept apologizing and paging him and confirming he was somewhere in the building.

Finally, I got up and put my shirt back on to leave, as I had to pick up my daughter from school. As we are walking down the hall, the doctor comes running up, coat flapping, out of breath, apologizing and telling me he could do it now. I told him we were out of time and he responded that it would only take a minute. I couldn't see how it would take an hour to put in without the same procedure in reverse. He didn't even have me take my shirt off. I laid down on the recliner; he says "This may smart a bit" and YANKED IT OUT! It made a huge snapping sound like a giant rubber band breaking. Everybody in the room could hear it. He put a bandage over it, taped it down, said "Good Luck" and disappeared down the hall. I was stunned. Maybe 10 seconds, from unbuttoning my shirt to sitting up and buttoning it back again. Now I have two belly buttons. My daughter says it is because I was "born again" and this is my second life. I like it.

Oh, by the way, it really did "smart a bit", but now is just a good story.