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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

Wednesday, June 3, 2009

The Cancer Chronicles 37

This Is The Moment!
April marked my two year anniversary of losing my tongue to cancer. My, how time flies when you’re having fun! Since then, I was relying on a feeding tube for all my nutrition. If you are not a regular reader, you will find how grueling it is to live with and the anguish it causes in The Cancer Chronicles archives.

By December 2008, I began eating more solid foods. I returned to MD Anderson for a check up and everything went well. My scans were clean, no sign of the cancer’s return and my doctors were happy with my progress. My speech was becoming clearer and I had an appetite like never before.

In April 2009, TWO YEARS after losing my tongue to cancer, I was able to eat again without the aid of my feeding tube. Foods I was never able to eat post cancer were now being chewed with caution.

I guess you could say, this is my "new normal." I really hate that term. So many cancer patients use it. Nothing in my life has ever been "normal." Besides, what measure do you use to determine normal? THERE IS NO NORMAL! It just is what it is. Life evolves. This is MY evolution. It's not always easy. I still become exhausted. I still have a lot of jaw pain associated with eating. Side effects courtesy of the radiation, I assume. Some foods are still too much work and not worth the effort. What I can eat, I savor every moment!

One evening I was famished. I needed a soft variety of foods. I thought seafood would fit the bill. Ummm...that sounds perfect! It was time to go public with this voracious appetite! I treated myself to Red Lobster and consumed “The Ultimate Feast” consisting of: Fried Shrimp with Tartar Sauce, Snow Crab Legs drenched in butter, Shrimp Scampi swimming in garlic butter, and a Lobster Tail, yes slathered with MORE butter, along with a LOADED baked potato...OK MORE butter, DOUBLE BUTTER DAMMIT, and a salad with a ton of Ranch Dressing, no butter. It took forever to finish.

Just because I can eat again, doesn't mean it's not difficult. I felt like a fat cow and when I finally returned home, I buried my face into TWO pieces of Carrot Cake. I was on a roll and ready to try more difficult foods!

THE ULTIMATE FEAST: I can't believe I ate the whole thing!
My first bowl of popcorn!
I even ate my nuts! I devoured an entire ONE POUND can of Macadamia Nuts in one sitting!

Now, the big question… When does the feeding tube (Mic-Key Button) come out? I asked my doctors in December, but they felt it was too soon. At that time I was still relying on it about 25% of the time. Today, I can eat a full meal that sometimes needs to be modified. There are still difficulties and there probably always will be. Pain and the lack of saliva are my two biggest issues at the moment.

As months passed, with each new food: My first popcorn, my first pizza, my first steak, my first lobster, came a celebration unto itself, a major victory! These milestones I can only liken to a child's first step or first spoken word.
On March 26, I contacted Dr. Clayman’s assistant, Rolando, asking when I could have the tube removed. He was a bit surprised that I still had it, given my progress. Jokingly I said, “I’d take it out myself if I could.” Then seriously he said that it’s not that difficult and if I was not squeamish about it, I could manage it myself.

I knew it wasn’t hard to remove the Mic-Key Button. Parents exchange them for their children that have them, regularly. I just wasn’t sure what you do when you take it out for good. Rolando explained, after it’s removed the hole will slowly close on its own and to keep it clean and covered for a week.

That was all I needed. My Mic-Key has been very good to me, but it was time for it to go! This would be my final victory! That night, I deflated the balloon that held the button in place and removed it from my belly. I can't begin to express the jubilation! If my life were a musical this is the song I would sing at this moment!

I have a complete photo shoot of me removing my tube, but after reviewing it, I thought maybe it wasn’t such a good thing to post. Although a few of my readers have requested to see the removal process, I think showing the final outcome is best.

Immediately after removing the tube, it looks more like a bullet wound!
VICTORY IS MINE!For the moment anyway…

PS Since removing the feeding tube I have gained 11 pounds!!! Go Junk Food!!!



Sharifah Rashidah bt. Syed Ahmad said...

Hei Brian,

I am green with envy. Lobster, huh? Wow! That is really great. The news is really motivating for me to keep on trying.

I sure hope to join you in celebrating the victory soon..

I have no idea how you do it, friend, but sure am glad that you did it.



Dr. Swill said...


Thank You, I hope you will find your way back to a more normalized meal. Any progress is good and then build on that from there. It wasn't fast enough for me, but I'm very grateful. Keep apprized of your progress. I wish you well.

Peace B

Maureen said...

You're eating!!!!!!!! OMG, that is sooooooooo damn awesome! I am thrilled for you.

The big question is...have you tried the Yak burger yet??? LOL!

Oh Brian, I am so glad for the progress you are making. I am keeping my fingers, toes, eyes and and anything crossable crossed that your scans come out clean, too.

Ginormous {{{HUGS}}} to you my cross country friend!

Words To Live By:

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