Friday, January 9, 2009

How to take a shower without drowning?

And I thought learning to live with a feeding tube was the height of my scientific career. What (?); with all the knowledge I now possess about gravity, I think I should be offered the 'Isaac Newton Chair' on gravitational theory at MIT.

Now comes along something called an 'laryngectomy', which is surgery to remove the voice box (larynx), usually because of cancer. This starts our new career as what is referred to as being a 'laryngectomee'. This is lesson one. Spelling the damn things must be lesson 287.

OK, so now I have cancer and I have no larynax! How bad can that be? No one ever listened to me anyway. Don't lie to me; I have 4 kids.

I want to share with you some of the more (to me) humorous moments of life as a laryngectomee, and after the fog of denial floats away along with memories of lying in the hospital bed with a hose in your nose. Sorry, I digressed. I have a habit of that I think.

Your new best friend in life is your speech therapist. She (in my case) is the one that answers questions like how do I blow my nose? Will I every be able to be in public and not feel like everyone is staring at me? How to remember to put the tissue over your stoma and not you mouth when you sneeze? What do you mean I have to stick that long thing in there and get the gook out in order to make sound? On and on and on. She is able to look at me with the disgusting problem of seepage and keep a straight face. She helps with all the 'toys' of the trade as it were. The how, when and where of not being able to be in public without embarrassing yourself. Never mind helping with speech. Mine is a god send. ~~Steve, put the tissue over your stoma please. ~~

A new occurrence in your life is the strange spots that appear on your shirt or jacket. You get use to changing your cloths a lot and keeping up with the wash.

Not that I eat out a lot, but I do have a love for KFC mash potatoes and gravy. What, no drive through? I have to go in and hand them a piece of paper with my order? Yeah, sometimes you just can't get the 'voice” working. This leads to meeting three (3) types of people. All of which are very nice and helpful. The first is the one that knows that you can not speak normally and excepts that fact and reacts back to you with a normality in their interaction with you and speak to you as with anyone else. The second type is most appreciated. They realize what is what and ask the question. 'Can you hear?' The third type is a hoot. What I call the pro-wrestling fan. They take the note paper I gave them and write back. I get a kick out of this. Sometimes, all three types can raise the level of their voice for some odd reason.

Some other issues which cross your mind, even as you develop and use your voice. Most people have difficultly understanding what you are attempting to say. This gives one pause at the aspect of having to make any sort off 911 call. Daunting!

You find out that stoma guards come in different colors. I'm big on matching my wardrobe. Scarves are our friend.

Did you know that the prosthesis come in different models and that a cleaner for brand A doesn't work in brand B?

My cat is scared by that strange noise which I can make when I cough or sneeze.

I miss being able to have my mother understand me when I tell her that I love her. My grand kids seem to understand when I talk to them with no problems.

I just felt an urge to express this to you guys as I miss you and want to let you know that I am still out here kicking and living and loving my family and friends. I hope you don't mind.

Life as a laryngectomee can be stressful in the shower. One must always ware the shower guard, face away from the shower head and always ring the water out of the rag before washing your face and neck. I can drown.

I leave you with these words which are not mine:

Life is not waiting for the storm to pass.......its all about learning to dance in the rain

Be strong because cancer sucks!

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