Cameron and Kacey

Cameron and Kacey
My Beautiful Angels

Tuesday, January 11, 2011

A New Year.....of Good Health and Good Luck....I Hope!

I had NO problems seeing 2010 go out and 2011 come in. In fact, I went out to celebrate it!! I joined a wonderful group of friends in Newport to see an amazing band that we love and say good-bye to a VERY catastrophic year for me. I must admit that I have shed a few tears for this past year, for the pain that it has caused me and my family, but I also shed some tears for the remarkable miracle that has blessed me as well. A year ago, I had NO idea what I would be up against...that I would be fighting for my life, AGAIN, and trying to win the battle against this HORRIBLE disease. But now, almost a year later, I can say I did it!!! I have again beaten this monster and pray to God EVERY night that I will never have to deal with it again.

As you can imagine, there is not a day that goes by that I do not get a pang in my neck or a twinge of my tongue that I think to myself, "Oh's back!" In fact, this cold weather is doing me in! My neck gets so stiff and tight that it has actually scared me into going to see my doctor at Dana Farber a week earlier that I had an appointment for. I had a few days last week where my neck just didn't feel right to me, so I called my doctor in Boston and she saw me immediately to reassure me that all was okay. It was just extreme tightness and said my neck felt great to her and she felt no lumps or bumps or changes. She did give me a muscle relaxant that I have taken a few times and feel much better. I will see her again on February 23rd as well has have a 6 month PET scan from the end of my treatments that day.

Unfortunately, I still have no voice and can make no more sound than a whisper. This wouldn't be a problem if I were a hermit and lived alone and never left the house or tried to answer the phone. But as most of you know, this is NOT my life and I use my voice EVERY day, forcefully, for my job as well as at home with my two cherubs, who are NOT totally taking advantage of me after six months of no voice! Not MY kids!! Yeah right!!

Mom and I went to Brigham and Women's Hospital yesterday to meet with an Otolaryngologist. (Nice word, huh?) Essentially, he is a doctor that examines, diagnoses and treats disorders, diseases, and injuries of the ear, nose and throat. Dr. Saxon also specializes in voice and swallowing disorders.

A speech pathologist performed a Laryngeal Videostroboscopy (LVS) which provides a “slow-motion” view of the vocal folds as they vibrate. In other words, another scope of my vocal cords! What used to be my LEAST favorite test, has quickly become an every visit occurrence...however this one was a bit different. Here is the description I received of the actual exam....

"The exam is painless. During the exam, the patient is seated upright, with the feet flat on the floor and leaning a little bit forward from the hips. The voice-speech pathologist will hold the tongue gently with a piece of gauze and a thin camera will be placed into the mouth. This camera rests above the tongue and only goes as far back as the molar teeth. There is a special lens on the end of the camera that can see down into the voice box while the patient produces an /eeeeeee/ sound. On occasion, to get adequate pictures a flexible thin telescope will be passed through the nose into the upper throat to visualize the vocal cords. LVS films are reviewed in detail by an otolaryngologist and the voice-speech pathologist who performs the exam."

Doesn't sound too bad, right?? Here's how it ACTUALLY went down (Mom, correct me if I'm wrong)......Patient is seated in a VERY upright, uncomfortable chair, with feet flat on a little tiny footrest, leaning forward from the hips and tipping head backwards as far as possible. Keep in mind I have limited flexibility of my neck from all of the radiation treatments. So now that I am leaning forward and trying to tip my head back to look up and feeling like a seal trying to perform at Sea World, the speech pathologist grabs my tongue quite forcefully and proceeds to yank it from my mouth, or so it felt. Again, keep in mind I have had surgery on my tongue, a piece of it removed, and also limited movement and flexibility of it as well.

So now she has a hold of my tongue and is pulling it forward....while doing this, she sticks a long metal probe, about 10-12 inches long and 1/2 wide, into my mouth and towards the back of my throat to get a picture of my vocal cords while I "try" to say the /eeeee/ sound. If you read the description of the test about and how it is "supposed" to go, it says the camera "rests above the tongue to take pictures of the cords and does not go beyond the molars." Oh REALLY!! So why then EVERY time she placed it into my mouth, I gagged and choked and thought I was going to lose my lunch!? She even sprayed me with a numbing spray to take the edge off, but CLEARLY was touching the back of my throat. She did this test approximately six times....such fun!

The doctor then joined us and reviewed the video. He then stated that he is not really sure why my right vocal cord is not moving or moving very little. Obviously, it is from damage from the radiation treatments, but not sure if it is muscle damage or nerve damage. So there are two options which he says can "help" strengthen my voice "some," but it will never be what it was. Not easy to hear when you rely on your voice for your job.

The first option, which he seemed to be leaning towards, is an in-office procedure where he injects a gel-like substance called Juvederm, into the right vocal cord to "bulk" it up to be able to meet the left cord in the middle and vibrate to make a sound. There are really no risks with this procedure except that it may not be "enough" depending on the damage to my cord....or the fact that my insurance does not cover this drug at all!! Also, your body absorbs the substance somewhere between 3-6 months. It "may" be enough to trigger the nerve to regenerate, but worse case, it just doesn't work. Then they would wait the 3-6 months and attempt option #2.

Option 2 is a surgical procedure, done in the OR, under conscious sedation. They make an incision in the neck, then in my voice box and create a small window in the cartilage. The doctor can then "pop" in small pieces of a GorTex-like substance in various sizes to plump up the cord to meet the other one. This is more permanent, but is not guaranteed to work and has more risks with it, like obstruction of airway because of swelling which he didn't expect to be an issue. And the fact that anesthesia is involved as well. While this is more permanent of an option, like I said there is no guarantee and it can be removed if not working or they can change the size of the implant if need be.

So now we play the waiting game. There are some choices to be made and I was not about to make them in the office yesterday, as he was ready to do the injection right then and there. I am waiting to see what the cost of the injection will be and we will go from there. I do not want to have surgery, but this seems to be the most logical choice, so I have to weigh all the possibilities. I'll sleep on it for a few and talk to my docs at Dana Farber and go from there.

For now, let's welcome 2011, on this historical day of 1.11.11, and hope that it is better for all of us!! This is going to be a great year, I can feel it!! And a memorable one as well as I turn the big 40 in March!! I used to think that was SOOOO old and God, I NEVER wanted to turn 40! But now, I look back at my past and all I have been through and I thank God that I am turning 40!!! It's just a number and for me, another milestone!!!

Happy New Year everyone!!