Singing Like A Bluebird....

Alright, maybe not a bluebird. Alright, maybe not singing. But we "think" we hear more of a sound coming from my voice than before! That's a step in the right direction!!

So Monday was the day...the infamous "voice procedure." I didn't sleep very well Sunday night with the anticipation of this day looming over my head. What I should have done, was back in January when I first saw this doctor, and he suggested taking a stab at this procedure right then and there that day, was let him do it!! Cuz the anticipation and anxiety KILLS me!! That and the insurance company didn't want to pay for it.

Mom and Dad both went with me on Monday. Probably a good thing, because had I ever gone alone, I may have driven right past the hospital. We got there a little early and they took me right in. Good. Less time to think. Let's just do it. I explained my extreme anxiety and the speech pathologist that was helping with the procedure, politely smiled and said, "It won't be that bad." I then asked myself, "Yeah, sure, have YOU ever had this done to you?" I think that should be part of their medical education is to participate in the procedures that they perform on their patients. Anyone else agree??

Shirley, that's the speech pathologist, numbed my nasal passages for the scope and the back of my throat to begin the procedure. Then the doctor came in and said he had heard I was anxious, but that he had confidence in me and it would be over in no time. He explained again what he was going to do and we were off. Anyone real squeamish can skip the next part...

Dr. Saxon began with a topical numbing medication that he shot with a needle, up through the front of my neck, into my throat. It squirted this liquid into my throat and he asked me to cough, which spread it all over and almost instantly numbed the area. Shirley then guided the nasoscope up my nose and down my throat to give the doctor a view of my vocal cords. (And to think this used to make me gag and almost pass out?? Now I have a scope almost every time I go for a doctor's visit!) Dr. Saxon then took the needle, filled with a special gel-like substance, and now stuck this into the front of my neck and into my right vocal cord. Mom and Dad were both watching the screen and said they kept waiting for the needle to show up, but apparently it came from underneath and all you could see was the vocal cord "plumping" up. I knew nothing of this as my eyes were closed!

He pulled the needle out and had me make some sounds, then said he was half way done. Yikes! Another stick, here we go! Dad said I was moaning and it wasn't necessarily because I was in pain, although it was uncomfortable, I wouldn't say painful. I was concentrating on not coughing and choking and grabbing the doctor's hand and pushing it away! Another minute, and he was done!! It really wasn't as bad as I had anticipated. I wouldn't want to have it done every day, but now I know IF I have to have some adjustments or have it done a second time, I can do it and not pass out!

So there are really no restrictions for recovery...other than not to cough too forcefully or clear my throat too much. That's not to easy with a cold, but I am trying my best. I have more of a "raspy" voice now and people say they can hear a difference. The kids hear some difference, but not a lot louder than before. They say it can get hoarse for a few days until the swelling goes down, then hopefully, will get stronger as the days go on. I go back to Shirley in two weeks to learn some voice exercises and things I can do to prolong the life of this procedure. They can add more or do it again if we feel that it is helping.

We'll take it as another step forward and keep going. I'm still having a bit of a problem swallowing when I eat or drink, but I have to retrain my throat to work properly. Let's hope that gets better with time as well.

Maybe I'll see if they are taking auditions for the next Broadway show...or maybe I'll just enjoy the fact that I can actually talk to my children now and they can hear me!!

Strong....

It has been four weeks since I had my PET scan and got the all clear. I had a little "scare" this week with a little numbness in my tongue and a sore throat, but went in to see my doctor and all was ok. Unfortunately, it is really unknown what side effects I will feel long term as there are not too many of us that have been radiated as much as I have. My doctor is wonderful and said I have a "free pass" to come in and get checked whenever I feel something is not right. That makes me feel better and I hope as time goes on and things continue to go well, I will not panic over everything little twinge I may have.

We have also been fighting with my insurance company over covering my voice procedure and the injection that they want to do into my vocal cord. FINALLY, this week with Mom calling them every day (I can't talk, remember?), they have said that they will pay for the procedure itself but not the drug. I guess that's better than nothing! So after some scheduling issues on the doctor and his associates' parts, I have been scheduled for my injection on Monday, April 4th!! And to be honest....I am scared out of my mind!! But I have been through much worse and if this is FINALLY going to help me get more of a voice than I have had in over seven months, I will grin and bear it. Keep your fingers (and toes!) crossed it works!!!

I also have started Physical Therapy twice a week to loosen the strained muscle in my neck and shoulders. It is actually working and I am seeing some progress, although it is going to be a long, slow process before I get a lot of relief. At least I can sleep more than an hour at a time now!! And they sent me home with a neck (cervical) traction device to stretch out the muscles in my neck and takes pressure off my neck. Cameron thinks it is some type of medieval decapitation device! Kinda funny! He wants to know how much taller I will get using it!! And it he can grow taller, too!

Next weekend, Jen, Mom, Dad and I will be heading up to Vermont to attend a fundraiser for my cousins' Relay For Life Team. It is a Dance Benefit and Silent Auction to raise money for the American Cancer Society. Should be fun and I hope that by me being there, I can be an inspiration for those that are still fighting the fight.

I'll keep you posted on how the voice thing goes. It may not show too much success for a few weeks, so we'll see!!!

Until then, pray for the nice warm weather to HURRY up and get here!! I am sick of being cold!!!

A good friend shared a quote with me the other day and I want to pass it on...."You never know how strong you are until strong is the only choice you have."

A LONG Day with a HAPPY Ending!!

So today was my six month post-treatment PET scan. Mom came up last night to stay over since I had to be at Dana Farber at 7:15am for the injection for the scan, only to sit for an hour before the scan can be done. I was out of the scan by 9am. My appointment with the doctor was at 1:15pm. What to do?? What to do??

The entire Dana Farber facility has moved into the new Yawkey Building across the street from the old facility. We have watched this new building being built since my endeavor began last April. Everything except for the Nuclear Medicine Dept. and Radiation Dept. have moved into their new homes. So we began our day in the old Dana Building and then went to check out the new building after my scan.

It was quite confusing and strange to have everything in a new place, and as beautiful as the new building is, I am SO glad I don't have to spend a lot of time there! Mom and I tried to relax in the cafeteria and the lobby for a while before we headed upstairs to the 11th floor to wait for my appointment.

Doesn't it figure after such a long day already that my doc was running over an hour late with her appointments!! I have NEVER had to wait that long for her!! FINALLY we went in to the exam room about 2:15pm.

Mom and I were chatting and not even paying attention when Dr. Limaye poked her head around the corner and announced,"PET Negative!" THANK GOD!!! The scan was clear!! All the little things from the last scan that they were going to "watch" were gone!! Nothing there!!! All gone!!! CANCER-FREE!!!! We all cried and hugged!!

So now I can move on with the injection into my vocal cord and see if I can get some voice back. I also have to start some physical therapy for the stiffness and muscle tightening in my neck. I have another check-up in six weeks and if no issues, having two clean scans, she may wait six months to do another scan!!

Thank you to all of my family and friends for their generous thoughts and prayers during this difficult time. Someone up there is listening!!!

Two weeks from today is my 40th birthday.....Ugh, 40, you may think!?!? NO WAY!! I am THRILLED to be turning 40!!! This is the new beginning of the rest of my healthy life!!! 40 and FABULOUS!!!!

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 God...it'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!!

Dear Cancer.....See, I TOLD You I was STRONGER Than You!!

Well, our prayers have finally been answered! Looks like I am all clear!! Cancer-free!! Adios and don't EVER come back here!! Hit the road, Jack!! Bye, bye, bye!!

Got the report for my PET scan today and it looks good!! They said there was a lot of surgical scarring and radiation scarring on the right side of my neck, but all in all looks good! There was a question of whether or not my vocal cord on the right side was paralyzed, but they did a scope today and both the surgeon and radiation oncologist said it was clearly moving and not paralyzed. So I will have to go to voice therapy to try and strengthen that. Worse case scenario is surgery down the road to help fix it, but therapy may strengthen it on it's own.

So I have a LOT to be thankful for this Thanksgiving, more than usual! Thank you to everyone....family, friends, my team at Dana Farber...for helping through this terrible ordeal once again. I pray that three times is a charm and that I am done with this dreaded disease once and for all!! Now I KNOW I made the right choice to go to Dana Farber!

Happy Thanksgiving!!

Is It Christmas!?

Boy does it feel like Christmas morning!! Just went to the surgical oncologist who was going to check my vocal cords since I have had no improvement in my voice. And I was hoping to get the biopsy results from last week since I had yet to get a phone call.

Dr. Norris, the surgeon, walked into the room and says, "Well, I see we got some good news, huh?" I said, "What? The needle biopsy?" And he said, "Oopss....hope I was reading that right!" And he was!! Biopsy was negative!! No cancer!! YIPPEE!!!! And nothing else shows on CT scan or ultrasound. Final say will be the PET scan on November 24th, but they are not expecting to see anything and as of right now, I will NOT need surgery!! Thanks, Santa, for my early Christmas present!!

Dr. Norris did a scope of my vocal cords and said there was still some swelling and that they are a bit sluggish. They move like they should, which is good and means they were NOT paralyzed by the radiation. Wants to see me in a month to check them again and then will refer me to a voice therapist if needed.

I went down to the infusion floor where I had all of my chemotherapy and hydration to say hi to my nurse, Whitney. She gave me a big hug and said she has been thinking about me and wondering how I have been. She was such a HUGE part of my treatment and I am so thankful to have had such wonderful care at Dana Farber. I cannot tell you how amazing that place is and the people that work there, right down to the valets that park your car. I kid you not. AMAZING!!!

So for now, I will go about my AWESOME life and quietly whisper to my children that listen so attentively.....NOT!!! We are going to Vermont this weekend to visit my cousins and aunt and I am so looking forward to a weekend away without any worries!

Merry Christmas, Everyone!!
I hope Santa is as good to you as he has already been to me!!

I Thought It Was Autumn.....

It is October 1st and almost 80 degrees at 9am!! I thought it was Fall??? But I will take the warmer weather any day, although this humidity HAS to go!! We'll be complaining about the snow in no time!!

Well, my 2 weeks off with no appointments went by REALLY fast!! I had my appointment on Wednesday with my oncologist. They are still pretty concerned because I still have no voice. I guess I hadn't put that in previous posts. I lost my voice the beginning of August when we were in Maine and it hasn't come back since. The doctors did not expect me to lose it because my voice box or larynx was not being radiated, but said it could happen. So my oncologist did a scope of my vocal cords on Wednesday (my FAVORITE thing!). Actually, it wasn't so bad. And she said that there was quite a bit of swelling and "sluggishness" of my vocal cords. Hopefully, they just need some time to heal. She has me seeing the surgical oncologist on October 20th to see what he thinks as another opinion. Hopefully my voice comes back, or at least starts to, before then! Not easy to raise a 4 1/2 and a 6 1/2 year old with absolutely NO voice!!

I have another ultrasound on October 12th to check on that "pocket" of fluid that I had drained. They want to make sure that it has not filled up again. They will drain it again that day if it has.

So another couple of weeks off. I am enjoying being home from work and feeling pretty good. LOVE taking the kids to and from school and doing the "Mom" thing. I think kids like me being home and being able to take them or pick them up from school. It's weird, though, because I have never been home. The only times I have been out of work was after giving birth or when I have been sick. But I cannot lie. I LOVE being home, but am looking forward to returning to work to regain some "normalcy" in my life. Not too quickly, though....:-)

I hope everyone is enjoying this beautiful weather and looking forward to Fall. Although today is 80 degrees with tropical rain and wind! Very strange....guess it is New England and ANYTHING can happen!!!

Until next time......