Friday, October 23, 2015

TJ's Story

Ten years ago this January, I was diagnosed with Adnoid Cystic Carcinoma in the minor salivary gland on the roof of my mouth. Although it was worse than hoped, I only lost half the hard and soft palette. I was 27 years old, married, with two young girls.

I did 30 days of radiation after I healed from surgery, and it was the worst thing EVER! I really fear nothing after going through it. The damage left seemed irreparable. I was pronounced cured, but my cancer had a 98% chance of returning within ten to fifteen years.

I felt like I was waiting to die... Like a countdown.... It took five years for me to physically return to my new normal and to mentally pull my head out of my ass.

At the same time, I began having leg pain which was quickly diagnosed as a hemangioma or blood tumor in my right sacral strut by the University of Iowa, who also performed a procedure that only caused nerve damage and no benefit. U of I wanted to perform the procedure again, which I declined, and I stopped going there.

In August 2014 (3 years later), I returned to Dr. Deming, my radiation doctor, after being told radiation may help my hemangioma pain. After doing a biopsy, it was discovered that it was actually my cancer returned.  Upon further study, due to the slow growth of my type of cancer, it's now believed that it's been there the whole time. What was the size of the tip of my thumb was now the size of my fist! Surgery was scheduled for Dec 15th, last year, to remove what could be removed without damaging nerves.

A scan was performed to ensure it had not spread to other parts of the body. As my luck was going, surgery was canceled due to it having spread to my spine, lung, rib, and possible lymph nodes. Radiation was scheduled asap!

Although radiation is typically ineffective against this type of cancer, it was all I had. Within a week I was back to walking on my own, rib pain that had gone misdiagnosed went away! A follow up scan in April showed the spot in my lung had doubled in size but the spine and hip had been reduced to half its size. I still had pain but things were so much better.

I started a chemo in February or March, it's nothing heavy, but it's to protect my bones from further damage. I do it monthly and the biggest side effect seems to be fatigue.

I had my latest scan on Tuesday and got the results today. I'm now 36; a single father raising two amazing teenage girls. A year and a half ago they gave me three to five years to live. I went on disability in August to spend more time with my kids and because the fatigue was getting to be too much. I was really feeling like this was it and really just preparing to move past this life and looking at how I leave my loved ones.

The results today showed that the spot in my lung has gotten larger. It has never been treated and is only the size of the tip of my pinky. The other two areas that were treated with radiation in December 2014, the spine and hip, were now almost unrecognizable as it was there was very little uptake and size wise it was hard to say, but it's gonna be awhile before they are threatening my life or even lifestyle much more than they currently are.

So I sit here assessing my life and I'm wondering if I haven't done it to myself again, although I'm more positive about my life, am I waiting to die again? Should I try to go back to work? Is the fatigue depression?

This can be so mentally challenging! It's so hard to just live your life it's everywhere! I have amazing family and friends that support me, but as we know we end up counseling our loved ones instead of getting it for ourselves.

My doctor has a group called Above And Beyond Cancer. They take a group of survivors every year on a trip. In the past, they have climbed Mount Everest. They just got back from Nepal doing work helping survivors of the earthquake and volunteering at the hospital and they are planning another trip soon back to Nepal.  He has asked for years that I go.

I think now I'm ready.

 by TJ Smith

Wednesday, October 21, 2015

Living Life: Ron Rock Part Three

Ron and Sean talk about life with cancer and about what life is like as a laryngectomee.

Camera: Sean Z Smith
Editor: A. F. Litt


"Sweet Moments"

"Back To Earth (Instrumental)" by Lisa Germano
Licensed under a Attribution-NonCommercial 3.0 International License. Based on a work at

"Trodden" by Taylor Howard

"25th Anniversary Score"

"Sound In Calling" by Taylor Howard

Sunday, October 11, 2015

Without a Voice: Ron Rock Part Two

Ron and Sean discuss life without a voice after surgery, and the challenges of being understood when speaking with a prosthesis.

Sean Z Smith

A. F. Litt


"Sweet Moments"

"Derek's Story"

"Sound In Calling" by Taylor Howard

Friday, October 9, 2015

Lucy's Story

I used to do a lot of singing and got to the point where I couldn't hit notes I used to be able to hit. I also worked on the telephones and it got to the point my voice kept breaking and I felt like I had a frog in it and needed to clear it.

After bumping into an old friend and her commenting on my voice and how bad it sounded, I decided to go to the doctor. I was told I had laryngitis and to rest my voice for 2 weeks. In them 2 weeks, I read a story in a magazine about throat cancer and I knew as soon as I read it I had cancer.

I went back to the doctors and tried to tell him but his response was, "you are only 25 there is no chance it's throat cancer but I will do the checks to put your mind at rest."

After having a camera down my throat and a biopsy, I was diagnosed with cancer of the larynx. I had 6 weeks of radiotherapy and was told they could no longer see the cancer. But only a few months later, I started having problems again.

I was violently sick all day and had to phone the hospital as it has hurt my throat. I was told it could be related to the cancer and to speak to my special nurse. I felt better the next day so I left it, but I started to get earache.

About 5 weeks later I had another biopsy. I was told the cancer had returned and was more aggressive. I was told I needed an operation in a couple of weeks. I begged them to try laser first, as I really didn't want a Laryngectomy, but unfortunately it was too aggressive for laser.

I had my Laryngectomy February 1, 2012 and since then I have had a little boy, who is 13 months old.
----Lucy Lodge

Tuesday, October 6, 2015

Elayna's Story

I was thirty-one when I first lost my voice. I whispered for over a year and a half, from October of 2011 to April of 2012. I was diagnosed with Chronic Laryngitis and was treated with two rounds of steroids and four rounds of antibiotics. After my voice did not return I was referred to a Nose, Ear, and Throat Specialist for further examination. 
By September of 2012, I had a Micro-Laryngoscopy to strip and burn the true vocal cords and the Larynx. I had abnormal growths on both my vocal cords and my Larynx that had been pinned open for months by them and was restricting my ability to speak and project any type of sound. 
After, my results were negative from all the biopsies that had been taken.  My doctors followed me with check-ups to monitor any changes in my voice after I was put on voice rest for three weeks. 
Six months later I would have a second Micro-Laryngoscopy and Biopsies for more growths that had developed within my Larynx and true vocal cords again. I woke up from the second surgery with a high pitch ear ringing that I still hear every day and all day long. This time I was diagnosed with Squamous Cell Carcinoma Stage two on the larynx and True Vocal Cords in April of 2013. 
I was thirty-two years old at the time and a full-time mother, college student, and a server. My Mother moved up here from Raleigh, NC to help my family take care of my kids and me during my battle with cancer.
I would have seven weeks of radiation, five times a week, from July of 2013 to August of 2013. The day I went in to get fitted for the mask I was alone and thought, "this is no big deal." I told my husband there was no need for anyone to accompany me. I had a complete emotional meltdown while I was being fitted for the mask. 
The mask isn’t even bad. It is what the mask represented for me. I couldn’t run or hide. This was real and I was going to have to deal with it. 
After the first three visits, my treatments went quicker and quicker. My last day of treatment was August 23, 2013 and I was really proud of myself when I received a certificate. I still have the mask as well.
October 16, 2013 was the last day I ever sang a song or heard the sound of my natural voice. I lost my voice and became pale and sick. I couldn’t hold down any fluid and when I saw my Radiation Doctor for a checkup she was extremely concerned for my well-being and referred me to the James Cancer Center. 
After being evaluated by the Cancer Team I was on the surgical table within four hours. I had a tumor that was suffocating my airway and, if My Radiation Doctor would not have sent me to the James Cancer Center, I may not be here today to share my story with you. I woke up with a tracheotomy and spent eight days in the James Cancer Center and Halloween.
Between October 2013 and November 2013 I would have several false positive biopsies from all the radiation treatments I received over the previous summer. The Medical Board at The James and my wonderful Doctor would not do a full Laryngectomy until he knew for sure I still had cancer. 
My Doctor and his team did everything they could within their power to save my Larynx and Vocal Cords during my horrific battle. My age was quite the shocker to the staff at the James Cancer Center and to most people I have spoken with about my specific type of cancer.
On November 21, 2013, I would have a seven hour surgery and have a full Laryngectomy with a skin flap and a one-way valve to voice and still have verbal communication. I woke up with a nasal feeding tube, five drains, sixty-two staples, and a permanent stoma. I spent eleven days at the James Cancer Center and, within my stay, I also spent Thanksgiving with them as well. 
The first five days was really rough I woke up with a pounding in my ears that is still present today along with the ear ringing that has been with me since 2013.
Since my surgery I have been cancer free and I have adapted to being a full Lary pretty well. I am working on my second degree with Psychology and Nursing and I am still a server and a bartender. I am hoping to one day work at a Cancer Unit helping other cancer patients’ with their specific cancer journeys.
I have good days and bad days but, for the most part I try to keep going and I don’t allow my Stoma to dictate or restrict how I live my life or enjoy it.

Elayna Bauer

Saturday, October 3, 2015

Sharing Our Stories: Ron Rock

An excerpt from Sean's conversation with Ron Rock, looking at the lifesaving power of one survivor reaching out to another...

Camera: Sean Z Smith
Editor: A. F. Litt


"Sweet Moments"

"Derek's Story"