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