“My Voice” by Heather Glass

Heather Glass - 'Survivor'

My story is different than most.  In fact, I hardly feel like a “survivor” at all – I don’t feel like I measure up to all the strong individuals who received their diagnosis, invasive and debilitating treatments, and maybe (hopefully) a good prognosis after all the life-prolonging damage has been done.  No, no… that’s not my story at all.

In my version of the survivor story, it starts with a morning belly-ache, along with other symptoms which refused to alert me to the inflamed appendix I battled with all day.  By midnight the pain was so bad, and I was finally in the local emergency room, and by 3 a.m. an emergency surgery was scheduled.  Four hours later, my appendix was removed and shipped off to a laboratory out of state.

It was during my post-op a week later that I found out my appendix had been harboring a deadly fugitive.  While many downplay the significance of a 1.5 cm Carcinoid tumor, my nurse practitioner and my surgeon agreed that I should see an oncologist.  Cancer?!  What?!

I had to wait about a week before I could see a specialist, and in that week I was utterly consumed.  As a victim of depressions, I was in one of the bleakest times of my life.  Almost all anecdotal information on the internet was negative and dire.  I saw one report showing a 50% survival rate for 5 years!  Folks who had massive chunks of their intestinal tract removed.  Patients whose doctors took the “wait and see… wait and see… wait and… SEE LOOK, IT’S IN YOUR BONES”, approach to this very strange cancer.  I didn’t want to have a primary tumor site that no doctor cared to find before it was too late.

When I finally saw the ‘Onc-Doc’, he didn’t want to do very much because of my age and because of the “small size of this very slow growing tumor”, and did little to reassure me that my research might have been overly negative.  I felt written off – Worst. Feeling. Ever.
He finally agreed to a CT and blood work, and I felt better knowing they showed nothing… but strangely he seemed to take me more seriously in subsequent visits.  He closely followed my tumor markers, and acted consciously of any slight elevation.  This alleviated the concern that I had a doctor able to monitor me, but also worried me as to why his attitude changed so much.  Had he found some not-so-anecdotal evidence that my case be taken more seriously?

Shortly before my 1 year “Cancerversary”, I moved to New Orleans, LA.  Coincidentally, a world-renown Carcinoid center is located about 10 miles from my home… and I decided to transfer my records to his office.  They took me in like a lost lamb, reminding me that they come across “30 year olds with liver metastases” more often than they’d like to… and no carcinoid case is too small!  Even though the evidence indicates that the small-ish tumor in my appendix might have been an isolated incident, I am still followed up with the same test regimen as every other patient.  Even better, I get the same concern and respect as every other patient – even the doctor’s home phone number for those “emergency questions”!

My survival chances are higher than anyone could ask for.  My chance of 10 year recurrence, however, is also statistically higher than I’d like.  While 5 years will mark the end of my strict follow-up regimen, it does not mean the end of worrying whether or not it’s back… wondering if every little symptom, every little tummy ache, every little flush in my cheeks means something…

This has been quite the emotional ordeal… and for a while there, I was not sure I could survive it.  But like other, more “legit” survivors, I AM!  Not only do I have a responsibility to follow up with my own care, but I have the responsibility to share my story – NO CANCER is INSIGNIFICANT!  More importantly, young adults are NOT immune – and all patients deserve the same respect from the health care industry, regardless of age, diagnosis, or apparent prognosis.  If I hadn’t been lucky enough to have acute appendicitis, my story 18 months later might have been much, much different.  My survivorship may be called incidental, coincidental, or accidental… but I am a survivor nonetheless!