Nancy's Story - I Am Not Alone
By Nancy Cimprich
I am 5 weeks post surgery for a 6.4 cm GIST attached and sitting on top of my stomach.
As far as I know I had no symptoms. My GIST was discovered as a mass on a CT scan. In May I experienced idiopathic vocal cord paralysis. My ENT was not very aggressive about getting to the cause of the problem. Knowing that a primary cause of vocal cord paralysis is a malignancy, and because I work for a hospital, I saw an oncologist. He is a great doctor who really listened to me, took his time, and I think made decisions on intuition and my particular case, not just routine. He promised me we'd get to the bottom of my voice issue, or he'd find a doctor for me that could. He ordered labs and CTs from head to pelvis. (This infuriated my ENT who thought that that was completely unnecessary). But my ENT now sheepishly seems to admire my onc's decision.
At the time they could not tell from the CT if the mass was in my stomach or outside. An endoscopy was done by another great gastro doc. No sign of the tumor inside. He recommended an endoscopic ultra sound and fine needle biopsy at a larger hospital. Strangely they could not see the 6.4 mass with the EUS. I still don't quite understand that one.
My gastro doc then scheduled a biopsy that would be done with a needle through my rib cage. At that point I put the brakes on .... I wrote both my docs a very carefully worded email letting them know how much I respected and appreciated everything they had and hopefully would continue to do for me –- however, not from any lack of confidence, but for my own personal comfort, I wanted to seek a second opinion from a radiologist specialist at a cancer hospital and GIST center. (Mind you, no one had even mentioned the word GIST to me -- it was just the only thing I could find in my own internet research that would explain what they were seeing). Two independent radiologists at the cancer hospital confirmed that they believed it very likely to be a GIST and did not recommend biopsy as they were certain it had to come out regardless of the biopsy results. I kept both the original oncologist and gastro doc up to date on what I was discovering, and found that they would call or email me frequently, sometimes just to see how I was doing. They were wonderful and very understanding of my need to seek the second opinion and have some "control" of what was happening.
My surgery was scheduled just a few weeks later using a surgeon recommended to me independently by both the radiologist specialist and my gastro doc (who work at 2 entirely different hospitals than where the surgery was done!) I actually didn't have confirmation that it was a GIST until waking from the surgery. I now have in hand the pathology and surgical reports and I am preparing tomorrow to start with a new oncologist at yet another hospital (Fox Chase).
In all probability, my vocal cord paralysis has nothing to do with my GIST. I was tearfully "wrestling" with my situation as I drove down the road one day. I thanked God for leading me to find the GIST now, and not later before further growth and health problems... and then I asked Him for my voice back. Vocal cord paralysis does not recover 60% of the time, but after all, we had found the GIST because of the voice problem... couldn't I have it back now?
So here I am, just 3 months after my voice was lost. I've got a four inch tender scar on my belly, a somewhat smaller stomach, I'd like to believe not a single GIST cell in my body, anticipating probable adjuvant Gleevec because of a relatively high mitotic count, and my voice started coming back 10 days ago!
Through this community I have discovered there are many people on the same journey. I am not alone. Most are further along than I am. A few just starting. Some have horrible stories of how the journey began, and I know that they must be stronger than I am, as God must have known that I can barely hold on with what He's given me to carry. Most days in the car on the way to work I still cry.
But sometimes there is this amazing bitter sweet joy that overcomes me. The gift is that I can see the sunset, feel my heart beat, listen to my children laugh, watch a hummingbird fly, feel the sun on my face, even feel the tender pain of my incision, and appreciate it in a way that I never could before. There are days that the darkness of it all threatens to overtake me, and I must fight for the health of my mind and soul. I am saddened by the friends and family that seem to out of fear, or some other thing I don't quite understand, flee from me, or refuse to see the thing I carry on this new journey. They understand neither the weight nor the blessing, and I wonder if the loneliness and loss of these people in my life will be yet another thing I will be made to bear. But still, no matter what has been, no matter what will be, ... I breathe another breath and take yet another step, and am so very thankful for so very many things, not the least of which is hope.