Jeni's Story - There is Life After Diagnosis
by Jennifer Bullard
I believe it's time for me to tell my story. Unlike a majority of “GISTers”, I am not over 40. As a matter of fact, I am not over 30. “How rare and how young” everyone said. “What a shame.” They whispered. “Her life had just begun” my parents cried. Well guess what? When I was diagnosed with a rare and deadly cancer at 26 years old, I believed them. I agreed with all those statements.
Then, I met a few of the GISTers in the age groups that GIST is “supposed” to attack. That’s when I learned that it doesn’t matter if you're 20 or 80, you still have a life to live and a will to live it.
This is how it all began:
On February 5th 2005, I had a belly ache, right below the belly button. The ache increased throughout the day, by the afternoon I had self-diagnosed it as appendicitis. I went to my family doctor, who agreed with this diagnosis and sent me to the Emergency room. The Emergency room physician and on call surgeon did a CT and ran some labs. They concluded that although pain in the belly button is uncommon for appendicitis, it must be.
Surgery was decided as my best option. My husband was told it would take 45 minutes and 3 little incisions. Well, 3 hours and one huge incision from hip to hip later, he was told they found a tumor on my small intestine! My appendix was fine, but they removed it anyway. We were told "Don’t worry to much about that tumor, most tumors located in that area are benign, but we will send it to pathology just to be sure." I went home from the hospital two days later with no fear and a lot of prescription pain medication.
On February 14th 2005 I was readmitted to the emergency room for another surgery, this time an abdominal wall abscess. My wound was left open to heal with wet to dry dressings. I stayed in the hospital two more days and was sent home with more prescription pain medicine and a whole arsenal of antibiotics. Then, on a follow-up visit to my surgeon, I begged him to take me off of the antibiotics as they were making me too sick to eat. He said “are you alone?” Of course I wasn’t, I couldn’t drive yet. So my mother, myself, and my three year old son Nicholas, went to the surgeon's office. This is where on February 22nd, 2005 I was diagnosed with Gastrointestinal Stromal Tumor (GIST). I was told that with a tumor that was 7.5cm and located on the small intestine, my outlook was not great. Prognosis was approximately 18 months to live.... He suggested I speak to someone at my church, get my affairs in order with my husband and two babies, and see an oncologist. I was in shock at first, then I was mad! I was mad at me, I was mad at him, I was mad at God, I was just plain mad!
I remember laying on my couch unable to do much for myself and my sons (5 & 3 at the time) asking a million questions I didn't want to answer. I remember my friends being afraid to visit and call for fear they would break down and cause me to be sad.
Then -- my saving grace -- I found Marina, Bev, LeeAnn South, Dr. Mel and Julie. These people plus many more that I haven’t named brought me from my darkest moment and fed me information: lifesaving information. They gave me hope, inspiration, and a place to feel everything I was keeping from my family. The GSI list serve was a place I could be mad, sad, scared, happy, and I could even feel sorry for myself. They were strong for me when I needed to be strong for everyone else. Although, I am young, at my house I am “the mom” and moms don’t get sick days.
I found an oncologist and sarcoma board at the University of Michigan. They concluded that although I was an intermediate risk, I should be around a few more years. Another surgery was scheduled on June 7th 2005 to obtain margins from the primary resection. Unfortunately the surgeons could not find the original resection site and no clear margins could be obtained. I was offered an adjunct Gleevec trial. After careful consideration, I decided against it and am now, almost exactly 24 months later, still "no evidence of disease" (NED). I will continue my scans and keep a close watch on my health. I will also continue to be on the welcome committee for GSI, in hopes I can bring someone else out of their darkest moment.
I have taken back control of my life. Though NED, I store all of the information on treatment options incase I need them. I go to the oncologist and the family practitioner regularly and live a fairly normal, uninterrupted life. I work a part-time job and re-joined my bowling league.
I am telling you this because I want you to know that there is life after diagnosis. I have gone from a healthy, active, young mother to a tired, sick woman on anti-depressants and anti-anxiety medication. Then back to a healthy active young mother! A roller coaster ride for sure, but as of right now I am living on top of the hill.
When I write a "welcome" letter to a GSI newcomer, I often say: "Welcome to GSI from all of us. Try to stay on top of the hill, but if you can't please remember, we will all stay with you all the way to the bottom and we will help you back up."
Jennifer Bullard, 28 years old.
Wife to Heath,
Mother to Nathanial, 7
and Nicholas, 5.
(24 months and counting)