My name is Jackie Herman and my NET Cancer story begins in May of 2008 when I visited the doctor because of discomfort in my stomach and diarrhea that lasted several weeks. The doctor initially thought that the cause may be H Pylori bacteria or something wrong with my gallbladder. Blood work was done and an ultrasound scheduled. A few days later I received a call saying that I did in fact have H Pylori bacteria in my stomach. I was given antibiotics and figuring this was the end of my issue I thought I should cancel the ultrasound appointment. However I never actually got around to cancelling the ultrasound appointment and on the day, "something" urged me to go so I did. This ultrasound revealed multiple "spots" on my liver that needed further investigation.
This appointment was the formal beginning of my journey and from that point onwards I went for several scans; CT, Ultrasound, Octreotide and an MRI. Months of waiting to see specialists and conducting these tests followed and in August/September of 2008 I was formally diagnosed with NeuroEndocrine Tumors of the Midgut (small intestines) with liver metastases (approx. 15 tumors varying in size from 1 to 5 cm). In October 2008 I underwent surgery to have the primary tumor in my intestines removed and 60% of my liver removed, which took care of approximately 10 tumors.
The months that followed at home were extremely challenging in terms of healing, pain management and trying to regain my strength and energy so that I could return to a "normal" life. I have my spouse Joe to thank for taking care of me 24-7 for months…..he cooked the most nutritious meals for me every single day, served them to me and did all the housework, laundry and anything else that needed doing all on his own. I truly believe that if it weren't for Joe and his healthy cooking and unwavering love, support and encouragement I wouldn't be in as good a condition as I am now. He still cooks me super healthy meals every day! Six months after surgery I began a slow return to work and by the end of that summer I began riding my bike to work again. It was so tough to get back into physical activity but I persevered and I truly believe it helped me heal. Fatigue was my greatest challenge and still is to this day but I work hard at remaining healthy and I plan on being here for a very long time.
I still have approximately five tumors on my liver, some of which have shrunk and all remain stable. I go for contrast ultrasounds twice a year and an MRI once a year. I receive an injection of Sandostatin once every 28 days. I see my Oncologist every six months and my Surgeon every four months. I eat healthy wholesome food and exercise as much as I can. (I can't ride my bike to work any longer because I've moved outside of Toronto but I am doing my best to incorporate physical activity into my life). I enjoy my family, friends and little "creatures", two Chihuahuas, Misty and Chico, as much as I can and I savour all the "important" things in life.
The one overriding thing this experience has taught me is that life is too short to worry about the small stuff. I do my best to live my life as happily as I can with as positive an attitude I can muster up. I have my days that are difficult, but overall, I'm doing extremely well and I plan to stay that way. I surround myself with people and things that make me happy. In reality, I am very lucky to be as healthy as I am today, despite having cancer, and that this cancer was found, diagnosed and treated within a relatively quick timeframe. There are many patients who have not been nearly as lucky as I have.
My advice to anyone facing the diagnosis of NET Cancer or any serious disease is to educate yourself. Read, read and read more until you can't find any more information on the subject and keep abreast of the latest and greatest as much as you can. Knowledge is power and unfortunately when it comes to health you have to be your own advocate….you can't rely solely on the doctors to make the right decisions for you! Eat healthy and be as active as possible to keep your immune system as strong as possible. Finally, THINK POSITIVE! You will make it through! The mind has amazing powers.
Awareness surrounding this disease needs to be increased as does research and access to treatments not currently available in Canada. I believe that NET Cancer patients are at a huge disadvantage in this country and feel this is unfair. We deserve the same opportunity as everyone else to live long and happy lives and the only way to bring the necessary change about is to voice our opinions and concerns in the right forum and actively work together to attain our common goals.
Jackie Herman
January 2011