I literally was given a very slim chance of surviving and at one point no option for surgery to remove it. I at the time was ready for what could happen, if I didn't live then I knew it was meant to be. I had everything in order. I on the other hand was going to fight like crazy to survive. I had no doubt in my head that I wasn't going to make it.
Finally the call came after more doctors looked at all my scans and said they would do exploratory surgery. Five long hours of surgery and every inch of my insides were checked for cancer. I had 19 lymph nodes removed that were affected, 2 sections of my small intestines, my right ovary, one large tumor on the outside of my stomach, part of my liver because it had spread to that also, 3/4 my stomach and a large tumor which was the primary was removed from inside my stomach. Truthfully I don't know how I am alive today if I hadn't had faith and believed I would be okay.
I had tubes coming out of my nose, mouth, IV's, catheter, drainage tubes and more. If I could have seen myself I don't know if I could of handled it. I was kept drugged most of the time because of the pain and I was cut open from top of my chest to below my belly button. Day six they started to remove some of the tubes, the doctors still did not know for sure what kind of cancer it was. I was asked if I would donate the tumors to the University of Iowa to study, signed papers and agreed to it. If I could be helped and others that is what I wanted. Finally a diagnosis, Carcinoid Cancer. I had never heard of it before. My only treatment would be an injection called Sandostatin. I will have to have this the rest of my life. It helps with the symptoms I would experience and stops new cancer cells from growing. It will not kill any old ones that are so small that might be left behind. Dr Howe, which I give all the credit for saving my life, told me he felt they got everything. He is a hero to me.
I was in Iowa City for 9 days. Finally able to go home. It was the best words I could have heard.
Little was told to me though how to deal with this kind of cancer because it is so rare. I had to learn most of it by myself online. I found many others on Twitter and Facebook who had this also, although the statistics are only 1 in 100,000 get this kind of cancer. We talk daily, we have formed communities and support groups on Facebook and Twitter. I have learned so much from others who have this. I don't feel alone like I did when I came home.
My oncologist in Iowa City is Dr O'Dorisio. He is one of the main Carcinoid specialists in the United States. I could not be in better hands. I can get my injections in Mason City Iowa every 4 weeks but go to Iowa City 2 times a year to meet with both doctors and to have CT scans and special labs done. So far so good, am I cancer free. I was given a second chance to relive my life. I have learned to love more, play more, feel more and enjoy more of my life. There will always be problems but I know that I can trust God to help me. There is always the chance Carcinoid could come back, but in my mind I don't feel that will happen. Every day I wake I up I am thankful that I have another day on this planet to make a difference.
The ribbon for Carcinoid Cancer is zebra. Zebras are hard to train, carcinoid is hard to diagnose and treat. We are a rare bunch.
If you want to learn more about Carcinoid you can visit the website www.carcinoid.org.
Thoughts always with you. We both have lived through our issues - I haven't had to endure anything as invasive as your surgeries. Stay happy & healthy!
ReplyDeleteGreat testimony, Denise. And just think, many others are now profiting from your experience.
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