My Carcinoid Cancer Story…..well how does one begin to write that!? I think If I start with “I was born….” you will hit the back button faster than green grass through a goose. So, let me start with who I am, why I am writing this blog and what I hope to achieve with it.
Who I am
My name is Ed and I’m inching up on my 50th birthday soon. I have a wife and a 5 year old son. My wife is my soul mate. I know it sounds corny in this day and age but, we met in High School, went to the prom and got married in 1987. Since then we have truly become “one”. My son is the love of my life and has seriously stolen my heart…but, I’m a mush anyway.
Why I am Writing this Blog
I have cancer, it’s true, but I deliberately left that out of the “who I am” section because it’s NOT who I am. It is a disease that I have and I plan to get rid of it and it does not define me.
So….I have cancer….that’s why I’m here sitting at this keyboard. My family’s happy life has just been hit with an atomic bomb and I’ve been given a number. The number is 5 to 10 yrs. if I’m lucky (barring a miracle cure). So, I am now forced to put my life’s energy into researching and looking for a possible cure for my cancer even though I have been told there is no cure. You should know, I still have hope and I am fighting. I will fight hard and I will not give up. If you have cancer, or any other disease, don’t give up. Fight for yourself and fight for your family. Life is precious and a gift from God and, although it might not seem that way now, I hope that I can help you be inspired and maybe win your fight as I hope to win my fight.
More About My Cancer Diagnosis
This is my best attempt at explaining what I have come to understand is the rare form of cancer I have. I am not a doctor so I may need to go back and revise this section later.
Carcinoids ~ I have Stage 4 Cancer which means that it has spread to other parts of my body. The cancer has spread and is in my gut, liver, lymph nodes, bones and possibly some other places.
Most cancers are carcinomas but I have what is called a Carcinoid. Most people are aware that Steve Jobs died of cancer but most people are unaware that the type of cancer he had was a carcinoid. Carcinoids can be aggressive, intermediate or slow growers. Typically they are slow growers but mine are intermediate. From what I have been told they are incurable and because they have metastasized to my lymph nodes and bones (think bone marrow) they cannot even be removed from my body.
Neuroendocrine Tumors – The tumors that I have are called neuroendocrine tumors. They typically originate somewhere in the gut although they aren’t sure where my cancer originated.
To be more particular, these tumors usually originate in the cells of your digestive tract that produce the hormones that make your digestive system work. This hormone is called serotonin and because of this, neuroendocrine tumors can cause a number of symptoms such as flushing and diarrhea. My tumors are not actively releasing any large amounts hormones so I do not suffer from these symptoms as bad as some other people. This is called carcinoid syndrome.
The Verdict ~ So that’s it in a nut shell and they’ve given me 5 to 10 years maximum unless there is some sort of miracle cure. I’ve been to a number of doctors and they’ve all given me a similar diagnosis. Don’t get me wrong, I fully trust them and have confidence in their ability but, I cannot accept this conclusion and I am praying that God will grant me more time. Which brings me to my next topic.
Maybe I Can Help ~ I am not a doctor but I’m a smart guy and I’m hoping to use my technical skills (I have a software engineering background) to search the web for information that may not be common knowledge. In doing so, I am hoping that I might find something that will either extend my life, rid me of the cancer or both. I plan to journal my efforts as a way of documenting what works and doesn’t work for me and my intent is to share the results with you. I hope you will find this blog useful and inspiring.
Update: I have an update to my story as of 8/15/2014 – Read More
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