Yesterday was a first for me, I actually spoke at The State of Now/140 Character Conference in Des Moines on April 23rd. It lasted all day and featured speakers in ten minute segments. Cancer, Agriculture, Education, Business, Food, Authors, Tourism, Reflections and Synchronicity were some of the topics covered. My dearest friend whom I have known since the day we were born, Deb During Brown, organized the event. I hope that in the future you will all be able to attend one of the 140 Conferences, you will not be sorry. It is a life changing event. Each of the speakers had so much information and their stories were inspiring.
I spoke about how Social Media has helped me learn about Carcinoid Cancer and how Twitter and Facebook have become a great source of support for me. There is no local support groups for Carcinoid, it is such a rare form of cancer and little is known about it.
I had major surgery to remove 3/4 my stomach, 2 sections of my small intestines, right ovary, 19 lymph nodes, 2 tumors the size of a mans fist, one on the inside of my stomach and the other on the outside, then a radiofrequency procedure that burned part of my liver out since it had metastasized there. I was cut open from top to bottom, tubes coming out of my nose, IV's, drainage tubes coming out of my stomach, a catheter and staples running up and down my stomach. I was in the hospital for 8 days, 3 hours from home, alone and very depressed. My husband had to work and I told him to stay home because 3 hours was a long drive one way. I thought I was strong, but I became so depressed and home sick. Eight days later I was released from the hospital, told what kind of treatment I would have, which is a shot that I get in my hip every 21 days for the rest of my life called Sandostatin. No chemo, not a choice for this. Doctors told me to go home and live my life.
That is all I knew, what they had said, no information, no idea what my life was going to be like and how long I am going to be here on this planet. This is a rare cancer called Carcinoid they told me, little is known about it. I was asked if they could keep my tumors to study. I gave them permission.
So when I got home I did all the usual searches on the internet for what I could find out about Carcinoid. It was all medical information and some other sites with information, but I wanted real life experiences and to actually talk to people who had this. I felt all alone, only about 5 in 100,000 get this and I knew of no other person. I was already on Twitter and Facebook so decided to put it out there. My first tweet on Twitter was about Carcinoid. Before you know it I had people responding to me from other parts of the United States that had it or have family that have it. We started talking back and forth, I wasn't alone. There are others out there. These people became my friends, we supported each other, talked about our symptoms that we live with. If I am not feeling good and need someone to just talk to that really understands me then they are the ones. No other person can understand the strange things that go on in our body and emotions with this type of cancer, except another Carcinoid patient.
Soon one of them asked me if I was on Facebook and yes I was. She invited me to a group called Carcinoid Coffee Cafe, a private group with all Carcinoid people from all walks of life. This was so neat, we can talk about anything and everything, help each other with support and just be there. The group has grown since I started, there are more and more people being diagnosed with Carcinoid daily. Soon another group started in Iowa called Iowa Carcinoid Connection. We are only Iowan's, I am planning a get together for us sometime this spring or summer in a central location so we can meet. There is another group called Carcinoid Cancer Awareness.
I have so much to be thankful for with these groups, we all have become close, offering the support and education we need to live with this. Our normal is a new normal. No one is judged, we have become one.
I asked God to use me with this disease and I pray that I can be of some help to someone who might be as scared, alone and lost as I was in the beginning when I knew absolutely nothing about Carcinoid.
I am thankful for Social Media, it has become my best tool for living with Carcinoid.
