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Thursday, March 14, 2013

Surviving Small Cell Cervical Cancer - The Journey Continues!

Surviving Small Cell Cervical Cancer - The Journey Continues!

It has been awhile since I last posted an article having to do with my journey through "cancerland" and my survival of Small Cell Cervical Cancer. It has been a bumpy road, but never a dull moment. My hope is that anyone reading this will find the information laid out here in this article, helpful and supportive and any woman facing this diagnosis will find hope and a place to walk this journey with others who have been where she is going. So much has happened; it has been a truly remarkable journey so far.
Flash back to November 2008. I had found my partner in crime and we had found a way to help women you had been diagnosed with SCCC. There was no information on the web at that time, and we were so happy to have put something together were women could find resources, but more importantly, others sharing this connection. I was personally told that I would never find or meet another living soul diagnosed with SCCC, as it is so rare and the prognosis is so poor. Yet, by November of 2008, we had connected with more than 16 women and/or their families who had been diagnosed with this disease. Mel and I also found out something about ourselves; we were deeply connected to each of these people and could not let them go. The emails were daily and plenty to keep in touch with each other and the members. It was getting harder and harder to keep up, but we were managing. Finally Mel came up with the idea to open Facebook pages of our own and that way we could keep up every day, real time connections with our members. From there we quickly grew. We also suffered our first losses within a year. Instead of deterring us, it made our resolve even stronger. Although broken hearted, we kept it going.
During this time of growth, I was having an issue of my own. My cancer had come back! In January 2009, I was re-diagnosed with Small Cell. It had spread to my right ovary, my peritoneum, and there was a tumor inside the opening of my vagina, which they suspected may actually be in my bladder and bowl. Not a good sign. There was also a hotspot in my inner thigh muscle, but they weren't sure what that was. I was facing another round with this stupid cancer and not at all happy. But this time I wasn't alone. I had Mel... and all the others as well. But I was reluctant to share this information as I wanted to give hope, not scare the hell out of women who were newly cancer free, or going through treatment. I worried how it would affect Mel, but she was a trooper. Mostly I was worried as it had already devastated us financially and pulled the "safety rug' out from under my children. Could we take much more? They told me the first time around, that if it came back they could not save me, merely prolong my life. I had a decision to make; treatment or prepare to go HOME. I had so much outpouring of support from my family and friends, but the biggest game changer came from the women in this group that I had grown so close to, even if only knowing them virtually. They supported me 100% and I think we all held our breath, while I made the decision to go ahead with more treatment, then surgery.
Flash forward to December 2012; You can guess the outcome of my treatment with the recurrence as I am here today, writing this article, 3 and 1/2 years cancer free from the end of treatment! I beat it again. It was hard on the family and finances. The children are much older. The stress and worry have come out in many ugly ways over the years, but as a family, we are doing well today. Every day it gets better. Financially it has been horrible; but again we made it through and many lessons have been learned. This too gets better all the time. We will survive. The most amazing aspect of this journey, besides beating something twice they told me I probably wouldn't beat once, is all the amazing women I have met along the way and all the fabulous work these women have done to spread awareness, raise funds for research and help grow this group.
As our numbers continued to grow on Facebook, it soon became a topic of our discussions what the next step would be. One of our strongest, most devoted women in the group, created what is today, our main private support group for women diagnosed with Small and also Large Cell Cervical Cancer. Through the presence on the web, many women have found us. Today our numbers are more than 90 women surviving and/or fighting as well as about equal that number in supporters. We also have information for the public to help spread awareness.. This was the key source for reaching out to an organizer at MD Anderson Cancer Center in Texas and getting their backing to start a fund for research. Our group has become a Model for the use of Social Media to gather the much needed information on patients when looking to do research on rare tumors such as ours. Before this, there was no way to do any type of research and our group, along with MD Anderson, are making medical history. But the most amazing thing I have been a part of was when 20 of our "sisters" met for the first time in Vegas and were able to take our virtual love and support to a whole new level, bringing the resolve of the group to much higher heights.
It has truly been a journey of unexplainable joys and triumphs. One, had I never been given this diagnosis, I would have never had the honor of taking. I wouldn't trade this for the world. There have been terrible losses of phenomenal women whose walk took them home and from our world. I know they are standing behind us each step of the way. They will never really leave us and have become who we are and who our future members will be as well. My physical and emotional self has changed forever. Some for the better and some not! It is a work in progress every day. I am grateful to be here and take on this challenge.
I truly hope that any women finding themselves with the diagnosis of Small or Large Cell Cervical Cancer, find this article. I have been told on a few occasions that my last two posts, brought some women to our group and gave comfort to fight this beast, knowing there was a light at the end. Knowing there is survival. They said I would never find another living soul with this diagnosis... they were wrong!
"I will be a positive force while on this earth".