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Colon cancer and Lynch syndrome.
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March 23, 2012 10:07 PM
Hi-- I just recently joined, but have been attending NCWA meetings since November, just weeks after being diagnosed wit colon cancer. Since then, I have had my entire colon removed and gone through four rounds of chemo.
I started a blog as a way to process my feelings and help a few others in my situation; I have a genetic syndrome that caused my cancer and cancer in half of the relatives in my dad's family. Since I had never even heard of Lynch Syndrome before my diagnosis in October, I have taken on a mission of spreading awareness about it. If I had known I had it, I would have received more intensive screenings and my cancer would almost certainly have been caught earlier.
Because Lynch syndrome causes multiple cancers, it is recommended for the entire colon to be removed, rather than just the tumor. This resulted in an ileostomy for me. My own father chose death over an ostomy when I was a teenager. So, in addition to raising awareness about Lynch syndrome, I am also working to help banish the stigma of ostomies. If my dad had known how easy it is to live with, he would still be alive today.
I have been writing my blog for a few months, but this past week, things are really starting to take off. Today, I was interviewed for an article in the NY Times. I gave my blog information and I am hoping that the address will be included in the article. I have also been in contact with a director with the United Ostomy Associations of America. It looks like I might get to be a speaker at their national convention and also could be involved with their fashion shows (I am also a fashion designer).
Until this week, my only readers were my own friends, but it looks like I am finally going to be able to get out there and get involved in spreading awareness about these important topics. The timing could only have been God's. My oncologist decided just this week to discontinue my chemo because I have developed a severe allergy to it. He is confident that I received enough to cure my cancer. My hands need some time to heal from chemo side effects before I can sew, and it will take a few weeks or months to build up the strength I lost through my illness, but I am ready to move on with my life.
I have been a stay at home mom for six years, but my son started preschool in January and I am getting ready to get back into working part time. I feel like God is specifically using my unique combination of health challenges and handing me a new career path that only I can take. I am hopeful that through me, God will save lives, and help people cope with the changes to their life brought on by Lynch Syndrome, cancer, and living with an ostomy.
I have gone through a lot in my brief 31 years, but I have always clung to Romans 8:28. I really do believe that God has a plan to do good in and through my life, through all things. Even things like cancer. I am starting to see that plan fall together. I was given a unique assortment of talents and allowed to go through a very difficult journey; only through this combination am I able to do the task that has been set before me. I can design clothing for ostomates because I am one. I can share about so many different facets of colon cancer because I have been through it.
It has been my writing goal to get a novel published, and I am not putting aside that hope, but I feel like my entry into the world of published authors is going to come from another avenue. There is so little information out there about Lynch syndrome, and so little understanding about ostomies. There is a need for information and I feel like I might just be the one to put it out there, whether through my blog or through a book.
So this is both a prayer and a praise. Praise for the sudden revelation of where I'm headed in this life, and prayer that I will be equal to the task set before me.
Here is a link to my blog:
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