English: Blue Star

English: Blue Star (Photo credit: Wikipedia)

  The  blogs are helping put a face on having PTEN issues.   March is colon rectal cancer awareness month. In Medina we have a local free paper.

This paper has everything from local events to the best place to get a hamburger. I wrote a letter to the editor about getting a colonoscopy, my colon cancer and do not make the same mistakes I did.

The next day our superintendent of Schools contract was made public, perks, bonuses and all. My letter was not published.

I will try again next year. I’m glad for the blog because I posted the letter.

Blue Star Quilt

Blue Star Quilt (Photo credit: Adventures in Librarianship)

While in the hospital I was asked for blood to participate in another research study. My AVM is the cause of my heart failure.  While in Cleveland Clinic I saw the cardiac team.

The doctor on call does research. The Cowden cells will help her research of Arrhythmia. The Dr said after the blood is drawn that’s all they need from me.

I will not know if they used my blood or how the research came out. The nurse I worked with was very nice.

She gave me a hug after everything was finished. A tired doctor came with her and thanked me to.  The medical student I met was doing rounds with this team.

My Cure magazine came this week. Cure is a free publication for anyone effected by cancer. I have been getting it since 2002.    Cure is on-line at http://www.curetoday.com

 In the spring 2013 issue has an article about Risk management: Living in the past, present and future. Click on Genetic Risk. PTEN is listed.

 Hopefully a mutated PTEN gene will become more well-known.


…Hope… (Photo credit: ĐāżŦ {mostly absent})



  1. I have that same “hope” picture on my blog. I cannot believe your paper didn’t publish your letter. I say KEEP TRYING…absolutely! I was so petrified a few years ago when I got my diagnosis…but I knew right then I had to raise awareness and talk about what Cowden’s Syndrome even is.

    At the ER yesterday the doctor said, “I don’t know what Cowden’s Syndrome is”…and I said, “Don’t worry, not many people do.”

    But with the blogs, twitter, etc. we can continue to shout from the rooftops! Raise our voice to be heard. 🙂

    • I knew I liked the “hope” picture when I saw it just could not remember where I saw it. The Letter to the Editor not getting published just made me sad. I felt like I didn’t matter. But I have gotten lots of positive feedback from my colonoscopy blog post. So every little bit helps. I do remember what someone from the study said. If you ever needed them to talk to your doctors about Cowden’s Syndrome they would. Maybe that might help.

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