I have wanted to do Guest Posts here for quite a while. And, with the blessing of Twitter (yes!) I have connected with a few people also living with Cowden’s Syndrome. I asked Debbie if she was interested in sharing her story and she graciously agreed. Please meet Debbie!
Greetings, Everyone! Heather asked me to write my story and this is where I freeze! So I’m looking inward to see who I am and compare it to my outward appearance of who I want you all to see. If you’ve never read about the Spoon Theory, please do so. I am a spoonie, still with a type-A personality; an extrovert; a leader; all personalities that really came out after high school. And so as I juggle to keep all my balls in the air, I am stealing spoons from anywhere I can get my hands on them. I am a spoon thief, but you can call me Debbie.
Two years ago, at age 47, I discovered that I had Cowden’s Syndrome through genetic testing and with help from a geneticist. Immediately prior to receiving my genetic test results, I had ¾ of my colon or large intestine removed. This partial collectomy was done upon my gastroenterologist’s advice that since I had hundreds of recurring polyps each year, a partial collectomy would lessen the real estate that the polyps could grow on. I saw the logic behind that and I felt that I could live “normally” with 1 foot of colon. And I have – my “normal” has changed a bit. My favorite foods are still within reach!
With the genetic test results that said I had a PTEN mutation and Cowden’s, I was relieved. Between 2005 and 2010, I had four operations and was seriously thinking that I was a mess! (By the way, I have all my operations, dates, doctor’s names on notes that I keep with me all the time. I could never remember all these details!)
2012 – partial collectomy
2010 – oophorectomy (2 softball-sized cysts, one on each ovary)
2007-hysterectomy (fibroids similar to being 14-weeks pregnant)
2006- carpel tunnel, left hand (with fluid-filled cysts throughout my arm)
2005- total thyroidectomy (multinodular goiter, grapefruit-sized & follicular
cancer, with damaged parathyroids thrown in)
2002- carpel tunnel, right hand (with some cysts)
I so totally believe in better living through science, but people really look at me strangely when I am in a restaurant for breakfast. Over the course of a day, I take some 20 pills to create this fine, delicate balance that is my body. What I take? That could be a whole other article!
I do balance my check ups and my primary doctor loves the challenge that I am to her. She helps me keep everything organized. My gastroenterologist has seen me every year for the past 14 years, patiently clipping all my polyps and patiently suggesting I ought to have genetic testing. I was in no hurry for genetic testing – I had no children. One of my new thyroid doctors did a very thorough check up so that electronic records could be created and then told me that her professor told her she would NEVER meet someone with Cowden’s Syndrome – it’s that rare. She was extremely anxious to tell him that she found someone with Cowden’s. She had me pegged even before the test results were back. Good job, Doctor!
So I think back to high school marching band when the band mothers were fitting us for uniforms and hats and when I finally had a hat that fit, the band mother said, “my, you have a large head.” Another a-ha moment from 30+ years ago.
I risk this is getting too lengthy so I will have to promise Heather that I will chime back in soon on the rest of my story. I am not Cowden’s. I am a wife, doggie-mommy of a high maintenance sheltie with cancer, daughter, daughter-in-law of a mother with dementia, and a librarian with a full-time job with wonderful benefits. But it all returns to me wanting to be “normal” and being able to do all those things that I want to do.
Social media and the internet has been a blessing to us rare souls! I’d love to talk to you! Follow me, @debbierzep, on Twitter and say hello!