How are you?

How are you can sometimes be a loaded question. Yes I have medical issues.  I am a wife, mother of two grown children, have a large dog, was in the US Navy, like to travel and started painting again.
I  have Cowden Syndrome. Cowden Syndrome is a  rare disease.

The short version of Cowdens Syndrome is I have a mutation in the PTEN gene. The mutation mean having  higher  chance of getting different kinds of cancers.  More on that later.

My thyroid issues started in the late 70’s when a  necklace would not fit. After many tests I had part of my thyroid removed. My thyroid problems continued during pregnancy. Over the years I had parts of my thyroid removed at least three times. Currently I have nodules on my thyroid, take thyroid medicine and am followed yearly.

I have AVM  of the hip and pelvis. Issues started while pregnant. My AVM is the cause of my heart failure.

At 42 I was late getting my first mammogram. When everything thing was over I had early stage breast cancer. Because of radiation to the breast I have Cowden related skin problems.

I have colon cancer in my family and was the last sibling to get a colonoscopy. Life went on, I was having symptoms. But ended up in the emergency room with terrible back pain. After a week in the hospital, I had a blood infection and colon cancer. Dr’s thought it was stage 4 but it ended up stage 3C.

Currently my thyroid tests are good and I have an appointment in Dec of 2013. Tomorrow I have my MRI for the colon and meet a new doctor to go over the results. Vascular surgeon appointment at the end of the month to schedule a procedure. GI doctor is March my birthday month. Late March, early April I have my yearly colonoscopy. My colonoscopies come with pictures of polyps (last one had 32 polyps). Mammogram is scheduled in March sometime too.

This is just a piece of life for me. I am just getting started at blogging. So watch me learn to blog and you can see What’s up Cowden with me.

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17 Comments

  1. Hi Tami! I found your blog on Beating Cowden’s and Heather also said to look this way. I am a librarian that lives in Northwest Indiana and I have Cowden’s also. I had the bits and pieces of problems & my gastro doc finally convinced me to find out what’s going on with genetic testing. 20/20 hindsight. I now know that I showed signs from high school age — in band, getting fitted for hats & the comment “Wow you’ve got a big head.” Thyroid cancer, uterine fibroids, ovarian cysts and 100’s of colon polyps. No breast cancer — yet. You’re not alone! I will follow your posts and comment. Please feel free to email me @ rzeprace at netnitco dot net. Take care!

  2. Hi, my name is Jill….i , too, am in the same boat with you all.Blogging is a wonderful outlet. I felt so alone when I first found out and then I found Heather. I’m in Georgia, but I post on my blog sometimes 2-3 times a day. Check my blog out. I’m following you now. can’t wait to read more!

  3. Glad Heather found your blog! I write about myself, my husband and my mom.of course my puppydog! We have had several long, hard years…but we are still here. I blog about everything. Glad to meet you and look forward to getting to know you!….Jill

  4. Pingback: Nominated for the Hug Award, Thank Martha for thinking of us | Two Rights Attempting To Make A Left!

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