Here we go!!!!

Cleveland Clinic called  today and nobody wanted to talk about a bill. Dr. S office called this morning. Her scheduler has an unmistakable voice.

English: Lagoon with statue, Cleveland Museum ...

English: Lagoon with statue, Cleveland Museum of Art, Cleveland, Ohio, USA. (Photo credit: Wikipedia)

She said my schedule will be mailed.

The procedure on my AVM is scheduled for March 15 with me coming into the hospital March 14 for blood work and then being admitted to the hospital.

Ya I know the AVM will grow back. Dr S reminded me  I’ll only feel better for a little while. Ya they say that every time.

Google 貼牌冰箱(Google Refrigerator)

Google 貼牌冰箱(Google Refrigerator) (Photo credit: Aray Chen)

After every CT I usually hope to see the pictures. My body, my pain so I should get to see what it really looks like. Well I changed my mind. This time she had CT pictures for a visual aide.  I Googled pelvis CT and say what a normal CT looks like. True it

helped to see why the pain has gotten this bad. But I wish I doctor Google would not have been there. Ya I have heard do not look at doctor Google, wish I would have listened.

The second call from Cleveland  Clinic was a person from the PTEN research. She said someone local wants to start a support group and would I be interested. Sure I was interested after I picked my jaw off of the floor.

I had been told support group meeting for people with hereditary  colon cancer. That group met a couple of times a year, 35 miles away and no one ever talked about Cowden’s Syndrome.

So I never attended that group. I told the researcher about the Cowden blogs I had found.

English: photo of someone wearing a Google NOO...

English: photo of someone wearing a Google NOOGLER hat. (Photo credit: Wikipedia)

Digestive Diseases did have an educational workshop I attended last spring. They talked about the high breast cancer risk for Cowden’s along with the updated screenings.

I currently see a breast specialist who spoke at the workshop. At that time I was waiting for a biopsy of thyroid nodules and talked with the thyroid surgeon who spoke.




  1. How exciting the support group! For me, it’s been super important in my healing to find support from the right people. Just when I think I find the right people I can trust and I connect with them – something happens and I see their true colors. 😦 But I have to admit that I am super excited and encouraged about the PTEN support group! I actually have connected with 2 more people from Twitter who have Cowden’s Syndrome too…plus one day I hope to connect with someone who has the same type of brain tumor that I do (with it being so rare and all).

    Good good luck with the procedure….I’m seeing my oncologist tomorrow actually. 🙂

      • How exciting would that be? Granted – not exciting that we have rare diseases, but exciting that you and I are raising awareness for Cowden’s Syndrome and that it’s not such an orphan disease after all. The thing that I’ve needed lately was support for the brain tumor – but other than that, those user support groups aren’t my cup of tea. I’ve found connecting with others (like you) via my blog and Twitter is the best support for me.

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