July 5, 2012 – beatingcowdens

I don’t play tennis. Never have. I am not that quick, athletic or coordinated. But I have always wondered what it is like to be the tennis ball. Back and forth, back and forth. No real purpose, no one stops to look at it. They just quickly replace it when it goes out of play.

I am starting to feel a bit like a tennis ball these days.

I have gone through more doctors for Meghan and I in the last 12 months than I care to count. They are either interested in helping, but too confused to figure it out, or, worse, they are too lazy to try to figure out anything to do with a syndrome they have never heard of.

I can teach them the basics – if they would listen. PTEN is a tumor suppressor gene. Ours is broken. We make tumors. Especially in certain spots. When things are weird, look for them. Regularly screen for them with the same tests you order all the time. Just screen more often and before we have symptoms. That will help us live.

I have journal articles. I have my reports, and Meghan’s too.

I was told last year to get myself an oncologist to manage my case. The one close to home lasted only a few months. Irreconcilable differences. Maybe he had wax in his ears.

So I took a break from looking. The double mastectomy, the breast cancer, the hysterectomy – they took some time. Now, as I am healing from the hysterectomy I get a referral from my gyn oncologist to a general oncologist she knows very well.

I called his office. I faxed 39 pages of my test results and history. They called to say I needed someone else – he wasn’t right for me. No, I insisted. Dr. B said he was the doctor I needed. I faxed him and article from the Journal of Clinical Cancer