A personal breast cancer journey

I never saw it coming.

Mammograms had been difficult to read, due to very fibrocystic breast tissue, but always ‘normal’. There were no ‘lumps’. But the technician came back in and said that they’d gone out to the waiting room to get my husband. That’s when my stomach lurched and I think all the blood drained out of the bottom of my feet, going down into the center of the earth. I didn’t feel dizzy, just completely numb.

This was the beginning salvo of a almost two year journey through advanced, Stage IIIa, lobular carcinoma - from chemo to surgery to radiation to more surgery and on toward survivorship.

June 27, 2008 marked my fifth anniversary out of treatment, and my sixth since diagnosis. I’m healthy and cancer-free.

If I’d stayed in Reno and done what I was told to do, I probably wouldn’t be sitting here writing this now. That’s why I am a cancer advocate for change in the way cancer, and breast cancer specifically is treated in hometowns across the country.

If you or somebody you love has breast cancer, I want to help arm you with information that you can use to fight your best battle.

If you don’t have breast cancer, I want to leave some thoughts with you that you can use to help others or yourself should the unthinkable happen.

Throughout the month of October, I will post bits and pieces here - of my own story, educational materials, differing opinions, stories about others who have made the journey and some of those who didn’t make it.

As an advocate and mentor, I’ve seen the look that must of been on my face on many other faces over the past several years. I’ve heard the fear in voices, and a lot of tears. I’ve raised money to get women to where they needed to be to get the best treatment, been a shoulder to cry on, a nurse, a fighter, a critic - but most of all I’ve been angry. Angry at a broken health care ‘system’ that through it’s very brokeness witholds not only treatment but the Standard of Care ‘right’ treatment in towns, cities and communities all across this country.  You can live in a medium size city and still not receive the current Standard of Care. You can live in a state, that unbelievably, has no accredited surgical oncologist in practice in the entire state.

I’ve seen the lousy care and I’ve seen the very best care. I know the difference. The best should be available to all, because you really don’t want to see what the lousy care looks like when it’s one of you or yours. I’m not talking about the results of the reconstructive ‘boob job’ - I’m talking about lives.

Since I was diagnosed, I have lost five woman that I cared about. I had to quit going to my breast cancer support group, because I could no longer deal with getting close to women only to see them die a few years later.

You’ll see a lot of informative material in here from the University of Texas, MD Anderson Cancer Center in Houston, Texas. That’s where I was fortunate enough to be able to go for my second opinion and all of my treatment. They literally saved my life, as you’ll hear. That’s where all of my cancer research dollars go, since they are the best of the best of the best.

I hope that you will join me, and become better informed about breast cancer, understanding that it is not a death sentence, especially if treated in a timely manner and with due diligence at a comprehensive cancer center.

-maven