Long (overdue) update...

[SoCalGal]

The front of my refrigerator has my handwritten note – it says BE BRAVE.

It’s been 5 ½ years since April 2007, when I was diagnosed Stage 4. That diagnosis came 11 years after my initial diagnosis of early stage, node negative, her2+ breast cancer. I did not qualify for Herceptin in 1996, it was just coming out of clinical trial and was not yet approved for node negative, ER PR negative, early stage disease. I was 38 years old, had two young kids, and I, like many others, just focused on getting thru treatment and getting on with healing and life. I moved forward in life with confidence and focused on raising kids.

I’ve been fortunate in being able to keep this stage 4 disease (mostly) under control with Tykerb, Herceptin, Avastin and Zometa.

In April of this year, I went to NYC to participate in a clinical trial, which seemed at the time, extraordinary. It was my one nutty move in over sixteen years of fighting this stupid disease. I had a friend who encouraged me to fly to NY and join this tiny clinical trial.

After a bit of research, I decided that I was well enough to go off my normal treatment for (6) weeks to try this protocol, and live to tell that tale. Not very risky, or so I thought.

I wound up staying in NY for (14) weeks, away from my home, and all things that make me feel safe. At home, I go in for infusions every three weeks. It is a place like Cheers, where everyone knows my name.

In NYC, I had a daily visit to a clinic, for pills, a shot, and vitals. Everyday I saw terribly sick people, suffering people and dying people. It was an emotional nightmare for me to be immersed in the sickest of cancer world on a daily basis. I knew from common sense, that many people were just too sick to get cured or even helped. Yet people showed up with hearts full of hope.

It was a war zone for me. A place I did not belong, in a city that was not home.

In just (6) weeks my PET/CT showed 0.0 SUV activity throughout my body! It was too good to be true, too easy to be true, and although I felt somewhat happy, I remained EXTREMELY skeptical, saying over and over, cancer is a tricky business.

Despite my skeptical feelings, at the same time I allowed myself the feelings of being part of a cure, of history in the making! I began to remember what it was like to dream big dreams. To fully embrace my future, to feel part of a level playing field – same as all my other middle aged friends who lived life somewhat carefree, as if they would live to be 100!

I could see how narrow my dreams had become, I could see just how difficult my life at Cheers had been, infusions every three weeks for the past 5 ½ years. I thought about a cancer cure, and about how many businesses would cease to exist, how a simple cure would take down a billion dollar industry. I worried about my doctors and nurses, what would they do to recreate their careers, which are all focused on patients in treatment, especially stage 4 patients? In a weird way, I felt the weight of a cure, coming at me all at once. I was alone in NYC, in an enhanced state of fear and exhilaration.

AND THEN: my markers started to rise, and I started to worry. What I didn’t anticipate or fully appreciate was that at the end of (14) weeks, I experienced a bunch of progression, and the SUV’s on the PET/CT jumped higher than ever PLUS now I had some new spots. It made sense to me that at zero SUV activity I would have a “cancer reset” to where I was when first diagnosed stage 4, five years ago. It never occurred to me that my otherwise slow grow disease could morph into fast grow! I felt shocked and stupid. I thought myself an expert at my own disease, but somehow missed this memo.

I have been unable to post about my own experience until today – just feeling so depressed and scared and overwhelmed. Pre-New York, my life had this false sense of being “under control”. I had a rhythm, a plan, I could do it! Post New York, damn disease is on the move and I am in waiting mode…waiting to see if being back on Herceptin – Avastin – Zometa (without Tykerb) will curb the crazy dividing cells or do I need to get on TDM1 or can I even GET on Tdm1, pertuzamab and so on and so forth. A freaking nightmare of obsessive thoughts, fears, chitter-chatter.

AND I cannot seem to get along with Tykerb. It had me spending (3) days in hydration last week, doctor’s trying to pump back what Tykerb poops out: sodium, potassium and HOPE.

Often checking on the board, I see that some long time sisters have passed or are passing. It creates anxiety for me. This was a place to get calm, get connected. I am paralyzed to post, to chime in any real or meaningful way - I am so disconnected from myself.

Today I am trying hard to suck it up – chin up – to get focused on the road ahead. Get help, post SOMETHING, anything, get back into the habit of community, connection, reach out, move forward, SURVIVE, thrive, BE BRAVE.

I do remember what it was like 5 ½ years ago when I was told I had metastatic disease. While I may not be feeling calm or soothed, while I am feeling more disconnected from myself and the world than ever before, I hope that perhaps someone else who was just diagnosed stage 4 could benefit from my story.

I have no answers, and my markers are not exactly going down, while I feel I am going down at the same time I feel I am still fine. And while I don’t know how it’s going to be okay, my history shows me that somehow it will be okay. BE BRAVE.