In lieu of favors, a donation has been made in honor of tonight's event to the Susan G Komen Foundation for Breast Cancer Research. Our officiant, (there named) has generously donated her fee to the same. We thank her for this kindness. 

~ A silver framed notice on the place card table at our wedding, June 19, 1999

I idly fingered the fabric of the hospital johnny, then gathered it in my hands to keep it from slipping down yet again. I felt exposed enough without literally being exposed.

I tried to focus on the book in my hands. My friend had never told me that she'd written it; I'd had to hear it from her husband. It is the incredible story of her life changing trip to Ethiopia, where she had worked as a medical aide at a mission.

It was a hell of a lot more appealing than the outdated issue of Good Housekeeping that seemed to be the only other option, but I had trouble focusing nonetheless. I just wanted to get this over with. 

My friend's book painted a vivid picture of unthinkable poverty. Of small infections that took lives because they were left unchecked. Of needles washed in cold water and constantly re-used, of the sick and dying crying for help at the gates of the mission, whose desperately limited resources made it impossible to help them all.

The contrast couldn't have been more stark.

I sat in one of the best cancer care and research hospitals in the world. I was waiting to be seen by pre-eminent experts in their fields with the best possible technology at their disposal.

I was glad to be the only one in the women’s only waiting room. As comforting as it was that Luau was just on the other side of the door, I needed to be alone.

I'm normally infuriatingly cavalier about my own well being. It takes me forever to go to a doctor. But for the past few weeks, I’d been fighting a feeling that this was going to be it. I was convinced this was the time that I'd see the doctor steeling herself to deliver the news - that this was the time that I'd have to start fighting for my life.

I fumbled through my handbag for a tissue and tried to wipe my eyes as the mammographer made her way over. "Ms. J?"

I did my best to smile.

"Just follow me, please. You know the drill, right?"

I nodded and followed silently behind. 

Yes, I know the drill .. Heave, smush, cringe, OW. Heave, smush, cringe, OW.

"God, that hurts," I said. "It never ceases to amaze me that this barbaric machine is still the only way to do this. How do they not have a laser or something by now?" My friend's book flashed through my head and I stopped in my tracks, embarrassed.

"Money, darlin," said the technician. "It's all about money." Indeed.

I shuffled out to the waiting room and took my seat again. Back to worrying the johnny, back to trying to read the words as they blurred together on the page.

"Mrs. J?" called a new voice - male. "Would you come with me please?"

I followed the doctor into a small office. "I don't see anything that would explain the pain," he said. "Though as I'm sure you know, pain isn't usually a sign of cancer." He handed me a form and asked that I bring it upstairs to my doctor.

The pain - not usually a sign of breast cancer. But when your history looks like mine, you tend to take 'usually' with a grain of salt. 

Four years ago, my doctor put me into this facility's high risk monitoring program. It wasn't exactly a stretch to get me in. My mother is a survivor - over five years now and going strong. Her mother - the grandmother I never got to meet - was not so lucky. I will never forget the stories from my youth. She was ashamed. She didn't want to tell anyone. And then it was too late. And so, I don't take anything for granted. When it hurts where it shouldn't hurt, I call. 

I went out to find Luau in the main waiting room and we made our way upstairs together. As we waited for the doctor, I lost it. Completely. I sobbed in the waiting room. "I just feel like every time I make it through one of these I'm using up a 'get out jail free' card. And what happens when I run out? One of these days I'll be all out of passes and then it'll be time. And damn it, I'll fight it and I'll win, but, but .. " I gasped for air as my throat closed in and choked the words. It wasn't me, It wasn't even remotely about me. "But my girls. My babies. I CANNOT have them face this."

And then I said it - the unthinkable. "What if I get the pass and they don't?" 

I wanted to run screaming from the building. My girls. Please God, not my girls. 

Luau put a firm hand on my shoulder. "I need you to hear me," he said. "I need you to listen." I did my best to turn to him, but I couldn't look him in the eye. My gene pool. I did this. And if God-forbid .. well, they'd have gotten it from me.

"Every month, every six months, every year, the technology improves. Every minute of research changes what the diagnosis means. So, yeah, maybe you are just getting passes. Maybe someday the outcome will be different. But by then, the treatment will be entirely different too. And if heaven forbid the girls ever have to face this, they will be looking at an entirely different ball game than what we think of now."

I couldn't hear him. He was right, but I wasn't ready.

The doctor called me in and examined me to within an inch of my life. She found nothing, but she wasn't satisfied. "The pain isn't usually indicative of cancer," she said. Usually. She ordered an ultrasound and sent me back downstairs.

"Me again," I joked with the receptionists in radiology. I made my way one more time to be prodded and poked. I held my breath, waiting.

"Looks clean, Mrs. J. I can't find a thing."

I texted Luau, who was holding his breath on the other side of the door. "I'm OK. It's all good. I love you." And then I cried. Again. 

Before our lives were all autism all the time, Luau and I dedicated nearly all of our charitable time, effort and money to two causes - breast cancer research and St Jude's Children's Hospital. But then our lives changed. Our time, our passion and our money all went one way. Gone were the days of the Two Day Walks and the kids' birthday parties dedicated to St Jude. The pink ribbons were long ago replaced by puzzle pieces and Autism Awareness ribbons. Necessity had shifted our priorities.

But as I sat there in the waiting room, I realized that it was time to shift the balance back, if just a little. Because the technology has to keep changing.

Until that moment, I had been playing a game of triage. Autism was more pressing, more immediate, more visible in my life. But I hadn't thought it through.

I can't care for my daughter or advocate for her rights as a human being if I'm not here. I can't create Inclusion Committees or speak to parents on back to school night if I'm not here. I can't love my child with everything I am if I'm not here. I can't speak up to help build tolerance and understanding and compassion if I'm not here. And for God's sake, I can't fight for her to live a fulfilling and joy-filled life if SHE'S not here. 

There's only so much that I can do. But I will do something. I'm not sure yet what form it will take. I just know that the scale tipped back just a little that day.

Because I can only sit out so long, clutching my get out of jail free card.

For information ~ 

Susan G Komen Foundation for Breast cancer Research

Avon Walk for Breast Cancer

St Jude Children's Research Hospital

Jess can be found at Diary of a Mom