Nailing down a cloud

We expected last week's test results to be a little more encouraging. They weren't.

Victor, my adored and adoring husband, still has a serious heart problem. That, on top of his ordinary, old, everyday cystic fibrosis.

Yeah, right. Living with CF for nearly 56 years is anything but ordinary. There are only 30 or so men in the world still alive with this awful disease that clogs lungs and causes infections that can kill.

But CF is a familiar monster. After almost 17 years together, I have grown accustomed to the loud buzz of the nebulizer that delivers his medications three times a day. I've learned to locate Victor in a crowded room by listening for his CF-influenced cough. And I know the dangers of the cold and flu season with their inherent possibilities of bringing in yet another lung infection.

That's when the heavy artillery comes out: IV antibiotics and home care. Only rarely has Victor been a patient at Duke Hospital, even though he spends a lot of time there. He's a physician and a professor of medicine in the Medical School, so his interest is professional. It doesn't hurt that he knows his away around a PIC line and can monitor his own health.

He knows the significance of his latest tests, too. He is acutely aware that his heart has not improved even after beta blockers and blood thinner. The combination of CF and weak heart muscles make him breathless even when he climbs the stairs to our bedroom at night. It scares the hell out of me. He has started to prepare me for his inevitable decline.

I claw and fight at it like a crazed cougar. I won't have it. I refuse to allow it. Victor is a miracle man and he has a few last minute miracles in his back pocket. Right? Then I dissolve into tears, hearing his voice in my head, "I'm not afraid to die, but I hate to leave you alone."

Last night, I woke up about 2 am and listened to him breathe. Tight, short little breaths that gradually get softer and softer, then grow louder again, a cycle that repeats again and again. he tells me he is out of breath during the day. It won't be long before he will need oxygen. And soon after that, he'll be staying home instead of going to his office, too winded to walk the path from the parking lot to his office at the hospital.

I snuggled up to him, feeling his warmth and he stirred, too. "Do you want me to cuddle to your back?" he asked, sleepily. No, I said. I want to smell you. "To smell me?" he repeated. Yeah, I want to breath deep and take in all the Victor essence I can possibly hold. I want to capture you in a bottle so that when you're gone I will still be able to feel your touch, your warmth, your Victor-smell.

It's like trying to nail a cloud to the ground, beautiful and tantalizingly elusive.

So how do I hold onto a memory that is so fresh today, yet that will vanish when he's gone? I wish I knew. Nails aren't working worth a damn.