Tuesday, December 29, 2009

In the Shadow of the Moon

There’s dying from cancer and there’s living with cancer. There are two worlds, or more specifically, there are two sides of a single moon. It is out there, orbiting, changing our tides, causing domestic battles and inspiring young children. This moon lights my night. It darkens all my days.

Cancer is that strong: planetary, cold and omnipresent. I see its reflection in my morning coffee, in the face of my daughter, in the voice of my husband. Cancer exerts its own pull. These two sides, the living and the dying are in constant concert. They dance so closely you cannot tell one step from the other. They sway across the sky of my life, locked together, locking me in their pull.

Willa, today, is living with cancer. Willa, tomorrow, may be dying from it. We do not yet know which way balances will tip. I still do not know if there is a tip, if there is a balance. I think in my deepest places that cancer will do its work. That the moon is, in the end, uninhabitable.

But this is not defeat. This is life. This is the business of living with a power that you have absolutely no control over. We seek treatment, we pray, we bargain with the universe but the universe is not talking back. It keeps its secrets.

Willa has just completed her seventh week of treatment. In a month we will do another CT scan. We will assess the tumor once more, prod its corners, learn its secrets, face the damage done and ask one question. Can it be removed? If it can then we use a very particular language. We use words like, “cure.”

If the tumor cannot be removed, if it is wrapped around the vessels, if it has invaded Willa’s abdomen like a mass of snakes then we use another dictionary altogether. We do not use words like “cure.” No, that will not be made available to us. We will use words like “prolonging life,” like “palliative care.”

I had been making my adjustments. We drive into the city every Friday. Willa takes her medicine. Through the port they pour the poison and we pray. We wait. We laugh, we read stories, we play with toys. Because we make every minute count. I had found a new rhythm. I had worn a new path in the ground for my steps to follow. It was getting easier after discovering my own orbit. I could find it in the dark.

But the moon switched face. We learned this new fact. That in one month’s time we will be shown one of two faces. The living, or the dead. Only the universe knows, and again, the same stubborn silence.

This is what cancer does.

It is not the disease. It’s the surprises. It’s the cruelty in hope, in thinking, “well, we’ve got this figured out. It’s hard but we’ll get through it.” Because really, you may not. At least, not altogether.

Tonight the wind blows so cold the house moans. Lacking arms it cannot wrap its limbs around to warm itself. I feel that way too. Something has been taken from me that I needed. We live with cancer but cancer kills. We live with cancer but cancer changes. We live with cancer but cancer will exact its price.

The moon hovers in the frozen sky. Diamond-hard and winking its one eye. All my life has been frozen and smashed to shards.

But I still believe in the sun.

Sunday, December 13, 2009

The Invisible City of the Kidnapped

I have been shanghaied. Taken and stored in a terrible stinking rotten crate aboard a vessel I have not had the courage to name. I have waited for this since Willa’s diagnosis. We knew it was out there, on the high sea, waiting to come in on some moonless night to snatch us away and hold hostage everything we have built up as a wall of defense. We are defenseless. Willa has cancer.

Right after my last post Willa had her routine ultrasound. The Radiologist came into the room and said, “the baby has a large mass in her pelvis.” Again, the darkened quiet room. Why do we always get the worst news in such places? There was a television on in the background playing a cartoon that Willa has no interest in. She smiled at the doctor. She waved. She laughed.

I knew what it was, the nails were hammered into the crate, we were loaded onto the ship.

Next followed the storms of diagnostic testing, the bone scans, the biopsy, the CT, the bone marrow pull… We were tossed about becoming bruised fruit at the feet of those with power. We had word quickly. Rhabdomyosarcoma, Stage III, to date inoperable.

We were transferred to another vessel. Willa will have a year of chemotherapy. Every week we now go to CHOP and she has poison poured into a port by her collarbone. She smiles. She waves. She laughs. My crate has been thrown overboard. I am barely floating, more submerged in a reeking ocean of foreign garbage and dead fish.

But still, I purse my lips and lift them above the water line inside my new home. I keep breathing. I have learned so many lessons of survival from Willa and that knowledge is being tested most acutely now. I have to hope that someone will find me out here. The waves will push me into shore. That some strange ocean animal will befriend me and share what they know of this place. I will gain new sea legs. I may grow gills to breathe.

In the hospital my heart breaks for the other parents. They never saw this coming. They had perfectly healthy typical children and then were given such news, their child has cancer. They wander about the halls with crazy eyes. They cry when pouring their coffee. They mutter under their breath and the smell of fear is everywhere on them. I smile at them as much as I can. I speak when they can hear me. I look them in the eye and try to offer calm because I know that fear. I am just more prepared for this. For us it was a fixed mark on our permanent horizon. We hoped to avoid it but now we are here.

Willa has lost her eyelashes. Her hair is following and then her eyebrows will depart too. She looks different. Her coloring is profoundly altered, her stomach swelled with tumor. Her belly button pushed out, the skin taught and shiny and horribly horribly wrong. But the weeks have passed. The medicine is running like wildfire through her veins and the mass that spelled such tragedy is shrinking.

Our goal is to remove it as soon as it is small enough. She is too young, too delicate for radiation. The protocol is chemo and extraction and more chemo. This ship will be at sea a good long time. This is my message in a bottle. I had feared saying these things out loud. I feared the permanence of writing them down, of thinking them, of sharing because when others read, hear, see, it is real. Totally, unchangeably real.

Willa has cancer.

Will we ever know the feeling of solid ground? Will she ever have a release from all this hurt? Will we continue to have the strength? Can my fingers web? Can my skin grow scales? Can my back allow a fin to break through by which to steer myself in the right direction? Or will we die, locked in these crates, the worms making a deep-sea meal of our hopes?

We are truly invisible now. No one can see us. But hearts beat in these boxes. Their rhythms will make the waves. We will make our own weather.