Hope

Dancing with the love of my life

 This morning was much like any in my house.

I didn't get a shower. I didn't get breakfast. I stared foggily at a two year old who felt determined to scream over nothing and everything, while wrangling five year olds into ponytails and socks. I changed a diaper, I made breakfast, I made lunches, I threw on clothes and boots and snapped on three little raincoats and ushered my children out of the house and into a rainy morning to take them to school.

Then my littlest person and I climbed back into the car and began our drive home again, and in the ten minutes it took to get from point B back to point A again, I listened to the news.

Chicago has a mayoral election coming up, and for months it's been pretty obvious that Karen Lewis, the head of the Chicago Teachers Union, would be running. Only now she's not, because she is instead starting treatment for brain cancer.

So, like many mornings at my house, I blinked myself fully conscious an hour after dropping my kids off at school, made myself some food, and thought about oral chemotherapy, long diagnostic brain surgeries, radiation, and potential outcomes.

I know what Karen Lewis and her family are going through. Trying to decide what steps to take next, trying to decide how much to tell whom, what to believe, what to ignore. What to do.

In fact, this is something that's been on my mind a whole lot lately, ever since the video came out of Brittany Maynard talking about her decision to die with dignity.

Take a few minutes to watch before we move on.



That incurable, six month prognosis... that was M. Same cancer. Same stage.

The thing is, different doctors have all manner of different opinions. It's entirely possible that if she'd had M's medical team, they would have said "eighteen months," instead of six. And what would she have done then?

It's entirely possible that since she's been treated for the early stage tumor before the late stage one grew, she wasn't eligible for trials like the one that saved my husband.

I don't know.

Really, there is so much about brain cancers I don't know. There is so much about gliomas I don't know. There is so much about cancer, period, I don't know.

What I do know is that each cancer is made from the cells of the patient. Every tumor is as much a part of their body as their heart, or their kidneys, or their brains. It's just that the wrong information is making the wrong cells grow, and spread. Cancer is your own body attacking itself.

And because the cancer is part of you, it is unique. As unique as each individual person.

So every story is different.

But some things are the same. You don't want to frighten yourself or your loved ones. You don't want to believe the worst, you're afraid to believe the best. You look at days instead of years, and you begin to truly weigh the difference between quality and quantity.

Our babysitter asked me, after reading last week's post on M's cancer, what our children know.

The truth is that since early summer, M's been having minor seizures, and the girls have started noticing. It's hard not to notice. And M hates it. He hates it when they see him that way, weakened or ill. But as always, I try to be realistic.

The truth is we know so little, and this may simply be our normal now. This may be the way life is for us, with Daddy occasionally having a seizure, so the girls should know what to do.

I've told them Daddy is okay, that sometimes he has these seizures, and they might look a little scary, but not to be scared. I've told them that if Daddy starts to have one, they should come and get me. I've told them that this is why Daddy takes medicine every morning and every night, to stop the seizures.

And yes, I've told them that the seizures are because Daddy was sick. Very sick. That Daddy had a sickness called cancer, and it was in his brain, and he got lots of medicine that made him better.

"Cancer" is a word that holds some meaning for them. They've known somebody who died from cancer. They know people who have gotten better. These are things they remember. My five year old daughters are old enough to remember that sometimes cancer means you don't get better.

"But Daddy got better," I tell them.

"Daddy is just fine," I say, "but he has to take his medicine every morning and every night, because sometimes you don't get all the way better. That's why Daddy walks a little funny. That's why Daddy sometimes has seizures. But you shouldn't be scared. Daddy isn't sick anymore."

Only that's not really the truth, is it?

The truth is that when M was diagnosed, he was 24. He was so young, and so strong, and so healthy, it seemed impossible to me that he could possibly succumb to something as mundane as cancer.

And he didn't.

When he was diagnosed, and he doubted, I rolled my eyes. "Most people who get this are old," I said, in my 23 year old way. "They're in their fifties and sixties and stuff. OF COURSE they die. The chemo kills them faster than the tumors. But you won't, because you're young and strong and healthy. So long as you can beat the chemo, you can beat the cancer. And I know you can do it."

Karen Lewis is in her sixties. Ted Kennedy was in his seventies. And yes, Ted Kennedy was dead in a matter of months. And maybe, yes, it is about youth and strength.

But youth and strength come in limited supplies. My idea of what it means to be old has changed now, now that I have really crossed the threshold to adulthood, now that I have seen young and old fall to the same set of diseases, I know how naive I was.

I still don't know that I was wrong, but I know I could be.

And now M is not the strong, young, healthy man he once was. He's not twenty four and athletic, a towering Greek god of a man who promised to spend more of his life married to me than not. He's a thirty two year old father of three, tired from working a job he doesn't care for, exhausted from studying to improve his credentials, maybe even a little jaded from seven plus years of survival being the benchmark of success.

I no longer believe in the truth of words like "cured," and "remission." Those words mean one thing- "waiting."

I know that Karen Lewis is just beginning to wait. And while today I know I sound less than hopeful, there are other days that "I'm waiting for it to come back" and "I can beat it" mean the same thing.

Every day is a different story.

I told myself when M was first diagnosed that it way okay. That if he made it to those "old" years, his fifties or sixties, I would accept his death with dignity. That we should all only be so lucky.

But each day we come closer to those years, and each day I am more certain that his death will devastate me just as much, even more, beyond repair. And there are nights that he works late, or hits the library to study before coming home, when I imagine.

I imagine that me feeding the children dinner without him, putting the children to bed without him, somehow smiling and laughing and talking with our daughters about their days is normal. That it is what I do, alone.

That it is as routine as making them breakfast and lunch and getting them into their coats.

Some days I imagine that M will come to the point where his doctors tell him it's too late, that he has no hope, and he can choose between palliative care or none at all. I imagine him making the choice to bow out of life gracefully, and what I would do- how I would tell our children their father would soon be gone.

I have a friend who's father died when she was seven years old. She recently told me how different her understanding of relationships is from another friend, who's father abandoned her family when she was the same age. How in one instance the child never doubted the love her father had for her. How in the other, the child grew up constantly doubting her value, her ability to be loved, whether she deserved to be loved at all.

I don't want my husband to die. I know it goes without saying, but I must say it. I do not want him to die.

But cancer doesn't care. Cancer doesn't care how many people love you, or how many people you help, or how many people depend on you.

So when the news comes on and I cry in the car, and the rain masks the tears on my face as I drop my children off at school, it is still a morning like many others at my house.

The truth about life is that it can end at any moment, but most of us never notice the sword of Damocles hanging over our heads. Most of us ignore how fleeting and fragile our moments are.

I try to be one of them, but I don't always have the luxury. Not when I'm spending my days filling out the cancer binder with new dates and new seizures.  Not when I'm reminding myself that I can handle bedtimes alone. Not when I hear about another person who has joined the exclusive club of the neuro-oncology corner of the cancer center.

Some days I must face what I don't want to face- my life is not normal. As normal as it might appear on the outside, volunteering for the preschool, making dinners, endless laundering... it is never going to be normal.

Because I am always balancing my need for honesty and my need for optimism, and when my children ask me, "Is Daddy feeling sick?" I need to decide how much is too much for a five year old to understand? How much is too much to expect of them?

To our children, M is old. He is as old as God, and as powerful, and as immortal.

And I, their mother, will someday be tasked with teaching them that he is none of those things.

That your fifties or sixties is still too young. That he is no more than human, and that yes, someday he will die.

Not when he's older than great-grandmommy, probably not. Probably not even older than Poppa.

Probably.

I can hope. God, I can hope. I can believe in the twenty five and a half years he promised me. I can believe in that.

But on days when another person is ill, and I am faced with questions like, "Will they get better?"

I would give anything to be able to say 'yes.'