The Twilight of Doubt

We were most of the way between lunch in Eau Claire with M's cousins and dinner in Milwaukee with a deploying friend. In the hour before, the sunset stretched from horizon to horizon. Bright purples and reds and orange puffs of clouds, hovering over fields glowing gold beneath the sky. Now the sun was beyond the treeline to the west, and a deep rainbow still clung to the air where it submerged, casting a warmth to the wintry purple of the sky ahead.

RH couldn't see the pages of her Pocoyo book, and she called to me from the rear of the car.

"Mommy, can you make the sunshine come back?"

Oh, God, how I wished I could.

I wished I could make the sun stop and go backwards, and spin the earth the wrong way round, until time reversed itself and I could freeze it exactly where I needed it right then.

I would spin the earth backwards 2735 full rotations, and freeze it on a sunny day in July when the heat danced on the outside our basement apartment, and M and I lay beneath the mid day glow of summer- wrapped in each others love and the endless flavors of possibility.

I would never give up the now; the dark, cramped, cold hours on a freeway between family and friends, after the chaos of the holidays has mostly passed, with the same awful rendition of The Alphabet Song playing on a loop from our back seat for eight hours and then some, winding out the gloomy December day.

I would never give up the darker times that always seem to follow the bright.

I would hold onto those hours after the Christmas presents were opened and the house was asleep, where I lay in bed and cried silent tears because it had been so good. It had been so joyous, and full, and there had been so much laughter and so much love, and if this was his last Christmas there was nothing anyone could have done to make it better.

There was nothing anyone could do to change it that would make it less painful in future years, if this was his last Christmas, so I cried because I wasn't ready for the best to be here. I bit my knuckles while my tears flooded my ears and I waited for Xanax to calm me to sleep, because these are my dark times. The moments the not knowing, the endless not knowing, is so much I can't bear it.

If I could bring back the sunshine, if I could make the sun come out from behind the clouds...

On the heels of every happy moment doubts follow me.

When I collected his photograph from the studio, framed and matted with its velvet backing, I cried. The nice girls in the nice shop smiled kindly, used to weeping mothers and wives who come for their happy memories.

I cried for the child in the picture, the toddler with her lips pursed, ready to kiss her daddy's cheek, because we don't know. For another few hours yet, I won't know. I'll sit in the friendly lobby of the MRI suite and not know until the news is ready. And this month I'm worse at waiting. This month I'm frazzled from lack of sleep and a house knee deep in empty cardboard boxes from Channukah and Christmas presents that are somehow already broken or lost and replaced again. I have an image in my mind of a toddler grown into a girl whose best memory of her father is a framed photograph of how much they loved each other when she was small.

She asked me to bring back the sunshine, but I have no power over light. I have no control over tides and clouds and microscopic infiltrations of a tumor we beat years ago, like a vampire chased away but never killed. Whose ashes we never sprinkled into running water to ensure they would never return.

It's a specter of destruction, our unknown, and some nights I laugh louder and drink faster and dance harder and hug tighter and read all the stories that mock the darkness and do the funny voices for the children. Sometimes I find myself teaching them to laugh at shadows, to find familiar friends in their darkness, because I can't bring back the sunshine.

The children spent their vacation in Minnesota climbing all over their father. Burying him in pillows, playing catch with him, chasing him around the house and snuggling onto his lap. As though somehow they shared the dull anxiety I carry increasingly longer and sooner before these days that I wait and our friend the oncologist can wash it away.

I can't tell myself any longer that each time is the same, that one day it will be different. The truth is that every time is different now. Every time we're waiting to see if THIS is the time, not that there's something, because now there will always be something, but that there is enough something. That it's time again to pick our poisons and spin the roulette wheel of radiations and surgeries and consultations and brave faces.

My brave face is always on for the children, always firm but kind as I say with a sigh that I can't bring back the sunshine. But I wish I could, honey. I wish I could.

If I could spin the earth backwards around the sun, I would go back to the sunny days when he tickled his daughters and they laughed and squealed and jumped all over him because they love him so much, and no matter what the stresses at work he knew everything was worthwhile.

I would go back to the mornings we lay in a different bed, the sunshine coming under different curtains, and listened to our children laughing. Listened to them singing their songs, and telling their stories, and laughing with each other; and us, aside. Other. Clockmaker parents in the sunset of greatest joy I never knew I could imagine.

I would stand outside of those moments, after spinning the sun, so I could always know. This is the thing we chose together, these children we had no idea we could love so much, these girls we didn't know would have the sweetest smiles and the brightest eyes, who would look so much like us and yet like only themselves, who loved us so intensely. Who love him so much they could never understand why I lay in the dark and cry over happiness.

Not from happiness.

But because it's not fair. It's not fair to see the sunshine, to see it shine so bright and so warm and know the day will end. It's not fair to choose between long afternoon naps in a family puddle and adventures outside with the sun on your cheeks.

It's not fair to see them love each other so much and know that it's going to end. Someday it's going to end. Someday, the news is going to be so bad I'll have to stop laughing into the oncoming darkness.

And if I could bring the sunshine back...

If I could only bring the sunshine back...

"Mommy, can you make the sunshine come back?"

As simple and straightforward as passing her a bag of crackers, or picking her book off the floor. Because I'm Mommy, I'm the omnipotent creator of darkness and light, of food and clothing, of routine and chaos. To her, I am just as capable of bringing back the day as of opening her juice box.

I am the man behind the curtain, pulling levers to emit puffs of smoke and the rumble of thunder, crying myself to sleep when the children are tucked into bed. Because I can't bring it back.

This might be twilight, but night is coming. And I have no way of knowing if tomorrow the sun will shine again.

Father Dies, Son Dies, Grandson Dies

When I was younger and felt, as I often did, that I had been the victim of some injustice, my father used to tell me a parable.

He would start telling it, and I would roll my eyes. Because I'd heard it before, and teenagers often roll their eyes when they think they know something already. But I also liked the story, and I always enjoyed my father telling it. So I listened.




Once upon a time, a holy man was wandering across China. He came to a farmer's humble home, and knocked on the door to ask if he might sleep in the barn. The farmer wouldn't hear of it. Instead, he ushered the holy man into his home. He sat the holy man at the head of the table, and fed him dinner with his family. He put the holy man to sleep in his own bed. And in the morning, he gave the holy man some food to carry with him.

As the holy man was leaving the house, the farmer stopped him.

"Please, would you do me the honor of blessing my family before you go?"

The holy man stood and stared for a minute. Then he nodded, and spoke. "Father dies, son dies, grandson dies." He turned and began to walk away.

The farmer was furious. "What kind of blessing is THAT?!"

The holy man shrugged. "Would you rather it happened another way?"

The farmer, dumbstruck, shook his head, and bowed in thanks as the holy man wandered off again.





My father would explain every time, that no, you would never want it another way. That one of the worst things that could happen to a human being was to deviate from that order. Father dies, son dies, grandson dies.

You never want to outlive your children.

This weekend, M and I learned that M's grandmother has cancer. She's having surgery as I type- removing a tumor the size of a football. This comes right on the heels of the word that M's grandfather has moved into hospice care, his Alzheimer's has become so advanced.

When we heard the news, I felt a wave of grief immediately. I know how rarely we get to see M's grandparents, and I may already have seen his grandfather for the last time. But I have always loved them. From the first time I met them, when M's grandpa made a joke, I don't even remember what it was, but it was friendly and kind and welcoming, and I was grateful to him for his thoughtfulness, welcoming me into his family. Well before M and I were engaged.

And M's grandmother. Mother of six, grandmother of nearly thirty, great-grandmother of six, in her eighth decade of life she has discovered she has a true talent for storytelling, and has been writing a history of sorts of the family. Each time we've all gathered together, she's read us all a new story, and they are beautiful and warm. I love sharing the bond of storytelling with her. I don't want to lose her from my life, let alone M's.

But M's grief took a different form.

"They've had a hard life," he said, "but it's been such a good one. They've never had to bury a child, or a grandchild... and I'm glad I could help give them that."

Since the first day of M's diagnosis, his biggest concern has been how his death would effect other people. How much it would hurt his sister, his parents, me, and now our children.

"Father dies, son dies, grandson dies," M said to me, and he managed a smile. "This is how it's supposed to happen. When you're very old, surrounded by people you love."

I think he might have even found it romantic, a little. I take that back. He definitely did.

Here's the thing- to M, I don't think there's any kind of romance greater than one that lasts a lifetime. That lasts until you're so old your body simply gives out, only you're together, you and the person you love.

Last summer we went to a wedding where the couple chose "The Luckiest," by Ben Folds as their processional.

They carefully planned not to include the last verse in their ceremony. I understand that. Any song that explicitly references death might not be appropriate for a wedding. But M hummed that last verse under his breath, squeezing my hand. Because he's that kind of romantic.

In the last verse of "The Luckiest," a couple gets married, lives into their 90s, and dies within a few days of each other. And that is the definition of true love that Ben Folds and my husband ascribe to.


I know M is comforted by the idea that he may lose both his grandparents instead of one, because it is important to him to know that they won't have to dedicate any more of their remaining days on this earth to grief than that.

For him, that is a tremendous comfort.

I often forget about other people. I often forget that M and I aren't our own little universe. I forget that there are other people who care about us. It's easier to forget, a lot of the time. It's easier to put little limits around your grief and your hope and pretend that nobody outside feels any of it.

But they do.

M is right. His death would have hurt people, will inevitably hurt people. And that he is alive isn't just a gift to me and his children and his parents. It is a gift to his grandparents. It is a gift to his friends. My friends. To everyone he hasn't yet met but whose life will be brightened by his presence. It is a gift. And he knows it.

How rare, to know that your life is truly a gift to others. And not in an egotistical way, no, in the profound language of grief and love and an understanding of the stark reality of life and death, M knows that his life has meaning for the people that love him.

M's little universe is much bigger than mine. Because he's fundamentally a better person than me. I've always known so. He only finds ways to remind me time and time again.

Father dies, son dies, grandson dies.

When somebody is ill, their family's should be scared, and sad. Because that is one of the greatest expressions of love we have, wanting to keep somebody with us. The way M and I, and M's aunts and uncles and cousins do. You can ask no more in life than to have the opportunity to cause somebody grief. You can ask no more in life than to be so well loved.

If you're the praying sort, or the sending-good-energy sort, or any of that, please keep M's grandparents in your thoughts. And please keep the rest of the family in your thoughts, too.

It's not so little a universe at all. It's all of ours.

With love and grief and hope enough for all of us to share.

M's grandparents

Bald and Bare

My husband is bald.

He's been bald before. And he's a good looking bald man. But people who know him ask quiet questions.

They know things have changed around here, in regards to the tumors. They know we're on higher alert, that we still haven't balanced seizure medications. That we're getting more frequent MRIs and now EEGs and that things are not as constant and simple as they had lulled us into believing they were. Each time I think about how much time has passed, I can't help but recognize how unfathomably fortunate we've been. Seven and a half years. We've been doing the astrocytoma thing for seven and a half years. And I haven't seen M bald for seven of them.

M's hair never really grew back quite right on the radiation side. And it's been thinning rapidly over the last year or so. So M made the call to bic the lot of it- return to the cue ball aesthetic.

It works on him, the handsome devil.

But it means things. It must mean things.

No matter how shapely his skull or how bright his eyes, people wonder when they see the scar.

He's fine. He's fine. He's fine.

(Part of a panicked part of me deep in my chest wants to scream, He's NOT!, and I ignore that. Most of the time.)

He's fine.

We're cutting our Christmas in Minnesota a little short for him to make it to his next set of MRIs, to make sure he gets them before his doctor has her baby. Because you accommodate your friends like that, and M's neurology team, they're are friends.

We've known them for years. Years. And we all know that really, M is fine.

(Even if the RNs we joke with suddenly seemed stone faced and breathless when they ordered more frequent tests. That was just me seeing it, right? That wasn't real. That wasn't what was happening. That was nothing. I don't have to think about that.)

He's fine.

And let's face it, the baldness works for him. He's tall and handsome and manly and broad, his eyes are brighter when they're not competing with his receding locks. They twinkle brighter. His eyebrows seem darker, more dramatic. Sexier, even.

Baldness works on that man.

I had worried that the kids wouldn't recognize him. The toddler, anyway. I worried she'd freak out when Daddy appeared looking like a bad rendition of himself. But of course she didn't. Instead, M stormed into the kids' bedroom, and announced, "Guess what? I wouldn't let Mommy brush my hair, and look what she did!!!" Today he even helped me get them all to agree that really, they could use a trim, too.

(What's good is now they see him bald and normal. Now if the tumors are growing or back he won't have to lose his hair, and he'll look normal to them. Now if he's sick and he gets sicker and I have to tell them about how sick their daddy is, at least he'll always look like Daddy to them.)

He's fine.

I like it. He likes it. He likes that he can snuggle up under my million of blankets with me and not overheat, now that his excess heat escapes through his giant hot bald head. I like that I can warm my hands on it, as I sit up holding my kindle after the kids are asleep.

I like tracing my fingers over its topography.

But it does kind of feel like I'm losing something. This isn't like last time he was bald. This time the hair is really gone. There's no hope that maybe it will grow back. Of course it won't grow back. Thirty two year old men who go bald don't suddenly have their hair grow back.

No amount of hair clubs for men can make it grow back. And that's okay, because this time it's not chemo and radiation making it fall out. So that's okay.

M's first bald day, seven and a half years ago

M was never scared of aging. Aging is a triumph for him, his little "Fuck You" to cancer. He loves the affectations of middle age, which are more hipster-ish and honestly sexy on him than he would dare admit. Age is a triumph for this man.

(But suddenly it's not for me, because it doesn't matter if he's young or if he's old. I don't want to lose him either way. I don't want to lose him to cancer or seizures or Alzheimer's or heart disease or diabetes or anything. I don't want to lose him period, and if he gets old someday he has to die.)

He's fine. He's a fine bald man. A foine bald man.

He's my gorilla bear. Just a little less furry. He's my favorite man. He's my favorite human.

I can not panic. I can differentiate between irrational hysteria and what truly is.

(It's not hysteria if it's true. It's not hysteria if it's right.)

Still, as always, I am comforted by that little voice of panic. Because I know something true about myself- when the shit gets real, I am a rock. I am solid. I am unyielding and unbending. I take care of what has to be done. I take care of it. If the panic is there, things are okay. things aren't so bad. I have the luxury of harboring a few waves of fear.

Because M is just fine.

The Center of the Universe

Me and the center of my universe

Last week, M and I decided to (finally) take the plunge, and start watching Breaking Bad. (This post might have a few spoilers if you've never heard about the show before, but nothing big.)

Neither of us are generally the sort of person to get caught up in a cultural hype, we geek out about what we geek out about, and there's a lot of overlap for us. But we both feel a bit uncomfortable when everybody we know and everybody they know and everybody else seems to be obsessed with something new. Especially when it comes to TV. We don't want much television, so when we do we sort of want it to count. Well, now that Breaking Bad is of the air, now that it's over and we've distanced ourselves from the popular obsession, we decided it might be fun to watch just an episode and see what we thought.

Of course, we quickly learned it's pretty much impossible to watch the first episode of Breaking Bad and not immediately put on the next.

There's a lot on the show that makes us uncomfortable. Not the murder and drugs and gruesome comedy of errors regarding those things. No, what makes us uncomfortable is scenes like this.





I get a visceral fury whenever Skylar, Walter's wife, talks to Walter about his treatment. It's not about what he wants. It's about what she needs. I understand where she's coming from, sure, but she's going about it all wrong.

She's made up her mind what's going to happen to Walt, and he's going to do what she says because the alternative is to die.

I understand that. I do, I profoundly do. I see myself in Skylar a lot. But where we fundamentally differ is in how we address those same fears and needs. For me, M's cancer was always about him. It has always been about him, and his life, and his needs. I refused to believe he would die, but I tried to make sure he was feeling good about life as he lived it.

Whenever Skylar tries to bully Walter into a different treatment, or into a different doctor, or simply into her way of thinking, it comes across to me as cruel. She doesn't care if Walter's happy, so long as he's alive. Whereas Walter doesn't care if he's alive, so long as he's happy. Or at least, so long as he feels he has some direction and control over his destiny.

M and I watch these scenes snuggled up together on the bed, our hands gripped together and our breath shallow. Because these are real conversations that people really have when they know what they're facing.

I wonder if Brittany Maynard was a Breaking Bad fan.

When Walt's hair fell out during chemo, I wanted to punch Skylar in the face. She couldn't speak. She cried when she saw him bald- exactly as he had predicted. I remembered how I locked down my own feelings when M's hair started falling out and stayed cool, calm, and as relaxed as I could, helping him shave the patchy growth left on his head.

Because, as it seems I forgot in my grief and rage over Ms. Maynard, it's only about one person.

When somebody you love is in pain, is truly ill, you get over yourself and remember who really matters.

It's like this wonderful graph from the LA Times article- "How Not To Say The Wrong Thing."

The idea is the sick person is in the middle, and nobody is allowed to complain them about how their illness affects anyone else. That person can complain, or not, to anybody. All you give, from the outside in, is support.

I might have worried that M would die and I would never see my Happily Ever After with my One True Love, but M never heard that from me. Never. Because it's unfair and unkind. What could he do about it? Stop being sick?

No, M, was the center of the universe. He had to be. His universe was terrifying and it was collapsing. You never put more burdens on the person holding together the center of all existence. You just don't.

Skylar turns it on its head. No matter what Walter tries to do, she is critical. Who the hell wants that kind of person for a support structure?

Watching the show has been fun, so far. Lots of humor, meth related violence, and people saying, "Bitch!" with wild and conflicting inflections.

But we were not expecting to turn into a medical drama. Not hardly. And it's the side of medical dramas we don't particularly want to see. While M was on chemo, we watched House and Scrubs fanatically. We spend a few colder nights of our honeymoon watching Grey's Anatomy. We like the doctor side of things- doctors having fights and drama, and somehow coming out in the end to either cure the patient or to fail.

Watching Walter fall apart as the chemo ruins his body and his family's poorly concealed despair... that's not so much fun.

That's everything we never wanted.

We're still watching the show. Of course we are, it's too damned addictive.

But I have a renewed sympathy for the Maynard family. Actually, I'd like to offer her and her family an apology, for every bit of anger I harbored about her decision.

Nobody has the right, not me, to question Brittany Maynard. For her, she was the center of the universe. I'm so far outside the circles of contact and support, I don't even exist.

Me and the center of the universe

That's what I think I need to remember.

Dignity versus Nobility

It's been a long couple days in front of my computer.

Brittany Maynard chose to end her life on Saturday, surrounded by her loved ones. And as a result, I can't get away from the story.

It's all over facebook (although my friends and acquaintances thankfully have enough tact not to post it directly to my wall). It's all over the radio. It feels like it's everywhere.

A woman with the same brain cancer as my husband, three five years older than he was when he was diagnosed, and three years younger than he is now, ended her life in order to avoid suffering. When I say the same cancer, I mean THE SAME CANCER. The same size tumor. The same location. The same stage.

I've been cautious not to form much of an opinion. I've been careful to remind myself that she is not me, that she is not M, and that she was experiencing grief and fear and the desire to live a beautiful life in her own individual way.

I respect her choice, but as much as I sympathized with her and pitied her and wished for her to control her destiny to the best of her ability, it still enrages me now that she's gone. (Yes, I know, classic stages of grief.)

And here is why- it comes down to the word dignity.

To die with dignity.

I believe it is every person's right. But that word means many things.

M wanted, when he learned his diagnosis (but not his prognosis, mind you), to die with dignity. For him, that meant finding a medical trial to participate in. For him, that meant giving his death, not only his life, meaning.

He said over and over to me, he did not want to be defined by his brain cancer. He didn't want memorial funds in his name to raise funds for brain cancer research. He didn't want grey ribbons on all his friends' car bumpers, or 10Ks, or telethons. He wanted to be remembered for what he did, not what the cancer did to him.

He wanted to be remembered for his work on buildings that would stand for generations. He wanted to be remembered for his sense of humor and his brilliance. He didn't want to be forever associated with a disease. He didn't want to be Lou Gehrig.

He wanted to be himself, in control of himself. Just as Brittany Maynard did.

Only his idea of dying with dignity wasn't completing a bucket list of places to visit and things to see. It was saving other people. It was giving his death to other people, in the form of a medical trial. Of using his death to help understand the cancer, and perhaps keep other people from experiencing the same fate.

This contraption held his head down to a table for treatment.
The marks are for aiming the beams of radiation directly at the tumor.

At the time, the word that came to mind for me was noble. I thought he was unbearably noble. But he didn't see it that way.

For him, it was about dignity. About standing and facing his fate and making something better of it.

In a way, Brittany Maynard did the same thing. Her way of making something better of her death was to try to ensure that all other terminally ill people in the United States have the same option- the die before living is too painful to endure.

I know what kind of pain Brittany Maynard was facing. I know it. In one of her last statements, she said her helicopter flyover of the Grand Canyon was followed by her worst seizure yet.

Seizures are no joke. I know.

But dignity isn't just making sure you avoid pain. Dignity is prioritizing your humanity over your fear.

Yes, the right to die is incredibly important. And of course I have no way of knowing what options for treatment Brittany Maynard had. I don't know if a clinical trial was a possibility for her.

And as I've said a thousand times before, I don't believe that suicide is a selfish act. That Brittany was thinking of others is obvious to me, she made sure to say she hoped her husband would remarry and have children someday. She understood that life goes on for the loved ones of a dying person.

But at twenty nine years old, less than a year younger than me, I wish I could stare her in the eyes before she made the choice NOT to undergo any sort of treatment that would effect her quality of life for those last months, and ask her, "Who are you doing this for?"

I don't know if M's trial is saving any lives. I believe it could. I truly believe it could. It was dangerous, and it was frightening, but it worked.

And if it hadn't, doctors would know going forward what not to do, and why, when another terminally ill patient came along.

So maybe Brittany Maynard died with dignity. Maybe she did.

But maybe that kind of dignity isn't enough. Maybe, for me, death should be about more than dignity. It should be about more than avoiding suffering.

It should be about what you give the world with your life and death.

The OKO Tower, currently under construction in Moscow, and one of the projects M is most proud of.

When you're young, this is a much harder question. In your twenties, what do you really have to contribute to the wealth of human knowledge and understanding and beauty?

As you age though, you give more. You can't help it- living in of itself is giving.

My heart breaks for Brittany Maynard's family. Especially for her husband, who at least got to enjoy marrying the love of his life without the shadow of this prognosis and planned death over his head.

And I know that M is not typical. That his story is profoundly unique. But when I look at him, this man who at twenty four, the day after proposing to me, was diagnosed with the same brain cancer, and has since married and had three children...

I can't help but question the information Ms. Maynard was given. I can't help but question her motives. I can't help but question whether this wasn't about dying with dignity, but making a point.

And I would scream from the mountaintops to anyone else with a stage four, inoperable glioblastoma, "You can have more than dignity! You can be NOBLE!"

Maybe it's just from watching the man I love struggle always for what is best and most right for others, but I would always choose the latter.

Someday, the time may come when M is ready to choose to die. But I know him, and I know he would only ever make that choice if he thought living, under any circumstances, would give no more to the world than it would take from it.

M and his dad watching a pig race with the kids-
seven and a quarter years after being diagnosed with terminal, inoperable brain cancer.

I hope that is an equation that other people suffering from terminal illnesses can consider.



Edit:
In response to the question- what if *I* were diagnosed with a terminal, debilitating illness?
At this point in my life, if it were in fact the same glioblastoma, I might consider planning for a Brittany Maynard-esque death with dignity. Because the process of going through personality changes that might make me angry or even abusive towards my children is something they are not yet old enough to understand. My choice would be based on my desire to cause them the least amount of trauma- leaving them with memories of me intact. Again, the equation would be that living would give no more to the world than dying would take from it. But if faced with a similar illness before I had children or once they were old enough to understand the effects of diseases of the brain, my calculation would probably be different.

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.'

The Routines of Bravery

On Monday, M and I went in for his regularly scheduled MRI and checkup with his neurooncology team.

In many ways, it was as routine as these visits can ever be. We talked more with M's doctor about her pregnancy than we did about M's condition. It's hard to explain, but sometimes you can't keep yourself from becoming friends in situations to like these. While we might not see M's medical team for dinners or playdates, we look forward to catching up on our lives together, to bumping into M's RN at synagogue, to squealing in delight at the not at all surprising news of new babies. We warned her, when she became M's doctor, she would get pregnant. We just have that effect on our physicians.

In many ways, it was anything but routine. Routine is what you do every day. It's dragging yourself out of bed to make breakfast and lunch and go to work or drive kids to school. It's brushing your teeth, and dodging calls from telemarketers and GOP surveys. It's rolling your eyes every time a bit of spam gets into your inbox after you've flagged it three times. It's that beautiful moment when you lay down on the bed and all at once your whole body tells you how hard it's worked today, and how incredibly amazingly blissfully pleasant it is to be horizontal.

It should never be routine to sit biting your nails for hours in the early morning while someone you love is getting sophisticated images taken of tumors that you can't help but worry are growing. Yet letting it become routine is a comfort. Telling yourself that one scan is no different than the dozens that came before makes the anxiety easier to bear. Telling yourself that you can adjust to anything, that anything can become normal and surviveable and commonplace is a necessity for existing beyond a trauma. Like astrocytoma.

This is life. And it is dreadful. And it is terrifying.
And it is so beautiful and wondrous and magnificent that every day we accept the terrors that come with continuing to live, regardless of what they may be.

For me, this week, the terror of "what if" was eclipsed by the other daily miseries I'd piled upon myself. My children brought home their own little nightmare, or rather hundreds of them, in the form of lice. Mice moved into my house. Our dishwasher broke. Our planned number of houseguests doubled as all air traffic in the area was downed. My doctor switched my medication to something that turned me into a comatose zombie. I planned and executed my twins' fifth birthday party. And for a swathe of it I parented solo while M took a much needed vacation with friends. And somewhere in there, I gave myself a little gift. The total hyperextension of my emotional energy. I could not find it in myself to worry until I was sitting in the waiting room, filling out the routine pre-MRI paperwork.

For me, this week, the beauty was watching my five year daughters exchange gifts they'd chosen for each other. It was watching as they let their two year old sister help them open their presents. It was five hours free to re-rearrange my kitchen from the affections of weeks of houseguests. It was hugs from little humans so sweet I didn't even care they might infect me with their pestilence. It was my mother-in-law beaming with motherly pride when she saw my first book, and my mother swapping apples with her grandchildren at the orchard, and the way M's belly presses against my back just right when he snuggles against me in bed, supporting my spine and warming me to my bones, and feeling his dimple in the air when he smiles in the dark.

These are not easy things to put to words. And nowhere is it harder to find a way than in the neurooncology ward.

I know how dreadful it is to be there. I know especially how dreadful it is to be new there. I remember our first visits so vividly, the fear and determination and guilt. The aura of hopelessness that surrounds some people, and the desire to simply look away- to not be contaminated.

When our visits began to feel routine, a woman named Shaneesha made them feel joyous. She knew us by name, she delighted in the growth of M's hair, in asking me about wedding planning, then honeymoon photos, and then pregnancy news. She was a patient services representative, and I looked forward to seeing her, to wasting the time of people in line behind us as I told her how ultrasounds had gone, or what we would do in New Zealand. Her last week at that job, we brought the twins in for the first time. She leapt over her desk, squealing with delight, and ran to them, and hugged them.

She made that terrifying place a home. And when she left, I decided I would try to do the same for another family just embarking on their brain cancer story.

Whenever we're at the cancer center, I talk loudly. I joke. I laugh. I talk to people, and smile.

So on Monday M and I made a minor scene, laughing and joking and smiling in the waiting room after hours of anxiety and MRIs, surrounded by quiet, fearful faces, and oxygen tanks on dollies, and colorful scarves and stubbly new hair. And when it was done we took the elevator down again from the top floor.

We shared the elevator with two people. A mother, steering a wheelchair in which her teenaged daughter sat.

Her daughter was bald, with a mostly healed scar running across her scalp. I'd guess as much as three months had passed since her surgery.

I recognized the swelling in her face, she was taking steroids, which meant she was probably starting radiation. Her eyebrows told me her chemotherapy was probably oral, as M's had been. Her bald head the result of the surgery and the radiation, rather than an IV.

The girl sat in her chair with dark, intelligent eyes forward. She did not look as M and I laughed our way onto the elevator. With M's hat on, with his head a full four feet above hers, she would never have seen the scar on his head that so closely matched hers.

She did not look at me, but I knew the look in her eyes. Directionless anger, mingled with hopeless fear, and the fear of hope.

Her mother smiled cautiously, and I knew her as well. Determinedly optimistic. Keeping a brave face. Brave out of necessity. Terrified, and helpless, with nothing to offer but love and support as she walked through this new world.

The girl clutched a cane covered in fluorescent patterns, and I remembered M's own cane. How much he hated it, but how as a man he could accept a cane as an accessory- we talked about getting him one with a carved snake or lion's head for a handle. For a teenaged girl, it's a much more difficult affectation, and I was impressed with her creativity.

"Is that washi tape?" I asked.
"Yes!" her mother said. She beamed at me. "We're going to change it, though. She says it's too bright for fall."
The girl rolled her eyes, and I saw the human inside her, the constantly embarrassed teenaged girl. I smiled at the mother.
"Totally. Are you thinking about something more Halloween-y? Skulls and crossbones or something?"
I hoped maybe the girl would smirk. I thought skulls were delightfully subversive.

Her mother gave me a look that broke my heart. It wasn't admonition, or humor, or solidarity. It was gratitude.

The elevator doors opened, and more people came in. People who weren't traveling through the world of neurooncology. Our conversation ceased.

Seven years, three months, and six days ago

But I stared at the girl, and her mother. I wanted so badly to speak, to say, "I know what you're going through," even if I don't.

"This is my husband," I wanted to say. "He was diagnosed with a stage four glioblastoma seven years ago."

I knew the other passengers, the ones from lower floors, they would be mortified. But I didn't want to embarrass the teenaged girl. Not in that way.

"He was diagnosed when he was 24," I wanted to say. "We'd been engaged for less than a day."

"I know how terrifying it is be young and have cancer."

"You're not defined by this, unless you want to be. And either is fine, so long as you make the most of the life you have. It can still be filled with happiness."

"We have three children now. Our twins just turned five. They're five years old, and we didn't conceive them until after a year of chemotherapy was over."

"It's going to be okay."

But I couldn't say any of those things.

I wanted to give the mother my card, link her to my blog, hope she would stumble on a post about M's cancer and feel a little more hope. Show her how unfathomably normal brain cancer can become. How the brave face is a comfortable part of the routine, and she's already halfway there.

I wanted to touch the girl. Just lay my hand on her shoulder. I know how people must avoid her gaze. Wheelchair bound, bald, and doomed, she must feel a pariah.

I do not know that girl's story, but I know by now she knows the language of brain cancer and its treatment. I know phrases like "GBM" and "clinical trials" are part of her vocabulary.

I wanted to tell her how many people, older, sicker people, live for years with late stage malignancies in their brains. How easy it is to find them on the internet, if you can get over your fear of the other stories you might find as well.

I wanted to tell her life is brutal and cold and cruel, and it is unfathomably beautiful, and generous, and good. And that's not a contradiction, it's a fact. And once you accept that in addition to the terror and the grief and the bitter unfairness of it, there is still so much to take away. So much to revel in. Especially when you know how fleeting and ephemeral it is in every aspect.

Instead I walked to the car.

M sighed and squeezed my hand. "I wanted to take off my hat," he said.

That was all.

But that brief sentence said so much more. It said, "I know how hard it is for you to see people you might be able to reach and help, in some other set of circumstances, and know it's probably best to do nothing. I know how much that girl got to you, how you felt for her and pitied her and and didn't pity her, and how complicated all those feelings are. I know how much you wanted to tell her mom it would be okay, and that being brave is so, so important, and that her daughter knows it and loves her and will never find the words to say how much it means to her that the people taking care of her stay so strong. And I feel it too."

That's why I fell in love so hard with that big, goofy, brilliant man. Because he knows me, and he shares the parts of me that make me feel the most human. And in his frequent moments of compassion and tenderness, I am humbled that he loves me.

I watched my husband wrestle with the emotions of empathy for a stranger, and loved him more. I knew the more I loved him, the more I needed our trips to stay routine. And I knew he understood they could not be forever. And my heart broke for him, a man living under a question mark. And his bravery only made me love him more. And so on.

I know that someday, one of our routine trips to the neurooncology suite of the cancer center, to the gleaming top floor, won't be smiles and hugs, pregnancy news and baby photos, loud jokes and silent solidarity.

One day, someday, probably, one of our routine trips is going to end in an elevator going down, and we won't have jokes to share. We will have hopeless fear, and directionless anger, and I will keep my back straight and smile casually and speak as though I don't feel them, because I will be the one being brave. I will be the one being strong, offering my unfailing support, again.

I will have to make different choices than seven years ago, when I had the luxury of blind faith that all would work out for us, the young, the romantic, the immortal.

Seven years, three months, and two days is a long time to live under a weight that turns the cancer clinic into a routine.

It's the span of my adulthood.
It's the blink of an eye.

I'm planning to bring M's doctor a baby gift when we next return, early this time, to ensure we see her before the baby arrives. The sort of hand crafted gift I give my dear friends. The dear friends who have seen you through the hardest times and always greet you with a smile, as though the hard times will never come again. But they will. We all know they will.

I will never be ready.

I am always ready.

I live in simultaneous hope and fear of the day I know exactly what to say to make a scared teenaged girl smile.

Just Fine

Three days before he asked me to marry him

I tell people M was diagnosed with cancer sixteen hours after we got engaged.

That's not really true. It was sixteen hours after we got engaged that he had the seizure that brought him to the ER, and from there to the CT scans, and from there to the MRI, and from there to the surgery that diagnosed him with brain cancer. The whole process from seizure to diagnosis took almost exactly five days. But from the moment I got the call that he'd had a seizure, part of me knew.

I'd been watching his symptoms develop slowly for the better part of a year. They were things you'd almost never notice. Things even his doctor, doing a neurological exam, didn't find in any way significant. But they were significant to him, in ways even he didn't really catch.

Eight months before the seizure: "I keep tweaking my left ankle when I run at night. I never used to do that. Isn't that weird?"
Six months before the seizure: "I used to play this song better, but the pick just won't stay in my fingers. Maybe I forgot how to play the guitar?"
Three months before the seizure: "I don't remember being so bad at base running! My left leg just won't quite do what I tell it to. I must really be out of practice."
And then, when I'd finally persuaded him to ask a doctor about it: "He thinks I probably just have a pinched nerve or something. I'll stretch more, and it'll be fine."

That was about two months before the seizure.

July is a big month for us. On July 4th, we got engaged. It was the one day we truly got to celebrated being engaged, even though it happened late in the evening.

On July 5th, M had his seizure. And we stopped celebrating being engaged and started going into emotional lockdown. Alternating denial and fear and a lot of figuring out how to fit both sets of our parents, who had never met, into our home so they could stay for the surgery.

And on July 10th, seven years ago today, the surgery. The endless awful hours of it, and then learning that M had stage four astrocytoma, an aggressive glioma that would likely take his life within two years.

It's much more comfortable to remember the other anniversaries.

May 23rd is a good one.

Yesterday, M had another MRI. As you may recall from a month ago, his last MRI wasn't exactly ideal. Instead of waiting our usual six months for a repeat, the doctor asked him back in eight weeks.

And if your math skills are functional, you'll note I said that he had another MRI yesterday. So what happened, right? Why did he have one in four weeks instead of eight?

Seizures. Seizures like he hasn't had in five years. An MRI that showed something and then seizures. Plural.

So his doctor wanted him back sooner, in case whatever that something was had started growing at an alarming pace. Or in case the last set of images had missed something. Or in case of any number of things, because after five years of having no seizures beyond the occasional micro focal seizure, that's alarming.

Here's the thing about seizures- everybody has what's called a "threshold." There's a point when the different things that can cause seizures- heat, medication, pressure, infection, blood sugar. fatigue- do. For everyone. People who get them regularly simply have a different balance of pressures already affecting their brains. And there are medications to manage them.

So yesterday we went back to the hospital to spend six hours getting MRIs and talking to the doctor.

And I'd like to say a very special couple of words to M's neurologist, who I love, and respect, and like personally as a human being.

WHAT THE HELL IS WRONG WITH YOU???? Seriously- you sent in two med students to do the most in-depth neurological exam he's had in SIX YEARS while we sit around reading everything and anything into it? Were you getting a new baseline? Were you trying to teach them how brain tumors manifest? Were they supposed to be learning how to keep a straight face when they might be looking for signs of brain cancer?

M looked at the fourth year med student, who administered the rigorous tests while the first year student studied her. And I studied the first year student. What the hell does she know? What is going on? What the fuck is going on????

And then, finally, our beloved neurooncologist returned.

M's new scans were identical to the last. They were, to use the same word we've been hearing for six years, stable.

Bald from chemo and radiation, but totally handsome that way

You see, when M was diagnosed with an inoperable stage four brain cancer, we did everything the medical team knew how to do. And more. We did everything. And what they told us then was this:

This kind of brain cancer is never cured. You'll never be in remission. You'll never be all better. The best we can hope for is that nothing changes.

Because he could live a perfectly normal life with the symptoms he had. Because if there's a stable tumor in his brain, it's not actively hurting him. It's not growing. It's not killing him. It's not doing anything. It is stable.

But then, miracle of miracles, his scans weren't really stable. Instead, they got better. His neurooncologies, not the one he has now, but his first, beamed with joy and pride and accomplishment every time he saw a scan.

They weren't stable, they were improving. When you looked scan to scan, you couldn't see a difference. But when you looked over the course of years, they were better. M's tumors were continuing to die, or shrink, or do something that made them less visible on MRIs. And that was unprecedented. It was spectacular. It was beyond all hope.

Which brings us to now.

Now, for the last several scans, things had appeared identical. No change from scan to scan. But, as of last month, there is something. A tiny, minuscule shift that when viewed over years instead of months, shows those vague areas that used to be solid white in the MRIs becoming a little bit cloudier again.

So what the hell does that mean?

It could mean any number of things. It could be that scar tissue is starting to develop around the dead tumor. It could mean that yes, the tumor's not dead, and it's starting to recover from being irradiated and poisoned. It could mean nothing at all.

Because at this rate of change? Everything is still stable. Just in case, we're getting scans every three months instead of every six. That's something we can definitely live with.

M and M on the beach to watch our 6th 4th of July fireworks since getting engaged

And the seizures?

Turns out the medication M takes to balance the side effects from his anti-seizure meds... lower your seizure threshold. Other things that lower your seizure threshold? Stress. Lack of sleep. Anxiety.

Three things he's had in spades since last month, when his doctor saw something and we started wondering if maybe it was the sort of something we've tried not to think about for seven years.

So he's going off that medication that might have contributed to seizures, raising his dose of anti-seizure meds, and focusing on getting some decent sleep. Which is a much easier thing to do now that we know he's still stable.

And as I continued running through scenarios in my head of what we would do if M needed brain surgery in another couple years, or when it would likely be, or what it means that the area is still changing, albeit at a ridiculously slow pace, it hit me.

This? This is the opposite of how we survived.

The way we got through brain cancer when it hit us was pure and simple- confidence. We never doubted. Yes, the medicine was essential. Yes, without the arsenic trial this would have been a different story. But what kept us going through all that? Confidence.

We never hesitated. I told M what I told everything else. "You're going to beat this. You're going to be just fine. You're going to kick it's ass, and then it will be history."

I still believe that. I need to stop preparing for alternative scenarios. There are no alternative scenarios.

So what if, medically, nobody can say that M is "cured?" So what if his "stability" is no longer the unprecedented improvement of years past?

He's fine, and it's time to stop worrying. Time for me to stop worrying, and time for everyone else to stop as well. The worry hurts. It brings doubts. And with doubts come excuses.

The only thing changing from here on out is that M needs to make his health a higher priority. He needs to make the time to get to the gym, he needs to eat better, he needs to treat his body like it's the miraculous POA it is.

M's stable, and that's all we really need to know.

The whole fam-damily

I'm going to keep my eyes open for those other signs. For new symptoms he might not register but that I never miss. I'm going to keep logging events in the binder because that's important to do, and I'm going to keep asking questions when we see his neurooncologist.

Who gives a fuck if you're "never cured" when you have stage four astrocytoma? Who the fuck knows anyway?

M's as cured as it gets.

So no more worrying. No more doubting. No more stress.

When the anxiety comes creeping back, I'm going to tell it what I've always told it, and then leave it behind.

He's just fine.

Waiting

Our sixth anniversary, and I love this man more than the day I told him if he didn't propose to me I would do it first.

A few weeks ago, M and I celebrated our sixth wedding anniversary. We flew to Santa Barbara for a friend's wedding, and romanced and danced and laughed and had so much fun I can't imagine cramming it into a single blog post. But I'm not writing about that today.

Celebrating love in a corner of paradise

Well, I am. Tangentially, anyway.

This past weekend, I went to Blog U- a crazy awesomesauce smorgasbord of networking, education, parties, constant mutual appreciation, and more alcohol than your average frat party. But I'm not writing about that today.

Getting to know some of my favorite bloggers

Or maybe only a little.

And when the whole thing was over, I went to an amazing lunch with my sister, who's friend's car was broken into and robbed of all my luggage- all my nice jewelry (anniversary presents, birthday presents, Christmas presents...), the shoes I wore on my wedding day, half my bras... But I'm not really writing about that today either.

Oh wedding Fluvogs... how I'll miss you.

This weekend was an insane high followed by an insane low, and that's what the wonderful people sending me photos they'd snapped of the jewelry that might appear in a Baltimore pawn shop kept saying.

Because yes, it feels very much like we don't do the middle in our family. Me and M, we only do highs and lows. We only do blacks and whites. We have no shades of grey.

At least, not usually.

The truth is, I thought that Blog U was my high after the awful low. For me, the terrible low was Wednesday through Friday, so of COURSE the weekend would be amazing, wouldn't it?

On Wednesday, as those of you who check in on me so often on Facebook know, M had his every-six-monthly MRI.

For the last seven years, we've been watching the pictures of M's brain change. Cloudy areas becoming clearer, contrasting areas shrinking, bright white shapes in a sea of gray fading away to a quietly benign nothing. At first the MRIs were every eight weeks, then every three months, and now- only twice a year.

And so on Wednesday we had our summer scan. And as M's doctor, who has only been with us for three of these, began describing the scans, we heard something we had never heard before.

Such a useless word, she used. "Something."

"Something" that probably meant "probably nothing." "Something" that meant "who the fuck knows what this means but it's there."

"Something" small enough that we weren't talking about getting back on chemo, we were talking about looking at the big picture in a new way.

M and I have talked many times about "when." This doctor, she likes "when." She thinks it's realistic. She says "when" the tumors start to grow again, not like it's some kind of death sentence, but as though it's an inevitability. And I respect that. Inevitable doesn't mean it's coming at you like a freight train, it means that someday, it WILL happen. The way that someday, you WILL get food poisoning. Or you WILL get trapped in the rain with no umbrella. Or you WILL put your foot in your mouth in front of somebody you respect and admire.

And I guess whenever we talked about "when," we assumed it would be nice and clear cut. "Oh look at that, the cancer is growing again. Time to get you back into radiation."

But it turns out this was utterly naive.

"When" means something different every day.

The doctor told us that, frankly, brain surgery is a whole different world now than it was seven years ago. Seven years ago, when M's brain surgeon decided not to remove his tumors, because it was just too dangerous.

"Now they've made these huge advances in mapping, and the techniques for brain surgery have completely changed," she said. "And so on Friday morning I'll be talking to the hospital tumor board about returning to surgery, to remove those tumors."

"Tumors beget tumors," she said. "And I'd like to get their opinion on whether or not it's time to go in and get them out."

So I stopped eating, at least when I was alone, and as much as I lied to my husband and to Grandma and to my parents, I worried.

Of course I fucking worried. And I deserve to worry. I am a human being, and it doesn't matter if it's my job to be somebody's emotional rock. My whole family's emotional rock. It doesn't matter if I know intellectually that this meant nothing and that there wasn't a damn thing I could do about it for days anyway. Of course I worried.

So I stood in the airport at the gate, calling and calling and calling M's doctor's office, asking if the tumor board had made a decision. Because I had to make a decision. If M was having brain surgery, I wasn't boarding that plane. I was turning around and going home to lock it down and take care of things until everything was better again.

And finally, the doctor's office called me back. "The tumor board agrees this is probably nothing, so we're going to hold off on surgery. Instead we're going to get him back for an MRI in eight weeks. Does that sound good?"

No, it does not sound good. What sounds good is somebody dropping confetti from the ceiling and a man with a giant check coming out and announcing that I've been victim to some sort of prank and now they're going to reimburse us the cost of the MRI, my plane ticket, the food I didn't eat, and half a million for my mental anguish. THAT sounds good.

But this didn't sound exactly bad, either. What it sounded like to me was... we wait.

Because that's exactly what it means. It means we're back to waiting.

And the reality is we're not "back to waiting," because we never STOPPED waiting. We just forgot we were doing it for a while. We got so used to checking in with our friends at the hospital, our neurooncology team, and asking about their kids and joking about their pregnancies and reminiscing about old times... that was our routine.

Not actually waiting for another shoe to drop. We were so happy and confident and comfortable that we forgot that's what we were supposed to be doing all along.

So I got on the plane and I went to Blog U, and I drank more than I have in the past five years, because I needed to fucking celebrate, damn it.

"He's going to be just fine."

I deserved to celebrate.

M was just fine, thank you very much, and I could stop worrying.

Only I can't, because that's how it goes. When you're waiting, you can't stop worrying. Waiting is always the worst part. Waiting lets all the fears grow, lets them take over if you give them the space.

And so at Blog U, I reminded myself what it's like to wait. REALLY wait. I read an excerpt from my book at an open mic, about waiting. And when I got to the end, I felt myself tearing up.

Not because, as so many people came up to me and asked, worried whether he would make it.

I cried because I needed to hear the words I spoke then, seven years ago, and I needed to say them to myself.

"He's going to be just fine."

We decided to get married, to have kids, because you can't live if you're just waiting. A holding pattern isn't a life.

We could all die at any minute. A plane could crash, a car could spin out of control, a meteor could fall from the sky. Anytime, any one of us, anywhere, could have an aneurysm and collapse on the street.

We are all living on borrowed time, every minute of every day.

So waiting? It changes nothing.

If somebody told me when I fell in love with M that he would die in five years, I wouldn't have walked away. If somebody told me on our wedding day that we'd have seven years of pure bliss, and then he'd be shot in a mugging gone wrong, I wouldn't have taken off my ring. If somebody told me when we were thinking about getting pregnant that our children would lose their father before they could reach elementary school...

Yes, I would cry my fucking eyes out.

But I wouldn't have changed my mind.

Six years, eight months, one week, two days ago

So I hope M will excuse me if over the next months and maybe years I get a little more misty eyed when I snap a few more photos than in months previous. I hope my friends will excuse me if I prioritize date nights a little higher than girls nights. I hope my family will excuse me if I cry a little more for absolutely no reason.

Nothing has changed.

It was just really easy to forget that when waiting was so easy.

Everything with us is highs and lows. Waiting- that's a low. But celebrating six years of marriage- and exactly one month after his doctor decided we needed to talk about "something," seven years of survival. Those are highs. Those are enormous highs.

The way he nuzzles my neck or teases me for screaming when he walks through door and says, "Hello," the way he dances like a maniac through the night... those are highs.

Those are the same highs we've had every day for six years, eleven months, and four days.

We just forgot that in those six years, eleven months, and four days there was all this waiting. All this exhausting awareness of the unknown. It's been there all along.

Nothing has changed.

He's going to be just fine.

The Binder

The binder

The day I got engaged was one of the best of my life. Not only because of the engagement, that came at the end. The whole day was beautiful and loving and warm and sunny and spent with my favorite person in the universe. And then he ended the day by proposing, which was a cherry on top of the enormous chocolate fudge banana split that had been my day.

The next day was the third worst of my life. Within a week of getting engaged, and experiencing the second worst, I was learning a whole new world of vocabulary. "GBM," "glioma," "intrusions."

I was already pretty brain tumor aware. I'd been misdiagnosed with not one, not two, but three brain tumors. Of course, each time a doctor bullied me into getting an MRI or CT scan, the answer was the same. I did not have a brain tumor. I had painless ocular migraines, or synesthesia, or dysautonomia. All neurological problems without tumors to blame them on.

So when, in the winter before we got engaged, my future husband complained about problems with his left arm and leg, I worried.

"You should see a doctor," I said.

"It could be neurological," I said.

But of course it wasn't, he replied. He'd pinched a nerve. Or he'd forgotten to stretch properly. Healthy, strapping, brilliant, baseball playing engineers in their early twenties didn't have neurological problems.

He was happy. He was active. There was nothing wrong.

It took me months to convince him to see a doctor. I wasn't really worried. I mean, he was right, wasn't he? We were living together by then, and I saw him every day. I didn't see anything wrong with him. But when he came back from softball practice and complained that his left leg just didn't quite move the way he wanted it to when he was running bases... I worried.

So he saw the doctor. The doctor performed what were no doubt the standard tests. And at the end of the exam, he shrugged away M's concerns.

"You're a healthy guy. I'm guessing you have a pinched nerve. We could do a neural pathway test, just to be sure where it is, but really what you need to do is stretch better."

"That's what I figured," M no doubt replied, and they agreed the neural pathway test was a waste of time, energy, and money.

Of course, what the test would have found was that the thing blocking his neural pathways was in his brain. And that probably would have let to a CT scan. And that would have shown what we found instead the day after we got engaged.

Don't get me wrong, I'm not complaining about this turn of events. Because M was tied into a terrible HMO, having the opportunity of an emergency surgery to change medical teams got him superior care. Because of M's absurd ideas about honor and nobility and commitment, he would not have proposed to me if he thought he was about to die. Because our engagement was followed by trauma and chaos, our families never had the opportunity to doubt us as a couple, despite our differing religions, lifestyles, and backgrounds.

We were lucky. Unfathomably lucky.

Hardly anyone is ever so lucky.

So for Brain Tumor Awareness Month, I'd like to share something with you. A little piece of what it means to be aware of brain tumors. So aware that they swallow your entire life and become the one thing, the only thing, you are certain you understand anymore.

This is The Binder.

That week after our engagement, when I was learning to speak Brain Tumor-ese, my future mother-in-law started taking notes on a legal pad about what was happening. Recording it, in case the information would come in handy.

I rolled my eyes at her, I'm sorry to say. Or I would have if I wasn't trying so hard to be compassionate and understanding of everyone else's feelings at the same time as my own. I was angry at everyone, I thought their acceptance of M's prognosis would effect him like a contagion, and if he caught even a hint that they expected him to die, he would. But taking notes seemed harmless enough. They might even come in handy.

I had no idea how handy they would be.

Before M even began treatment, the legal pad had morphed into an enormous binder. Everything we could need, anything anyone could need, it was there.

It's still there.

It lacks a table of contents, and the past seven years have faded the labels on the tabs,
but I know what's in there.

Every six months, we go back to the hospital for another set of MRIs. And every month, I lug this enormous thing with me.

Those pink spots are bits of tissue from M's brain tumors.
Hard to be more aware of something than when you're literally holding it in your hands.

It's both an organizational nightmare and wet dream.

Every doctor, pharmacist, therapist, social worker, nurse, patient liaison, insurance representative, etc. we ever
needed to interact with or ask something of, ever.

It still has everything we could ever need, all the information we've ever collected. All the data. All the forms. All the files. Everything.

Every medication, every dose

It's not just the technical details, either. That legal pad of Grandma's became my confidante. M never read the binder- so I was more honest with it than I was with him. If I thought he was depressed, or struggling, or weakening, it went into the binder. And then I could bring it up casually with the doctor, M never being the wiser for my worries.

Reams of pages of the journal, dates and times of seizures, appointments, what we talked about, mental state,
everything.

And it was more than that. It was a constant reminder of everything we had to do, and of everything that Brain Tumors mean. Lab reports. surgical reports. MRI reports. Doctor's notes on official hospital documents. Discs of MRI images of white shapes inside my husband's brain.

Booklets titled, "A Patients Guide to Understanding Brain Tumors," and "Temodar: Your Questions Answered." As time wore on and the binder became heavier and heavier, changes had to be made.

I got a second binder.

I still live with these. And in a few weeks, when it's time for M to go back for his every six month check up, it will come with me. Just the one- the second binder is full of information either for only our references or that has outlived its practical usefulness. Until, as his doctor likes to warn,  "when" his tumors grow again.

Personally, I like to believe "when" means when he's ninety, dying from something totally unrelated, and his weakened immune system allows new tumor growth.

I could live with that.

This is what Brain Tumor Awareness is.


---------------------------
Click here to read about my engagement and what came after.
Click here to read more about "when."