October 8, 2014

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.


  1. Girl you've got me crying!! Stop that!! Your writing is mesmerizing. You hold my attention like that of my favorite authors. I'm so glad your husband is here today with you and that you have succeeded in surviving the past 7 years together, and here's wishing and hoping for 70 more good, healthy years to come!

  2. Simply gorgeous! I don't know what else to say except I just adore you! xoxo

  3. I wish I lived next door to you. How amazing of you and M to think of others even when your own hearts are already so fragile.

    1. I think showing kindness to others helps us face uncertainty. Compassion is so much stronger than fear.

  4. Beautiful writing and just beautiful souls, I can only hope you get an opportune time to talk with the girl you saw. I know it's a long shot, but I can hope :). BTW, I love the phrase you used about being able to feel M's dimple when he smiles in the dark, :) awesome

  5. Having heard part of your story at BlogU makes me appreciate you sharing this so much more. It's beautifully written, horrifying, and so just matter of fact - just like life and disease and all of it. Saying something as stupid as "I hate cancer" seems too obvious. My husband had a stage 2 melanoma removed from his back when my son was 2 weeks old. While I was hopeful and hopeful and so in love with both of them, my mind went to wondering how I'd single parent. I'm mostly okay with that now, I think... we lost his mother to pancreatic cancer two summers ago. My next door neighbor is battling the same now. Sigh. Hugs to your and your family and dude- you so can write. I'm glad I know you.

    1. I'm so sorry. Pancreatic cancer is a beast. :(
      "I hate cancer" is a totally legit thing to say, any day.

    2. To jump on the "I hate cancer" train, I'll add that my husband's mom was just recently diagnosed with stage 4 pancreatic cancer. "Beast" is really the perfect word for it. Hugs to you guys <3
      Supermommy, it's hard to put into words just how much I admire you, your husband, and you guys as a team. Thank you so much for another mind-expanding post!

  6. Thank you Lea. A beautiful piece of your heart shared for me to enjoy and ponder and shed a tear and yell at my kids becod i was trying to read! hey hav u been to new zealand already??

    1. We have! We honeymooned on Doubtless Bay. :)

    2. very nice a beautiful part of our country. we live in the nth is 1.5 hrs sth of ackl and hav a bch house at waihi bch. i hope one day u come back to nz. tho it is wayyy too far and thr r plenty of othr places in the world. may your husband be truly healed. xo

  7. Beautiful and sad and sweet and moving & everything else. I love this line: "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."

    I've been in that place of wanting to reach out and tell someone you understand, you get it & it's gonna be ok, but then thinking better of it. Maybe you're wrong or they won't be receptive or you've overstepped. It's tough, but I think if you move through the world w/ kindness like you did in chatting w/ the girl, you're doing the right thing.

    My husband would have said something similar as we walked to the car. One little line that sums up all my thoughts and feeling and fear and hopes. When mine are all jumbled he is so clear.

    Here's to all regular doctor's visits!

    1. I'm so glad you liked it. And I'm glad you've got a husband who shares those head spaces with you. It's amazing what a comfort that is!

  8. Just finished reading your entry with tears in my eyes. Oh how I could relate to each and every word you wrote! My Dad was diagnosed with Stage IV Glioblastoma in October 2014. It's amazing that it's only been a year, as things we now do to beat this cancer seem so normal and routine, almost like we've been doing them our entire lives. We just had his one year MRI and everything is stable! I absolutely LOVE reading stories like yours and so incredibly happy to hear your husband is still doing well!

    1. I'm so glad your father is doing so well! That one year visit feels like being reborn, doesn't it? :)



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