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All the Way to the End, All of Us Together

Our first day here at Disney World, we tried to go on Big Thunder Mountain Railroad, but it was closed “for refurbishment”, so we decided to try Splash Mountain instead.  In addition to being a ride that was right there where we were, it promised to cool us off a bit.  Going from 30ºF to 90ºF in the space of a day was a bit rough on everyone.

Carolyn and Uncle Jim sat in the front seat of the log boat, and Rebecca sat between me and Kat in the next seat back.  Things started well enough as we splooshed and bobbed around bends, but fairly near the beginning of the ride, you get a glimpse of its (sort-of) end: a fifty-foot drop down to a splash pool.  Rebecca, seeing a log full of people fly past us down the ramp, the screams of its riders trailing in its wake, wasn’t at all happy.  She switched instantly from being amused at the water occasionally splashing her parents to scared of what was going to happen.

The various animatronic displays along the way helped distract her, but she kept returning back to her fear of the big hill.  Kat and I soothed her as best we could, telling her it would be all right.  She generally accepted this, calming down until the next time she remembered the big hill that lay ahead.  She never cried, exactly, but the fear was still there, an almost physical thing at times.

“I don’t wanna go down the big hill!”

“Honey, it’s all right.  It’s going to be okay.  We’re right here.  Mommy and I will keep you safe.”

“No, I don’t wanna, it’s too scary.”

“I know, sweetie.  I know you don’t.  But there’s no need to be afraid.  It’s coming and it will happen and then it will be over.  Try to enjoy all the little shows before.”

“Daddy, please let me get off the ride.”

“I can’t, honey.  If there was a way to get off, we’d take it, but there isn’t.  The ride goes where it goes, and we’ll go with it, together.”

“I wanna get off this ride!”

“I wish we could get off, Rebecca, but we’re on the ride now and we have to take it all the way to the end.  I know you’re scared, but we’re right here with you.  We’ll keep you safe, sweetie.  You don’t have to be afraid.”

We’d arrived at the bottom of the last climb, the one that would take us to the big drop.  She looked up the ascending tunnel into the bright, bright light streaming down, and shrank back, quivering, her eyes wide with fear.  She knew the moment was close.  I leaned in next to her, keeping my voice level and light.

“I know, Rebecca.  I know.  I know you’re scared, but it’s going to be all right.  It’s going to be all right.  It’ll be all done very soon.  Mommy’s here, and I’m here, and we’re with you until it’s over.  We’ll stay with you all the way to the end, all of us together.  We’ll be right here with you.  Always.”

The log was drawn up the hill, the drop coming closer and closer, relentlessly.  My arm around her shoulders, Kat’s arm around her shoulders, both of us hunched toward her tiny, trembling body pressed against our sides; and as we came to the precipice, she shut her eyes and squeezed our hands tight.

On Writing

Our situation, and my posts, have been the cause of sleepless nights and fallen tears for a great many people.  In some ways I feel bad about that; it occasionally feels like I’m forcing our pain onto other people, which isn’t exactly a friendly thing to do.  But I know you’re here because you want to be here for us, and here, words are how we commune.

But why, I am occasionally asked and occasionally ask myself, am I writing about Rebecca’s cancer instead of doing other things?  There are a number of reasons.

Part of it is that I’m creating a precisely timestamped chronicle for later, the historian in me asserting itself.  This is where a lot of my tweets come from, as well: the desire to record something at the moment, so that later I’ll be able to say whether X happened before or after Y or how many days apart two events actually were.

But it’s also for Joshua, if he wants to know more about his sister and what happened to her, when he’s older; and for Carolyn, if she ever wants to revisit this time or see it from my perspective, to compare against her memories.  And perhaps for others, if I ever decide to collect these fragments into some sort of longer work.

More importantly, writing about what’s happening and how I feel about it allows me to organize my thoughts and give some structure to what’s happening.  In a situation where so much is beyond our ability to do anything at all, this is something I can shape directly.  It allows me to feel some small measure of influence.  It lets me face my fears by naming them.  It helps me get a handle on a few shards of this overwhelming thing that defies any real understanding.

And of course I’m grieving online.  I do that here so that I can put it away elsewhere, so to speak.  When I’m with the kids, I can be there for them as the father I’ve always been and hope to keep being, rather than the hollowed-out ruin I sometimes feel like.  Grieving here, through the words that come to me, makes that easier to do.  So I write and tweet.  A little bit of pressure release.

But most of all, I am sharing Rebecca with you, with anyone who will listen.  We’ve always felt it’s up to our kids to become themselves and then bring themselves to the world in their own way, to meaningfully affect it and be affected by it.  In the words of Khalil Gibran:

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

We’ve always meant for our children to fly free of their own accord, on the arc of their choosing, when they were ready.  Rebecca will almost certainly not have that opportunity.

So now we are her archers.  In the Web, I have a bow that can send her arrow all the way around the world.  If her flight is to be short, then let it be far, a trail of purest fire etched across every sky, more beautiful and wondrous than any comet could ever hope to be.

The Evening

We had guests for dinner, as we often do, a house full of squealing, laughing children and their grownups, preparing dinner and trying to figure out who would get stuck with setting the table.  We’d all gone up the street to the elementary school to test out their new playground equipment and try to fly a kite in the random spring breeze, running around an open field and trying not to slip in the mud.  Now we were back and ready to eat.

Rebecca played and laughed with the other kids, all obvious traces of our conversation earlier that day erased by the simple joy being a five-year-old, living wholly in the moment.  Playing impromptu tag, hiding around corners to shout “Boo!” and cackle with delight, singing pop songs and musical numbers with her sister and friends.  Because for all that’s going on, you would never know to look at her that anything was wrong.  We can even forget, from time to time.  She lives just as she always has, full of energy and smiles, and we’re determined to keep it that way as long as we can.

Eventually, it was time to take the little ones up to bed, which Kat and I divided up with a family friend.  Suddenly, I heard Kat’s voice breaking.  She was in the nursing chair we still have hanging around the house, Joshua on her lap, ready to read his bedtime stories.  Rebecca was standing next to her, still and calm.  I sat on the footstool, my legs just behind Rebecca’s.

“Rebecca told me she’s scared that she’s going to die and be all alone.  Baby, we will be always be with you, always always always.  You will never be alone.  Okay?”

My hand was on Rebecca’s back, tears in my eyes but not on my cheek.  I asked if she understood what Mommy had said.  She nodded, her eyes cast down in thought.  We thanked her for telling us what she was feeling, for trusting us.  She nodded again, and turned to look at me.  Looked into my eyes, and saw everything that was there.  Gave me a sad, affectionate smile, put her arms tenderly around me, and kissed me gently on the cheek.

My little girl, my child, trying to soothe my pain.


Later, as she lay under her princess blankets to read her own bedtime stories with a family friend, I came in to tell her good night.  She was holding a book about kids who have cancer.  We have such books, now.  I perched on the edge of the bed next to her and smoothed back a riot of her curls.

“Can you tell Daddy why you picked this book to read?” our friend prompted.

“Daddy, I’m reading this book because it will help me be strong—”, she curled her arms in classic strongman pose, then dropped them, “—and brrrave.”  She beamed up at me.

I smoothed back another curl, affectionately tweaked the end of her nose, and looked directly into her eyes as I said, “Sweetie, you are already by far the strongest and bravest person I have ever met.”

A wide grin, a little chortle, and then she flung her arms wide.  I leaned down and she leaned up, our arms circling each other, squeezing just hard enough.  I held her lean, solid weight close, her body strong and light, and for those moments I felt no sorrow, no fear, no pain, not for her and not for me, not for any of us.  There was just a calm peace rooted in the strength of her love and the bravery of her heart, and nothing else.

The Truth

We asked Rebecca to sit with us on the half-couch situated against the short wall of the child psychologist’s small office.  She clambered up into Kat’s lap, facing toward me, looking at me sidelong with her unique mixture of shyness and impishness.  I was already having trouble drawing my breath, arrested by her affection for and trust in us, and pierced by the knowledge of what we were about to do to her.

“Honey, we want to talk to you about something.”

Her eyes dropped, her face melting to something wary and withdrawn.  She knows, I thought.  She knows, and we have to say it anyway.

“Remember the bad rock?”  No expression on her now as she began to curl up, slowly, so slowly.  “The tumor in your head that the doctors can’t take out?  And you know how Mommy and Daddy have been looking for special medicine to make the bad rock go away?”

We waited for a nod, some signal that she understood.  After a moment, her eyes darted to the side as if looking for escape routes.

“We haven’t been able to find special medicine, sweetie.  We’re still looking, but we might not be able to find any.”  Tears were streaming down Kat’s face.  Down my face.  I could barely see Rebecca’s face, she had lowered her head so far as she hunched forward, away from Kat, into the space between her parents.

In a small, choked voice: “Do you understand, honey?”

A pause.

Her head nodded fractionally, spasmodically.  And then her jaw started to quiver.  Silent.  Quivering more and more and her face twisting in anguish and then she started to wail.  She collapsed backward into her mother’s embrace, still curled into a ball, crying desolately, hopelessly.  Keening.

All three of us, sobbing and clinging to each other.

She had known ever since the tumors returned.  She had expressed her fear in a few whispers, soothed by our reassurances that we were still looking for special medicine, and now she knew we were telling her she was going to die.  She knew, and was terrified, curving her small body into a ball surrounding her pain as we tried to make a shield of our arms, futilely trying to protect her when the killer and the pain were already inside the shield.  Inside her, where nobody could get it out.  So our arms and bodies instead became a blanket inside which she could mourn her own life and try to cope with her terror of going away forever.

We wept what seemed like an endless ocean of suffering, but after a time, it started to ebb.  We could speak again, barely, and thought she could hear us when we did.  We had to ask her, even though we knew.  Even though I would given much to never say or even hear what was coming next.

“Are you scared, Rebecca?”

A nod through tears, her jaw quivering again.

“Can you tell us what you’re scared of?”

She wept again, unable or unwilling to say the words.  Kat and I choking on our pain and her pain as Rebecca sobbed with renewed terror, clinging to Kat and squeezing my hand in hers.

We asked her again, as gently as we could through our anguish.  And again, later, when we had all recovered enough.  And again.

Finally: “Baby, can you whisper it to one of us?”

She nodded, miserably.

“Who do you want to whisper it to?”

She pointed at Kat.  Shifted her head up and around.  Whispered, her voice so tiny and full of pain and fear and breaking into another wail:  “Of dying.”

I will never know how long we wept with her.  What we said to try to soothe her pain even a tiny bit.  How we tried to comfort and protect her.  I will always remember how utterly helpless and wounded and shattered I felt, the sick ache in the center of my chest.

Eventually the tears came to an end, as all things must.  She hadn’t moved from her place, curled up against Kat, still holding one of my hands.  Her face was clouded and stormy with the echoes of her tears, but there was some measure of calm.  It let Kat and me come to the same place, quiet and still in the shadow of all our grief.  We asked if she had any questions; she shook her head.  We told her we loved her.  She whispered, almost but not quite crying again, “I love you too.”  We kissed her, almost but not quite crying again.

And then it was time to tell her sister.

What Cancer Can Kill

Cancer is insidious, of course, but its tendrils spread in more ways than you might think.

(This is all true for pretty much any cancer, even the ones that aren’t aggressive and aren’t pediatric, but I’m the parent of a child with aggressive pediatric cancer, so that’s what I’m going to talk about.)

The most obvious insidiousness is the way that many cancers send out thin fibers, interpenetrating healthy tissue, hiding literally microscopic reservoirs in places it can’t be seen.  That’s bad enough, of course.  It’s what the surgeries and radiation and chemotherapy are meant to combat, and if they’re successful then we’ll have saved her life.

What’s almost as bad, from a long-term perspective, is how, for us as her parents and therefore for her, cancer shades everything that happens in our daughter’s life.  Kids are supposed to play and run and fall down and get scrapes and bumps and then get back up again to get on with life.  They’re supposed to push themselves too hard, get exhausted, catch colds, run fevers, build up their immune systems and their experiences.

But then here comes cancer, and we second-guess every part of that.  If she falls and gets a bruise, we have to watch it carefully to make sure it doesn’t blossom into a hematoma or worse, a side effect of the chemotherapy.  If she runs a fever, we have to keep an incredibly close eye on how high it rises, because fever could be the onset of neutropenia.  If she complains of a headache, we immediately wonder if we need to get her to an MRI to make sure the tumor hasn’t come back.

Or, you know, she might just have a headache, or a viral fever, or a scrape that will quietly heal up.

Even if a child is lucky enough to survive cancer, there is the very real danger that it could effectively steal their childhood.  We can’t just let Rebecca be a kid, however much we might want to do so.  And we do.  Oh, we do.  We always wanted our kids to have the chance and the time and the space to be kids.  To make mud pies, nail together scrap wood to make a fort in the backyard, wreck the kitchen trying to make a chocolate cake, properly learn to chop vegetables, climb trees and take gym class and wrestle with siblings and just be a kid.

And it’s hard.  It is so hard, because some of those things we have to just flat-out forbid her to do because of the risks, and other things we have to treat as way more serious than we ever would have.

There are no more mud pies, because tetanus is in all the soil everywhere.  Gym class is out, because of the risk of internal bleeding as the result of a normal fall.  We can’t just tell her to “walk it off”; now there’s three rounds of washing and antibiotic cream and two crossed bandages over the smallest of scrapes, which risks making all the kids germ-phobic and hypochondriac by example.

There’s no more “too bad about the cold, but at least it will strengthen her immune system”, no more shrugging off a low-grade fever with Tylenol, chicken soup, and a day in bed.  Now we own a hospital-grade oral/axillary thermometer, disposable probe sleeves and all, because if Rebecca’s temperature ever rises above a very precisely defined threshold, we take her straight to the hospital.  Not because we want to, but because the doctors have made it very clear that an elevated temperature might be nothing, or it might be the beginning of a week or more in the hospital as she fights to survive what would merely inconvenience (almost) any other child.  We can’t even give her Tylenol, because its magic fever-lowering properties could mask a much deeper problem.

For that matter, we’ve always had a relatively lax attitude toward germs and allergens.  We didn’t let the house become a pigsty by any stretch, it’s not like we were smearing them in filth; but now we have hand sanitizer bottles mounted on walls all over the house and two high-grade high-capacity dedicated HEPA filtration units.  Not because we want them, but because our daughter might one day need them.

Helicopter parenting?  Please.  Try NSA parenting.  What’s more, try it even while you hate every inch of it, because it’s forcing you to be the kind of parent you swore you’d never be.

We want our kids to learn that cuts and bumps and bruises are part of life and something you shake off and move on from.  Instead, we risk teaching them that cuts and bumps and bruises are sources of deadly danger, something to worry about and obsess over, something to avoid at all costs.

Sure, we can talk about everything with them, and we do, but children pay more attention to what you do than what you say.  We try to balance things out, find ways to show that life is more than dealing with cancer, and fervently hope that they learn the lessons we want them to learn instead of what we’re afraid they’re absorbing.

I know it’s possible to do right, I do.  I’ve seen it done before, and lived the results.  I know that we’ll do our utmost to make it happen.  It’s just so very, very hard not to constantly worry that even if we do save her, it will be at the cost of her childhood, and the childhoods of her siblings as well.

Care and Strength

My last entry about Rebecca and her chemotherapy was unexpectedly—well, I suppose “popular” is the technically correct term, though it carries a lot of positive connotations that I really don’t think apply.  It drew a fair bit of response and social-media sharing, anyway.  As a result, I wonder if I left new (or even returning) visitors with the wrong impression.

So let me be clear: Rebecca is not necessarily dying soon.  We don’t have a “time left to live”, not even a hint of it, because the goal of her treatment is to eradicate the cancer and give her many, many years of life.  So far, we seem to be on track for that, though of course we can never really know (but then, who can?).  Her outburst about not ever being eight was not because she’d been told that she might die soon.  We were deeply shocked to hear her say it.  We know that kids hear more than we think they do, and we know she’s whip-smart, which is why we tried very hard not to talk about her survival odds in her presence.  Still, it’s easy to think that someone of Rebecca’s youth doesn’t grasp the idea of mortality.  We thought that she knew it was serious but not that her life was in ongoing danger.  We were wrong.  A few days ago, she told Kat that she’s afraid to die because it would hurt me forever.  She’s not wrong.

Then again, given her age and intelligence, maybe she would be having these sorts of thoughts anyway.  We’ll never know if it was forced on her early by her cancer, or if in a world without cancer she would have thought the same thing at the same age.  It’s too easy to put a “because cancer” label on every moment of breathtaking insight, every time she steals our breath with her wisdom and her fears, every outburst of irrational rage.  We try really hard not to do that, because doing so cheats her of her agency and keeps us from seeing her for herself in all her facets.  We have a child, not a patient, and if it seems like that would be an easy distinction to maintain, it isn’t.  Not even to those who have lifelong experience maintaining it.

That said, most of the time she’s a normal five-year-old kid, as full of joy and mirth and energy as ever.  She’s tolerating the chemotherapy pretty well; her side effects so far are minimal, with no vomiting or other major GI problems, and she even still has a mostly-full head of hair.  Sometimes she gets listless or feels wrung out after treatment, but not always.  She had a bi-weekly intravenous treatment yesterday, in fact, and after dinner she was charging around the house with her brother and sister, laughing like a maniac the whole time.

And we let her, even though we probably shouldn’t have.  Her treatment yesterday went fine, and her blood test came back with some really great numbers.  The down side was that when we mentioned she had rebuilt her physical strength and skills to the point where her gym class coaches wanted her to move up to the pre-team class and start coming twice a week, the oncology team had to give us some bad news.  One of her chemotherapy agents tends to weaken bones during treatment, and also multiply the chances of internal bleeding after blunt-force injury—like, say, falling off a pommel horse and striking the mat with her head.  Or possibly fracturing ankle or leg bones with a dismount landing, or splintering vertebrae in a somersault.  So no gymnastics, they said.  Or, more accurately, they said that we have a choice: we can stop the gymnastics or stop the chemotherapy.

We cried a little bit as we told her, knowing how much she loves gym class and being there with her best friend.  Rebecca did not cry.  She just looked sad, and then insisted she only wants to go to school, not to gym.  We probably cried a little bit more at the near-certainty that she was lying to try to protect us, which is heartbreaking all on its own, just as it was to hear of her fear of hurting me forever.  We should protect her.  Never the other way around.

Yet another case of three steps forward, two steps back.  Just when we thought we were going to be able to add another bit of normalcy back, that door was closed to us.  In some ways that makes it even more frustrating, to see the goal so close ahead and then watch it slip far away.

I wish we could say that we are unique, or that our situation is as terrible as it ever gets.  Neither is anything remotely like being true.  Thousands upon thousands of children the world over are afflicted with life-threatening conditions like cancer.  Some of them have much better odds than Rebecca; others have far worse.  Some lay in bed all the time, without the energy to sit up, let alone play with siblings.  Some have no immune system left, others no appetite at all, still others live in constant pain.  Some are already terminal, and if you want to know what I believe is the absolute hardest thing a parent can ever do, it’s to tell your son or daughter that they will die very soon, and then sit helpless with them and their siblings as they do.  Superman Sam’s parents recently went through that hell.  They had to bury their child’s body and stand at his graveside with their other children.  As thousands of parents must, every day.

I cannot imagine how they survive, a month now after their son died.  I know how they survive, but I can’t imagine doing it myself.  I can’t imagine finding the strength to do it, even as I know that I would, because I would have to.  That’s what I tell people when they say they could never be as strong as us in this situation: yes, you could.  You would.  You’d do it because you had to, and wish hard for the day that you could stop.

So yes, our lives are much different and demand more strength now, and we often have to hear and do things that break our hearts, but it could be so very much worse.  We have hope where too many are long past that point, support and love where too many have little of either.  Our difficulties are like a mill pond compared to the ocean of suffering that others endure.  If you would spare a thought or a prayer for our difficulties, spare ten for theirs.  Spare them more tangible support, if you can.  All we have are each other, and only we can help those who so desperately need it.

The Choice

Last night, not for the first time and probably not for the last, we made our five-year-old choose between drinking poison and having us force it down her throat.  We did so calmly, patiently, quietly, never raising our voices or becoming angry.  We’ve had too much practice at this to make the mistakes of the early days.  Perhaps with more practice we can somehow find a way to make it a game, some way of making it all easier.  For now, we simply let her know, with quiet patience and love, that this is not optional, and if she doesn’t take the poison herself, we will make sure it gets into her.

It isn’t always a long struggle.  Some days she poisons herself without complaint, getting it over with in order to get on with life.  But not very much, of late.

The poison in question is temozolomide, a chemotherapy agent that’s specifically used to treat brain tumors.  I once read the label, with its biohazard trefoil, and stopped when I saw the word “cytotoxin”.  That means “cell poison”; it attacks cells that are dividing, as cancer cells always are.  But it attacks all dividing cells, not just malignant ones.  A growing five-year-old has a lot of dividing cells, and we are poisoning them all.  We just hope that we’re poisoning the cancerous brain cells more than other cells.

But her brain is trying to grow, too.

Temozolomide is an oral medication, usually in capsule form.  However, for kids who haven’t learned the trick of swallowing four large capsules in quick succession, its toxins are suspended in a gooey liquid compound that tastes vile.  I know; I tasted it, so that I could better understand her struggle.  Worse still, it can’t be flavored.  We’ve asked—begged—more than one pharmacist, but it cannot be combined with flavoring agents.  So she takes her poison straight.  At home.  For days at a time.

When she asks why she has to take something that’s “too icky”, we remind her (even though we know she knows why, just as we know why she asks) that it’s to keep the “bad rocks” from coming back.  That term is a holdover from when Rebecca was three and Kat had to have some masses removed from her abdomen, and “bad rocks” was the best way to explain to Rebecca what was being taken out of her mommy.  We thought she was too little to have to worry about cancerous growths, so we simplified things to make sense to her.  We still think she’s too little to have to worry about cancerous growths, but we can’t be euphemistic any more.

And if we ask her what will happen if the bad rocks come back, she says, “Not telling” in a small, scared voice.  This is actually a common reply from her, but usually it’s said with a smirk and a gleam in her eye, the one that kids get when they think they’re getting away with something and it seems like the biggest joke in the world.  When she refuses to tell us what will happen if the bad rocks come back, it’s because she understands all too well.  She understands better than we can bear.

We know she understands because when we were home between her surgeries and the radiation treatments, twelve days of having the family together in the midst of everything, Rebecca got very mad at her sister for not letting her play with a toy.  “It’s for kids eight and up,” Carolyn said, reasonably.  Rebecca, of course, found this line of reasoning lacking, and came storming into the kitchen.  “Carolyn won’t let me play with that toy and I have to play with that toy!” she shouted.  We explained that it was in fact for older children, and that she certainly might want to play with it, but that wasn’t the same as having to play with it.  “I have to!” she shouted again, her voice rising almost to a scream, breaking with angry, anguished sobs, “I have to play with it now because it’s for kids who are eight years old AND I’M NEVER GONNA BE EIGHT!!!

I can think back to the first days of her illness, lying almost unconscious with so many tubes leading into and away from her, with relative dispassion, as if analyzing a movie.  It might even seem like I’m doing that right now.  But that moment of anger and fear erupting from our five-year-old daughter brings me to tears every time I remember it.  I’m typing this part with tears streaming down my face; it’s taken me this long to be able to come to a place where I can write about it at all.  Even now, I want to throw up.  I want to die, if that could somehow save her.

Instead, I have to, we have to, make her poison cells all throughout her body and especially all throughout her brain in the hopes of killing off the cells that might kill her.  All the other cells that die in the process, the good cells that are trying to grow more curly hair and develop her brain and lengthen her bones and help her grow up, are collateral damage.  We tell ourselves that those innocent, beneficial cells are acceptable losses, and hope that it’s true.  We hope that the damage we do trying to save her doesn’t end up killing her later.

In the end, she took the medicine herself, as she always does, choosing to be in control of how things happen to her.  It took several false starts; for each, she calmed herself by sitting up straight, closing her eyes, and taking a deep breath.  And then, as soon as the syringe touched her lips, she crumbled back into sobs, her body shaking with visceral rejection and misery.  Not anger, even though it would be easier for us if she hated us for what we keep doing to her.  If she blamed us for making her do this.  It would be easier to be targets of her anger than witnesses to her hopeless, knowing, abject misery.

Finally, after all those tries and stalling tactics, she made her choice.  She squared her shoulders, slowly put the syringe to her lips, and pushed the plunger, drinking it all down in two audible swallows.  She then immediately drank half a cup of Gatorade in an effort to mask the taste.  She doesn’t usually like Gatorade, but it’s what she asks for to go with her chemotherapy.  So we give it to her.

But only after she’s poisoned herself.

People ask us how we’re holding up, and when we say we’re doing pretty good, we’re being honest.  We know that we’re lucky to have to poison her, just like we were lucky to have to irradiate her.  We’re beyond grateful for those opportunities.  We are.  But we’re also painfully aware of the nature of what we’re doing.  We feel every last drop of the horror it is to be grateful to be damaging our baby; to have the good fortune to force her to choose, day after day, whether she will poison herself or we will do it for her.

Hoping for Uncertainty

With a lot of cancers, including the cancer that Rebecca has, the best you can hope for is an ongoing state of uncertainty.

At the moment, we’re in our month-long break.  The purpose behind this rest is to let her brain settle down from six and a half weeks of radiation treatments.  That’s enough time to let any swelling subside.  At the end of that break, just before Thanksgiving, she gets her first post-proton MRI, in order to establish a baseline.

The very best result we can hope for is to not know if there’s still cancer in there or not.  If her MRI looks clear, if all the structures look like they should and the brain tissue looks relatively undamaged and there’s nothing new and deadly, then all we know is that there is no evidence of cancerous growth—but absence of evidence is not evidence of absence.  Wondrous as it is, medical science has not yet developed imaging with enough detail and discrimination to pick out cancerous cells hiding among healthy cells.

The other result, the certain result, is that we find out, from seeing a tumor or other significantly abnormal result, that the cancer is still there and very aggressively attacking our daughter.  In that case, we’ll most likely be put in touch with hospice services.

Assuming that the baseline MRI and the ongoing blood tests show nothing obvious to worry about, we will proceed with an aggressive chemotherapy regimen.  As we do, every couple of months, a new MRI will be taken.  As with the baseline, the point of these MRIs is to make sure no tumors are growing in spite of the chemotherapy.  If not, we continue with the treatments, hoping to kill whatever microscopic bits of cancer might still be there, hidden between the neurons of her brain and the pixels of the images.

All the time wondering if all the cancer has already been killed, and we’re just pouring more chemotherapy agents into her to no purpose, like firing artillery barrages into a city long since abandoned by enemy forces.  All the time knowing that we can’t take the chance of stopping too soon, just in case there’s even a single cancerous cell left.

After a year of chemotherapy—assuming we make it that far—then we decide whether we should continue further, or call a halt.  I can’t imagine what we’ll be feeling by then, how we will bias ourselves.  Partly because I don’t know yet how the chemotherapy will affect Rebecca, so I don’t know what we’ll be feeling after a year of side effects.  Maybe we’ll be ready to take any chance to end the suffering of side effects.  Maybe we’ll be ready to take any chance to make sure all her suffering was not in vain.  Or maybe there won’t have been much suffering; everyone has a different reaction to the drugs, and some people have very few side effects.  I can’t know until then.  Assuming we make it that far.

After the chemotherapy is finally done, whenever that happens, then Rebecca will still get regular MRIs, all with the same purpose: to make sure nothing malignant is growing.  Every three months for the first couple of years, then maybe every six months for a few years, and then, with any luck at all, every year for the rest of her life.  And always, every time, the best possible result will be this: as of now, nothing has gone wrong.

I have lived with this exact uncertainty my whole remembered life, so this is not as difficult for me as it might have been, but I’ve noticed that this is the facet of our future that seems to horrify people the most.  I think most people have a vague sense that cancer is a disease that can be definitively cured—that it comes, it’s attacked with treatments that can be debilitating, and that eventually, if things go well, you can declare that the patient is cured.  That eventually, you can relax into the knowledge that the terror is over.

It’s never over.  You can never relax.  You can only get used to your new, heightened awareness of the horrible uncertainty, and to the probably new and unwelcome idea that uncertainty is and will remain the state in which you fervently hope to dwell, for however many days are left.

October 2014
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