Rob Delaney and his son Henry.  

I recently read a heartbreaking essay by the brilliant Rob Delaney. I knew his young son died recently of a brain tumor, but it wasn’t until I read this tonight that I realized that it was the same tumor I have.

I am so, so lucky that it happened to me. I would happily take the last almost 20 years of this shitty illness- the years of chemo, the radiation, surgery after surgery, the wheelchair, the almost certain early death- I would take it all a million times over if it somehow meant my kids don’t have to suffer with it.

You can read the essay here or listen to Delaney read aloud it here

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Words on love from Neil Gaiman


Gaiman wrote this for some friends of his that married in 2017. In addition to being beautiful, it also perfectly captures marriage, or at least what little I know about it after almost 20 years in one. You can read this and more at his online journal here

This is everything I have to tell you about love: nothing.
This is everything I’ve learned about marriage: nothing.

Only that the world out there is complicated,
and there are beasts in the night, and delight and pain,
and the only thing that makes it okay, sometimes,
is to reach out a hand in the darkness and find another hand to squeeze,
and not to be alone.

It’s not the kisses, or never just the kisses: it’s what they mean.
Somebody’s got your back.
Somebody knows your worst self and somehow doesn’t want to rescue you
or send for the army to rescue them.

It’s not two broken halves becoming one.
It’s the light from a distant lighthouse bringing you both safely home
because home is wherever you are both together.

So this is everything I have to tell you about love and marriage: nothing,
like a book without pages or a forest without trees.

Because there are things you cannot know before you experience them.
Because no study can prepare you for the joys or the trials.
Because nobody else’s love, nobody else’s marriage, is like yours,
and it’s a road you can only learn by walking it,
a dance you cannot be taught,
a song that did not exist before you began, together, to sing.

And because in the darkness you will reach out a hand,
not knowing for certain if someone else is even there.
And your hands will meet, 
and then neither of you will ever need to be alone again.

And that’s all I know about love.

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The world feels so hopelessly dark.

Just this week, the assumed remains of two young people were found in our state and, as if to pile tragedy upon tragedy, some have used it to pontificate about the value of humans based on their country of birth and it’s as if our humanity is leaking from a crack beneath us and seeping into the earth. I don’t see how we’ll ever recover what we’ve lost. At some point, maybe we’ll just run out completely.

Personally, we have fractured some relationships this year. Some quietly, gently. Some like sharp, jagged cuts that won’t be healed, rising months later, screaming to make themselves known despite efforts to bandage them or simply turn away.

The kids go back to school in a few days (and if something awful doesn’t befall them like this week’s news seems to promise) they’ll end up going to college and moving away and it’s already more than I can take to imagine them gone eight hours a day; I can’t even imagine them divided among the coasts.

But, amidst the darkness, there is also so much good: Emily, who wants to study musical theater, her voice ringing through the house night after night, Claudia, so dryly funny and endlessly helpful, sweet William who dreams of becoming a veterinarian, and Eric who makes me believe that the world is full of people working for justice.

There are the new connections we’ve made this summer that have been both surprising and wonderful. I find myself understanding the phrase, “everything I never knew I always wanted.”

And, I have been writing. Pages and pages on, as Ellis Paul says, a town I’ve built inside of my head. It’s been incredibly hard and satisfying and I’m sure no one will ever see it, but I’m lucky to be getting to do it.

The thing about having so much to be thankful for is that you’re keenly aware of how much you have to lose and tonight, with all the difficult news, the weight of that bad stuff feels so much heavier than it usually does.

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When I was a teenager, my mom seemed to actually care about what interested me. Maybe it mattered to her, maybe it didn’t, but I felt it did.

Now that I have teenagers of my own, I try to treat them the same way and it helps that they like things I enjoy. I’m not sure that I could camp outside of concert venues with Claudia if it was to hear death metal or go to the theater with Emily if it was to hear German opera over and over. I like to think I would, but, ugh.

I assume there will come a day, maybe soon, when they won’t want to sit in the van in the driveway with me for hours listening to music while we sing along or worse, there may come a day when they would still be willing to but I might not be here to do it. In the meantime, I’ll be the super uncool mom who knows all the word to that one boy band’s songs and has the t-shirts to all the musicals.

It’s hard enough to be a teenager, you may as well have a mom who gets you.

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This morning, in the cold of an August house with windows open all night, Claudia climbed into bed with me. While picking our “wake up” music I showed her the way parenthood has turned every love song into an arrow into my mothering heart and she listened so quietly, as if she could almost take in just how much I love her and her brother and sister.

“This house is just an address, you’re my home…”

“I must’ve been Gandhi or Buddha or someone like that,
I must’ve saved lives by the hundreds everywhere I went.
I must’ve brought rest to the restless, fed the hungry too,
I must’ve done something great to get to have you.”

“Oh my heart is tangled all around you
When you’ve got trouble I’ve got trouble too…”

If I die tomorrow, you can all sit at my funeral and know that I was fine with being gone at 38, that my heart was full to bursting with love. You can all turn to one another and say, “She lived a great life full of great love and amazing friends. Her life was filled with far more laughter than tears and she didn’t need any heaven beyond this world because really, that would just be greedy, she had more than she deserved and she was lucky enough to realize it.”

And you’d all know that, no matter how short this life might turn out to be, it was more than enough for lucky, lucky me.

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A summer evening in Iowa

Sometimes I look up and it seems as if months of the children’s lives have flown by and I haven’t taken a single photograph.  Since I witness them day in and day out, it sometime appears that they have been this size forever, even though I know, deep down, that’s not true.  Some part of me realizes that I will look up in what feels like a moment from now and they will be all grown up so tonight I stooped to grab a photo of each of them.

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Tonight was lovely.  It was warm, but not too warm.  There were no bugs and no bloodshed, a rare thing indeed, with three children.  The girls danced and went on the swings off and on for hours and Will played the entire time in the mud pit that is his garden bed. 

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You win some, you lose some…

I know people are wondering how things are going down here and your love and concern mean the world to me.  I am going to put this out there so that you can know the latest but I need to preface it with the caveat that I can’t talk to anyone about it right now.  I am so touched that so many people love and support me but I don’t think that I will be able to keep it together if I have to talk to people about this and right now I really feel like I have to keep it together.  Feel free to comment here or talk amongst yourselves.  Soon I will have dealt with this and I will be me, but in the meantime I am hiding under my metaphorical covers.

So, today… today kinda stunk.  Today I saw my oncologist and there was evidence of a new tumor in my brain.  We are going to continue  the next two cycles of chemo as scheduled to see if the tumor stops growing, shrinks, or disappears all together and I will know more at my visit at the end of June. 

What does this mean?  Mostly what this all means, at least right now, is that this trial wasn’t the cure that I was hoping it would be.  Right now the best case scenario is that the chemo is slowing the growth of the tumors down while I am on the medicine but that once I am off of it again they will grow however they want.   If the tumor remains in two months despite the chemo we will look at what needs to be done about it.

Today has been hard.  I am disappointed.  I fought hard to get into this trial and everyone around me has fought to get me back and forth the 1000 miles to Texas. People have given money, brought meals, watched my kids, let me crash with them, and just stepped up amazingly when I have dropped the ball.  I am so grateful to everyone for everything you have done.  I’m not giving up, I’m just taking a few days to process and then I’ll be ready to kick some butt again.  In the meantime, thank you.

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Gamma knife

1937109_105365107132_470020_nThe Gamma Knife Radiosurgery goes pretty much as promised. The Valium is really not enough to take the edge off, but I was not really feeling much edge anyway. The shots to numb the areas where the pins would attach the ring to my skull hurt like hell and I found myself, with tears in my eyes, using the Lamaze breathing that I learned in childbirth classes six years ago but have never had to call upon in my three Cesarean Sections. The shots are put in one by one and while I want to beg them to let me get my bearings between each one they made no such offer. Not wanting to appear weak, I stay silent.

There are four pins that attach the ring to my head, two on my forehead and two on the back of my head. The pin that they insert in the back left side of my head somehow misses its anesthetized mark and its insertion and residence there, although short, is excruciating. It seems the neurosurgeon asks me something about whether it is pressure that I am feeling and I am somehow able to communicate to him, although I am not sure that it is in English, that it is not merely pressure that I am feeling. He removes the pin, gives another awful shot, and reinserts the pin and somehow, once everything is installed, despite that awful looks of it the contraption isn’t the most uncomfortable thing that I have ever worn. I am surprised and pleased.

There is a CT scan to help them line up the radiation precisely and then I am given breakfast. One of the friends who waits with me had brought a banana and sweetly offers it to over and over in hopes, I’m sure, that it will make this all okay.

The procedure itself is painless but somehow brings out in me all the emotions that I should have been probably been working though in the weeks since diagnoses. Alone in the room, literally bolted to the table by my head, being moved this way and that from time to time by the mostly unseen techs; I am suddenly overwhelmed by the sad loneliness of it all. It makes me miss my mother. I want her here to hold me, to stroke my hair and tell me that it will be okay. And then I am sad anew because I realize that if this doesn’t work, my own children will lose that comfort from their mother as well.

I realize as the machine moves and whirrs that I am, at that very moment having things burned from the center of my brain. I understand why my friends have been so weepy and worried these last few weeks. I see suddenly that while it almost never happens, it has happened to me again and again: the tumors have come back and they have moved and they are now threatening the very thing that makes me me. I have a brain tumor and suddenly benign doesn’t seem so benign.

As they remove me from the machine and the Radiation Oncologist comes to remove the ring, a single river of blood runs from my left forehead pin spot to my eye and down my cheek. Although there was pressure the procedure was not painful, and yet is was all I can do to hold back my tears. Afterward, I am taken back to the family room where my friends, who have nothing in common except me and their dislike of one another, take turns mothering me; alternately wiping the blood from my face and trying to remove as much of the marker ink from the pin placement site as they can. No one offers to hold me or stroke my hair, but I have a feeling that if I asked they would quickly accommodate me. And I wish, more than anything, it could be enough.
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Home Again

We are here for a routine visit in a life that has become unroutine by most anyone’s definition. I am in the planning stage for my second six-week course of radiation for a tumor that I was once assured was nothing. It is now the nothing that will kill me someday and so we continue these huge treatments that are no longer huge to us.

I sit, fully clothed, on the exam table, the white paper crackling beneath me. My back is straight, my hands folded daintily in my lap but not because this is my way. Rather it is because I always imagine hidden cameras in these rooms and somewhere in the clinic a wall of monitors and groups of doctors and nurses laughing at patients picking their noses or rummaging through drawers and cabinets full of medical supplies. Sure, this is unlikely given the magnitude of their work here, but sill, I figure it can’t hurt to behave myself.

The doctor comes in unexpectedly and I know in an instant the news is not good. The MRI shows a mass on the back of the forebrain, he says. It is inoperable and now fills a space in my brain where cerebral spinal fluid once washed through unimpeded. They will do something called Gamma Knife Radiosurgery he tells me. Hundreds of separate beams of radiation will be directed into my head where they will intersect at the tumor, killing it. The remnants of this atrophied growth will then liquefy and be reabsorbed. The best case scenario will be an empty black spot that will forever show itself on the MRI like a pair of bunny ears placed over my head by some childhood peer in a class photo.

I sit, alone, on the edge of an exam table at the university hospital in the town of my birth. My husband and children sit out in the waiting room talking, laughing, oblivious to the fact that this appointment that was supposed to be about nothing has rapidly turned into something.

I am 35. I am sick, I am tired, and I am home. And yet, not home.

There are no barricades at the edge of town, no uniformed officers with waving arms signaling no entrance, but just the same, you can’t go home again.

I grew up here and driving back twenty years after having moved away the blue of the mid-summer sky is almost choked from view by crisscrossing tree branches. The town appears overgrown and slightly wild as if an abandoned farmstead instead of a vibrant college town. The twenty years of tree growth makes the town seem smaller somehow, more closed in, as if I have grown a great deal since I left even though, if anything, I feel smaller, worn down a little by life.

This lushness of this river town surprises me in the way that seeing a picture of my childhood home the year my parents bought it surprised me. In the photograph the trees I would climb in the yard are little more than saplings. This idea, that something exists without me, whether before me or in my absence, still gives me pause.

Sitting on the edge of the table, unclear about how much I might be about to lose, I am taken back to the time when I called this town home because when I lived here I lost everything and I’m not sure that I can do that again. I was seventeen when my widowed mother died and my family fell away from me as if my aloneness was something they couldn’t bother to fix and couldn’t bear to witness. The losses weighed heavily and the newness of them was sharp and ragged. I moved away from here then without the trappings of childhood but not at all as an adult. But even still, home has always emitted a siren song, seductive but painful. Come back, it says, there is something for you here. It turns out what is here for me now is the best hospital in the state.

But I can’t go back, barricade or not, because home isn’t here. It isn’t anywhere. While, like the river, so much of it looks the same it is not. Things have been carried away with the current to some far off, distant place. Things we can never get back. The things that remain are changed too: covered in layers of sediment or worn down by the passage to time and water over them. The once sharp edges of loss smoothed by that rush of water, the ache dulled by the joys of marriage and children.

The doctors work long and hard. There are tests and more tests. There is planning and counseling. There is medication given to take the edge off of the day that will include, among other things, four screws being attached to my skull and high-dose beams of radiation that will, if all goes well, kill the tumor.

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