Thursday, January 21, 2016

On Fear

I spend a lot of time being afraid.

I am afraid of being too happy. The last time I was really, really happy was two and a half years ago. Everything was good. Guy was starting to travel less, Lior was finally happy, the house was finally ready, I loved Adi's school so much. I was so happy. I told people I was happy. And then Adi got sick, and I remember doubling over in the emergency room because I could not breathe.

I am afraid sometimes that I brought this on. The evil eye. I let it in, because I told people I was so happy. I think I felt like this for a long time. I think I still feel like this sometimes, especially when I am alone in the house, or when everyone is sleeping late at night.

I am just plain afraid. We are nearing the end of treatment. In February, Adi is scheduled to finish maintenance. He'll keep taking antibiotics for another few months, but he'll be done with the oral chemo. And then we'll see what happens, and I am terrified. I catch myself holding my breath. I have to tell myself to breathe, to feel the air go in and out. To let go of the fear and just be.

I am afraid of failing my family. "How are your other kids," people ask, and I make a joke about the therapy and the psychological damage, and the people laugh, and I lie awake at night and think, Will they every forgive me? Will they ever be okay? Have I ruined them? 

I am afraid of the work that lies ahead. For two years, we had one goal: Keep Adi Alive. And now that he is, we have to go back to all the things we set aside for so long -- the reading, the writing, the math, the homework, The Plan for the Future.

Sometimes, the sun shines and I look out the window at my garden and the boys are sitting together playing, curled up around each other so that you can't tell where one ends and another begins, and the girls are not insulting each other and the kitchen does not look like a bomb hit it, and I think, This is so good, I am so happy, and then I think, But, and then I think Stop and I can remember the sound of water in my ears and the air rushing out of the room.

Sometimes I am afraid I will never breathe deeply again.

You need to just get over it.
You need to let it go.
You could get hit by a bus tomorrow.

I spend a lot of time being afraid.

Tuesday, September 22, 2015

Cancerversary 2

So. Here we are again, Erev Yom Kippur. But this time, I’m sitting on the couch watching Adi navigate through Houston using Google Street View (to find the garbage truck, natch) on the computer in our home. Definitely better than last year or the year before.

I suppose I'll start by asking forgiveness from all of you for anything I might have done to hurt you in the last year. I'm pretty sure I did something. Possibly something fairly benign, like not call you back or answer your email, possibly something worse. I apologize. I'm sorry. I might have meant to do it at the time, but I regretted it afterwards. I'm human. Sorry.

Next up, gratitude. I am so grateful for the health of all my children and my parents and my husband and myself and all the other people I know who are healthy. I am grateful for every day. I am grateful that today I had the luxury of being annoyed at my computer for not connecting to Wi-Fi until I restarted it. I am grateful that today I could mutter under my breath as [insert child] did [insert thing]. These are not things I take for granted, even if I sometimes forget for a moment that our time is fleeting. I almost always remember with the very next breath. Even now, as I raise my voice to the child who is shoving the sofa across the floor, I am grateful. Also, truth be told, a little irritated, because LEAVE THE SOFA ALONE. But grateful.

Sorrowful. For the friends we have lost. Some we lost to the terrible disease that is childhood cancer. Others we lost to horribly mundane car accidents. You are all in my heart. So much of the time. I think of you so often. I smile when I remember something funny you said or did. I laugh when I remember your smiles. I cry when I think of all that lost potential. I weep for your mothers and fathers, your sisters and brothers, your friends. I hurt when I think about how unfair it is that you are gone. 

Fear. So much of my time is spent fighting fear. Yesterday, I took Adi in for routine bloodwork and a visit to the neuro-oncologist. As you do. And in the time between the CBC and Chem Panel being taken and when we got back the results, I saw a million terrible scenarios in my head. I don't try to do this. In fact, I actively try NOT to do this. But, as my fellow cancer peeps know, cancer changes everything. Childhood cancer leaves scars everywhere. I can't tell you how many times I wake up in terror thinking that I forgot to give my kid his pills, or inspect his body for strange bruises, or freeze when he coughs. I can't tell you how my whole body reacts when I walk into our hospital, even for "routine" visits. I can't tell you how scary it can be sometimes to check Facebook, because I'm afraid of what I'll discover.

Amazement. I have seen miracles. I have seen children -- yes, children, more than one -- come back from the brink of death. Children whose parents had released them, had whispered to them, "You don't have to stay here for me. It's okay."  I have seen those children suddenly -- and it is sudden, never subtle -- suddenly awaken, with some renewed strength that medicine cannot explain. I have seen these children suddenly grow stronger, take tentative steps forward, and then suddenly race towards health. I have seen miracles. I don't know who decides -- or how -- why this child gets one and that one doesn't, but I have seen them, and I am amazed.

Grateful, again. For the friends who have helped us. For the people who have, with tiny kindnesses and grand gestures, made this journey easier. For the strangers who have prayed for my son and my family. For the people who have made me laugh on the darkest days. For the people who have not allowed me to wallow in my own grief -- and for those who have simply stood close by, ready to catch me if I fell.

Sad, still. For everything that we lost, as a family. For an innocence that is gone. For a peace that we may never find. For a balance that is forever askew. For my children, all my children, who are changed.

Grateful, again.

Heartbroken, again.

Grateful, always.

Sunday, September 06, 2015

Epistle: To Abbi, 12 Years Ago

Dear Abbi,

First of all, you are SO YOUNG. I would tell you to revel in this, but actually, you were very aware of being young. You were the youngest in your little group for a long time, until you moved, and you constantly felt that you were younger and less competent than everyone around you. So even though at almost 40, I am jealous of your late twenties youth, I am not jealous of how you felt about it.

Second of all, right now, you are enormously pregnant, and you are perhaps somewhat anxious given the bed rest and the ENORMITY of yourself, and all that, but honey, YOU HAVE NO IDEA WHAT WORRY IS.

Here's the thing: right now, your life is a freaking garden of roses, and you don't even know it. You have two kids who are developing on schedule, and while they are sometimes weird, their weirdness is well within the range of acceptable. Also, their feet don't smell. DO NOT UNDERESTIMATE HOW IMPORTANT THIS IS.

In just over a month, your entire world will be rocked, and that's not a good thing. Everything you thought you knew will turn out to be wrong. You dreamed of drama in your life? Oh, honey. Oh, honey. You will get your drama. And you will learn, as does anyone who lives with drama that drama is seriously overrated. Boring is AWESOME.

In just over a month, you will have a baby! (Spoiler: it's a boy! Mazal tov!) (That's not really a spoiler, because you knew that ever since the ultrasound tech with the awesome accent and the actual PEACOCKS WALKING AROUND HER HOUSE told you, "You see ziss? Ziss is BALSS." And you will get a LOT of milage out of that story.)

Anyway, this baby, this boy... well. The thing I most want to tell you is, "It's going to be okay." But I can't quite tell you that, because of all the twists and turns this story takes along the way. But I CAN tell you this: "You will get through this." I know you won't think you can. I know that in the first days after that baby is born and hospitalized and intubated and extubated and tested and retested and not responding right and jaundiced and his big head and not breathing and turning blue and not eating and not waking -- I know what you are thinking. You are thinking that it would be so easy to just get into bed and not get out again. You are thinking that this is too hard, that this is not what you signed up for, that you take it back.

But I also know that you will get up every morning and get dressed and go to the hospital and sit with your baby as many hours as the NICU nurses will let you. I know that you will come home and try to smile at your daughters when you want to scream. I know that you will pump copious amounts of milk to take to the hospital. I know that you will keep putting one foot in front of the other, and I just want you to know that you will get through this.

I wish I could cover your ears when people come forward with ridiculously grim prognoses about that beautiful boy. I wish I could erase those words from your brain, that you could unhear them.

I wish I could show you the video of Adi riding a bike, pictures of Adi's smile, the sound of Adi laughing, because if you had those then, in those first weeks, everything would have been so much easier.

I wish I could have had your back in the grocery store that time when that idiot woman tried to make you feel like you had caused everything that happened to your son by having a home birth. I wish I could have punched her in the face for you. I'm pretty sure that's one of my lifelong regrets, not punching that woman in the face.

Looking back, with the lens of maturity and hindsight, I have to say that you kicked ass, but you had no idea you were doing it. You were so hard on yourself for so long, and I wish it had been easier for you.

Your older, wiser self

P.S. Buy AAPL and GOOG.

Wednesday, January 14, 2015

The Roller Coaster

Yesterday was one of those days where you go from extreme to extreme. Elation to depression, in a matter of seconds. That's fairly typical for a cancer parent.

Two days ago, it had been fairly clear that we'd be discharged either yesterday or today. So yesterday morning, I told the doctor who did rounds that Adi's brother was having a birthday party yesterday afternoon, so we really wanted him to be at home, and ultimately she agreed that instead of a day in hospital with no antibiotics (that is, just for observation), she'd let us go home. But she couldn't possibly remove his PICC-line, because, "What if he needs it?"

"You realize it's about to come out on its own, right?"

"If you want to go home today, I'm not removing the PICC-line."

I said fine. And then I went upstairs to oncology to tell our doctor and have him remove the line, because, DUH. Anyway, I was in a great mood when I got upstairs, and then I saw my friend who told me that she was waiting for bone marrow results for her son, and she'd been a wreck, especially after what happened to T, another child on the ward.

"How is T?" I asked, and she looked at me.

"You didn't know?"

"I mean, I know he relapsed, but I..."

"Saturday night," she said, and it was like a kick in the stomach. Again. Again. Again. Because T. was a kid who was ALIVE. Who was ALWAYS talking, always running around, always smiling, always laughing. Always kind, always going.

"I thought you knew," my friend said helplessly, and I couldn't make my mouth say all the words inside me, and I think I said something, but all I could think was, "I need my husband. I need Guy," because it hurt so much in that instant, and in the middle of being so happy and excited that Adi was going home, I just wanted to curl up on the floor and cry.

And the oncologist took out Adi's PICC-line, because DUH, and we went home, and Yoni had an amazing birthday party and Guy broke the Internet in our house and Adi was home and everything was great and I couldn't stop smiling at the party and when Mambo Number 5 came on, I danced(because DUH), much to the embarrassment of my children, and everything was wonderful, and then I remembered and it was like a kick in the stomach. Again.

And this is how it is. Because as happy as we are, there is always a tiny screaming terror in the back somewhere that we can ignore a lot of the time, maybe even most of the time, but it's there, and it's waiting, just waiting, to kick me in the stomach. Again.

Wednesday, December 24, 2014

Epistle: To Adi, On the Occasion of the Final Day of Active Treatment

Dear Adi,

Before. Note the belly. That's gone now.

Whoa. It's been a long 16 months. Only twice as long as the oncologists told us it would take!

Right after diagnosis, before the port was put in.

I mean, let's not get TOO excited. Sure, today you had your last dose of active treatment chemo, but it's not like the road ahead is going to be easy, or, you know, WITHOUT CHEMO. We've still got those six intrathecals to look forward to, after all. And there's the oral chemo you'll be taking for the next year or so, which, YAY, oral chemo!

Home after the first hospital stay. 

Everywhere Adi goes, Yuval goes. 
But, indeed, there is cause for celebration, because WE FINISHED ACTIVE TREATMENT. That's kind of a big deal, and the weirdest thing is that you're not even here today. You're off having a grand old time in Eilat, with your peeps, 119 kids with cancer and 100 counselors and a whole bunch of support staff making sure your every need is met.
What my kid does on vacation.
Not at all disturbing.

You've been out of school for 16 months. And yet, you've learned an enormous amount. You've learned to deal with situations that are beyond your control. You've learned that on days with abdominal ultrasounds or CTs or intrathecals or any of a host of other tests, you need to be fasting -- and you even understand why. You know the meds you take, in what form, and you know instantly if something has been changed. You know how to share a room with someone else, you know that sometimes we can't go to the playroom, that sometimes you need to throw up, and that soon you'll be better.

So tired. Just want sleep.

Eff this... stuff... is what I think you're trying to say here. 

Because what kid doesn't dream about being the garbage truck man???
You know that soon you'll have surgery to fix your stoma. (I am personally quite excited about that one, because you don't know how to do laundry, so that task falls to me. There's a lot of it.)
You know that soon you'll go back to school. After SIXTEEN MONTHS. This should be... interesting. I think you'll be happy to be back in your misgeret, back to your regularly scheduled program, as it were. We've got a lot of work ahead of us, but you've never been afraid of a little hard work. You may object to it, often loudly, but you've never been afraid of it.

I will walk with my pole BY MYSELF. 

The very fact of your existence at this moment is miraculous. Truly -- medical science can't explain how you survived multiple bouts of septic shock, two bowel perforations and two bowel obstructions, methotrexate toxicity, anaphylaxis brought on by PEG Asparginase, and I'm sure I'm forgetting something else. Amazing how you can lose count of your kid's near death experiences.
As long as there's cake, it's all good. 
Or Belgian waffles. That works, too. 
You are my hero. You and your smile -- you are amazing. I love you. So much.

I love all of these pictures too much to choose one.

Monday, December 22, 2014

Epistle: To Lior, Because the Words Are Spilling Out of Me

Dear Liorie,

Eleven years ago, when Adi was in the NICU, I was terrified. I had no idea what was wrong with my baby, this new creature I hardly knew. I didn't know if he would survive. I didn't know if he would live, only to be afflicted by horrific disabilities. I didn't know what was wrong, or what the future held. And I was equally terrified that one day, you would come to me accusingly and tell me, "It's NOT FAIR that I" -- and here, I didn't know what, exactly, would come, but it would be something, and it would be because of this other child, and it terrified me, because I knew you would be right.

You were the first to be mine, and for a time you were the only one to be mine, and you are always mine. It is always you.

I think I imagined myself bravely heroic in these discussions, holding back my tears as I let you shed yours, allowing you the space to resent your sibling's special needs while respecting him.

I think I wasn't very smart then.

You have never thrown Adi's disabilities, or his leukemia, at me in anger. You have been the graceful one, doing what is needed, often setting your own needs aside. This is not to say that you have never railed against the unfairness of this mortal coil, but you have always done so in reasonably good spirits.

Some years ago, I was terribly angry with you and your sister. Honestly, I don't remember the actual incident, but I do remember writing the post. I remember how awful I felt, listening to you and your sister going on and on about how horrible we were.

One day in the future, I'm sure I will see this post, and I won't remember The Math Test Which Shall Not Be Mentioned and The Incident of the Text Message and the other many, many difficulties of these, your teenage years, but I will remember how much it hurt every time we had to reprimand you. Every time we had to take something away, to say no, to remind you to study. I will remember how I had no idea how to tell you how very much I love you and that I am NOT KIDDING when I say that it hurts me more than it hurts you to study for that test and to do that thing and to not do that other thing. I will remember how it caused me physical pain when you wouldn't answer my "Good morning," because your righteous anger burns in you.

Oh, you are so very clearly my daughter.

You were the first to be mine, and for a time you were the only one to be mine, and you are always mine. It is always you.

You are so wise beyond your years, and sometimes all I want to do is protect you from the cold, hard truths of the world. I want to prevent all the mistakes you will make -- you will make them, it's inevitable -- but I want to spare you the pain of making them, as impossible as that is. I want to just give you all the answers now. But it doesn't work like that. You have to forge your own path, to make your own mistakes, and to learn in your own time.

We will survive these tumultuous teenage years, I know that we will. And I know that if this is the worst -- these mornings of stormy silence, these evenings of bitter tears -- that we are very, very lucky. Even if right now you think I am the most horrible person in the world, and not very smart, to boot, we are very, very lucky.

I love you so much. I can't find words to tell you how much I love you and how amazing I think you are.


Wednesday, December 03, 2014


Yesterday was one of those days that, while things are happening, you can already imagine telling people the story afterwards. You know how you'll sound, where you'll roll your eyes, where your audience will laugh, everything. But it was also one of those days where you just keep saying OH MY GOD MAKE IT STOP MAKE IT BE OVER HOLY CRAP I CANNOT TAKE ONE MORE THING.

It started Monday night, when Adi spiked a fever after two days of Ara-C. Not unexpected, as Ara-C is known to cause fevers. But it meant a trip to the ER, nonetheless. And then, out of nowhere, suddenly Adi was in pain. Stomach pain. And since we've been down that road before, I knew immediately that we weren't going to be getting IV antibiotics and going home.

We were admitted, even though the x-ray showed nothing, because with Adi's history, you don't mess around.

Tuesday morning, we had another abdominal x-ray and an ultrasound. The ultrasound showed "something," but to get more clarity, we'd need a CT. With contrast. So Adi drank a litre of contrast dye, and then they put in a peripheral line for the contrast material (it clogs picc lines), and off we went. (Well, actually, we waited hours and hours, and then off we went.)

They gave Adi propofol and sent me out of the room. And then I suddenly realized it had been 25 minutes, and WHAT THE HECK WERE THEY DOING IN THERE???? So I went over to the door and heard Adi SCREAMING, and then the doctor opened the door and said, "It's okay, we had technical difficulties."

Um, what now?

Well, they started putting in the contrast material, and the peripheral line burst. And then when they tried to use the picc line? It tore. But no problem, because he was already out, so they could put in a new peripheral line, right? Except that when they stuck him, HE WOKE UP, and I wasn't in the room, and he was NOT HAPPY, and then the stoma just started leaking poop everywhere, and then he started screaming. But somehow, they had gotten the CT done, the doctor told me.

Except that, of course, it was inconclusive, and so Adi had to drink another litre of contrast dye, although this time they did the CT without propofol, and then they told us that Adi has an infection in his bowel. Of course he does.

So, he remains NPO, on antibiotics, inpatient, until further notice.