Sometimes, especially late in the evening like right now, the quiet of our home brings me back to the quiet of the hospital late at night. The haunting echo of my footsteps as I pace up and down the hallways, up and down, trying to walk away from the fear.
The nights when Elliot was in the ICU were the longest, there is no small cot for the parents in there, just a chair next to his bed and a curtain separating you from the next child. His epidural, we found out later, had been wrongly placed so he was in lots of pain, the nurses did their best with morphine injections and other painkillers. Martin and I knew right away we would not be leaving his side, not for one minute. We could not control the fact that he had cancer, but he would not wake up and be alone and in pain, that was one thing we could make sure of. So we divided the nights into shifts, each of us taking turns getting three hours of sleep in a small bedroom at a local student’s residence a block from the hospital and then coming in to replace the other.
These were some of the hardest nights. The hardest days too. Exhaustion, anxiety, fear, achingly present all the time, all the time.
Some things went wrong. Because of the wrongly inserted epidural needle, Elliot had a neurological reaction to the lidocaine which was sent right up his nerves to his brain, he convulsed and his pupils dilated into different sizes. The doctors didn’t realize it was the epidural, so they told us it was probably a brain tumor and scheduled an emergency MRI. Did I mention these were some of the bad days?
Since the nurses felt the epidural wasn’t helping with pain management, they stopped using it. His eyes went back to normal, and the doctors met in a semi circle around his bed to finally decide it must not be a brain tumor after all. MRI cancelled, and off they go. And we stand there, shaking with relief, with fear, with a “what just happened?” expression as they all head off to the next case.
All day, both of us sitting next to his bed, on the alert in case he woke up in pain, ready to pounce at the little button to call the nurse. All night, tossing and turning in the student dorm, or sitting in the dark ICU next to his bed, shivering, with a thick sheet wrapped around my legs, another around my body, watching the little red lights blink, which mean everything is ok.
And when we were both there and one of us needed to stretch our legs, or at “shift change” in the middle of the night, the long slow walk down the quiet hallways.
Being given bad news, the nurse taking me out of the room to comfort me so that I don’t cry in front of my son. Being given the good news, walking out into the hallway feeling like I’m going to fly to the moon, and seeing another mother who is crying. The nurse comes to her.
The strangest feeling as I sit here tonight in my quiet living room, is that I know there is a child in that bed and a mother pacing that hallway right now, as I sit comfortably at home.
How many other moms have I met since this adventure began? How many other kids? I’m not exactly sure, but some very close friendships have been born out of this bizarre twist in the road my life has taken. It is such a strange feeling to be glad about the friendships I have made on this trip, and yet to know I would wish this experience on no one. I have had laugh-out-loud moments with other cancermoms, giggling like teenagers as we talk about some of the strange or ridiculous hospital situations we have been in. I have been in tears with the same moms.
One of the scariest moments for me strangely enough involved another mom’s child. I was on a girl’s trip with some non-cancer friends to Prague, out shopping all day, going to a concert at night. I had been so looking forward to this trip, my first time away for over a year. But anxiety kept eating away at the edge of my mind, I felt I didn’t “belong” in this world. I had changed but the world had stayed the same. I didn’t care as much about buying clothes or gifts, I struggled to let go of the worrying but anxious thoughts clung to me like a heavy blanket wrapped around my shoulders, dragging me down, making every step difficult. My two good friends, who had flown all the way from Canada to meet up with me, could probably sense it, they have known me for a couple decades now.
Suddenly, a text message, from another mom I know who was at the hospital for a check up for her 4 year old girl. The message is brief. “There’s a long bright spot on the scan. It can only be a relapse.”
I stood reading and re-reading the message, cold Prague air creeping up around my ankles, into my coat, up my spine.
For the first few seconds, I felt nothing, just a strange sharp pain in my stomach. No emotion. There was no reason to expect a relapse in this little girl right now. The treatment had been very successful. There were no signs, no symptoms. Kind of like… Elliot, when we discovered his cancer. No symptom at all. A perfectly healthy child, running around being normal, and suddenly they tell you he’s at death’s door.
I started to type a message back right away.
“I can’t believe it…” No, that feels wrong! Delete.
“Are you sure?…” Wrong. Delete. The ache in my stomach is getting worse. My fingers are wrapped tightly around the phone, frozen from the cold.
“What did the doctors say?” Stupid question. Delete.
I can’t think of what to write. And the reason I can’t think of what to write is that there is nothing I can write that will fix this.
So I finally just wrote: “I’m here. I’m crying.” Knowing that was no help at all. And then the tears came, not just for this little girl and her mom, but for all the kids, and for mine, and then for me, who didn’t deserve to have to worry so much about my own child, who should have been able to just enjoy a damn girl’s trip to Prague.
Of course my friends did exactly what friends should do in situations like this, which is wrap their arms around me, take me out for some drinks and desert for supper. (Sidebar: absinthe is very very cool to watch, as the bartender prepares it and pours and burns the sugar on the special metal carved spoon, but it tastes terrible. Despite the desperate times, we could not drink it, and quickly left the Absinthe bar for a more sophisticated restaurant serving wine and decadent Czech deserts).
My friends, eager to make me feel better, talked it over, and decided that I was probably getting too immersed in the cancer world. I was drowning, worrying about every child, and this was making me unable to see that everything was now ok with mine. We decided I need to start focusing on other things. Get a hobby. Take a class. I agreed, actually starting to feel slightly embarrassed at my little tearful breakdown. It was all so logical. I just needed to distance myself from the cancer world.
But instead of feeling better, I started to feel angry. The wine and desert kept the anger quiet for a while, but it seeped in at some point in the middle of the night. I kept it hidden for most of the next day, since I was travelling back to Geneva, and anyway it’s easy to disguise anger when you’re at the airport and your flight is late, everyone is angry anyway.
Somewhere over western Austria I finally admitted to myself that I had no intentions of focusing on other things. I was angry at this relapse. It didn’t make sense. It was illogical (which cancer is, of course) but things that are illogical bug me. The girl’s mom and I had texted back and forth a bit and apparently the doctors were mystified too. All the other tests were fine, just this one image that showed a relapse. This cancer was (and still is) just a big bully trying to scare us into admitting defeat. Well, NO, I thought. I’m not hiding from this, I’m not going to pretend it can’t happen to me. It could.
Yes, the logical thing would be to protect myself, to distance myself from any unpleasantness. The truth is, I do that a lot. I can’t watch any movies or tv shows where kids get hurt or die. I stopped reading the newspaper because there’s always a story about some horrific tragedy involving kids. It’s easier to just avoid unpleasant things, isn’t it?
But here’s the thing: I can’t abandon a friend. No matter what. And if it were me, if one day it happens to Elliot, I would not want all my cancer mom friends to run away and hide. I would want them to join forces to support me through this, no matter what. To be there, to join in the fight, to hold hands if things go wrong. To be strong when I can’t.
And strangely enough, once I made this decision, the nagging anxiety I had felt even before the Prague trip lifted. Yes, bad things happen. They happen even when they shouldn’t and sometimes the unfairness is so bitter you can taste it. But sometimes, good things happen too. In the middle of the fight for your child’s life you find you have made a friend. In what should be your darkest days you laugh out loud at something silly. In your weakest moment you discover a strength that wasn’t there before.
So there you go. I’m not leaving the cancer world. I DID take up a hobby, completely unrelated to cancer (I’m taking piano lessons! Ack! My piano teacher says the fact that I played piano as a child will help me learn it again… That was before she heard me play the piece I had practiced all week… She smiles a lot, kind of like you do when your shoes are too tight.)
No, instead, I’m going to toughen up. I’m going to face the fact that tragedy happens. I can try to help, try to hope for a miracle for everyone I meet along the way. I can be there, in the same way I would hope someone would be there for me if I needed it. I can stand by my friend and face whatever comes. I can research treatment options if it helps and keep calm and logical because it’s easier to keep the facts clear when it’s not your child. I can feel all the pain and fear but can also keep repeating the most important fact. “the doctor believes they can cure her.”
And the anger? I’ve channeled it. I remember reading that anger is the best emotion to make you take action. Anger is motivating. Anger is fuel. So I’m angry at cancer, and the result is that I’ve decided to stop cancer. Yeah, that’s right. You know, when I put my mind to something, I can be pretty stubborn about it. So there’s a few paths I can take: either I can quit my job and go back to school to study to become a medical researcher, and find a cure for some of the worst childhood cancers. This has the definite disadvantage of a)taking WAY too much time b)requiring me to study and c)losing my salary in the meantime. Not to mention the fact that I want to do something NOW. (Did I mention I have no patience?) So my other option is to find people who already have done all the studying and schooling and all that boring stuff, and support them as they try to find a cure for the worst childhood cancers.
So if you want to know why I’m involved in fundraising, now you know: it’s because I’m too lazy to study. Yeah, I’m often immersed in the cancer world (except for my clearly brilliant moments of piano playing), but it’s a conscious choice.
Being strong all the time when you’re alone is impossible. But if all of us cancermoms, cancerdads, cancerfriends stand together, our combined strength will be enough.