We Are Survivors

Date: January 2008

Ode to Genna

Written by the mother of Genna, 12 years old, DX Diffuse Brain Tumors, NF1

We are survivors.

I sometimes feel guilty saying “we”; after all, it’s Genna who does the hard work of survivorship. But since her battle began so young, she doesn’t fully understand the stakes. That battle we fight for her, the battle of knowing, of knowing too little and too much in the same gasping breath, of searching for answers and begging for ignorance.

We are survivors.

I am unsure, though, how…not so much unsure of the doing—Genna’s scars are a reminder of every painful moment of the method of surviving—but more unsure of our own credentials. Such is the ambiguity of a “benign” tumor. Genna is stable. But the tumors are all still there. The elusive NED, No Evidence of Disease…that will likely never, ever be an acronym we get to make up songs about, which is a shame, I love acronyms & songs and NED is much more fun to sing about than chemo and blood counts.

So Genna IS a survivor. But what does that mean in our world? I know, it probably seems silly, if we’re surviving who cares what it means? However, the last few years have made me think about EVERYTHING.

You see, in the beginning, I felt almost guilty. Genna’s tumor was BENIGN, after all, NOT cancer, not the killing kind of tumor—I know better now. I felt guilty participating in an online support group for Pediatric Brain Tumor families…compared to children with the Bad “Omas”, medulloblastoma, diffuse intrinsic pontine glioma, glioblastoma, anaplastic astrocytoma, PNET, ependymoma, our optic glioma seemed almost like a brain tumor wannabe. How could I be dying a thousand agonies of grief when my child’s tumor grew slowly, without spreading throughout her little body?

Make A Wish? That was for REALLY sick kids, Genna just had a brain tumor. A BENIGN brain tumor. Her hair didn’t ALL fall out, it just thinned. She never lost tons of weight on chemo. Sure, she was having horrible insomnia, random pain, severe vision loss, crippling anxiety and fits of OCD, but she wasn’t dying, so it wasn’t really that bad—right?

Denial should not be underestimated as a survival mechanism.

Conversely, I felt angry when people downplayed our shock and devastation because Genna’s tumors were caused by genetics (i.e. we should have expected tumors!) or because her tumors were Benign. “Oh, so it’s ok?” one mom hopefully asked after Genna told them she had a brain tumor and I explained that it was benign. When I tried to clarify that benign is still a train wreck, I sounded a little Munchausen’s by proxy.

It’s a tightrope, one that I am still learning to walk.

But even when I wobble and waffle, we are survivors.

Back on the very, very first day of all of this, I so hoped for survivorship, for having this whole surreal horror be a memory that we could give inspirational talks about. You know, the kind with beautiful music, glistening eyes, and a triumphant flourish at the end. Kind of like a children’s hospital commercial, a story full of hope and happy endings.

But you know, not all the kids in those commercials make it…there are angels there, little faces to remind us how tenuous and costly survivorship is.

People say we are so strong, they could never do what we had to do. This is a terrible misinterpretation…for I Could Never Do all of this stuff…everyone who knows me knows I am a certified wimp. There is no human being more timid than I was back in 2004. The old Monty Python quote, “Run away! Run away!” wasn’t a punch line for me, it was my guiding philosophy, no joke.

But when catastrophe strikes, it’s not really like you have a choice. We didn’t round up our mighty steeds and say, “AHA! The hour has come at last for us to prove our valor! Arise, and let us go forth and smite the Tumors!” No. We cried. We prayed. We read books we didn’t understand. I begged someone to just tell us what to do. But ultimately we had to decide; we had to DO. If that’s strong, well, I guess we are.

Sometimes to our own surprise, we are survivors.

I hope we’ve gained some wisdom through all of this. The thing is, we aren’t done. How can we claim survivorship if the work of surviving is an ongoing process? The issues left in the wake of a sleeping tumor are a daily trial. The brain is pricey, exclusive real estate. There just isn’t much room for anything else, let alone a condominium complex worth of errant cells. Our story isn’t complete. We haven’t reached “happily ever after”, and I thought that was the mark of survivorship…making it to “happily ever after”.

I never expected a marathon. I hoped for a cure, I never knew “stable” could substitute for cure.

So now I feel guilty when I don’t feel happy enough about “stable”. I try, I really do. It’s so much better than the alternative…but the scars are so deep now, I know that stable can shift in an instant and we’ll be sliding down into the pit again. I want a cure.

I want survivorship without strings attached.

But Genna is genuinely a survivor. Things she can do now, I truly never thought she’d be able to do after those dark months of 2004-2005…and after the even bleaker months of 2006, when I thought we had crossed out of imitator and into the Real Deal…well, every single thing that G does is a victory, the mark of a survivor.

That’s not to say we have erected a pedestal for her in our home. She drives me berserk, I bug her. We disagree on snacks & when a shirt is officially too small. She needs to constantly talk to me, I need some quiet. She gives me Diva Attitude and I tell her to do things Because I Said So. She is a 9 year old kid who likes books, coloring, and telling jokes. She is a normal kid, and I am a trying to be normal mom.

This is what survivors look like at our house.

When I go back to the hospital now, the emotions of our experience flood over me. Pressing my fingers against the cold glass of the clinic playroom windows four floors above the courtyard, I feel trapped again, like time is passing by while we fight in a parallel universe. I know our battle is on standby, but still…I can hear it, smell it, taste it in this place. It’s not just mental, it’s tangible. The battle LIVES here, it’s not just a story.

I can joke with nurses, make up cheerfully sarcastic commentary—but it only barely drowns out the wailing of my heart.

Still, here, at the hospital, Genna IS a survivor. She is taller than last time; she has new animals for her guessing game with nurse Mindy; she has a full head of curly hair and eyes that never seem to pick up on which kids are the patients, which in oncology isn’t always a difficult visual judgment to make. Absence does make people happy to see her, smiles and hugs await her at every turn. Here, she is the victorious champion returning to the scene of battle…

…even as I prepare my list of questions for the doctor and wonder if that 2nd cup of coffee is going to make me sick if the scan results are bad.

WE are survivors.

So we move on. I try to find the funny parts in our journey, but an awful lot of brain tumor stuff just isn’t funny. Sometimes I can’t talk about it. I get weirdly emotional about old pictures and school assignments and songs on the radio. People get uncomfortable, they cautiously ask how Genna is and brace themselves for the answer…and usually now I can say “she’s doing really well” and not be paddling down the river of my own denial. But if it’s near scan time, or she’s had a hard week with the ongoing issues that come with whomping huge tumor swirling through her brain…well, then, sometimes I tell people how we Really are. I can’t help myself. It’s not fair to them, not fair at all, and I feel bad later, bad that I was so selfish and bad that I have such answers to the simple question, “How is Genna?” Why can’t I just say, “Fabulous!” without it being my stock sarcastic response?

But I know…survivorship isn’t always pretty. It’s hard earned, it’s gritty, it keeps you up at night and throws you to the ground exhausted. It carries you to euphoric heights after crushing you to the lowest pit. Survivors fight for every inch, every molecule of their victory, scarred and battered though they are.

We are those survivors.

Our story isn’t done. But today, in this moment, we cling to all we love…we live, we do laundry and homework and fill prescriptions and leaf though the LL Bean catalog and through medical abstracts that may hold the key to our future…and in doing so…

We survive.