On Wednesday, M had another round of MRIs, another meeting with his neuro-oncologist, another of those long days where you are constantly both questioning and trying not to question.
They're hard days. No matter how romantic we get inside the hospital, they're hard days. In some ways, they're harder now then they used to be. We have a community of brain cancer friends, now. One of M's friends from high school, her husband has glioblastoma. A new friend in our new town, she has it too. And somehow, all three had their maintenance scans the same week.
The news was good for all of them.
Only this week, our cancer-clique got a little bigger. One of my best friends' fathers was diagnosed on Monday. Same disease. Same prognosis.
It's hard. It's hard when on Facebook you see people you know, maybe not too well, but still, going through the same anxiety ridden days. Anxiety is the wrong word, though. Anxiety happens whether or not anything is wrong. Anxiety happens whether or not there's a reason.
MRI day isn't like that. It's not a fluke of neuro-chemistry. It's black and white, the yes or the no. The final, absolute say in whether you are living or dying. And it never gets easier.
I distracted myself with home-improvement projects. We are now down to only two rooms un-re-decorated since moving in. Yes, I'll write about it, yes there will be pictures. That's not important right now. What's important is that as I painted and shuffled furniture, my friend's father found out he has a glioma, and that is never good news. It's never happy news. It's never comforting news. Even when you know somebody who's been living with a GBM for over a decade, it's not a club you want to join.
And while I rattled off resources and medical terms and references, a friend went through her scans, her first post-chemo scans, and they came back stable.
Today, another friend went through his scans, a year after finishing chemo, and THEY came back stable.
I know where all of them have been. It does not make it easier for any of us that I have stood where they stand. It doesn't make it easier for me to wait until the door to our consulting room opens and our neuro-oncologist comes in with a smile on her face and stories about her children, without a care in the world. It doesn't make it easier to wait for her to assure us the scans are full of good news, and ask after our children, as well.
Last night was the start of Passover; a celebration of the Angel of Death passing over us, the chosen people, and slaughtering the children of the other, the un-chosen.
Every MRI day feels a little like Passover. Why is this day different from all other days, I ask myself in those waiting rooms. We still eat, still sleep, still gather together to share sadness or joy. But on this day, we discover if we will be saved. Not in some religious, cosmic sense, no, it's whether we will be saved from certain, inevitable, rapidly approaching death. Whether we will see the sunrise. Whether we will breathe another breath. Whether the end has come.
Being married to a man who has lived with glioblastoma for eleven and a half years, I feel chosen. I feel blessed. I feel survivor's guilt. And Passover is all about survivor's guilt. It's remembering how many had to die, had to fail, for you to reach this day. It's remembering how many of your ancestors and kinsmen are killed in each generation simply for being what they are.
What I am is married to a man with brain cancer. What I am is a Jew, a child of survivors, the progeny of refugees and descendant diaspora. I am passed over time and time again. Every MRI day, or not. Every day of my life since July 5th, 2007. Since birth.
On Passover, we say, "Next year, in Jerusalem," but as a GBM surviving family we say, "Next scan, in stability."
It is heartbreaking to welcome a person you know and care for into your circle of suffering, of constant threat. My friend's father, who has been living with a glioma diagnosis for five days now, deserves so much more than these fears, than this uncertainty. He welcomed me into his home when I was 19 and had nowhere to go for the High Holy Days, for the naming ceremony for his first granddaughter, for his wife's funeral, for birthday parties and for no reason at all. He has eaten at my table, he and I have shared jokes and silences. I do not know him well, but I know him enough to wish him all the success of this circle we have, M and his high school friend's husband and our local mom-buddy.
Next year, I hope he is able to share my seder table. I hope he is with us, not only in life but physically WITH us. Next year, maybe I will host a glioma seder. A cancer seder. A seder for those who survive, and watch as death passes us by. A seder in the shadow of mortality.
We always say it, "Next year in Jerusalem," but I have never taken it literally. I believe this Jerusalem is the security of a longed for past, a memory of a safe place where there are no threats, where we are at peace. This is not the Jerusalem of today, surely it is not a place to me at all. So next year, not in Jerusalem the city, but surrounded by my loved ones, surrounded by hope and health, all too painfully aware that death is outside and that on this night it is passing us by, on this night only, and that in the morning a life of struggle and survival begins anew.
Chag Pesach Samayach, lovely readers.
Next year, in Jerusalem.
Read more about my religious traditions here: Praying with Sinners
Read my most recent post here: Brain Cancer, Guns, and My Daily Sh*tshow
Type your email address in the box and click the "create subscription" button. My list is completely spam free, and you can opt out at any time.