Why May is Grey

springMay is Brain Cancer Awareness Month. It’s probably also some other awareness month and there is probably a Donut Day or something wonderfully absurd in it’s mix. These things are arbitrary. May is no more or less affected by Brain Cancer than November, but somebody wanted it to get attention so they picked this month. I wonder why.

May is an otherwise beautiful month – it’s the month of blooming flowers and occasional rainstorms. May brings the end of winter, the beginning of tank top season. May means visits to the greenhouse, the sound of dirt scraping a metal shovel as you plant hope in the form of seeds or root balls. It is the month of bees and bugs and sun in the window making shadows out of pie crumbs.

It’s also her birthday month. Tracey Lanette Eoff, born May 25, 1962. She brought my son’s smile with her – thin upper lip, cheeks pushed out, squinty eyes under gently pointed eyebrows. She was a beautiful baby which can be said of all babies because it’s subjective and mothers are supremely biased, but in this case it was undeniable. Her beauty stayed through awkward adolescence and the postpartum wreck of a woman’s body. It remained as her skin began to save the indentations of her generous smile, as her hands held onto extra years, and her scalp pushed out a few more grays. She was a Spring Baby who grew into a Spring Woman. She always meant for hope and new things and bright color, she never dulled of the sun and didn’t mind the bugs.

The cancer she found herself fighting two and a half years ago is not really about hope or bright colors. I can’t speak for all brain tumors, but Glioblastoma Multiforme (GBM) is a monster and it brought winter.

The things I need to say about GBM I hesitate to say out loud because if someone ever stumbles upon this page with a fresh diagnosis, I don’t want to add to her anguish. But they need to be said because GBM needs attention, it needs funding, it needs some goddamn Hope. So if that’s you, if you have come here on accident, searching for insight into a fresh diagnosis for yourself or your loved one, please skip down to the bottom for a note just for you before you continue. 

The numbers are bleak: the median survival rate is 14.6 months; with treatment a patient has a 30% chance of living for 2 years. That is how this cancer is measured: in months and single-digit years. The most optimistic numbers (from one study) say a person has a 10% chance of living 5 years. There are outliers living longer, but recurrence is inevitable. Every sufferer of GBM experiences a tailored torture. Because it affects the brain, there is no predicting what symptoms a person will develop and along what timeline. Doctors are rarely surprised by new expressions of the disease, but are almost never able to give a clear warning, only best guesses based on where the tumor is located. GBM is fatal, it’s incurable, it’s intolerably cruel. It leaves little room for optimism, little time for Spring.

And perhaps this is why Brain Cancer Awareness Month is May. Who needs hope more than the terminally ill? Who needs color and bright more than those whose lives are going grey? Who needs to be reminded that life comes from death more than those about to die?

My mother never stopped believing she would beat this unbeatable, even when she knew it would take her life. She volunteered for trials not just for herself, but for everyone who would have this diagnosis. She thought of you. Upon her death she donated her brain, a last act for the people she would never meet, but wanted to be there for as they walked where she’d been. She gave death the middle finger as she actively loved people she’d never meet. Like a tulip bulb, she planted a little bit of hope as her own time went cold so something Good could find it’s way into the light someday.

That is how the remedy for this disease will come. It will only be found because people with GBM insist on Life – like daffodils rising out of just-frozen ground and birds enduring the last remnants of frost as they build their nests. A cure will only come on the willing backs of those who want to see their grandchildren born, who are convinced they belong here, who believe they will dance at their kids’ weddings. It will only come because of those brave enough to Hope in the face of a hopeless diagnosis.

GBM has a terrifying history, but those living with it today are here because of Hopers before them who had the first groundbreaking surgeries, took the current treatments as trial drugs. Someday someone will be cured of GBM. The first person will be able to say “I used to have Glioblastoma.” Mom hoped it would be her, so did the rest of us. We joked she would get on Ellen for beating the unbeatable cancer. I can’t wait to see who does.

My beautiful Spring Mother died of Glioblastoma Multiforme in the last days before Summer. The last weeks of her ability to enjoy the parts of her life not taken by cancer were spent mostly in May among the birds and blooms. And it fit. The cancer didn’t – it is unwelcome and out of place anywhere – but May fit, she fit, the hope we had for More fit.

May is Brain Cancer Awareness Month. Because humans are used to being told we will not make it, we’re used to overcoming, innovating, starting fresh and May is the month when the Earth does it, too. Glioblastoma needs some of that. So go grey in May: spread awareness, donate, and if you’re the type, pray. Above all, Hope. And plant some tulips.

 


 

To those with a fresh diagnosis of Glioblastoma Multiforme – for yourself or someone you love:

By now you have undoubtedly looked at the numbers. They are terrifying, I know. I remember the numbness that followed seeing on paper what this disease looks like. I want to tell you that those things are true, but they are only part of the bigger Truth. No human has a date stamp. No person is a statistic. There is no number to quantify or calculate the odds for the beautiful gathering of cells that is you.

My mother’s case went pretty much textbook (if there is a textbook for this). She was diagnosed, underwent surgery, had a recurrence a 15 months, and passed at 22 months (she prided herself on beating the median statistic, actually, so I shouldn’t call it textbook; sorry, Mom). But that is not her story. Even with the scary prognosis and the heartbreak and the pain experienced because of the tumor, there was so much LifeOur family grew closer, we held onto each other tighter, we enjoyed moments more fully. You are a warrior and nobody can say what your individual case will look like. Nobody. Nobody can tell you how long you have to live or what your time left will be like. The truth is, we are all going to die. GBM is a highlighter – a sick, cruel, want-to-punch-it-in-the-face highlighter that life is sometimes painful, always temporary, and ever worth savoring.

If you are at the beginning of this insane ride, you might be feeling completely overwhelmed. I hope you can feel through this clumsy screen how earnestly my fingers are pounding on the keyboard: I wish I could hug you. I wish I could give you a flesh-and-blood reminder that you are not alone. I hope you have people around you to carry you. And if you ever want to talk, please don’t hesitate to e-mail me at joyeberry@gmail.com.

I am so sorry that you have found yourself here. A few resources that were sometimes helpful for me and my family are listed below:

Glioblastoma Support Group – this is a private Facebook group where “warriors” and their loved ones can ask questions, vent, share victories, and memorialize. It is a very supportive environment full of people who uniquely understand what you’re experiencing right now.

ABTA – The American Brain Tumor Association has a lot of resources on their website; if you haven’t checked it out yet, it’s definitely worth a look!

Caring Bridge – this is a website where you can create an update site for you or your loved one; GBM can feel like a whirlwind so it’s nice to have a centralized place for information so you aren’t making 50 phone calls every time something happens.

My Mom really got a lot out of hearing other peoples’ stories with GBM.
Tracey’s Spot – this is the update page we made for my mom
Glioblasted – I haven’t read through this blog, but it is from a man who passed from GBM and his wife who continued updating it after he’d gone to fill in details
We Can Live with Glioma – again, haven’t read through it, but this man has been living with Glioma (not exactly GBM, but in the camp) for five years.

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