I likely only refer to myself as a writer in my own head, but at my core, I absolutely claim it as an identity. Sometimes I write for people, but usually, I write as a release. It typically becomes a sense-making activity… do any of these thoughts swirling around in my head make any sense? Let’s see what happens… I leave the burdens of the day/week/month on the page and feel lighter. Consequently, those words stare back at me in black and white. They may bring joy or happiness, but they also serve as a reminder for dark, trying, emotionally, and mentally taxing situations. This is one of those times. And it’s hard to avoid things when they stare back at you in black and white. So I deflect and ignore the urge and I don’t write. I can feel the mounting frustration and overwhelming feelings that come along as a result of no release because lord help me if I have to physically speak to communicate this pain. I just can’t. Anyone who has had a conversation with me about it knows that I speak about the situation as though it is an article I read in the medical magazine. I research and I recite facts. I disassociate with “The Who” and focus on the what. This is how I “cope”, and I call it coping so I can pretend like I am, in fact, coping. So, here we go, the release…
It had been years since we had been able to have an adult conversation for more than a few minutes without being interrupted by demanding children or wandering trains of thought. Years since the “original 5”, just my parents and their 3 daughters had spent a few hours together. Like life before husbands and babies and the evolution of our roles from daughters to wives to moms, navigating the transition from mom and dad to Bampa and Gramma, we had all grown and changed but still longed for those moments that grounded us as a unit. Before there were 15, there were 5 and before we were 5, my parents were 2 kids trying to figure out life as a newly married couple in their early twenties, balancing the mouths to feed with the desire to strike out on their own and build a life. I stared at them now, the years had always been kind to them, and I couldn’t help but think that this was a pivotal moment in my life, one I would likely never forget.
The anticipation was practically killing us, we had no idea what they would say. My mom looked at us with piercing eyes, willing herself to stay strong, willing us to be okay.
“They found a mass in your mother’s brain,” my dad said when my mom couldn’t form the words. My sisters immediately started crying and I folded myself into the sweet warm body of my three-month-old son. My mind was spinning and my eyes welled up. I stared at my mom. My beautiful, kind, caring, loving mother. I saw the desperation in her face, the heartbreak on my father’s, masked in optimism. “We don’t know enough yet. We’re staying positive.”
My mom went on to explain the weeks or months in which she had not felt quite like herself. She had noticed a few things that I could relate to as a result of having a newborn and rough sleep pattern…losing my train of thought or being easily distracted. No headaches, nothing major. We had seen her grow quieter, possibly less patient or more easily irritated so we assumed she was stressed out, overwhelmed, busy with work and travel and all of her many hats. She had been planning a trip to Germany, then traveling on said trip for 2 weeks with her sister. She did all the things, all the time, so we assumed she was probably just tired. Maybe it was menopause? We never, NEVER expected to hear that there was something more seriously wrong. A mass in her brain?! An actual brain tumor?!
We cried, we told stories, changed the subject, asked questions, sat together. She asked for one thing, a picture with all 7 of her grandkids. They would likely have to shave her head, at least part of it, and she needed this one thing before her whole world was turned upside down. Of course, we would do it.
I reached out to a friend/photographer to see if she could help us out with a quick family photo session that week. We organized our crazy crew on the golf course, during men’s golf league night, and sped through a photo session. It was crazy, looking back on it. We were literally stopping golf traffic in an effort to capture images that we assumed could be the last we would have with my mom as my mom before she underwent a massive surgery. We painted on smiles while tears formed in our eyes. We organized and planned and willed our children to behave so we could just freeze time, and if only for a few minutes, preserve what life was like BD (before diagnosis).
I knew the moment was pivotal, sitting on the coffee table listening to the worst news of my life. But at that moment we still had hope that mom would have surgery, maybe have a partially shaved head, maybe have a wicked scar on her face, but no longer have a brain tumor. We still had hope then that they would take it out, that maybe this could be a blip on the radar, a story to tell that “could’ve been so much worse.” Fast forward 10 days and we’re sitting in a room reserved for consults with neurosurgeons. Her surgery wasn’t supposed to end for 2 more hours, we were heading to lunch when they stopped us and told us the surgeon was ready to speak to us. It’s too soon. She shouldn’t be done yet. This usually isn’t a good sign. We muttered some of these concerns out loud before choosing seats in the room and trying to remain calm. This is a pivotal moment. I knew it would be. I can still feel my legs folded up on the chair, the pressure I felt in my shoulders and back, as though the full force of gravity was attempting to fold me into myself.
The surgeon came in and explained that he could only take enough of the tumor out to biopsy. It was too risky. He threw tons of terms around that I was oddly familiar with because I had spent the previous days researching everything there was to know about brain tumors – types, grades, prognosis. I was a full-blown google expert. I could see my dad’s eyes glazing over in frustration, trying to piece together what the Dr. was telling us, trying to understand what it all meant, hoping that it wasn’t as bad as it seemed. “We’re staying positive.”
As the days passed, we grew used to waiting. We would find one thing out only to wait for days for the next course of action, the next pivotal moment. My mom is a fighter and through each step of the process, whether for our benefit or her own, she has remained positive and strong. When the results came back that the tumor was cancerous, our hearts sank. I spent days being nauseous, throwing all my energy into mundane tasks and projects to keep my mind busy and focused, but effectively numb. I have three little kiddos, a job, a house, a husband. Somehow the world keeps turning and the demands keep coming, even when it feels like everything should come to a screeching halt. Press pause. My mom, on the other hand, has continued to go to work, to volunteer, to lead non-profit boards, to love on our babies, to support us. She is a fighter.
She’s been going through treatment, eating an incredibly clean diet, focusing on rest and recuperation when she can get it, and ultimately going about life in a wonderful, intentional way. She’s here and she’s fighting and for that, I am eternally grateful. We recently spent a few days at the American Brain Tumor Association National Conference. We interacted with other patients, caregivers, and researchers who are working on cutting-edge treatment options in various phases of testing and trials. We were exposed to a world I never really knew existed and found comfort and camaraderie in shared stories and time together as the ‘original 5’. We ate Chicago-style deep dish pizza while talking about electromagnetic therapies. This new world is so surreal, but it’s our reality right now and we are armed and ready for it.
Our husbands (mine and my sisters) are an amazing support and have given us the freedom of a little space when needed to spend time with my parents while they hold down our respective forts. We love the craziness of all our crew together but a break in the madness is also a breath of much-needed fresh air. We’ve received so much support and love from friends and family all over the country- her army is a big one and it’s strong. The prayers, the good vibes, the love…we feel it all. So, if you’re out there and you have the pleasure of knowing her, or even if you don’t, send some healing thoughts our way. If anyone can get through something like this, it’s my mama.
