It Must Be Me

As I lay there screaming into the ground, nothing came out, not even a faint puff of air. I had cried so many tears the day before from anger, frustration, and grief. I let my face just scrape up against the cold ground. It was the only way I could force myself to feel again: frigid ground attempting to wake me up. Waiting for Ashton Kutcher to tap me on the shoulder and exclaim, “YOU’VE BEEN PUNKED!”

The diagnosis: It wasn’t good news, but it wasn’t bad news. It wasn’t great, but it wasn’t totally awful. Then what was it, Dr. Whatever? A nightmare that we couldn’t escape from. The prognosis is muddled. Every medical staff member looked at us with empathy and grief in their eyes. What was the big secret they were keeping from us? Hurry up and wait. Weeks and weeks of coordination and planning was the only thing keeping me going. On the phone for hours, making checklists, setting timers, counting pills, rearranging schedules, along with changing diapers, getting a toddler ready for school, finding babysitters, begging for help, while also trying to maintain a thick skin and keeping my husband from falling off the deep end. All the while I was starving myself, physically and mentally, because I felt like I didn’t deserve to eat, mainly because I AM the one that gets to live longer. Furiously cleaning my house and organizing drawers over and over again to maintain some kind of control as I continued to spiral out to something so far away from what I was reaching for—normalcy.

I continued to spiral internally. Is it me? Am I too intense? Do I care too much? Why was I being punished? I wanted this so badly to be me because I didn’t want him to feel pain, feel the illness, WALK WITH CANCER, have you. I didn’t want him to die first. I need him. He’s my person. He’s the other half of the air I breathe. I was jealous of the oxygen tank keeping him alive. How dare you, CANCER? That’s my job.

We called the time between his biopsy and diagnosis the “honey doom.” We spent so much time together saying nothing and everything. We hashed everything out from beginning to end. We cried, not until we felt better but until the tears dried out and we had no more left to give.

After a few more grand mal seizures resulting in hospitalization, an awake craniotomy with a partial recession, six weeks of daily radiation and chemo, he had back-to-back grand mal seizures. One at home in front of our one and three year old and then one in the ER. During the second I ran out screaming to the nurses, “Come back he’s seizing!” I will never forget waking him from a deep medicated coma after the attending doctor pulled me aside to tell me he would be intubated if he didn’t wake up. A breathless me sprinted back to the ER room shaking him and screaming, “Adam get up! You can breathe.” I’ll never forget the look when we locked eyes, and the tube never went near him because he heard my voice. I squeezed his hand and I told him, “I’m here. For better and for worse.”

The number of people you realize were once the people you thought were on your team and end up fleeing is maddening as you tread upstream screaming into the water. It’s suffocating and to put it bluntly, just plain sad. I used to feel so angry with my grief, but now I’m at the point where I am just sad. Sad because I don’t know what our lives will bring. But mostly sad because even though I gained another year with my love, I lost a year watching him face this enraging disease with no known cure, only to see him silently suffer. When I look into his eyes I still see that sweet glimmer, but it has been contaminated by the trauma of his relentless diagnosis. And for that I will always be sad.

I ran on empty for a year, devoting my life to Adam and being his biggest advocate. And I will continue to be his biggest advocate, not because I love him, but because I am hopelessly devoted to the most incredible man who has walked this earth. He does everything with such grace and poise, a gentle giant with a poignant bite that doesn’t deserve this cancer monster. He is and will always be my number one priority. When I tell you I would walk through fire for him, I would do it seven times and back again.

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