The story on June 14, 2017 is quiet. The closing date for the sale of the company was fast approaching. The end of H’s preschool career was days away. G had yet another awards ceremony, this time for softball. We had nothing to do but wait for the MRI in July, and, like I said yesterday, we weren’t even particularly anxious about the impending appointment.
We had quiet. We had calm. We had everything we didn’t have on June 14, 2016, the day Hackensack received Matt’s medical records and I answered a phone call from a number that I recognized as belonging to a doctor’s office. The phone call is one I think about often. The numb feeling that came over my body. The way I reacted. The precedent that phone call set for so many future interactions.
To explain why this phone call was significant, I’ll need to backtrack a little and explain something I glossed over in previous flashbacks. Back when the MRI revealed the tumor and I went home to research, I learned that brain cancer comes in four possible grades. (Not surprisingly, they are numbered Grade 1-4). If my understanding was correct (and if my memory is still correct) Grades 1 and 2 are slow growing tumors and largely benign (although even a benign tumor can cause distressing symptoms). Grade 3 signifies an anaplastic astrocytoma, which is cancerous, and certainly dangerous, but slower growing and linked to a better prognosis than a Grade 4, a Glioblastoma.
On June 14, 2016, we knew that Matt’s tumor was cancerous. The neurosurgeon, whose expertise we trusted implicitly, had told us he believed the tumor was cancerous. The only remaining question for the pathology report to answer was: Grade 3 or Grade 4. Distress or devastation? On June 14th, nearly a week after the surgery, we didn’t have an answer yet. The report was delayed and we were left teetering on the brink of hope.
And then my phone rang. The woman on the other end of the line identified herself as the radiation oncologist we’d met while Matt was in the hospital. She told me the tumor was a confirmed Grade 4 and that Matt had eighteen months at best. I remember exactly where I stood in the backyard. I remember exactly how the air left my lungs and my stomach dropped. When I asked her if his odds were better because he was young, and mentioned that the neurosurgeon had seemed somewhat positive, she said no, eighteen months. She said there was very little hope. She urged me to make an appointment with her as soon as possible to get him into radiation so he could have the best version of his eighteen months.
Somehow I got off the phone with her and walked back into the house, fighting back tears. Somehow I finished making the green detoxifying juice I’d been in the middle of making for Matt before my phone rang, and set it on the table beside where he rested on the couch. Somehow, I didn’t tell him about the phone call I’d just received.
I’ve mentioned some of this in the past. How Matt didn’t research a single thing about brain cancer before his first doctor’s appointment so he had no idea what a Grade 4 result would mean. How, I hid the truth from him at first and he was upset with me.
This was the moment that I could have told him and I chose not to. I could not find the strength or the courage to repeat that awful truth to my husband. Instead, I flipped from devastated to furious and called the neurosurgeon’s office. Why didn’t they call me with the results?
The answer: the results weren’t in. The pathology report hadn’t been completed yet. They had no idea why or how the radiation oncologist called me with results. They said they would never give results over the phone. They were as perplexed and angry as I was.
When it was time for Matt to get radiation, I wouldn’t go to her. I refused to ever step into her office again.
Thinking about this phone call, the way hope was almost unceremoniously stomped out, still infuriates me. We were only just beginning to truly understand the shape of the fight that would consume our next twenty months, we needed hope wherever we could find it.
Two years ago today, after this phone call, I established a precedent. I viciously shut out anyone—doctor, nurse or otherwise—who didn’t try to find the glimmers of hope in the darkness, no matter how slight or obscure or unreachable they were.
Maybe that was wrong. Maybe we shouldn’t have turned our backs on those who tried to make us look into the darkness rather than above it. But it was the only way we knew to survive. And, as I’ve said before, you do what you can to survive.