One year ago today, Matt woke up, showered, ate breakfast, sat on the couch, and fell asleep. That little bit of morning activity, along with his long doctor’s appointment yesterday, had worn him out.
While Matt rested before his second day of physical therapy, I Googled. By this point, I had begun to spend a lot of time lurking on the brain cancer caregiver and patient forums, looking for ways to make sense of our life, looking for people who might understand how it felt to be fighting a disease that stole not only a person’s physical health, but also the very thing that made them into who they were.
I remember sometime during these weeks a timeline started circulating on the brain cancer forums. Or maybe the timeline had always been circulating and it had just never made it onto my radar before. The timeline was posted for caregivers who wanted—or needed—to prepare for the final days, who wanted to know whether they had months, weeks, or days left with their loved one.
There was a detailed description of what to expect at 3-6 weeks, 1-2 weeks, days, and hours. I clicked on the link that brought me to the timeline only once. Increasingly tired and more likely to nap after outings appeared on the list. I pressed the red x in the corner of the screen to close the page with the timeline that could not possibly apply to us.
Matt and I hadn’t discussed timelines with any doctors since 2016. At that time—back in 2016—the doctor at Duke told us that we could plan on Matt watching his kids graduate high school. In July, when the third tumor was discovered, we didn’t ask Duke whether that timeline had changed. We didn’t ask in August, when we learned the tumors had grown, and we didn’t ask in September when a hemorrhage sent him to the hospital and forced him off Avastin. I don’t know whether I can truly believe it didn’t occur to us to ask. Looking back, I think maybe we didn’t ask because we were too afraid of the answer we might get. In hindsight, I see now that sometimes to protect hope, we (I) chose blissful ignorance over truth.
Lately, in Post Hope, my thoughts have been consumed by timelines. Specifically, I’ve been trying to wrap my head around the fact that only one hundred days separate today from February 3rd. Similar to how I couldn’t believe only one hundred days (ish) stretched between the infusion of the poliovirus and the discovery of the third tumor, I cannot believe one hundred days separate today from that final, unthinkable day. When we lived this story last year, these final one hundred days felt like lifetimes. When we lived this story last year, if someone had told me we had only one hundred days and I should pay attention to these last good ones, I would have dismissed them and their opinion from our lives. I didn’t need that kind of negativity near me or infecting Matt’s thinking.
In the next one hundred days, the season will change, H will turn 7, 2018 will end, and an infinite number of stories will be written. In the next one hundred days, our world falls apart and then keeps falling. In the next one hundred (ish) days, the story ends.