On August 8, 2017, Matt and I sent seven text messages to each other between 9:34 a.m. and 9:45 a.m. On its own, that detail is insignificant. As part of a whole, that detail becomes another example of how brain cancer can destroy a spark and a smile and a marriage one text message at a time.
Yesterday, I wrote that I wanted to piece together a narrative to answer the questions how and when. How did it all go so wrong? When did it all go so wrong? I’ve posed the questions dozens of times in writing, contemplated the answers a few thousand times as I read through text messages and inevitably scrolled ahead looking for…something. Something I missed the first time around.
And after I pressed publish on yesterday’s post, I was struck by a thought, an idea that maybe I’d missed the first time around.
One year ago today, Matt had two active tumors. One in the left parietal lobe of his brain and one in the right parietal lobe. If my imperfect memory is correct, the location of Matt’s tumors could impact his speech, language, and math skills. Google (Dr. Google?) informs me that the parietal lobe controls the ability to process sensory information.
The tumor in the left parietal lobe had been treated with poliovirus at Duke, and at the last MRI appeared to be getting smaller. The tumor in the right parietal lobe was a new growth, but was hopefully benefiting from the CCNU and Matt’s poliovirus infused immune system. Neither tumor should have an impact on the part of his brain that controlled his personality. And yet, yesterday, I wrote that I noticed Matt didn’t have the same spark. In the days leading up to today’s post, I wrote that there was something vaguely off between Matt and me. How? How was the personality sector of his brain impacted by tumors that did not impact the personality sector of his brain?
In May, I introduced Avastin into the story. I noted that I don’t know what, if any, role Avastin played in our story, but that I cannot help but feel as though I’m writing about the villain when I write about Avastin, that I’m crafting a compact theory to explain the unexplainable. Today, I cannot help but look through the disillusioned lens of hindsight in post-hope and think that the changes in Matt’s personality were due to disease progression concealed by Avastin, disease that didn’t appear on the MRI until November when Avastin was out of Matt’s system. And by the time it appeared in November…
Yesterday, after I pressed published I wondered (not for the first time) if the answer to the question of how is this: Avastin.
Did Avastin create a veil for the tumor to grow all but unchecked? Were we worried about the brush fire in the right parietal lobe when the entire sky was burning elsewhere?
The tragic truth is I will never know, the something I’m looking for will elude me forever. I will never know if Matt’s personality was actually impacted or whether my overdramatic imagination got the better of me. I will never know whether Matt’s disease would have progressed regardless of poliovirus and Avastin, or whether it would have progressed faster or slower. I will never know whether a different treatment path would have resulted in a different ending, better or worse. Asking the questions, ruminating on the how, probably only submerges me deeper into this relentless six month grief wave.
So I asked myself another why. Why ask the question of how if it will not change the ending? If it will only send my thoughts spinning into a thousand versions of what if—which I’ve said is not a question I like to ask.
The answer, I realized, is that I’m not asking the question of how because I hope it’ll change our ending. I’m asking how because I’m hoping it’ll change someone else’s ending. Asking how can’t help Matt, but adding Matt’s story—with all its strange and unpredictable twists and turns—to the collection of GBM stories could, maybe, one day, help someone else ask the questions that will help change their ending.
Creating a little good out of all this bad. Haven’t I always said that’s the point?