August 21, 2020
Aggressive brain cancer is no walk in the park. Well, it’s currently 114 degrees here in Arizona, which means even a walk in the park isn’t exactly a walk in the park, so to speak…Never mind. Aggressive brain cancer is the worst. I’ve heard people call cancer a thief, and I’ve seen the “F*** Cancer” t-shirts, and I used to think that people were simply saying that cancer is a hateful thing that steals a person’s life. I understand now that it’s more than that. People say those things about cancer because cancer isn’t just a killer, it’s a fiend. It’s cruel and unpredictable. It brings sudden grief in the beginning when it first appears, then brings a different kind of grief — an ugly, wearisome grief — while it lingers.
I’m writing this particular post not to complain, or to be dramatic, or to invite pity. I don’t want to write in a way that’s disrespectful towards my dad, or that alarms old friends of his who happen to read this. But my last three posts about him focused on the many sweet moments that were happening in the midst of the hard, and now the balance has shifted, and the hard moments are outweighing the sweet. For anyone else who has walked this road and who might have read those last three posts, I want you to know that we’ve reached the ugly part. For anyone who might walk this road in the future, I don’t want to lead you astray by implying that the road won’t get bumpy.
We had a few days this past week of feeling especially mired in the difficulty of everything. My mom, who not only helps my dad all day long but also gets up multiple times a night with him, was weary and discouraged to the breaking point. I help as much as I can but I also have four (cute but noisy and/or messy) kids doing online school who need frequent supervision and help, and Todd is still running a business, and we are pulled in many directions. And so, for my mom, there suddenly came a day when the relentlessness of my dad’s care felt like a crushing and unending burden. That day brought tears and anger with it. She cried, and so did I. In the midst of this low point, I reached out to a friend who recently lost a family member to GBM. When she responded, she wrote at length about how hard — not just emotionally hard, but physically and practically and mentally draining — those final weeks were. “I’m still recovering,” she said. I needed to hear that. I needed to hear that it’s normal to feel so bone- and soul-weary that you feel like you might not recover from it.
So that’s why I’m writing this post. I’m writing to say that if you find yourself in a painful season and you feel bewildered, that’s normal. And I’m writing to say that dying is hard.
Gone are the days of talking with Dad about politics and theology and math around the breakfast table. Gone are the days of dice games and books with the kids. Gone is my dad’s ability to speak, at least in any kind of way that we can understand. Gone is his ability to walk, or to use the right side of his body, or to shift himself to a more comfortable position in bed, or to sit unassisted. Gone is our ability to even know whether or not he can understand us anymore. He tries all day long to say things to us, desperately asking us for America or a violin or how many inches are in a Friday. Increasingly, he’s saying things even less comprehensible than that, sometimes pure gibberish, and he acts surprised and upset every time he sees the blank looks on our faces. He is often discouraged and uncomfortable and tired and sad, and he tells us all about it with words that make no sense.
One thing that seems to bring some peace to him is music — not radio music, but live, in-our-house music. We play the piano for him sometimes, or sing, or both. A few nights ago a friend of ours came over and played Dad’s Larrivee guitar for him. As the evening wore on, we all sat down around them and sang hymns while our friend played. When Dad’s speech began to leave him a few weeks ago, he could still sing familiar songs, at least a little bit. That’s mostly gone now too, but during Amazing Grace that evening, he managed a few words.
I have a few friends who know I’m not the biggest fan of Pilgrim’s Progress. GASP! I know, absurd but true. I don’t dislike it, but it’s just never resonated with me the way it has for so many. (“So many” means, like, billions of people in over two hundred languages over the last four hundred years. I realize I’m the weirdo here.) My lack of enthusiasm notwithstanding, I do keep thinking about that book recently, specifically a scene right at the end. Christian is in sight of the Celestial City, but he still has to cross the River of Death to get there. It’s a horrible ordeal for him, and he feels terrified by it. Not only is he fearful at that moment, but he also suffers a final attack from the demons he had previously confronted, and they seek to drag him down.
Christian’s companion, Hopeful, continues by his side, reminding him of truth, and encouraging him to persevere. “These troubles and distresses that you go through in these waters are no sign that God hath forsaken you; but are sent to try you, whether you will call to mind that which heretofore you have received of his goodness, and live upon him in your distresses.”
I can’t stop thinking about this imagery, about the difficulties, the fears, the confusion and doubts that assailed Christian and threatened to defeat him, right at the end of his journey. For my dad, heaven is in sight. He has almost finished his race, and yet there’s one final river to be crossed, one final battle to be won. The effort required to endure this last battle is immense, but God’s grace and mercy are more. And God has placed us here, to speak words of comfort and truth to his cancer-wracked mind, to walk by his side until his battle is won.
A noble calling. Some days it feels like an impossible one.
On those impossible days, we have to keep saying true things, and we have to find our hope in Christ, with whom all things are possible. A friend recently sent me this song, and I’ve been listening to it on repeat ever since. It’s called We Cry Mercy, sung by Greg LaFollette and Sara Groves, and it’s a slow, beautiful, mournful song, with only a few lyrics, but those lyrics have become the cry of my heart lately: Lord have mercy, Christ have mercy, O Lord have mercy on us.