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.
Dear friend, I am so saddened for you and your family to hear how the cancer has consumed your sweet father. We love you all so much. I am in awe of your strength to even write about it. Sending our love and prayers.
Thanks so much, Karie, love you.
Elisa, we have been there, and know. My mom was 14 months with colon cancer. She wanted to be home, and was. We were stretched beyond our ability, and it took years to “recover”. It was a precious, and horrible time.
Blessings to you and your dear family!
Everything you said here describes just how we feel. Thank you for understanding. xo
I have no words. My heart is so heavy and broken. Arms are around you and the presence of God with you, but we who love you can’t help with all of the pressures and grief, and so we promise to pray. We grieve with you and hold you up in prayer, dear ones.
Thank you, Ginny! Grateful as always for your love and compassion.
Our hearts are heavy for you all. We fervently pray for God’s mercy, grace and comfort for all of you. May He hear our cries of desperation and bring you peace in the midst of great sorrow and sadness. He will not fail you nor forsake you. He promised!!
Thank you so much for these beautiful words of prayer and truth, they are a comfort to us.
I wish I could have written so beautifully about my brother’s journey with glioblastoma one month ago. Elisa has given me the gift of looking back, embracing the difficulty, acknowledging the faithful presence of God and beginning the process of accepting the race God chose for my brother to run.
I can’t tell you how much YOUR words have encouraged and bolstered us. I am so very grateful for you.
Oh, Elisa. I can hear your heart screaming out in pain. This is so hard and I’m so sorry. We love you and praying so so much.
Thanks so much, Kara, love you.
My heart hurts with you and your family. I am the niece of Sharon Jay. My dad went to Heaven on July 21st after having GBM. I truly understand what you are going thru. I know it’s brutal! 24/7 care. Up often during the night. Watching your strong otherwise healthy father become utterly helpless. You will get thru this! If you ever need to talk I’m here. I’m praying for you!
Oh Valerie, I am so heartbroken for your loss. In the midst of all the pain, God has used you and your family to bless me and mine, and I am deeply grateful for the love you all have shown us. Still praying for you all. xo
I’m so sorry, Elisa. This is heartbreaking, please let us know if there’s anything we can do to help. Keeping you and your family in our prayers <3 <3
Thanks, Denise, that means so much. xo
Elisa, there’s not much to say other than that I am so sorry you all are going through this. You and your mom are truly my inspiration.
P.S. I am glad to have found someone else who is not a Pilgrim’s Progress fan club member – try as I might, I have not been able to fall in love with that book. That being said, yes, I love the quote from it that you shared!
Your kindness continues to bless us, Diana! And I’m so glad you relate. 🙂
There just aren’t any profound words of wisdom that will make this all better or less-painful. But know that you are all loved and being prayed for regularly, that you will be comforted and find peace in the midst of this excruciating walk to Glory.
An “excruciating walk to Glory,” what a beautiful way to put that. Thank you, Karen. xo
Your heart-felt lament and faith-confession in this horrific ordeal so vividly and honestly illustrates the trials and our hope in this sin-cursed world. We are praying for your dad, your mom and your whole family as you walk with your dad through “the valley of the shadow of death”. Del Groen
Thanks so much, Del. Nelvia just came by and was telling us what good friends you all have been. She has been such a blessing to our family in this season, and we are very grateful for your prayers and your words of comfort.
Thanks for sharing your heart and your family’s pain as your endure the agony of gliosblastoma with your dad, Elisa. Even though we walked through colorectal cancer with Josh, and memories of his pain linger, I still can’t imagine what you are going through.
We, too, were grateful for music, and this song from the Book of Common Prayer will be added to my playlist today.
Isn’t that a beautiful song? God has been using music to minister to us quite a lot. And you DO understand this, even though the details are different. I’m thankful for your words of empathy and love.
Elisa, wow…. I’m graetful you’re sharing this with us so we can pray and share your pain. much love. Jean & Mindy Klinkhamer
Elisa, My name is Kathy and my family have been friends of your parents forever. My Dad, Keith is now 88 and in assisted living. My Mom, Darlene, who absolutely loved your parents is in Heaven. I’m so very sorry and don’t even have words to say how sad I feel for you and your family. I pray for you guys frequently when I wake up in the middle of the night. I can’t imagine what you are all going through. I will pray along with you all for mercy from our great Savior. Love to you all and tell your Mom I think of her all the time.
Oh Kathy, some of my fondest childhood memories are of your parents! I adored them. Thank you so much for posting. I miss the days gone by, but am grateful for the faith of both your parents and mine, and the hope that faith affords. xoxo
Thanks, Yvonne Adam for elisajoyful.com
28 Comments on The Road Gets Bumpy