June 29, 2020
If you’d asked me a month ago what a glioblastoma is, I’d have shrugged. A month ago, I had literally no idea that such a thing even existed. But several weeks ago, my dad suffered a series of sudden and alarming seizures that led to not one but two emergency brain surgeries, and now he and I and the rest of our family and friends are the unfortunate possessors of the knowledge that a glioblastoma is in fact a brain tumor, and not just any tumor — it’s a sneaky, deadly little bastard that comes out of nowhere and wreaks its havoc quickly.
Dad’s neurosurgeon, in his kind but matter-of-fact, thickly accented voice, said “This is terrible news,” right after he broke it to us. He said that he hates this tumor, that its origins remain mostly mysterious, and that after fifty years of research, little to no progress has been made in treating it. “It’s shameful,” he said. “It’s disgraceful.”
That’s an opinion shared by Dr. W. Lee Warren, in his recently published book I’ve Seen the End of You. Dr. Warren is a neurosurgeon who specializes in glioblastomas, and in the book he wrestles with his own personal faith as he treats one glioblastoma patient after another, knowing that the tumor will take the lives of one hundred percent of them. There’s no cure, and traditional treatments buy only a little bit of time, at best.
It’s been less than a month since we learned that this is what my dad is facing. On Tuesday, June 2, at 5:30 in the morning, he walked out his front door to take his morning walk. (“It’s a dangerous business, Frodo, going out your door. You step onto the road, and if you don’t keep your feet, there’s no knowing where you might be swept off to,” said JRR Tolkien, whose books my dad taught me to love.) Partway through that walk, he had an entirely unprecedented seizure and fell. Some kindhearted folks were out and about that morning, and they ran to my dad’s aid and called 911 and called my mom and stayed with him until she and the paramedics arrived.
I came over to my parents’ house to keep my mom company that day while she awaited news at home because, of course, no one is allowed in hospitals due to covid-19. OPINION: One family member — who is wearing a mask and gloves and has had their temperature taken — should be allowed to be with patients who are in critical condition. The fact that people are suffering alone, sometimes dying alone, without a family member to comfort them or advocate for them, is wrong. This was my opinion even prior to the discovery of my dad’s tumor, back when I was merely a disinterested observer. Every time I heard a “heartwarming” story about a family who FaceTimed with a relative as they died (that’s not good news, John Krasinski), I wanted to weep. Now that we’ve been in (nearly) that position ourselves, I can say that it is indeed terrible. Several nurses have expressed that they hate it too, and I don’t envy the position they’re in, having to say no to sad, scared people over and over again.
A CT scan on Tuesday revealed a mass on my dad’s brain. On Wednesday, my mom and I were on speakerphone for a conversation with the neurosurgeon, who told us that the MRI confirmed the presence of a tumor, and that it was most likely a glioblastoma. Immediate brain surgery was recommended. We listened to the surgeon, and then we talked to my dad, who cried as he processed what he’d just been told. We cried too, and tried to comfort him with our words since we couldn’t comfort him with our presence. We told my sister, who lives in Wisconsin, and she bought a plane ticket for the next morning. We told Todd, who marched right out and bought an iPhone to take to the hospital. He was angry about the visitation rules, but was determined that at the very least, we would FaceTime with him.
Wednesday afternoon and evening, my dad made good use of that phone. He FaceTimed with us, and with my aunt and uncle who had come by to visit. He FaceTimed with multiple friends. He FaceTimed with my sister’s family. He was surprisingly chatty, about anything and everything. He told us all about his room, about his nurses, about what he was watching on TV. He talked about the kind strangers who had come to his aid during his walk the morning before. He remembered all three of their names, first and last, and knew a little bit about their lives. He joked about tracking them down and inviting them over for dinner once he got home. He joked about his MRI. “It turns out I still have a brain!” he said. He joked about his upcoming procedure. “It’s not like it’s brain surgery,” he said. Whatever Todd paid for that iPhone, it was worth it for the enjoyment it brought that evening.
Surgery went well on Thursday morning. My dad woke up lucid and able to move, which was a relief. He came home a mere two days afterwards, seeming remarkably strong physically, mentally, and emotionally. He used a walker to get around, mostly because he was still having occasional seizures, but the in-home physical therapist was amazed at how strong my dad seemed when he came to assess him. We had a lovely few days, drinking coffee on the patio, hearing his thoughts about life and God and politics and math and how many dimensions the universe probably has. Normal things, for my dad. I stayed at my parents’ house, at Todd’s urging, and my sister stayed too. My dad kept saying what a gift it was to have his two daughters back in the house again. People brought us meals, family and friends came to visit, and the four of us enjoyed some sweet time together.
But as the days went by, he started to lose feeling on his right side, first in his arm, then in his leg. Discouragement and worry started to set in. We also received the pathology report during that time, which confirmed what we already suspected: Dad’s tumor was a glioblastoma. Over the next couple days, he stopped being able to walk.
On the night of Tuesday, June 16, shortly after he went to bed, my mom heard my dad calling out for help, and she found him in the throes of a terrible seizure. My sister and I joined them and watched helplessly while the seizure persisted. We called 911, and a team of EMT’s wheeled him into an ambulance on a stretcher, an IV in his arm, pumping drugs that were supposed to stop the seizure. After thirty minutes, en route to the hospital, it finally subsided, only to be followed by another, and another, and another. By the following evening, my dad was on the maximum dosage of three separate anti-seizure medications, and the seizures were still coming. An MRI revealed that his tumor was already growing aggressively again (like I said, it wreaks havoc quickly), and brain surgery number two took place the following afternoon. We tried to talk to him on the phone beforehand, but he was drugged and miserable and conversation was difficult.
That surgery went as well as could be hoped, and he remained in the hospital for six days afterwards. His right side was paralyzed, and he struggled with word recall, a strange phenomenon for a man who has always been good with words. Phone conversations with him were hard, and he often felt discouraged. And sad. And in pain. And lonely. For days.
My sister had been in Arizona for two and half weeks at that point, and we all knew she needed to get home to her family. She had a flight booked for Sunday afternoon, Father’s Day, and on the Saturday before, her husband called the hospital. I don’t know who he spoke to or what exactly he said, but we got a call from a nurse that evening saying that my sister was allowed to come to the hospital for a two-hour visit with Dad. We were elated, and my mom and I hustled her over there as quick as we could. From her description afterward, those two hours were very hard and very sweet, a tremendous gift in the midst of a lot of pain.
She took the iPhone back to him when she went, and for the following few days, we used my phone to FaceTime with him, first thing in the morning until late in the evening. By that time, Todd and the boys and I had moved in to my parents’ house, and my mom and I and the kids and Todd all took turns sitting by the phone, keeping Dad company. It was so much better than nothing, and so good for him to feel less alone.
Then again, it was sometimes awful too. We would see him struggling physically, and we could do nothing to help him. We couldn’t reach through the phone to adjust his pillow, or turn off the lights that were too bright, or help him shift position when his body was aching. We couldn’t poke our head out into the hallway to ask a nurse for pain medication or a meal for him. We couldn’t help him with his meals once they finally arrived, and we had to watch him on the screen as he tried to manage with just his left hand. My mom spent a lot of time on the phone with the hospital during those days, requesting meals for him or talking to nurses about his medications. The hospital staff were mostly very kind but also desperately overworked, and we were left giving my dad pep talks to pass the time until someone could come in to help him. We talked to the nurses through the phone when they came in, and thanked them for all they were doing, but we were all eager for his days in that hospital to end.
On Wednesday, June 24, Dad was transferred to an acute rehab hospital, and that has been an amazing change for the better. First and foremost, my mom is allowed to visit him each day (cue joyful tears when that news came), and that makes a world of difference. She spends a few hours with him, helping him to eat and reading with him and talking with him and getting him settled into his bed each night. The staff are very attentive to his medication needs, they are caring for the post-operative discomforts he incurred at the other hospital (rashes and swelling and bedsores and whatnot), and they provide delicious meals on a set schedule, so he never has to ask for food. When my mom is there he eats in his room with her, and when she’s not someone else takes him to the dining hall, which he said is pretty. He undergoes physical, occupational, and speech therapy each day, which is good for his mental as well as his physical health. The speech therapy in particular has been kind of fascinating (and downright fun, sometimes). He’s still essentially paralyzed on the right side of his body, and that may or may not improve in the coming days, but the PT and OT he’s receiving right now will hopefully accomplish some beneficial things for him.
People often ask how we’re doing, and the answer to that question remains elusive. Let’s start with the fact that 2020 was already the stupidest year ever. A couple of months ago I blogged about murder hornets, and the subtext of that post was how much stupider could this year get? Aggressive brain cancer. That’s how much stupider this year could get. I even hashtagged that post #famouslastwords. Now I want to cry when I re-read it.
I thought things were hard back then, in the sunshiny days of early May, back when pandemics and unemployment and quarantine and murder hornets and cancelled everything seemed like a big deal. Now I’ve basically stopped listening to the news, but it’s clear enough that the world seems to be getting worse at the moment, not better. Why did God see fit to give my dad an incurable form of brain cancer right in the middle of this 2020 hellscape? I don’t know. I can’t begin to pretend to know. But I believe that his suffering (and ours) has a purpose, and that this season is accomplishing something. Maybe the purpose is something we’ll never be able to see in this life. Maybe it’s reminding us how lost and insufficient we are on our own. Maybe it’s just increasing our longing for heaven.
But to answer the question of how my mom and I and the rest of us are doing…Well, we’re sad, scared, overwhelmed, uncertain, tired, sometimes mad, and burdened with many weighty decisions. There are unknown things in the future which are worrisome, and there are known things in the future which are devastating. But in spite of all that, we’re also having some unexpectedly good times with each other. We’re playing games and reading books aloud and saying prayers aloud and doing puzzles and watching shows and enjoying the time we have and feeling deeply grateful for the abundant outpourings of love we’ve received from so many people. We’ve lost our appetites and gained them back and lost them again, and we’ve been eating good food when we can stomach it and drinking good coffee in the morning and good wine in the evening. We’ve cried often, but we’ve laughed often too. We’ve hugged often. In the midst of the pain, in the midst of our sorrow over my dad’s brain tumor, our lives have been incredibly full of love. The suffering is real, but the blessings are real, too.
“Life is a series of beautiful moments interspersed by great trials. The trick to being happy is to learn to have beautiful moments during the trials. Faith isn’t a belief that God will spare you from problems; it is a belief that he’s still God and will carry you through those problems.” Dr. W. Lee Warren