The gadolinium contrast whooshes through my veins as I lay glued inside the tube, contemplating how the doctor will greet me at this afternoon’s brain MRI results appointment. Will she get to the point and tell me everything looks ok? Or will she make awkward small talk before pulling up images on a computer screen that will make everyone in the room cry?
When the scan machine noises cease and I stand up from the MRI table to remove my earplugs, I remind myself that I’ve been feeling great. That dizziness? I stood up too fast. No seizures in nearly six months. My last three scans have shown the cancer standing down to the thoughts, prayers, science, faith, mojo, good vibes, and medicine we’ve been hopelessly lobbing toward it like jagged darts to a dusty dartboard in the corner of some dark bar on the other side of town.
Alicia, mom, dad, and I make our way to the 8th floor at Mayo Clinic for my 2:00 PM results appointment. We check in early, sit down, and I waste no time starting in on my mom about her strange taste in music. I don’t know why, but for some reason mom was really excited to tell me about her favorite new “yacht rock” music station that she listened to on her way from Sioux Falls to Rochester. I’m grateful that she’s made the 3.5 hour trek to be with me at Mayo Clinic, but I’m suspicious of anyone who finds joy in listening to the likes of Seals and Crofts and Little River Band. Growing up in the seventies, you should know better. Mom, next time you’re driving to Rochester, I suggest you play ZZ Top’s “Tres Hombres” album at full volume. Take the corvette, roll down the windows, light a cigarette, and drive really fast.
In the waiting room, we continue talking, poking fun at my mom, and laughing about anything but cancer. It occurs to me that I’ve never taken anything or anyone seriously in my life. Not even brain cancer. Maybe I’m constantly trying to make light of things because I think the truth is dark and terrifying. Mom keeps grabbing my hand and asking if I’m OK. We’re all confident that this scan will be good news. I’ve been taking chemotherapy daily and even started a new treatment called Optune. Between this and the lack of seizures, there’s no reason to believe today’s visit will be any different than the last few visits.
I see a new doctor today at Mayo Clinic – Dr. C. She’s a researcher with extensive experience treating brain cancer, and I’m grateful I’m fortunate enough to be her patient. I’m encouraged, as her work is a reminder that there are so many people working their asses off, trying to put a stop to this disease.
Once we’re in the exam room, Dr. C’s resident loads the images from my last three scans to the screen:
Unfortunately his MRI today shows new enhancement in the right insular cortex and basal ganglia concerning for progression of his astrocytoma. He should stop temozolomide as he is no longer deriving benefit based on today’s scan. He has previously been in touch with the group at NCI in Bethesda for a trial using nivolumab for IDH-mutant astrocytomas. We would recommend this as the best next step for him.-Dr. C’s resident
I joke with Dr. C’s resident that Dr. C sent him in to handle the dirty work of telling me the bad news. I apologize that he has to deliver this news to me. The tumor has grown in two new places. Soon, Dr. C arrives to discuss next steps. I ask her what she would do if she were in my situation. Confidently, she says she would enroll in the clinical trial at the National Cancer Institute in Bethesda, MD – just outside of Washington D.C. From my understanding, the trial will require me to travel to Maryland every 2-3 weeks for an infusion of Nivolumab, an immunotherapy drug that is currently used for the treatment of other types of cancer. Basically, the immunotherapy treatment is supposed to send instructions to my own immune system to kill the cancer on its own. Today I’ve been in contact with the National Cancer Institute trying to get things set up. Once they have a chance to review my scans, it sounds like they’ll be able to set up an appointment. I’ll know more details in the coming days.
I made an unscheduled visit to my therapist today. I’m scared and pissed off, and I’m not really sure how I’m supposed to be reacting or feeling yet. I’m 37 years old, for God’s sake. Should I carry on with my life acting as if everything is normal? Or should I be checking things off my bucket list and getting more stupid tattoos and generally acting more reckless? I left the appointment with my therapist feeling a little better, but not near as good as I felt once I hopped in my truck and cranked up some rock and roll for the ride back home. I haven’t smoked in many years, but I barely resisted the tempation to stop and get some cigarettes for the ride home. I already have brain cancer, what’s the harm?
Do everything you want, Justin. Life isn’t guaranteed for any of us so live for today, my friend! Always sending living prayers and support to you and Alicia. 🤟🏼❤️🙏🏼
Cancer sucks, bottom line. You are such an amazing person with a kind heart and great musical talent. I wish nothing more than you to be healed and have peace. Please know how much you and your beautiful wife are prayed for. (Met you in Yellow River on 2020 AB&C trip)
Cancer sucks and I am sorry you and Alicia are going through this. But you should always be trying to live life to the fullest which means crossing items off your bucket list and being a little reckless along the way. If you haven’t been doing that lately you should definitely start. It may not change the current situation but it will bring you happiness during this dark time giving you good memories to outweigh the bad 🙂 (such as learning to fly a plane- John’s still waiting on that phone call 😉)
This sucks, I hate it, I’m mad you should have better outcome 😒 I want you free of all of this, your such a strong person. Your family and friends will always be beside you all our prayers will never stop.
Stay Positive as we are with you!
Justin, Thank you for sending me your post. I marvel at your amazing talent to put feelings into words. You’re better than the Hillbilly Shakespeare himself.
If I could take your burden off your shoulders and place it surely on my own shoulders, I would do it in one jump in’-jack-flash-of-a-second.
But, I can’t.
The best I have to offer you is my shoulder for support, my mind for wisdom and my heart for love.
I love you Justin. I’ll do anything for you.
Thank you for your eloquence, your passion for life, your talent, your compassion, and your enduring faith in the power of humanity.
Prayers for you Justin. I understand how you are feeling, the mixed emotions, as I am going through that too. I need a double lung transplant but my overall health is declining as I try to lose weight to get on the list. Definitely do bucket list stuff while you are healthy enough. But don’t act as if life is over already, it isn’t. Thank God for his continued protection and try to have as normal a life as possible. 🧡
Just hooked up with your blog this morning – thinking of you and singing with you across the universe – I am sure Bethesda has some new brews but your spirit and zest for life are the real deal – sending love my friend!
Justin, I’ve spent my entire career as a healthcare writer – that’s 30+ years – and I can only wish I was as articulate as you. What a gift you have. Please go easy on your mom’s preference for yacht rock. It got us boomers through some rough years! But so did ZZ Top. We can be flexible! I’m sending Good Vibrations (get it?) your way.