As I mentioned in my last post, we had some scary news last month at Mayo Clinic, when we learned my tumor may be growing again. So I’ve spent the last month eating ice cream, playing music around the campfire, catching up with old friends, and worrying.

A few weeks ago, I had my second seizure while Alicia and I were shopping. I didn’t black out this time and the seizure passed after a few minutes. But between the seizure and my increased fatigue, I came to the conclusion that my tumor must be growing. So I started thinking about funeral plans. Surprisingly, I’ve found the exercise of planning my own funeral to be quite therapeutic. Over the past few weeks I’ve joked openly with my friends and family about these plans. I’ve been trying to prepare myself for the bad news I was anticipating at this week’s MRI. Here’s a few things I jotted down, just in case:
My Obituary:
If I die of cancer – Do not say that I “passed away after a long battle with cancer.” Do not say something like “he lost his battle with cancer.” I WILL HAUNT ALL OF YOU if my obituary says this. Like this guy said in his obituary: If I die of cancer, the cancer dies with me. So technically, it would be a tie.
A few contenders for my evolving list of possible funeral songs:
Audioslave – Like a Stone
Bob Marley – Redemption Song
Pearl Jam – Just Breathe
Muse – Blackout
Oasis – Champagne Supernova
Nice to Know You – Incubus
Burial:
Bury me in my Motörhead t shirt, my blue Phish hoodie or that ugly green Alpaca shirt I got in Peru, a pair of my ginger colored Prana hiking pants everyone hates, and some gross flip flops. I don’t care if things don’t match. This is a funeral, not a fashion show. Also put my fake Ray-Ban sunglasses on so that everyone on the other side knows I’m a baller. If you go with the casket thing, ABSOLUTELY MAKE SURE I AM DEAD BEFORE CLOSING THE LID. Along with my cadaver, please send along plenty of guitar picks, pictures of my family, a flashlight, a deck of cards, and a flask of good gin. You never know.
On Wednesday morning I climbed into the MRI machine for probably my nine millionth scan. As the machine started it’s normal process of spouting machine noises and random jolts, I started thinking about all the things I need to get done.
- I want to vote next month. (And protect my wife and dog from the impending civil war).
- I want to see Phish next year. Or any live music concert, for that matter (thanks Covid).
- Still haven’t seen the northern lights.
- Still haven’t seen a bear at my dad’s cabin.
- Avatar 2.
- I want to record more music with my friends.
- More campfires. More ice cream.
- I want to go back to Nepal. I’d like to take Alicia just to see the look on her face when we have to fly on the world’s most dangerous airplane ride!🤣
I thought about all of these things I need to get done, and I prayed. I don’t think I ever prayed so hard in my life. I found a prayer, or a mantra, or whatever you want to call it that I repeated in my head during the beeping and banging of the MRI machine. I kept thinking over and over: Healed. No evidence of brain cancer. Healed, no evidence of brain cancer.
At the office visit Dr. R. walked in with a smile on his face. There has been a significant decrease in the contrast we saw last month. Dr. R explained this likely means that we were not seeing tumor growth at last month’s scan. We were probably seeing effects of my treatment making changes in my brain. We talked about more squishy brain things and made plans for a follow up on November 11th. We’re going to keep a close eye on what’s left of the tumor, and I’ve got some new medication for the seizures.
I’ve got some other funeral plans in the works, but I don’t need to worry about them right now. Instead of funeral plans, I’ll keep crossing off all the other things I need to get done. And I’ll keep saying and pleading and praying: Healed, no evidence of brain cancer.
So thankful for the good news. I will continue your prayer along with you! Keep following your dreams and crossing things off your list!
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Crack a beer, have one virtually with me. No more funeral lists, all bucket list stuff! Always thing about you, and I hope you know how special you are. Keep rockin! 🤘🏼
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My prayers are constant for you Justin…and for Alicia. Though we haven’t talked in quite some time, I think of you very often and you inspire me to think about things from unique perspective. I am so grateful for your good news. Sending a big hug.
Linda H
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That’s great news Justin! Keep checking things off that bucket list! As sucky as this all is… I love your attitude. Hopefully a funeral won’t be taking place for many many years down the road but I love those plans you’ve made. 😄 If ever your in the Mankato, St. Peter area your more then welcome to stay at our home on Lake Washington. If you hunt ducks/geese or fish, Dustin would enjoy taking you out. Dan and I and Dustin think and talk about you often. Just keep on keeping on… You Got this!!! Sending up prayers for more good news!! 💙
Dan & Carol Connor, and Dustin
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Best news I’ve heard in a long time. So happy for you both, sweet friends. 💕
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Great news my friend!! Keeping fighting the fight!!
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Have a gin and tonic for me. Hope things continue on this path for you .
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Hi Justin I heard this news from Dr Deming yesterday with joy! Now I’ve read your blog and heard it « from the horse’s mouth » with even more joy! Salutations from La Belle France – please put a trip to visit me here with Alicia on that bucket list! Keep on living in your inimitable fashion. With love and a virtual hug x
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The Fishermen
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Love you buddy! Sorry for the Ric Flair chop that gave you brain cancer.
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