All in My Head

I had an MRI scan on my brain on June 17th. Everything looked great! No changes since the last scan. I finally mustered up the courage to ask Dr. R what I could expect as far as recurrence and lifespan. It’s something I’ve been avoiding asking the doctors for a few reasons. Number one, I don’t want to put my doctor in the situation of feeling like they have to give me unrealistic expectations, or something like that. Secondly, I seem to be under the impression that everything will go south now that I have had a recurrence. I just don’t want to hear this news from my doctors. But what’s the harm in asking – and how would the information change the reality of the situation? Plus, I think I’m warming up more to Dr. R. and trust that he can deliver any news to me in a way that makes me feel warm and fuzzy.

Dr. R explained that with the type of mutation my cancer has, it would not be unlikely that I go another ten or twenty years before another recurrence. And even then, we still have plenty of other treatment options available to us. Of course he reminded me that this disease is quite unpredictable, and that he cannot predict the future for me. Regardless, his words gave me the hope I needed to take one more step.

Mr. Anderson is his normal bright frenetic, ribald self. He attends in regards to the examiner and speaks in clear nondysarthric speech. Clinically, the patient endorses that on the whole his symptoms are stable. He does not feel that he has ever had any symptoms referable to his brain tumor.

Dr. R Clinical Notes (6/17/20)

Exactly a week later on Wednesday, June 24th, still celebrating the wonderful news that my cancer has not grown, I found myself back in my office working (on my laptop at the kitchen table). About 4:30 PM, as my day was beginning to wind down – I stood up from my computer and decided to walk out to Alicia’s office (the front porch) to say hello. As I walked out to her I thought I felt a cold/tingly feeling in my left leg. When I reached her at the porch The feeling overwhelmed the left side of my body. I decided to sit down on the floor of our porch, and as I did so I turned to Alicia and said “Call 911 – I think I’m having a seizure.”

The next thing I remember, I’m storming around my house in a panicked, paranoid daze. Reality wasn’t the same at all. It probably wasn’t as dramatic (or funny) as that scene from Fear and Loathing in Las Vegas when Hunter S. Thompson is wandering around his hotel tripping on acid. It’s a good thing I wasn’t on acid. I was postictal. Alicia must have called her parents. I remember screaming that I couldn’t breathe. I remember feeling like I couldn’t breathe. Then I remember Dan’s (Alicia’s dad) voice reassuring me that help was on the way, and that I was going to be OK. Then the ambulance arrived.

At Mercy Hospital in Mason City I had another MRI on my brain. The doctors in Mason City consulted with my doctors in Rochester and determined there were no changes from the scan I had the week before. I was told that I would need to stay overnight for more tests and observation. Because of the pandemic, I would have to spend the night alone. I also had the pleasure of being tested for Covid-19, which I’m surprised doesn’t induce seizures itself, since the nurse had to shove a metal wire up my nose and tickle my brain.

No covid, no changes to my MRI scan!

Before being released the next morning, I was put on a heavy dose of Keppra, an anti-seizure medication. I was told I would lose my drivers license for six months. I was still pretty foggy when Dr. R called me from Mayo Clinic, but I remember him saying I didn’t need to take so much Keppra. There wasn’t any real concrete explanation for why, specifically, I had a seizure. After all, I’m a brain cancer patient. What did I expect? It’s just another bump in the road.

Who knew that having a seizure and starting a new medication could take such a toll? Not only does Alicia have to assume the role of my taxi-driver, but my brain has not been the same. I’m still shocked that it happened. My short-term memory has been off. When a lot of people are talking at once I have more trouble following the conversation. My thoughts have been very dark in the days following. Could be the new meds, could be the effects of the seizure, could be the psychological trauma of the event itself. Or all of the above. At every twitch – I look up to make sure Alicia is near me in case the twitch turns into something else. This isn’t fair to her. She shouldn’t have to pull our camper everywhere all summer. Everyone around me keeps reassuring me that I’ll be fine. But it doesn’t feel that way. Something feels different now. So I try to remind myself of things I’ve learned over the years.

Like when we got done climbing to the top of Mount Kilimanjaro in 2017 I remember looking over to Dr. Deming in a moment of enlightenment as we lugged ourselves back down towards reality. I said something to the effect of “Doc – I think 90% of the difficulty in these climbs are mental.” He shook his head in agreement and smiled as if he was proud of the light bulb that was flickering in my head. (I imagine he thought, “Yeah – it only took you like ten mountain climbs to figure this out!?”) I remember being intentional on that walk back down to never underestimate my own strength, and to never forget how I can handle so much more adversity than I give myself credit for in the moment.

For the love of God, wear a mask.

8 Comments +

  1. Never a dull moment with you! Sorry you have to endure a new journey, but you’ve got so much love and support and personal strength that I know you are going to persevere and Rock On! Love you.

    Liked by 1 person

  2. Hey, handsome – thanks for continuing to share your journey with us. You are and always will be a rock star. I can’t even imagine how each step of this has the potential for such anxiety. Super glad you have an awesome support network – even though you’re basically doing it all super well on your own. Hang in, my friend. You have lots of living that needs to get done and you’re going to make it happen. p.s. I have a WARDROBE of masks. Stay positive/test negative – love you. Debra Peckumn

    Liked by 1 person

  3. God, I love your writing style Justin. Can you please pen a book so we can have another party … pretty pleeeeeeease.

    Liked by 1 person

  4. Your writing is amazing. You really should consider writing a book. Talk about all that has happened since your journey began almost 10 years ago. You have seen and done some really amazing things and some of your journey could inspire others. Love you lots!

    Liked by 1 person

  5. Dear friend,
    You never cease to amaze me on this crazy journey of unpredictability. Great news on your scan though – Celebrate those victories! Always keeping you and Alicia in my prayers. Sending you positive vibes and so much love.

    Liked by 1 person

    1. If only we were closer, we could all have that beer. I’m sorry you’re going thru this, ON TOP of the rest of 2020. Hang in there pal. I’ll be thinking of you. ❤️

      Liked by 1 person

  6. You are both rock stars in my book. You’ve been through so much and come through with such a positive outlook. Love you both.

    Liked by 1 person

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