The Scan

The days leading up to an MRI scan suck. I had a headache on the tumor side of my head for a few hours last week. Alicia reminded me that my scan was coming up. She was right. I always get random headaches right before the scan.

I’m so tired of living scan to scan, treatment to treatment. When we found ourselves back in the MRI waiting room at Mayo Clinic on Wednesday, I turned to Alicia and said “Should we just get the hell out of here? Skip the scan, leave the hospital, leave all these doctors and nurses and treatments and tests behind and never come back?” She smiled, but a part of me was serious. One of these days I’m going to convince her we need to pack up our shit and live in the camper on the side of a mountain somewhere.

I think the worst part of scan day is right after the test, after the nurse and the vitals. The part when Alicia and I find ourselves alone in the tiny exam room with the door shut. The exam table with the crinkly white paper that nobody wants to sit on. The instruments and flashlights used to examine and poke and prod are hanging on the wall nearby. I always try my best to resist the temptation to pick up the stethoscope to listen to my pounding heart.

The worst part of scan day is listening to the hustle of feet and hushed voices scurrying back and forth, up and down the hallway past your exam room. The footsteps finally stop outside your door. Papers shuffling, one at a time. Deep breath. The door knocks. This week when the door opened Alicia and I were greeted by more somber Dr. R. He immediately pulled up a chair close to me and said, “We’ve got some bad news today.”

My MRI scan showed some new contrast enhancement in the area where I previously had the tumor removed. By contrast enhancement, I mean halfway through the scans, they inject a contrast that finds its way to my brain. It lights up any abnormal cells. Yesterday’s scan showed some areas lit up that weren’t there just a few months ago. According to the radiology report – my tumor may be growing again.

New enhancement concerning for tumor progression/recurrence along the posterior margin of the resection cavity.

-Radiology Notes (8/26/20)

Dr. R went on to explain that we have a few options. The first, Temodar chemotherapy – the same medicine I took back in 2010 when I was originally diagnosed. But he is not convinced what we are seeing on the scan is certainly tumor growing. He explained there are so many variables at play that give us reason to believe that the scan findings are not necessarily tumor growth.

On the whole, I tend to agree the imaging findings are concerning for potential tumor progression, but not entirely clear for tumor progression. We see some streaks of contrast enhancement predominantly in the white matter, one area in the insula, without any clear nodularity or mass effect associated with them.

-Dr. R Clinical Notes (8/26/20)

As he turned to the computer to show me the images, I stopped Dr. R. I don’t want to see the images. I don’t want to face reality if my new reality is a constant flow of trying to minimize and mitigate the reality of the cells growing out of control within the very conduit of my human experience. Regardless of his optimism, much of the rest of the visit is a blur. I asked so many questions, but I don’t remember many of the answers. I don’t remember feeling much of anything during the visit other than pity for Dr. R. on the account he had to deliver this news to me. My default operating mode steered our conversation from awkward real life and death conversation into laughing and joking about weird, squishy, brain things and hypothetical scenarios, among other topics. None of our joking around hides the fact that we need get to the bottom of whatever is happening as fast as we can.

We could check with a surgeon, who would likely be able to operate, but my doctor thinks this would be too heavy-handed at this point. He explains there are some immunotherapy clinical trials at Harvard University and one at the National Cancer Institute in Maryland that I would be eligible for, pending at least a biopsy confirming that I have tumor regrowth. At the end of the day, we settle on doing another scan next month to see what, if anything happens. It’s scheduled for Wednesday, September 30th.

I’m planning to spend as much time as I can over the next month catching up with old friends, playing my guitar, eating lots of ice cream, and camping with my dog and wife. Campfires, sugar, laughter, and music might be just what the doctor ordered.

9 Comments +

  1. Wish you’d gotten positive news today, my friend. I’ve long wondered why God lets bad things happen to great people. Hang in there and if there’s anything I can do for either of you, do not hesitate to let me know. Sending so much love and big hugs your way!

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  2. Live love laugh! Go enjoy life to its fullest. While you are doing that, I’ll be praying for a clear scan next month! Embrace this beautiful world and take every moment to love those around you. If everyone did this every day, what a great works this would be!

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  3. Justin, We are friends of your mom’s and want you to know that we are holding you up in prayer for healing and peace. George/Lari Kooi

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  4. We r neighbors of your mother and step father, and we wanted u to know we r lifting u up in prayer Justin! We just read your blog , and we were so touched by your candidness, and your courage! You r a wonderful writer, and the emotions u r going through right now r palpable. I worked at Mayo for 22 years, and I know u r in great hands! Your spirit, your courage, and your attitude are incredible. We are praying for peace, comfort, joy, laughter, and healing for u Justin. We will be following your blog and praying for u and your family! We would love to meet u next time u r in Sioux Falls!

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  5. Praying for a better scan on Wednesday, September 30. Am sending positive vibes your way, Son #2. Thinking of you and wishing you the best. From Mom #2

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  6. Hi Justin…goodness, it’s been quite a time since we have chatted. I am sorry to learn that your cancer is back…that stinks!!! What I know about you though, is that you have the strength, determination, support, and optimistic spirit to battle with a fury. My prayers are with you and I will ask my prayer warrior friends to lift prayers as well for your cause. When I think of you, I always smile…especially about our discussions regarding high school…I remember I told you that I would have made you my “technical advisor” if I would have been your principal. I love your example to live each day fully! Stay safe and healthy during this crazy pandemic and please take good care. God bless…

    ~Linda H

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