Celebrate

I spent the last few days at Mayo Clinic with Alicia, my mom and dad. My mom lives in Sioux Falls, SD and my Dad lives in Appleton, WI, so they have to drive pretty far to meet Alicia and I in Rochester, MN. I hate the why we’ve got to drive all over to spend time together, but I’m grateful the disease brings the people I love together. Also, it’s funny to give my mom and dad shit about how bad of genes they have (apparently) passed on to me.

On Thursday we followed up with my palliative care doctor (Dr. S). I like this doctor. If I understand his role correctly, his job is focused on my well-being throughout my brain cancer journey. He asks me a lot of questions about what I enjoy doing and what my goals are in life. I want to tell him that my goals are to annoy Alicia and the rest of my family and loved ones for as long as possible. I want to hike the Appalachian Trail. I want to see the northern lights, I want to go back to Nepal and Switzerland, and then I want to hop on a flight to Thailand and disappear for months. I also want to go back in time to see the original Woodstock festival. I want my cake and I want to eat it too. My palliative care doctor will have his work cut out for him, but regardless, he’s going to do his best to make sure my treatments and my disease don’t interfere with the things that make me me. He really thinks I should get on some anxiety medicine, but I’ve got too much anxiety to take medicine that changes the chemicals in my already compromised brain. It doesn’t make sense to anyone around me, but it makes sense to me. Plus, who wouldn’t have anxiety about navigating through an incurable, deadly disease in their thirties?

In my last blog, I mentioned that my doctors reduced my dose of the clinical trial drug due to significant hearing loss. Since they reduced the dose, it’s been so much more manageable! The smaller amount of chemo juice in my chemo juice shot has been so much easier to swallow. And, I haven’t had near as much ringing in my ears. At my hearing test on Friday, the audiologist explained to me that my hearing had improved significantly! Not to mention, I haven’t been spending as much time in the bathroom since my last visit!

Since the dose reduction patient states that he is tolerating the medication better. Most notably he is not having “explosive diarrhea” and the medication is much more palatable.

-Physician assistant clinical notes (10/25/19)
Maybe I didn’t have the shits as bad as Jeff Daniels in Dumb and Dumber, but you get the idea.

I’m grateful my ears aren’t ringing as much and that I can trust my farts again, but I’ve been a little nervous that the reduction in medicine could result in an increase in brain cancer. So yesterday’s MRI had me on edge. It didn’t help that I felt like the MRI tech was a little less talkative after the MRI, as he walked me back to the waiting area to meet my family. Surely he saw something on the scan that he couldn’t stop thinking about, and couldn’t talk to me about!

But as it usually goes in my life, I got myself all worked up for nothing. (Maybe I should get on some anxiety medicine?) After my MRI scan, we met with the brain cancer care team physician assistant, who delivered the news we were hoping to hear:

Overall there is a slight but subtle decrease in the degree of patchy enhancement in the medial portion of the resection cavity. No overall change that the T2 flair signal within this area. MRI is as described above and shows subtle but positive treatment response. Absolutely no concern for tumor regrowth recurrence.

-Physician assistant clinical notes (10/25/19)

They are going to push my next MRI scan out until January, the year anniversary of my re-diagnosis. We left Mayo Clinic with happy hearts and talk of holiday plans and beyond.

Dr. Deming contacted me recently to let me know that Above + Beyond Cancer is honoring me at the organization’s Celebrate! Luncheon in Des Moines on November 7th. According to the website, the purpose of the annual luncheon is to “honor people, foundations, organizations, and corporations who have done extraordinary things to help those on their cancer journey or have helped cancer survivors in some amazing way.” I am grateful and excited to have the honor to be honored, but I don’t know that I’ve really done anything extraordinary. After all, this could have happened to anybody. I’m just annoying enough to talk about it a lot and some people like that for some reason. There’s so many people who deserve the honor before I do. Anyway, I’m not writing about it to brag, I’m writing about it hoping people will support Above + Beyond Cancer! It’s an organization that’s had such a huge impact on my life and of so many others. You can learn more about the event on November 7th here.

Next week I’ll begin my fifth round of chemotherapy. Thank you for the continued support and love and prayers!

8 Comments +

  1. Justin! This is THE BEST NEWS I’ve heard in ages!!! So happy for you and your family. We’ll continue the prayers, positive vibes and all that stuff. Much love to you all!

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  2. Once again you exceed the medical expectations and prognosis. Proving you are a rock star. God is great!! Bless your medical team and we love you. Keep kicking a**

    Liked by 1 person

  3. Hi Justin from faraway in France – this is great news to hear! And proud to know that you are being honored at the A&BC lunch the day after tomorrow- wish I could be there to give you a big cheer! Will be with you all in spirit. Big hug to you and please give one to Dr Deming and to Mary Heukelom (my lovely Nepal room mate) for me too when you see them. How about France next summer? Or a meet up somewhere in Europe if your travels bring you here again. Love and warmest wishes to you and Alicia.

    Liked by 1 person

  4. Great News Justin!!! So happy that things going good! Dustin is doing great also. No seizures for 5 months now. Look us up if you ever get up by Lake Washington! We’d love to see you!
    Dan & Carol Connor & Dustin (with the same scar) 🙂

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