Getting Back to the Way Things Were

Three MRI scans since my last post and I’m still doing great. No sign of any new cancer growth. The summer has been flying by and we’ve been keeping very busy. Things are beginning to feel normal again. Full speed ahead at work, and many of our weekends have been jam-packed with plans.

The treatments are going well for the most part. Other than feeling really tired and sometimes a little nauseous, the only issue I’ve experienced is hearing loss with the clinical trial drug. As part of the trial, they’ve been testing my hearing at every clinic appointment, since they know some people do experience hearing loss because of the medicine. At my July appointment the audiologist told me that I had some hearing loss. A few weeks later I began to notice ringing in my ear. At my most recent hearing appointment a few weeks ago, I was told that I have had a considerable amount of hearing loss from the baseline check we did before starting chemotherapy. The audiologist told me I’d be a good candidate for hearing aids! Is this what it feels like to be senior citizen? The thought of losing my hearing pisses me off. My first symptom of brain cancer was a headache when I sang music. Years later, the cancer is threatening my ability to hear music. What good is life without music?

Since my chemo was the likely culprit behind my hearing loss, my neuro-oncologist lowered my dose of the shot juice chemo (Eflornithine) by 25%! This makes me happy because the shot juice chemo is so disgusting! The reduction has made the chemo much more tolerable to drink. I just hope the lower dose is able to fight brain cancer as effectively as it has been so far. Regardless, there’s other ways I’ve been fighting.

My Dad and I spent a week paddling and camping in the boundary waters in September.

Alicia and I started running again. We’ve been in a funk all year about all this cancer stuff, so it feels great to get back into a more active routine. I still haven’t gotten my bike out once yet, but we’ve gotten several camping trips in this summer, and a few good nights around the campfire with my guitar and our friends. Back at the beginning of September, my Dad and I spent a week camping and canoeing on the Canada side of the boundary waters. My doctors can continue to pump me full of toxic chemicals, shoot laser beams at my head, tell me to eat right, get rest, and work out all they want – there’s nothing more healing and rejuvenating than some peace and quiet in a forest wilderness. Maybe I could convince Alicia that we need to sell everything and go live in the forest?

Also, I got back on stage again. On August 2 I had the opportunity to join Willie Nelson to sing some gospel songs during his show at the Target Center in Minneapolis! Alicia took a video from the side of the stage (see below). This was arranged by Mickey Raphael, Willie’s harmonica player. I met Mickey years ago while working at the Surf Ballroom (Here’s the story of how we got connected). My bucket list wish to perform in front of thousands in a packed arena has been fulfilled! What’s next, skydiving?

I’m not sure when the next time I’ll be on stage, but my next brain scan and hearing test is on October 25 at Mayo Clinic. I’m hoping we’ll be told that the treatment (and my ears) are still working!

3 Comments +

  1. It’s been a roller coaster of a year for you and Alicia. You’ve walked through the fire and came out on the other side. I know the journey isn’t over, but your zest for life and your positive outlook shine above all. Continued prayers, positive vibes and love to you both.

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  2. Justin: I had ringing in my ears for many years (A#). Maybe a combination of rock concerts or being in an artillery unit in the Army added to it. My hearing loss was getting bad enough to bother others with my “sorry” or asking Sue what someone said. An occasional fool I was when responding to what I thought was said only to find out what I heard wasn’t even close to what was said. Mostly amusing to those aware of my loss. So setting vanity aside I got hearing aids. They come with a necklace that sinks your phone to your hearing aids. I can play music from my phone.
    I end my attempt at encouragement with – who knew socks made noise when you put them on? You got this!

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  3. Hi Justin.. I am so glad to hear from you and read your updates. I was just at a wedding where my nephew was married in wine country. A beautiful scene in wine country in the Walla Walla Valley of WA. Another nephew married the couple. Family is helpful in good and difficult times. I know your family is helping you through yours… Love Joe Jamie.

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