Are There Adult Merit Badges for This Sort of Thing?

If you're just joining the party, I'd recommend reading my first post as a primer, which includes a few disclaimers and housekeeping items of note.

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My new uniform

Well, here we are on February 29 - Rare Disease Day. 

The day lands a little bit differently when you realize you're now among the less than 5,000 people in the US with a rare type of brain cancer.

Do they give out adult merit badges for this sort of thing? Because I feel like I need a Girl Scout badge or some flare or something to mark this achievement. At the very least, I'll be sporting this shirt more often. I bought it well over a decade ago somewhat on a whim, but have rarely worn it, it's so obnoxiously bright and makes me feel too conspicuous in public. 

But it now seems like a good time in life to start shamelessly wearing it. 

I texted my cousin earlier today who also has a rare disease of his own, one he's had since he was a child, "Happy Rare Disease Day?" 

He responded back, "Welcome to the club. 😂"

(He also added, "A club I don't want to be in." So, yes, even in humor, let's also acknowledge the flip side of that coin. We're both in clubs we'd prefer not to be in. But here we are.)

I then thought later, "Shoot, two people in the same family with two different rare diseases? That feels like it warrants some sort of momentous bucket list-worthy kind of trip."

Oh, wait.

That's right. 

We did do a bucket list-worthy trip last December. 

We just had no clue how timely that trip would be.

Shortly after I was admitted to the hospital earlier this month, I texted my aunt, my cousin, and my friend, Kristen, my three travel companions on our trip to Alaska, and said, "I keep thinking of Alaska. That trip was ordained. I'm convinced. God knew what was about to show up on my doorstep." 

That trip was yet another thing I look back on in recent months and get overwhelmed at the graciousness and kindness of God. It really was the trip of a lifetime. I wrote about it earlier, but also wanted to share the video I put together of the trip. There are a lot of significant moments that will stand out from that week in the interior of Alaska, but what keeps rising to the surface is the memory of how much we laughed. I hadn't laughed that hard and that long in awhile. And then we would do it all over again as we retold and relived moments. The laughter, that "carbonated holiness," as Anne Lamott called it, bubbled up in our chests on a regular basis that week. Those are the memories that will linger with me, the moments I will recall in the months ahead.

(And if you're a fan of the Iditarod, be sure to root for Josi Thyr! She was one of our mushers on our dogsled tour and she's running in this year's race, starting this Saturday!)

Coincidentally, when I put this video together back in late December, I debated on what song to pick. And now in hindsight, I couldn't have picked a better one. 

Thanks, Ben Rector, for supplying the soundtrack of my life. 

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Functional updates:

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

I have a functional MRI scheduled for next week, which is going to help us better assess how much the steroids have helped reduce the swelling around the tumor itself, as well as inform some decisions for possible surgery. I'm still in a place where I'm trying to get clear recommendations from both the lead team of doctors and then the team I sought out for a second opinion, and then ultimately compare the recommendations. 

I saw my primary care provider about my knee. No major concerns there, but it's still a bit puffy, so I've been icing that on occasion and trying to rest it when I can. I'd ideally like to get back into a rhythm of doing some very light workouts, but I'm very aware of the limitations of my body at the moment and know it will take some time for things to get back to (mostly) working order.

Sleep is significantly better and Flash's middle of the night office hours seem to be a thing of the past. But I have decided that Garfield the cat is my alter ego. You gotta watch out for those nap attacks. 

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PS: Want to leave a comment? If you select "Anonymous," would you mind including your name directly in the body of your comment? That way I know who you are!