Medical Adventures #17

For Mr. K, who never misses a beat.

February 2026: The End. Ish.

By September 2025 my echo echocardiogram showed a great deal of improvement in my heart. Not perfect, but I’m calling it good enough for now. Unfortunately, my kidneys still didn’t look so great. But Dr. Nephrologist told me I would be fine as long as they remained stable. Of course, I didn’t want stable, I wanted better. On the other hand, one of my other doctors told me people could live “for years” with my stage of kidney disease. So there is that.

It’s funny, I don’t even notice my poor kidney function. You would think that if your body doesn’t filter waste very well you would feel sick. Dr. Nephrologist told me that people can be at the point where they need dialysis and not have any symptoms. Very strange.

I once watched a webinar where there was an example of a woman with amyloidosis whose kidneys eventually got back to normal. It took eight years. I guess I can be patient.

In October 2025 I received my last (for now, and I hope forever) jab of Daratumumab. The oncology nurse asked me if I wanted to “ring the bell.” That’s a ritual to mark the end of treatment. I did not want to do it. Sure, my treatment was finished – for the time being, anyway. There’s always the possibility of relapse. And anyway, I don’t see life as a series of beginnings and endings. I see it more like you are standing on a surf board catching a wave, riding high above the water, feeling like you could sail there forever, even up to the heavens, then you come down a little and have to shift around and try to stay on top and not to fall off, and especially to avoid getting eaten by a shark. (Okay, I did try surfing in Hawaii, and I spent as much time splashing in the water as on top, so maybe it is not the best metaphor here. But you know what I am saying.)

Instead of clanging a ringer, Mr. K and I celebrated by spending nearly seven weeks in Japan.

These days I feel normal and happy. I even sleep lying down instead of sitting up. That was a big step! And I am glad to be alive. The past two years have been hard for me to wrap my head around. Did all that stuff really happen? A ten in a million disease? And I’m mostly recovered? What a miracle to go from being so debilitated, to biking hills and climbing mountains. Remember when RunningBarb couldn’t run? 

What a marvel. Science. Doctors. Modern medicine. They saved my life.

And as hard as the disease and treatment was, it wasn’t nearly as bad for me as it is for many people. A lot of suffering and incapacitation comes along with this condition. I was one of the lucky ones. I had an almost-diagnosis at the Big Boy Hospital, exceptional treatment at the Amyloidosis Center of Excellence, and Mr. K by my side through all of it. In fact, Mr. K has been there for like, 150 years, since 1984, through a globe trotting life, a big fat wedding, law school, The Darlings, and every other twist and turn in between. Does it get much better?

If you ever lie awake at night thinking, ”Hey I wonder if RunningBarb lives a charmed life?” there’s your answer.

And I also I give thanks to you, Loyal Readers, who have provided comfort, support, and positive energy over these past two months. Your feedback has been encouraging and gratifying.

How do you explain it? The mystery of the universe? Maybe I am one of those people with a bad disease who loves life and celebrates everything around them and sees every day is a blessing. 

I may die of this disease, or maybe not. Maybe one warm summer evening I will be going to the store for hot dogs and wine and wind up in the belly of a big ol’ UFO. Maybe I will be around on Earth for a long while. Who knows what’s coming up next around the bend?

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