RunningBarb

RunningBarb is the second of four children. My brother Phil is the oldest. As I was growing up I often thought my real name was “Phil’s sister.” Phil was always involved in sports, adventures, and entrepreneurship. When he was twelve he ran a paper route. (History lesson here: Back in the day boys used to deliver the daily newspaper from their bikes.) By the time he was 18 he had started a landscaping business, which he managed until he retired. Now he lives in Wyoming and maintains hiking trails in national forests. Obviously not a slouch.

One night a few years ago, as he and his wife, Cherie, were enjoying the evening, they heard a huge crash outside. Then the lights went out. Right away he knew that a car had hit the light pole in front of the house. (This is how he thinks. He knows how to identify when something breaks, and even better, how to fix it.) He looked out the window and saw a smashed car crunched at a 45 degree angle up against the pole. He observed little flames under the car, like a low setting for your stove if you were warming up dinner.

Immediately he grabbed a fire extinguisher and ran out. He jumped over his front fence to get to the car. (Sports, right?) By then – it couldn’t have been any more than 15 seconds – the entire car was engulfed in fire. A teenager had crawled out of the passenger’s side window and was now pacing the area outside the heat. “I killed my friend!” he sobbed. Apparently he had been engaging in some daredevil brinksmanship with another driver, and this was the result. 

Phil looked into the car and didn’t see anyone. Then he heard screaming. He heard pounding. It was the sound of the other guy kicking the floor and trying to escape. By then Phil had emptied the fire extinguisher and was calling to the boy, whose name was Levi, to move closer to him. Phil started to grab him and spotted what looked like a black rope around his neck. He moved it away, thinking, “What the heck . . .” Then he realized it was the melted seat belt. He pulled Levi out of the strap and continued tugging, calling “Come on, come on, come on!” The driver came over to help and together they dragged Levi’s 200 plus pound frame out to safety. It was not pretty. Levi had sustained severe burns all over his body and eventually spent more than a year in the hospital.

A few minutes later the emergency medical technicians arrived. 

For this act of courage the Medford, New Jersey Police Department awarded Phil its Civilian Service Award. 

Though he didn’t feel it at the time, he sustained burns on his hand while moving the charred seat belt. 

Phil says that when he saw the car ablaze he never thought “I can’t do that.” It was more like “I’d better do that, because I am not sure who else will.” He did not hesitate.

Phil lost his son in an accident in 2014. In 2022 he saved the life of another parent’s child. 

His actions that night represent love in action.

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Each of us is more than the worst thing we’ve ever done . . . 

-Bryan Stevenson

Do you know about Bryan Stevenson, the lawyer, educator, and humanitarian? Over his 40 year career he has worked to reform the legal system of punishment in the United States, overturn the death penalty for more than 130 people, expand access to legal and pro bono defense, establish a National Memorial for Peace and Justice, and much more. 

Bryan Stevenson was born in a small town in Delaware in 1959. His father was a lab technician and his mother an equal opportunity officer. He grew up in a home where education was emphasized. He went to church and sang in the choir. The church promoted a philosophy of uplifting people even when they had “fallen down.” This influenced him and his later work.

He grew up in a segregated environment and watched as his mother openly protested these conditions. Bryan was a top student in high school and college, eventually earning a law degree and a master’s degree in public policy from Harvard. During law school he worked for an organization that represents death row inmates. That was the experience that set the trajectory for the rest of his life.

After law school he worked for the Southern Center for Human Rights, then founded the Equal Justice Initiative. In one of his first cases he was able to exonerate and have released from jail Walter McMillian, who had been sentenced to death for a crime he did not commit. Since then, Bryan has scored a number of victories on behalf of people unjustly impacted by the criminal system, including those who are poor, uneducated, part of a minority group, young, or a combination of all four. His work is described in his 2014 book Just Mercy, which was also made into a movie. Reading this book helps you see how being “tough on crime” harms vulnerable people and unjustly punishes the innocent. If you want insight into how our system of crime and punishment really works, read this book. Warning here, it’s a hard read.

His list of successes and achievements is seemingly endless. He takes on the most tragic and difficult cases and provides relief for the people impacted. He educates the world about the damage wrought by the significant inequality in our country and the world. He teaches us about mercy and redemption. He does so with grace and humility.

The work of Bryan Stevenson represents love in action.

Looking around in the world it is easy to see a lot of hate, oppression, vindictiveness, and you can add to the list, I’m sure. Seems like it takes an act of courage to show love. Here are some examples we can look to.

One is the Walk for Peace undertaken by 19 Buddhist monks, from Fort Worth, Texas to Washington, DC. The journey took 108 days and covered 2300 miles. Thousands came out to greet them in person en route, including 10,000 admirers in Richmond. Their online presence reached 2.9 million followers on Facebook and 1.9 million on Instagram. They met with many officials from state and local governments. They received pins, badges, and other mementos from law enforcement officers.

According to its leader, Bhikkhu Pannakara, “We walk not to bring any attention to us, but we just hope that we raise awareness of peace to all the people who will meet along the road.” 

He also explained “Love and kindness does not need power, money, or a title. It is simply the choice to stop before hurting, to sharpen before speaking. If each person takes just one second to ask, ‘Will this hurt anyone?’ the world would already be kinder.” 

A second is the ResistDance, a performance by the First Amendment Troop. This dance honors the lives of Renée Macklin Good and Alex Pretti, two American citizens shot to death by our government’s paramilitary ICE agents. This group of artists devoted hours of creativity and practice to develop precise and expressive steps and movements that tell the stories. They literally put their whole selves into it.  

A third is the knitting of the “Melt the ICE” hat being done by thousands of crafty folks around the world. The pattern for this hat is based on the hat worn by Norwegians during the World War II to protest the Nazi government. The Nazis felt so threatened by the wearing of this hat that they banned it. These knitters work their hands to stand for what is right. Proceeds from the sales of the pattern – more than $250,000 and counting – go to immigrant mutual aid groups in Minnesota.

We may feel small and unable to stop the flow of hate. But maybe we can seek out sparks of love, and even create some of our own.

What are some acts of love that you have seen lately?

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Remember last spring when the current president wrote a bunch of executive orders punishing law firms he didn’t like? Some of them sued, and won. The United States Department of Justice was set to appeal those decisions, then on Monday, March 2, dropped its appeal. Hooray for the Constitution! On Tuesday I wrote the blog below, for posting on Thursday.

Then – on Tuesday, the administration changed its mind, filing a motion to drop the motion to drop the appeal. Got it? So they are going to press on with an appeal. Lucky for them, they have unlimited resources in the form of the tax dollars you and I pay out of our hard-earned income. Unlucky for the law firms and us, this is a continuing, expensive battle to protect our Constitutional rights. Where, just where, is our country headed. 

Tuesday, March 2 Blog

Last spring – which feels like around 350 years ago now –  the president of the United States issued a series of executive orders aimed at punishing some of the nation’s largest law firms. He chose firms who took positions he did not agree with or who represented clients he did not like. He accused them of overturning elections, following illegal policies related to hiring and employment, and undermining justice, among many other complaints.  

As he often does, he offered to strike a deal with these firms. If they capitulated to his demands and provided millions of dollars of free legal representation to his administration, he would lift the executive order. Think about it: The president will use the power of one of the most well-funded Justice Departments on the planet to go after you on arbitrary grounds on a whim, but will leave you alone if you pay a bribe. 

While some firms abandoned their ethical responsibilities and caved, others stood up to protect the Constitutional rights of themselves and others. As I wrote in a previous blog, my favorite law suit of all those being filed against the administration (now up to 670) was the one brought by the American Bar Association on this very issue. The ABA claimed the executive order was issued for retaliatory purposes and violates the Constitution. Several law firms sued as well. 

The firms won their cases at the district level, and the administration was set to appeal. However it decided to drop its appeal four days before its appeals court brief was due. Seems like the Justice Department was not so sure it would win at this level. Therefore, the decisions invalidating the executive orders stand. 

It’s kind of maddening when someone or something has to spend a year and boatloads of money to defend against an action that is so blatantly unconstitutional. 

All the same, I hope the success of these law firms serves as an example to other powerful entities who are considering forsaking their principles for short term gain. While the win is good news for the rule of law, it is also a reminder that none of us should take our rights for granted. We must be diligent in protecting them, electing leaders who respect the Constitution, and being sure to participate in the democratic process. 

For Mr. K, who never misses a beat.

March 2026: L’Chaim!

Okay, I couldn’t let the story end on 17, it had to be 18. Why is that?  

In Jewish tradition, the word for “life” is “chai,” made up of the Hebrew letters chet and yud. In Hebrew each letter is associated with a number. The numerical value of chet is eight, and the value of yud is 10. Combined, they add up to 18. (Check my math here, just to be safe.) If you are giving someone a monetary gift, say, on their bat mitzvah, it is traditional to give a multiple of 18: 18 dollars, 36 bucks, 54 smackers, etc. 

So, with this 18^th entry I offer L’chaim! To life!

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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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For Mr. K, who never misses a beat.

June, July, August 2025: Getting Even Better-er 

For me, things continued to improve (mostly). I kept biking until I was up to 54 hilly miles on a steamy day in July. My running pace increased. My swimming was smooth. Ultimately I climbed two more mountains in the Adirondacks. Remember how it took me 13 hours to go 13 miles the last time I was there? I wanted to see if I could do better. I practiced by going back to the Appalachian Mountains and hiking a leg of the trail that went up around 500 feet in under a mile. I went up and down the path six times, covering more than 11 miles and more than 3000 feet of elevation. Before I started I was not sure how I would do on this. It was way more than I had done in a couple of years. It was a test. By the end I was tired, but fine. I could have kept going. But – all right, already. 

So now I felt like I was in the ballpark of bagging another Adirondack 46er. The one I had my eye on was Seymour, which was in the neighborhood of the two we did in 2023. The hike to Seymour is 14 miles long with 2870 feet of elevation. I did not have my heart set on doing it. Mr. K and I agreed we would take more of a Lemme give it a try and see how I feel approach. I wanted to be optimistic, and also realistic. If I was moving too slowly to be able to finish in a reasonable time I would stop and just accept that my 46er days are over. Didn’t wanna be stuck out on a mountain in the dark again! However . . . if I felt okay, there was also Seward, which was the third one on our plan in 2023, the one I didn’t get to try. We could take a day or two of recovery time after Seymour and head up Seward. 

We had great conditions. The trail to Seymour was mostly dry. The first few miles were flat, then the climbing began. Up a rocky path until we hit some boulders which we could scale only by pulling ourselves up on the adjacent trees. It was like wrestling with a giant slab of granite. A full body experience. Then up and up and up on the switchback path until finally I spied the wooden sign with the peeling name of the mountain nailed to a tree. Exhilaration.

A few days later we climbed Seward. 

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For Mr. K, who never misses a beat.

May 2025: Will RunningBarb Ever Run Again?

A little more than a year after I finished chemotherapy I decided it was time to try to run again. It’s funny that I still had the name RunningBarb when I hadn’t been able to run for so long. Of course, I’m the one who gave me the name, so I could do whatever I want with it. I did think about changing it. But I considered it to be a little joke on myself. A taunt, kind of, from the universe: “RunningBarb, who can’t even run!” Reminding me that you can’t always get what you want. 

I had been doing a walk/slow run combination for a while, following the course I used to take when I ran all the time. One night while lying in bed I thought RunningBarb, if you want to be worthy of your name you need to put on your big girl running shorts and actually run the whole way. I don’t mind if you are super slow, but you have to do something that looks like running for the whole five and a quarter miles.

So, I put on those shorts and set out. Near the end I had a big chant going on in my head: Youcandoit!Youcandoit!Youcandoit! 

And I did.

After that I mostly ran twice a week. I also continued building my biking. From there things just kept getting better. More visits to The Darlings, more long trips, like to Big Bend National Park in southwest Texas, with its amazing desert hikes. (Sure is far!) 

In the amyloidosis healing world, though, there were a few disappointments. The promising drug, birtamimab, which was being developed to remove existing fibrils, did not reach its “endpoint” in the research trials. The main goal was to reduce mortality over a certain time frame, that is, keep you from dying from the disease. The study showed it did not do that to the extent necessary to move it forward. The funny thing is, that doesn’t mean the drug didn’t do anything. It may have removed fibrils and helped people improve physically. But drug trials need a more clear and quantifiable outcome than that. 

The other drug in trials, anselamimab, which also was being designed to removed fibrils, also missed its endpoint of reducing mortality. There was a caveat that it helped a subgroup of people live longer and make fewer hospital visits. But the specifics of that are not yet available.

This means that the only two drugs that I know of to eliminate the fibrils are out of the picture. There is nothing available or in the pipeline to get rid of them.* Our bodies are on their own. 

*I have since learned that there are several other drugs in the works, such as zamubafusp alfa, whose name I like because it is quite similar to the strong password I use for Myspace. 

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For Mr. K, who never misses a beat.

April 2024: Getting Better

Shortly after the group meeting we took a trip to Bloomington, Indiana to view the North American Eclipse.  We had a beautiful, clear day as the crowds gathered in a local park to prepare. There were food trucks, music, ice cream, and special eclipse glasses. Everyone was in a celebratory mood as we waited for Nature to awe us. Even more than she usually does. As time got close the crowd became quiet and meditative. Soon the moon began blocking the sun, then completely covered it. The throng erupted in shouts and cheers. What to make of this rare event? Isn’t the world a magical place? The period of darkness lasted over four minutes. I stood there trying to absorb every molecule of the experience. 

Soon it was time to visit The Darlings again. One of them would be running the Leadville Marathon, a 26 plus mile slog that started at an elevation of 10,000 feet and went up to 13,000. I wanted to be there when he crossed the finish line. Forget about whether he would be able to do it, would I? That is, would my body be able to bring in enough oxygen to function at 10,000 feet? I felt that the flying would be okay, since I had done it before. But the air is a lot thinner at higher elevations. How would that work? I would just have to see how I did.

The weekend of the big event came. Flying was fine. Driving to Leadville was fine. Walking around was fine. Everything was fine. A milestone. Oh, and The Darling finished the race, too. Got a big fat medal.

We also had taken a few other short trips here and there. Each time I made sure I knew where the nearest emergency room was just in case.

So the next crazy thing to try was a longer trip. I had been to 49 states thus far, and Mr. K 48. The only one I had left to touch was North Dakota. He needed both the Dakotas. We had a month between each of my shots. That was enough time to cover the territory. Now, you can be in pretty isolated places in those states, especially in the national parks, particularly during the time we planned to be there, in the fall. There would be no emergency room nearby. No ranger on site. Maybe not even a cell signal. It seemed a little risky to go so far from medical help. On the other hand, I hadn’t been in the hospital in nine months, the chemotherapy – which contributed to two of the visits – was over, and I felt I had a better sense of how to keep my fluids in balance. Plus, I had a diuretic in pill form if needed. And what is life for, if not to visit North Dakota?

So off we went. I admit, I was a little nervous in the Theodore Roosevelt National Park, at a primitive campground, with only a pay phone a mile away if I needed anything. But I kept my logical head on tight. And what a trip it was, with the highlight being the sighting of the Comet Tsuchinshan-ATLAS in the night sky. The last time it had been seen was 80,000 years prior. The black firmament of North Dakota made it visible to us. Made me feel kind of teeny tiny.

While this new traveling to and fro business was going on, I was also working on my exercise routine at home. I was walking every day, starting out with short distances, then adding, then trying to go faster. At first it felt like someone was squeezing my heart when I tried to exert myself. Over time that lessened.

I started slow with biking, also, gradually adding miles. Back in the pool I began a walking/swimming combo. I had previously swum laps in the competition pool, which had a depth of 13 feet. However, I wanted to be able to touch the floor if – well – something untoward happened. And I’m really not that tall. So I went into what I like to call the “kiddie” pool. That’s where people do their water walking and aerobics and stuff like that. The deepest part is only five feet. I started out just walking. Over time I felt comfortable enough to swim a lap, then stopping to check my breathing and heart rate. Then two laps, etc., etc., etc., a couple of times a week, over a period of weeks. Eventually I was up to more than two and a half miles of continuous swimming. Okay, RunningBarb, you’ve proved your point. 

Because I was getting better, it was obvious that the “T for transplant” word was off the table. Thank goodness.

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For Mr. K, who never misses a beat.

March 2024: Hope?
 
Soon after the end of chemotherapy I was invited to a support group meeting for people with amyloidosis. It was held at the hospital where I was being treated. I was really looking forward to this. I would meet others with this disease, find out what is positive in their lives, maybe get some hope and inspiration even, maybe?
 
The agenda indicated that there would be a session with medical experts, then one with regular people. That’s the one I really wanted to see. As far as I could tell, although there was a way to keep the disease under control, there was still a lot of bad news associated with it. But talking with people in my position? I thought that would help.
 
As I expected he medical panel opened with lots of bad news about all the yucky stuff that happens when you have amyloidosis. And it got worse. I learned even more terrible information about it. Like you can get it in your gastro-intestinal tract. And your liver. And your nerves. I had been blissfully oblivious to this. There were lots of questions from audience members about all the awful things they were going through. One person asked about palliative care. Isn’t that what you get when you are ready to die?* I had brought a book with me to take notes. I left it blank except for writing “Never coming back here.”
 
And we never had the session with our amyloidosis peers. The day was mostly a disappointment.
 
But there were a few glimmers of hope. Dr. Oncologist was on the panel. When asked about recovery from the disease she said something like “Sometimes people just get better on their own.” Sometimes people just get better on their own? Okay, well guess what, RunningBarb intends to be one of those some people. If it happens to some people there is no reason why it can’t happen to me too. I am going to do everything I can to make it so.
 
Also, there were two presentations from drug company representatives describing drugs under development to address amyloidosis. While the Dara-CyBorD combo is good at stopping progression of the disease, there is no medically known way to remove the proteins that are stuck on the organs, called fibrils. When I previously asked Dr. Oncologist why they couldn’t be vacuumed out, maybe using the same technology that allows you to cut off pieces of the heart (only half kidding here), she explained that the fibrils get embedded into the fibers of the organs, sort of like fruit in a Jello mold. As if we needed another reason to hate Jello. Or, I asked, maybe the body could just dispose of them, like it does some early cancer cells. But that doesn’t seem to work either. 
 
These drugs being studied, birtamimab and anselamimab, were being designed to tell your immune system to gobble up these no-goodnik fibrils. So your immune system can fight the fibrils, maybe, they just need a little help. Still not a slam-dunk remedy, but encouraging all the same. The results of the trials were promising, but there was a long way to go. The studies were still underway. If the results were good, the drug would have to go through the Food and Drug Administration approval process. If either or both were approved it would be a while before they could come to market. Once they came to market they might not be appropriate for my specific situation. I really, really, really wanted to be in the clinical trial, but I was not eligible. I would have to wait it out.
 
The third glimmer came from someone Mr. K struck up a conversation with while I was in the bathroom. This guy had finished with his chemotherapy and was now becoming a normal person again, although maybe not yet the normal person he was before all this amyloidosis mess started. He said that he used work out a few times a week, doing high intensity interval training (HIIT) and being pretty athletic. These days he wasn’t up to the HIIT, but he was back at the gym lifting light weights. He said that going off chemotherapy was a “game changer.” He also said that he was in the birtamimab trial, he believed he received the drug (not a placebo), and it made him feel better, more energetic. This was encouraging.
 
And there might have been a fourth, although I didn’t notice it at the time. In the question and answer session with the doctors, someone mentioned that when he swims, he gets purple spots on his legs. (People with amyloidosis frequently experience bleeding under the skin, usually around the eyes.) I missed the answer about the leg spots, but all I could think was, You can swim? I would be so happy to be able to swim again. Long or short distance, I don’t care. To be able to put my body in the water and feel it flow over me while I move would be the most delicious thing in the world. In my state I couldn’t fathom how he had the energy to swim. But the fact that he could stuck with me.
 
So now I was off weekly chemotherapy – two months early! – and had only 20 months of immunotherapy left. Let’s see what happens.
 

* I have since learned that palliative care also refers to care for people with severe illness. 

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