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.
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.
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 18th entry I offer L’chaim! To life!
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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.)
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.
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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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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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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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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.
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One night during the icebreaker for a Very Important Zoom Meeting (VIZM) we were asked “What goal do you have for the coming year?” People named wanting to learn to play the cello, go sky diving, visit Ecuador, that kind of thing. I smiled cheerfully and said I looked forward to painting with watercolor. What I didn’t say was I want to stay alive.
Somewhere in the midst of the hospital visits and chemotherapy a strange rash emerged across my torso. Dr. Oncologist recommended I see a dermatologist, and I made an appointment. The soonest one I could get was a few weeks out. By that time the rash was gone, and boy, did I appreciate that. I kept lifting my shirt and looking at my clear, pink stomach. So smooth! So untarnished! So healthy!
But they say you should see a dermatologist once a year, so I kept my meeting. On the day of the appointment I could barely walk the short distance from the parking garage to the office building. Luckily there was a bench on the way. I really grew to appreciate benches during this time.
I pointed out to Dr. Dermatologist a pinkish spot on my nose that had been there for years. I figured it was some sort of sunburned patch, and I had been massaging Vitamin E into it. He took one glance at it and labeled it “pre-cancerous.” Okay, didn’t see that coming. He said that there was a one in ten chance of it developing into cancer. We could just watch and see what happens. Or we could get rid of it now.
Old RunningBarb would have said “A one in ten chance? That’s nuthin.’ I don’t think I’m going to get cancer. Let’s just wait.” Today’s RunningBarb, harboring a disease that occurs in 10 in a million people, replied “Let’s get rid of it.” So we did.
After my latest jaunt to the hospital I was assigned yet another Heart Failure Nurse. This time she provided a service I needed. From time to time in the evening I noticed my heart rate suddenly spike. I was not short of breath, but I was worried I would be soon. I wanted to do everything I could to stay out of the hospital. So I would call her and she would figuratively hold my hand until my heart rate went back to normal. It was probably more of a psychological help than anything, but it was valuable to me. She also checked in with me from time to time on Zoom. I liked being able to see her when we talked. I trusted her and was glad she was around.
But every time I saw my monthly lab reports I was pretty horrified. This number was too high, that one was too low. There was a lot of red – not just red, but fireworks in the sky red – indicating bad news. There was very little green. How am I still alive? I wondered.
Then, I received a notification on my watch that I was not up to speed on my six minute walk test. Six minute walk test? I had never heard of it either. Turns out there is an evaluation used for people with heart failure to see how far they can walk in six minutes. If you can walk 500 meters in six minutes you pass. I couldn’t even do that but hadn’t known it. Thanks, Apple, for brightening my day!
On the other hand, during all this time, with all these shenanigans, what were those crazy lambda chains up to? Guess what? They were dropping. Three weeks after my first treatment they were just above normal, and five weeks after that they were normal, where they have (mostly) stayed. A lot of my other blood work still was crazy, but this was the main source of the trouble, and it looked like it was getting under control. “Complete hematological remission” declared Dr. Oncologist. Science, right? Modern medicine, right? Doctors who know what they’re doing, right?
Despite the good news with my lambda buddies, I still felt grey and was dealing with intermittent heart racing. One night I was in another one of my VIZMs when I received a notification from my watch telling me that my heart rate was 123. While I was just sitting there. Doing nothing more than thinking and talking. I could feel it pounding. This was nuts. And back in the regular world it was just getting harder and harder to go for even the slowest, most mellow walks. I felt like someone was squeezing my heart. Dr. Oncologist had reduced the dexamethasone dose a time or two in order to help take the strain off my body. Still, I was not in a good place. But my only choice was to stick with the chemotherapy the eight more weeks until it was over.
Despite these bad feelies I knew I was better off than many. The disease itself can cause severe fatigue, shortness of breath, swelling in the legs and feet, numbness and tingling in the hands or feet, weight loss, and a lot of other icky stuff. My only symptom was not being able to exercise as vigorously as I had previously. Then, the treatment can cause additional bad stuff than what I experienced – nausea, vomiting, constipation, neuropathy, muscle weakness, and on and on. I might have been queasy around food, but I always managed to eat and keep everything down. My muscles twitched and cramped at odd times and in unusual ways, but it was not something I couldn’t deal with.
The bottom line of all of that is sometimes people die from amyloidosis, and I was still kickin’, That was good, right?
Aside from that, there’s a lot of other stuff people have to get through in life. I volunteer with an organization that supports letter-writing to incarcerated individuals. I often communicate with guys who have had a lifetime of traumatic experiences and are now sitting alone in solitary confinement. People face seriously tough challenges.
Soon it was time for a meeting with Oncology Nurse Practitioner. You have to know, RunningBarb normally would rather eat worms than complain, but. . . I kinda let her know what was going on. She listened.
Then I went to another part of the hospital for my treatment. A few minutes later she showed up, pulled me into a private room, and told me she had consulted with Dr. Oncologist, and they agreed that I could stop the weekly chemotherapy and just continue Daratumumab on a monthly basis.
Because I gave birth to two wonderful Darlings, I don’t want to say this news made this day the happiest day of my life. So I won’t. Buuuuuuut . . . . . . . . .
Chemotherapy was over. No more cell-and soul-killing Cytoxan. No more fluid-retaining, sleep-depriving dexamethasone. No more Bortezomids knocking around those proteasomes, whatever they are. No more grey.
Take that, six minute walk test! Take that, crazy heart rate for no reason! Take that, yucky yuck feeling! Just one shot a month, and my body could start to recover from the ol’ chemotherapy one-two punch. It was good news.
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December 2023: RunningBarb’s Back! (at the Hospital)
I was determined to keep whatever fitness I had left, so I did a lot of walking, yoga, Pilates, and strength training. When I was tired I pushed myself. I was afraid that if I started to lose even more conditioning I would never get it back.
We had a trip scheduled to see The Darlings in Colorado in December. The Daratumumab was suppressing my immune system, and airplanes are full of nasty germs. Would I pick up something unpleasant in the air? Also, after my most recent bout with the not-being-able-to-breathe thing, I was a little concerned. Denver is the “mile high city.” A lot of people complain about thin air when they get to Denver. And airplane cabins are pressurized similar to an altitude of 8000 feet. Was this 8000 feet scenario going to work for someone with heart failure and possible fluid retention? I did all kinds of research on portable oxygen machines. Having been to emergency rooms twice for -well – emergencies, I was a little nervous that something super crazy might happen mid-flight, if you get my drift.
I talked it over with Dr. Advanced Heart Failure Cardiologist, and he told me to increase my diuretic before the flight, and I did not need a portable oxygen machine, and I should be okay. He also told me to bring my bathroom scale with me and monitor my weight. If I gained too much that meant I was retaining water and should call him. I thought it was a little weird that I would be unpacking a scale for TSA to inspect, but I know that they have seen stranger objects. Since the trip was green-lighted by Dr. Advanced Heart Failure Cardiologist I felt satisfied, and then I could relax enough to look forward to seeing my Darlings!
We had a great trip to Colorado. I definitely was slow walking up the hills of Golden, but everyone was patient. I had investigated where the nearest emergency room was if needed, so that was a small degree of comfort. We had a fantastic visit. You can read about it here, here, and here. I managed to do okay the whole time. It was kind of a relief.
Back at home I picked up my routine again, but things were changing. I was getting more and more tired. Still, I was determined to stay true to exercise. Until my body told me it had had it.
When I went for walks I tried out different parks to keep things interesting. One Sunday afternoon I was promenading on a path with some minor hills. Really, at that time things that looked like hills would have been barely noticeably a year or two earlier. And sure, there was that funny feeling of a death grip on my heart. But I did it, yay for me. I got home and noted a funny gurgling sound coming from my chest that had been around for a couple of days. No matter, I was noticing a lot of weird things about my body. At the same time, my heart rate and blood pressure had been coming down, so those were positive developments. Nothing to worry about.
That night when I was lying in bed I felt my heart pounding and looked at my heart rate on my watch. It wasn’t just pounding, it was racing. Then I noticed I needed to take more breaths to get enough air. Oh, here we go again. Off to the emergency room.
In line ahead of me was a high schooler with a booboo on his knee. I sat there gasping for breath while he explained his sports injury. I wondered if he had ever heard of urgent care centers and whether his parents would be sorry once the bill for this so-called emergency came.
Finally he was done, and it was my turn. Ms. Intake asked me what the problem was. “I can’t breathe,” I answered, and started to cry. They brought me over a wheelchair and an oxygen tank and rolled me back to a bed.
By now I was pretty familiar with the drill. X-rays, pee and blood samples, etc., etc., etc. This time Dr. White Coat explained to me how bad my heart was. I felt like he was blaming me for it. Not my choice, Dude. He told me I might be there for two days. I had A Very Important Zoom Meeting the next night. I considered whether it would be viable to attend the meeting from a hospital bed. I decided it wouldn’t be a good look for me (as I have established, hospital gowns are not very flattering), plus there would be a lot of noise and distractions, and how would I explain those away (awkward!), plus, guess what, I knew I did not need to be there for two days to get this thing resolved.
“I have A Very Important Zoom Meeting tomorrow night at 7:30,” I announced. “I need to be out before then.”
Another thing I have established here and here is that emergency rooms are interesting places. In fact, you won’t believe this, but shortly after I got there some guy came in with the exact thing I had – heart failure and fluid in the lungs! Small world! You would think I would be inclined to reach out to him and be his friend. But I learned he was 86 years old. I was 64. I really felt like I was a little on the young side to be experiencing such a mess. I guess I really couldn’t relate to him. On the bright side, the staff asked him whether he had an advance medical directive, but they didn’t mention that to me. I thought that meant they thought I was in better shape. Or maybe they just forgot.
Well, my watch told me I did not get any sleep that night, but I was out in plenty of time for my Very Important Zoom Meeting, and that’s what counts.
After my third time with all that brouhaha I decided I needed to get more strict in order to avoid a repeat incident. I started sleeping sitting up. I started a journal, measuring every ounce of water I drank, keeping to my two liter restriction. And I began writing down every single thing I ate and how much sodium it contained, making sure I was well under my 2000 milligram limit.
Let me tell you about reducing salt. There are lots of videos and articles on the internet advising people with heart failure that if they ditch the salt and just use, say, a handful of parsley, everything will taste great. “You won’t even miss it!” they promise.
Dude: Don’t pee on my leg and tell me it’s raining. Do you know what your food tastes like when you remove the salt? It tastes like it needs salt. So you have to accept that a lot of your food will not taste very flavorful.
I also realized my strategy of trying to hold on to whatever fitness I had left by pushing myself was not working. I decided to back off a bit and just do what felt comfortable. I learned that the day of chemotherapy the best thing for me to do was to nap if I could. The next day I could do an hour of slow flow yoga. The second day I could do a slightly more energetic version. Next day, Pilates. The day after that I could go for a walk. After that I could mix it up with strength training or walking. But I had days, boy did I have days, where things did not go as planned. Sometimes I just had to stop in the middle of things and sit down. I would go for what I hoped would be a pleasant walk in the woods, feel completely rundown and exhausted, come home after a few minutes, and dissolve into tears at the kitchen table.
I also noticed everything started to turn grey. I looked in the mirror and saw grey. My skin looked grey. I felt grey. Food tasted grey. My colorful chemotherapy chart appeared grey. My outlook turned grey. The sky looked grey. This must be what suffering feels like.
At my next appointment with Dr. Oncologist I reported all this. That’s when she brought up the subject of organ transplantation. Yes, organ transplantation involving someone else’s heart and kidneys (that they are not using anymore) placed into and attached to my body. Another Phrase . . . oh, never mind.
I nearly fell out of my chair. Was I really that bad?
She explained that it is not uncommon for people with amyloidosis to receive transplants. People can do very well after the procedure. She will continue to track all my labs and numbers and see what things look like after the chemotherapy is finished. They wouldn’t do anything just yet, but it was an option on the (operating, I guess) table.
Now I felt worse than ever. My organs were so bad that they might even be beyond repair. I tried to imagine going through the process of finding a donor, going through the surgery, recovering, taking anti-rejection drugs, and lots of other things that I didn’t even know about. It seemed overwhelming and other worldly.
But no one was recommending anything just yet. So I should just stop thinking about it and wait and see.
I had an appointment with Dr. Advanced Heart Failure Cardiologist not long after that. By now at least I was past the shock factor. I asked him about the possibility of obtaining a donor. According to Dr. Advanced Heart Failure Cardiologist, it actually is easier to obtain a heart and a kidney than just a heart or kidney alone. Two for the price of one! That’s a deal I can get behind. He also said that once people have their transplant they can go back to living a normal life. One thing, though, they can’t eat sushi. Which is okay with me, because I never eat sushi.
I started thinking that if a transplant is what it takes to save my life I guess I have to be open to it.
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The next night as I was lying in bed I felt my heart pounding, and I looked at my watch. It wasn’t just pounding, it was racing. Then I noticed I needed to take more breaths to get enough air. Oh, I have been here before. I called Dr. Advanced Heart Failure Cardiologist. On his personal cell phone. Yes, he had given me his cell phone number and told me to call him if I needed anything! Ultimately my blood oxygen level was getting pretty low, so he told me to go to the emergency room.
When I got there, there was a lovely family ahead of me. Seems the little girl had fallen down and gotten a booboo. She looked fine to me. I sat there gasping for breath while the father, with a chuckle, told Mr. Intake he thought she was fine, he just wanted someone to double check. I wondered if he had ever heard of urgent care centers and how he would feel once he double checked the bill for this so-called emergency.
Finally they were done, and it was my turn. Mr. Intake asked me what the problem was. “I can’t breathe,” I answered, and started to cry. They brought me over a wheelchair and an oxygen tank and rolled me back to a bed.
I had a bunch of tests, x-ray, blood, urine, blah, blah, blah. Seems that I was retaining too much fluid because of the chemotherapy. They gave me an IV diuretic, so I had to pee a bunch of times during the night. There was one bathroom across from my room, but often that was full. An emergency department is a busy place! So I had to go over the river and through the woods for the next closest one. Took about a year to get there and back. Lucky I brought my map and compass.
As I have previously described, there is no privacy in emergency rooms. So while you’re lying in bed waiting for pee to happen, you hear a lot. There was the woman two doors over who was coughing so hard I was afraid she was going to injure herself. She was going through a rough time for sure. I hope she ended up all right.
Then there was the guy in the room next to me who brought along two Friendly Police Officers to keep him company. He had a broken nose. I don’t know what happened to the other guy. But this guy explained to them how it was the other one who started everything and who was at fault. The Friendly Police Officers were very – well – friendly. But sometime in the middle of the night they took him out in handcuffs. Before they left the Friendly Police Officers had some interactions with the Floor Nurses involving donuts. Always pays to stay on everyone’s good side, and what better way than through sweet treats?
When the morning came I sure was ready to leave. They still kept me a while to check on this and that. Finally, late in the afternoon I was out.
Guess the chemotherapy was a little harder on me than I first thought.
Both the hospital and my insurance company assigned me a Heart Failure Nurse to keep tabs on me and make sure I had everything I needed. They were as nice as could be, but I was already getting good care, my fluid situation was balancing out, and I had doctors that I could contact anytime I needed to, so there was not much for them to do. Still, I was glad they were there.
Another positive – I had health insurance available to me through my state’s health care exchange made possible by President Obama’s Affordable Care Act. I saw the many thousands of dollars that were being billed and paid for my care. Thank you, thank you, thank you, my man Barack Obama.
The weeks went by. Faced with this difficult situation, I did what any normal person would do: I cleaned. Yes, I cleaned my house. I bought an extra long pole with a squeegee on the end so I could wash my windows on the outside without climbing a ladder. I pulled the rugs up and wiped the floors down. I scrubbed the refrigerator. I felt like I had to make a comfy nest for myself. I also felt like I needed to do something I could control.
And, I made a chart showing the progress I was making until chemotherapy was over. Each week I colored in a new square with a bright Crayola marker. See how something pretty can come out of something ugly! Of course, it was not going fast enough.
All the same, considering all that was going on, I was doing okay. I tried to prioritize sleep, because sleep helps you heal. The night of treatment day I got almost no sleep because of the dexamethasone. So I tried to sleep late when I could and take naps. Snoozing became my hobby. And I always felt a little queasy. When I caught a whiff of food I thought That smells disgusting! But when I sat down to eat I was able to chow it down, and everything stayed where it was supposed to. My brain got a little foggy, but I tried to pay more attention to what I was doing so that I wouldn’t make missteaks.
With my doctors’ approval I added in two supplements. I stumbled upon them during my searches on line for amyloidosis cures, you know, something that strangers on the internet might know that my expert doctors at an Amyloidosis Center of Excellence had somehow overlooked.
Epigallocatechin Gallate (EGCG), or green tea supplement, was one of them. I had read an article on EGCG that was published in 2007 by a medical doctor who had light chain amyloidosis and drank 1.5-2 liters of green tea a day. The symptoms of his amyloidosis improved dramatically. It appears that EGCG interferes with the forming of the fibrils that embed themselves into organ walls, also that it reduces the resulting damage. There are other studies such as this one and this one that seem to support this theory as well. In fact, green tea is good for your health in lots of ways, so drink up!
The other was coenzyme Q10. Your body actually produces this substance, but its levels drop as you age. There are quite a few articles detailing its positive effects on heart failure, like this one and this one, and others demonstrating positive effects on other conditions. Coenzyme Q10, where have you been all my life? And anyway, isn’t that a cute name?
There are other supplements for which there is evidence of benefit, like turmeric, but I felt like folding in two of these, along with chemotherapy and immunotherapy, was enough to take in at that point. Trying to decide which other ones to take became more than I wanted to deal with.
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