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.
Thanks for reading! If you would like to subscribe:
Also, feel free to comment! Your message will not appear right away, because WordPress requires me to approve it before posting. But it will show up, and thanks!
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.
Thanks for reading! If you would like to subscribe:
Also, feel free to comment! Your message will not appear right away, because WordPress requires me to approve it before posting. But it will show up, and thanks!
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.
Thanks for reading! If you would like to subscribe:
Also, feel free to comment! Your message will not appear right away, because WordPress requires me to approve it before posting. But it will show up, and thanks!
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.
Thanks for reading! If you would like to subscribe:
Also, feel free to comment! Your message will not appear right away, because WordPress requires me to approve it before posting. But it will show up, and thanks!
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.
Thanks for reading! If you would like to subscribe:
Also, feel free to comment! Your message will not appear right away, because WordPress requires me to approve it before posting. But it will show up, and thanks
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.
Thanks for reading! If you would like to subscribe:
Also, feel free to comment! Your message will not appear right away, because WordPress requires me to approve it before posting. But it will show up, and thanks!
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.
Thanks for reading! If you would like to subscribe:
Also, feel free to comment! Your message will not appear right away, because WordPress requires me to approve it before posting. But it will show up, and thanks!
When the results from the heart and bone marrow biopsy came back I received a call setting me up for an appointment with an oncologist the very next Monday at 7:00 a.m. Yes, a cancer doctor. The treatment for amyloidosis is very similar to the treatment for multiple myeloma. I would be treated in the multiple myeloma clinic. That made me a little nervous. It was getting harder and harder to deny what was happening in my body. Now I would be one of those people referring to “my oncologist.” I didn’t like it.
However, I did like Dr. Oncologist. All the doctors and other medical personnel made this disease so much easier to take. They were so nice! And kind. And respectful.
Dr. Oncologist explained to me that there are different types of amyloidosis, and the one I have is “AL amyloidosis,” or “amyloid light chain amyloidosis.” It is a misfolding of certain proteins. In your body you have lambda proteins, kappa proteins, gamma proteins, and other types. Sounds like a frat house in there! And, as in a frat house, mischief may occur. In my case there were too many misfolding lambda proteins. They were swimming all around my body looking for a place to land. They decided my heart and kidneys looked like promising territory. So they moved in.* Unfortunately, that was bad news for my heart and kidneys, whose function declined.
Dr. Oncology explained the treatment. It was only in 2021 that this treatment was approved, and here we were in 2023. In medical research terms it was like the day after. The therapy consisted of chemotherapy once a week for six months to get my body to stop overproducing the protein, plus a shot of something called Daratumumab during that time, plus 18 more months of Daratumumab to make sure the overproduction didn’t start up again. Yes, treatment would last two years. I nearly fell out of my chair. This would be a long haul.
This is what the weekly treatment** included:
Daratumumab – This gloms on to the cells causing the problem and tells them to knock it off. This was administered as a shot in my stomach. The syringe was about 150 feet long.
Bortezomib – This kills abnormal plasma cells, by blocking the actions of big guys called proteasomes. I don’t know what those are, either. This also was administered as a shot in my stomach. On the other side. This syringe was slightly shorter.
Dexamethasone – This is a steroid that helps the other drugs work better. It also keeps you up all night and messes with your mood. This came in pill form.
Cyclophosphamide – This interferes with the growth of cancer cells. And other bad boys, I guess. Another name for this is Cytoxan. As the name implies, it is toxic. It came in a bottle, inside a thick plastic bag, inside another thick plastic bag. Skull and Crossbones City. Nurse Oncology told me that if I sweated and wiped the sweat off with a towel, I should throw the towel in the laundry immediately and not let anyone else near it, that’s how bad this stuff was. I sucked down nine pills of this each week.
This combination of drugs is called Dara-CyBorD. Sounds like a techno-funk band, don’t you think?
Furosemide – This is a diuretic, necessary because of my heart failure and possible retention of fluid from the dexamethasone.
Acyclovir – Because some of the chemotherapy drugs cause suppression of my immune system, I might get shingles, even though I have been vaccinated. Acyclovir prevents me from getting shingles (and other viruses, I presume).
Ondansetron – This prevents nausea and vomiting from all the rather unpleasant stuff being injected and swallowed and otherwise consumed.
Benadryl – This was just in the beginning, to help my body stand up to said disagreeable matter.
I started reading about all the side effects of these drugs, but it brought me down. What was I gonna do, tell Dr. Oncology I don’t want them? I would just have to suck it up.
But there’s one more thing – when I told my dentist I was undergoing chemotherapy he told me that that could be hard on my teeth, so he prescribed a high fluoride toothpaste for me. Wow, my teeth were the last things I was thinking about. I was touched.
They also gave me a notebook with fun facts about cancer and therapy and a refrigerator magnet with contact information for the oncology department. No t-shirt, though.
Okay, now I was on the path to treatment. I wanted to begin as soon as possible. One thing, though, Mr. K and I had tickets to see Patty Smith in Kingston, New York. I figured I could start my treatment and go up the next day. Dr. Oncology talked me out of it. “Starting one week later won’t hurt anything. You go to New York and have a good time.” Smart doctor.
We had missed Patty Smith when she came to our area a few months earlier because we were travelling. She was getting older, and now here I was with this bad medical condition, so we figured we’d better catch her while we can. We booked a small house near the theater, planning to walk over before the show.
A day before we were about to leave I received a message from Ms. Host. Ms. Host told me that her dog walker had been out with her dog, and they were sprayed by a skunk. They went into the rental house, and now the whole house smelled like skunk, and she was sure I would want to cancel. Crazy, right? So I cancelled and asked for my money back. She told me I had to contact Booking.com to get it back. So I reserved a hotel room and contacted Booking.com. And guess what, they told me they couldn’t give my money back because I was the one who cancelled. What? Ms. Host was so clever! I sent them the email from Ms. Host. They gave me the money back from the house – plus the additional bucks it cost for the hotel. Go Booking.com!
Now the moment of truth was upon me. I had all the prescriptions filled, read all my instructions, plus Dr. Oncology and Nurse Oncology also explained everything to me. I was as ready as I would ever be.
On the morning of The Big Day I spread out the pile of drugs that I needed to take before I got to the hospital. Geez, for someone who never even used to take an aspirin for a headache this sure was a big change. I gulped everything down and we were on our way.
At the hospital they gave me the two shots, then had me wait around a while to see if I had any bad side effects. Surprisingly I felt fine. If this is chemotherapy, bring all of it on so I can get it over with!
* Not her exact words.
**This does not constitute a list of exact medical definitions.
Thanks for reading! If you would like to subscribe:
Also, feel free to comment! Your message will not appear right away, because WordPress requires me to approve it before posting. But it will show up, and thanks!
The median survival time from diagnosis for people whose hearts are affected is 4 months to 2 years.
You know how you know that you are going to die someday, but you just don’t know how? You always hope it will be after a long, healthy life, after you have accomplished everything you have ever wanted to do, on an evening you have spent with your family and all other loved ones, and you will go to sleep and dream and wake up – well – wherever it is you wake up after you die. Looks like maybe that wasn’t in the cards for me. I might die in the next couple of years. But wait, two years was the median. I could live longer than that. Three, four? Would four years be enough time for me? At the end of four years could I say “Okay, I’m finished now.”? I was 63. My grandmother lived to 90, my parents well into their 80s. I felt like I had just had 20 years slashed off of my life.
And it wasn’t just that my life would be shortened, it was also what it would be like while it was being shortened. From what I read, my heart would continue to fail. I would retain fluid. It would be harder to walk and to move around. I pictured myself as one of those nice ladies you see in Target on an electric scooter connected to a portable oxygen tank. Well, those gals were probably healthy one day, and then their health went kaput. Still, they were smiling and friendly and seemed to be living a good life. I think.
I would say it didn’t seem fair, but when is life ever fair? I had had 756 months of great times with lots of interesting adventures, a fantastic job in deaf education advocacy, travel all over the world, a caring and loving Mr. K, two wonderful Darlings, a great place to live, financial stability, and a lot more. Not everybody gets that. What did I do to deserve it? Was that fair? No, this was just something that happened. Why me? Why anybody? There was no use in trying to figure out some kind of reason. It just was the way it was.
Still, I tried to wrap my head around my short life expectancy. What did it feel like to have only a few years to live? You know how you hear about people with a bad disease who talk about how much they love life and appreciate everything around them, and every day is a blessing, even their illness? I always wanted to be one of those people, without the being sick part. Now that I knew I might have amyloidosis my view on the world hadn’t yet changed. Would it?
But first things first,it was time to head home to get RunningBarb to an Amyloidosis Center of Excellence. I learned that there was one on the East Coast, not too far from where I lived. I called to make an appointment. The receptionist was very nice and helpful. She told me they needed all of my medical records. No problem, I was able to collect most of them pretty easily. But there was a hitch. The Big Boy Hospital had had a computer attack and my records were unavailable for days. I pestered them constantly, explaining that I had to have the records asap. I felt a little bad, because in prioritizing my request that meant they were de-prioritizing someone else’s. In health care (as in much of life, I guess), you need smooth and efficient administration so that all the right information can flow.
Eventually I had the records in my hot little hands, and I had an appointment with Dr. Advanced Heart Failure Cardiologist. It was a little jarring to walk into an office with that name on the door. Ironman RunningBarb, now with advanced heart failure. Or – Ironman RunningBarb! Now with Advanced Heart Failure!
Dr. Advanced Heart Failure Cardiologist was about the nicest person I have ever met. I sat there pouring out my story. His eyes were on me the whole time, and his body language said he was paying attention. No phone checking. No looking at the clock. No one knocked on the door to ask him a question. No interruption at all.
He just listened.
Then he asked me a few questions.
Then he told me what he knew. He said:
I shouldn’t pay attention to what I read on the Internet, because it is mostly outdated
There was no medically known way to undo the damage that amyloidosis had done
There is no cure for the disease, but with treatment, he believes they can stop its progression “in its tracks.”
My mind started whirring. Okay, looks like running is finished. But I can still walk, right? Biking? I can get an e-bike. They’re very popular now. And if my hiking is limited to a few flat miles, well that is not the end of the world. I still will be able to get out into the woods. At any rate, it did not sound like my death was imminent.
But first there were a few procedures that needed to be performed. The first was a right heart catheterization. Now you may be familiar with my left heart catheterization that occurred near the beginning of all this mess. Well, time to show the right side some love! In this procedure Dr. Catheter Cardio slices open your jugular vein – yes, the one in your neck! – and runs a tube through the opening down into your heart. At the end of the tube is a pair of forceps. He snips off pieces of your heart. Then he pulls those pieces out through the tube. He takes those bits, tosses them into a box, and sends them off to the Mayo Clinic in Rochester, Minnesota. There, smart people analyze them using something called a “Congo red stain,” which sounds like something you might find on your couch after a big party, but it’s not. From their analysis they determine whether or not you have amyloidosis.
Another part of this procedure is an echo echocardiogram, where they are actually taking measurements inside your heart. You’ve heard the song that starts “I’ve got you under my skin,” right? Well, the next line is “I’ve got you deep in the heart of me.” RunningBarb can relate!
But that’s not all. There is also a bone marrow biopsy, where a nurse practitioner takes a long needle and sticks it into your hip bone. From there the needle slurps out your marrow. I’ll never feel the same way about beef broth again.
Thanks for reading! If you would like to subscribe:
Also, feel free to comment! Your message will not appear right away, because WordPress requires me to approve it before posting. But it will show up, and thanks!
Despite hearing two Phrases You Never Want to Hear in the space of a few minutes I felt a mild sense of relief. Maybe I was finally on the road to a diagnosis, and a cure. Dr. Emergency listened to me and took me seriously. Maybe the doctors at the Big Boy Hospital will also. Maybe it’s the culture out here!
When I arrived at the front desk I saw that Dr. Emergency had kept his word and had arranged a transfer of me to the Big Boy Hospital. The folks at the desk were expecting me and had a room ready. I was impressed. No bureaucratic mess here! We took the elevator up to the room. Soon after we entered a nurse came in. “Wow, we don’t see many people walking in here!” I took that as a sign that maybe I was not as bad off as I could have been. She gave me a modern, fitted gown to wear, and it was quite flattering. No, just kidding, she gave me something that looked like an old sheet with a couple of holes for my arms.
Soon, Dr. Hospitalist came in and introduced himself. He asked me a few questions, and I explained my situation. I showed him my test results from the Cardiology Office Where I Never Saw a Cardiologist. “This shows you have heart failure,” he informed me. Does it count as a Phrase You Never Want to Hear if you have already heard it?
Dr. Hospitalist ordered a bunch of tests. He was in and out of my room, asking more questions and providing me more information. I had a private room, meaning my discussions with him stayed there, and I wasn’t privy to the confidential conversations of others. Not as much fun, for sure, but probably better for everyone overall. I was so well cared for. It made me see what attentive medical care looks like.
They took my pee and my blood, performed an echo echocardiogram of my kidneys, a left heart catheterization (to confirm that, yes, RunningBarb’s arteries were still clear!) and did all kinds of probing and poking. There was a little bit of excitement when the technician did an echo echocardiogram of my heart. She was parked next to my bed with her computer, running the probe all over the place, when suddenly she took a break from the action and started typing furiously. After a minute or two she turned to me and said “I think you might have an aortic tear.” Bingo! Another one of those Phrases You Never Want to Hear!
Now, once you are admitted to a hospital they never let you walk anywhere. If you need to go to another room for a test they wheel you there in your bed. She pushed my giant piece of furniture with me sitting in it as fast as she could, trying to run to the room with the CT scanner. It was quite the athletic event. When she got into a tight corner near where Dr. Hospitalist was sitting she started to ask whether she could let me walk the rest of the way into the room. Dr. Hosptalist didn’t say a word, but his eyes widened into an expression of “Don’t even ask.” Everyone looked pretty terrified.
I guess I should have been terrified myself, but honestly, the whole thing was out of my hands, plus I just felt bewildered. All I could do was trust them to take care of me. Is my life full of surprises, or what? Let’s see what comes next.
We made it into the room with the big machine and they took a bunch of scans, then moved me to another room. After a few minutes they came out, and there was a huge whoosh! as they breathed a sigh of relief. No aortic tear after all! That crazy echo echo cardiogram machine!
The nurse rolled me back to my room, and they brought me a nice dinner. And wouldn’t you know it, it was a holiday – Rosh Hashana! The beginning of a new year. Now, to be honest, when you celebrate Rosh Hashana year after year the days tend to run together. Is that the year we had Julie and Frank over? Wait, no, that was the time we went to Rachel and Bob’s. Hard to keep track. But Mr. K and I will remember Rosh Hashana 5784 as the year we munched apples and honey from a hospital room. Ah, nostalgia!
The next day Dr. Cardiologist came in to share some news with me. They had reviewed all my tests and files and came up with a tentative diagnosis. “Based on what we have seen we believe you have a condition called amyloidosis,”* she reported.
“Ama – what?”
“Amyloidosis. It is a bone marrow disorder that causes proteins to build up on the organs and impair their function. We think that amyloidosis is affecting your heart. That would be why you have been having trouble.”
“Ama – what?” She had to say it, like, 50 times plus write it down for me just so I could remember the name.
And then, “Whatisthecure?Howdoyougetit?WhyhaveIneverheardofit?How . . .”
She raised her hand to quiet me. “I can’t answer any of your questions. The first thing to do is to get an accurate diagnosis. We don’t have the ability to do that here. When you get home you need to go to a center of excellence, a place that specializes in this. Don’t just go to any Joe Blow cardiologist.** You need to see a cardiologist who knows this disease.”
Before I was discharged Nurse Heart Failure came into see me. She explained that from now on I had to limit my sodium intake to 2000 milligrams a day (not much) and my fluid to two liters a day. That is, fluid from all sources: water, soup, wine (okay, she didn’t say wine), any and all types of liquid. Should be fun!
Okay, then, I have an almost-diagnosis, and a path forward. I have made more progress in two days in learning what was wrong with me that I have in the past year. This small community hospital in a little city in the Midwest did it. I am forever grateful.
*Obviously, this disease has a branding problem. A name that’s too long and too hard to pronounce? I say we sic a good marketing team on it.
**Not her exact words.
Thanks for reading! If you would like to subscribe:
Also, feel free to comment! Your message will not appear right away, because WordPress requires me to approve it before posting. But it will show up, and thanks!
