RunningBarb

For Mr. K, who never misses a beat.

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

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

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For Mr. K, who never misses a beat.

February 2024: More, and More

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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For Mr. K, who never misses a beat.

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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For Mr. K, who doesn’t miss a beat.

November 2023: Not so Fast

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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For Mr. K, who never misses a beat.

October 2023: The Path Forward

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. 

Tylenol – See Benadryl. 

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!

So that was a funny little start to our adventure. We had a great time in New York. We walked over the Hudson River, toured the home of Franklin and Eleanor Roosevelt and Eleanor Roosevelt’s home, both in Hyde Park, ate some great meals in some really cool diners, and of course, saw Patty Smith. It was a great trip!

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. 

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For Mr. K, who never misses a beat.

September 2023: But Wait, There’s More!

So now that I had an almost-diagnosis I wanted to learn more. Of course I started Googling. That’s when I read:

• Amyloidosis occurs in around 10 out of a million people.
• There is no cure.
• 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.

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For Mr. K, who never misses a beat.

September 2023: At the Big Boy Hospital

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.

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For Mr. K, who never misses a beat.

September 2023: I Can’t Breathe 

Despite my failure in the Adirondacks, there was still lots of fun stuff in store. We travelled to Rochester and took a nice pedal along the Erie Canal. We needed to be headed west for a multiday bike trip in a rural part of a mid-Western state. We camped at some beautiful parks, dropped in on Detroit and Milwaukee, and eventually arrived at the start of our jaunt. 

We got there in the afternoon of Day 1. It was cloudy and rainy, and we covered a distance of only around 20 miles. No problems there. On Day 2 Mr. K and I went out together for a 30 mile cycle. It was a short distance over a flat area, but it took everything I had to go at a decent clip. And I felt like someone was squeezing my heart the whole time. On Day 3 we were meeting up with friends to take a ferry to an island. While they biked the 15 miles from the hotel to the ferry, Mr. K and I drove to there. I did not think I had the stamina for a 25 mile ride on the island plus the extra 30 to get there and back.

It was a clear, sunny day, and we rode the boat over. The excursion on the island was wonderful. The area was peaceful and quiet, and we had water views everywhere we turned. After a pleasant day of cycling we took the ferry back. A little later we went to a fish boil, a whoopdewhoop involving a big fire and lots of people watching a guy cooking lake creatures in a big pot. We ate this unique dinner with our friends and went back to our hotel. I felt content.

Around 3:00 a.m. I woke up. I noticed something funny about my heart. Seemed like it was beating really fast. Did I just have a bad dream? I lie there for a while waiting for it to slow down. It didn’t. I checked my watch. My heart was beating at around 100 beats per minute. I was just lying in bed!

Then I noticed my breathing was a little off. I was taking short, shallow breaths. Why couldn’t I breathe properly? I got out of bed and sat on the sofa. Let me think about this for a bit. No need to start worrying.

Calm and meditation are often good remedies for this kind of thing. I put on some soothing music, plugged in my AirPods, and lie back down. That’s when I noticed that there was a funny crunching sound coming from inside my head with each inhale and exhale. Pretty sure you’re not supposed to hear crunching noises when you breathe.

By now Mr. K was awake and asking what I was doing. I told him I needed to go to the emergency room. But where? We were a thousand miles from home, out in the country. Mr. K went to the front desk of the hotel to find out the location of the closest hospital. No one was there. I got out my phone and started Googling. I found a medical center. I had never even been to an emergency room in my life. Seems like a silly question, but would it be open? I called to check. They told me they were open, but if I could wait until 7:00 the urgent care center would be available. Uh, no, this is not urgent, this is emergency.

We hopped in the van and drove the 45 minutes to the hospital. We walked in and went to the reception desk. There were a few medical people there. Ms. Intake asked me what the problem was. “I can’t breathe,” I answered, and started to cry. Everyone’s face changed from friendly and welcoming to concerned. They brought me over a wheelchair and an oxygen tank. Talk about the breath of life.

They wheeled me into an examination room where Dr. Emergency listened to my chest with a stethoscope and ordered some tests. They took samples of my blood and pee, and they did a chest x-ray. A few minutes later Dr. Emergency sat down across from me, looked me straight in the eye, and delivered the first of many Phrases You Never Want to Hear.

“You have fluid in your lungs.” 

I nearly fell off the exam table. What? Why do I have fluid in my lungs? How does something like that happen?

I told him about the symptoms I had been having over the past 18 months or so and showed him the EKG and echocardiogram from the Cardiology Office Where I Never Saw a Cardiologist. (RunningBarb doesn’t go anywhere without her medical records!) After one glance he informed me “These indicate heart failure.” Another one of those Phrases You Never Want to Hear.

Meaning that I had heart failure the very first time I went to the Cardiology Office Where I Never Saw a Cardiologist. No one, no one, no one ever uttered that phrase. I knew what heart failure was – the inability of your heart to pump sufficient blood through your body. Having an insufficient blood supply would make you feel like, I dunno, like you are pressing the gas pedal of a car and you don’t go? Why didn’t they listen to me? Why didn’t they pay attention to their own test results? If they had said “heart failure” I would have been shocked, but I would have felt they were on to something. It would have seemed like a plausible description of what was going on. Instead they stubbornly marched down the wrong path, never considering that there might be another.

“I don’t know what is causing it. We are going to treat you here with a diuretic to get the fluid out. But we are just a small hospital without the ability to do the testing that is needed. I am going to send you to the Big Boy Hospital* down the road where they can take a better look at you. Now, which hospital would you like to send me to send you to?”

I might have done a little research before this trip, but for sure I did not research the quality of hospitals in the vicinity. I had no idea where to go. I wanted to tell him that I would like a Jewish hospital. But the facility I was sitting in was full of crosses and pictures of Jesus. Dr. Emergency was a nice man, but I was afraid that if I said I wanted a Jewish hospital he would be offended and then send me to the worst one of all.

After some stumbling all I could tell him was to send me to the “best” one. 

“Okay, now I am going to send you in an ambulance. It’s the safest way, in case something happens.”

An ambulance? No way. I am not going to travel in one of those vehicles that all the drivers on the road look at and think “Oh, that poor guy, hope they’re gonna be okay.” Followed by a sigh of relief and “Glad it’s not me.”

We argued about this for a bit, with me saying Mr. K will do just fine, and Mr. K and Dr. Emergency trying to convince me to be carried in the big rig. Ultimately I won. 

Mr. K went back to the hotel to gather up all of our stuff and check out of the hotel.  A nice nurse gave me an IV of a diuretic, and I experienced several marathon peeing sessions. Mr. K returned around three hours later. We bundled into the van and headed to the Big Boy Hospital. 

*Not his exact words.

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For Mr. K, who never misses a beat.

August 2023: RunningBarb Can’t Run

We spent the next few months at home. During this time my fitness continued to decline, to the point where I could only bike short distances on flat terrain, and I was not able to run at all. My mind determined that I was going to jog, even slowly, but my body just wouldn’t do it. I affirmed my decision to try a new cardiologist when we got back from our next trip. Clearly I had to do something. 

We were planning for our upcoming adventure in August. It would involve hiking a few mountains in the Adirondacks, a bike trip in the Midwest, and lots of fun stuff in between. 

The Adirondack Park is home to 46 mountains over 4000 feet high. If you climb all of them you get to call yourself an “Adirondack 46-er.” If you don’t know, you don’t know, but if you do know it’s considered kind of cool. Mr. K was a 46-er, having climbed most of them as a child, then finishing them off with me. Many of the mountains do not have an established, marked trail, rather there is a “herd path,” cut by many feet travelling to the same place. At this point I was a 33-er, with 13 to go. I planned to knock out a few on this trip. If I was lucky we would nab around seven to nine. That would place me pretty close to the end.

The first group we set out to do was located in the northwest section of the park. There are four out here. Typically people summit Donaldson, Emmons, and Seward in one day, then do Seymour on a separate day. We headed out one August morning to finish the first three. We drove out to the trailhead, several miles down a rough gravel road. We started at 7:30. It felt like a good beginning. The first segment was blazed and easy to follow, and not particularly steep. The climbing would come later. 

After hiking in around five miles, we began the gentle climb to the base of Donaldson. There were no longer any blazes, but it was not difficult to follow the herd path, and we could always check with the GPS. At one point we needed to cross Caulkins Creek, and we got a little turned around, but eventually picked up the herd path again. We slowly made our way up and eventually found the cairn that marked the turnoff for the peak. We headed up that way and eventually spied the marker telling us that we had summited. High five! One down, two to go! I looked at my watch. It was 1:30. It had taken us five hours to go around a little more than six miles. Maybe not such a good start after all. I felt a little concerned. But we still had a lot of work to do. We passed over Donaldson and slogged over to Emmons. And a slog it was, with knee-deep mud. Slow going for sure. But we got to the top of Emmons. Next we had to go back to Donaldson, go back down to the cairn for the turnoff, and go the other way for Seward.

When we got back to Donaldson I looked at my watch again. It was 4:30. It had taken us three hours to get to Emmons and back to Donaldson, a distance of around two miles. Yikes.

Normally when we are in the Adirondacks and it is that late we are pretty near to getting out of the woods. We always leave lots of time to be out before the sun sets. We don’t want to be caught on a trail-less mountain in the dark. 

For sure, the last of the three, Seward, was out. We would be lucky to make it off the herd path and back on the main trail before night fell. We high-tailed it out of there as quickly as possible. Which – was not very quick. My legs, once again, had no energy. I tried to step carefully over the slippery rocks and concentrate on where to place my feet. I did not feel good about this. One wrong step and I could twist my ankle. We were in the backcountry, far from the road, without any cell signal. And it was my fault for being so slow.

When we reached the creek we again fumbled with the crossing, but eventually found the trail. I was determined to be off the herd path before dark. Although determination and ability do not necessarily correlate.

Finally we were back at the cairn at the edge of the marked trail. I knew that this path would be easier to follow since it was wider and its signposts were visible. I was no longer afraid of being lost in the woods. We were prepared for “what-ifs,” with headlamps and flashlights. After a few more hours more of slow trudging, we were back at our vehicle. It was just past 8:30. The 13 mile hike had taken 13 hours. This was an average pace of an hour per mile. 

There are spots in the Adirondacks where taking one hour to go one mile is not crazy. Parts are killer steep, there is serious mud, you have to climb up wet slabs of rock with almost nothing to grab on to, and often you are actually climbing up streams that include all of the above. But to average a mile an hour over the entire hike? That’s unheard of. We threw everything into the van and made our way out of the woods. I was pretty relieved when the pitted stone road changed to asphalt, then later when we turned in the direction of the guest house where we were staying. 

Okay, so we gave up on Seward, but RunningBarb didn’t end there! We also had plans to climb Haystack, Saddleback, and Basin, three mountains accessible from Johns Brook Lodge (JBL), a beautiful old bunk house tucked away in the park. Maybe I just had a bad day with Donaldson and Emmons. And RunningBarb never gives up! To get to JBL you need to hike in three miles. This means you are closer to the three mountains, so your hikes are shorter. I had made reservations for us to stay there a couple of months earlier.

Hiking to the lodge was relaxed and comfortable. I didn’t have any discomfort and did not have to stop. My legs were working fine. I thought this was a good sign for the next day’s hike. We arrived in the afternoon, and I took a dip in the freezing cold Johns Brook. Later we ate dinner, which was served by the lodge staff a’ la Phantom Ranch. It was fun to be around the other hikers and hear their stories. Lots of folks had bigger plans than we did, but I felt energized for the next adventure.

In the morning we ate a good breakfast and were on our way. As is the case with a lot of this mountain climbing business, the early parts were relatively flat and easy. Soon we arrived at Slant Rock, where the real ascent began. I took my time. We were only climbing one mountain today, and it was only a total of around 9.5 miles from the lodge to the summit and back. Much shorter than the 13 of the previous hike. But as I kept moving it was becoming harder and harder. Soon I found myself climbing up one of those rocky creeks where you could barely find a place to put your foot. People wearing heavy packs were passing me as though I was standing still. How can they move so fast? I was getting nervous, because I did not have good control of where I was putting my feet. Again, it was like my legs had no power.

With one mile to go to the summit, I gave up. I could barely put one foot in front of the other. I was slipping. I was losing confidence. It was not a good situation. With a ton of disappointment Mr. K and I turned around and went down.

With my failure at Haystack, there was no reason to try Saddleback and Basin. There was no way those were happening. Looked like my 46-er days were over. Okay, I just have to accept this. I mean, not everyone becomes a 46-er. Most people don’t. That’s it. 

The next day I hung out at the lodge while Mr. K climbed a different mountain. I made the best of it: I was in a beautiful place, surrounded by friendly people, and was safe and sound. Maybe RunningBarb was just getting RunningOld. 

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For Mr. K, who never misses a beat.

June 2023: Primary Shmi-mary

I visited my primary care doctor for my annual checkup. I had to push myself to do it, as I thought she was pretty useless. Several years earlier I had a doctor and a practice that I highly respected, and I received excellent care. The waiting room had a big window, and there was a stone waterfall mounted on the wall. The room was filled with books on health and nutrition, and everyone who worked there was friendly and helpful. The doctors listened well.

Unfortunately, they closed their doors and moved on, so I needed to find another primary care doctor. I think there should be something like speed dating if you want to find a new doctor. I mean, you can read their bio and search their reviews all you want, but there is nothing like having a face to face conversation to see if you are compatible. And, as I learned, I was not suited to this practice.

In the cramped waiting room they played a loop of drug ads. The desk staff seemed bored. I liked the guy who drew my blood, but he played a fairly minor role. I saw a couple of nurse practitioners and one doctor over the three years I was there. They did not leave much of an impression. I put up with this because during each of my check ups everything was fine. I really didn’t need much from them.

But now I have something going on. This time, when I first came into the exam room I was introduced to a new technician who was supposed to take my blood pressure. He looked like he had just graduated from high school. He fumbled with the blood pressure cuff for a minute. I wasn’t having it. I asked the Regular Technician to take over. My blood pressure came out high. Newby Know Nothing advised me “Don’t worry, we have lots of medications for that.” Why are you talking, I wondered. 

When Dr. Primary Care came in I explained what I had been dealing with. She didn’t know anything about my little foray into the hospital with a supposed deathly heart attack, even though the hospital had sent all the records over. I guess she didn’t think it was important to look at my file before coming in to talk to me. I stressed as strongly as I could that I really wanted her to do some testing to see why I was losing my fitness. I told her I used to be a strong runner but was losing the ability to run at all. I used to be one of the faster riders in my biking group, but now I can barely keep up. I was having trouble on long hikes.

I could see from the expression on her face that all of it was going past her. I can’t swear that she actually rolled her eyes, but I could see that she wanted to. I just was not getting through. She insisted that she would do all the necessary tests. But it didn’t seem like she was going to go beyond the basics. 

I also asked for a recommendation for a cardiologist, which she gave me. I asked her if she knew this doctor. “He’s been in practice for 15 years,” she replied. “But do you know him personally? Do you know what he is like with people, if he listens?” She wouldn’t say. Which made me think she didn’t know him at all. After my first experience I was reluctant to go to someone whom no one knew. Fifteen years doesn’t mean anything if you don’t pay attention to the person sitting in front of you.

The Regular Technician took my blood pressure again, and despite my frustrated state, it came back normal. 

A few days later Dr. Primary Care called to say my kidney numbers were high, and she wanted to refer me to a nephrologist. “On the basis of one test?” I asked. “But I don’t have any baseline data for you,” she replied. “Sure you do, I’ve been coming to your office for three years.” Of course I did not expect her to hold in her head all the unique details of my health, but I kinda expected she might take a teeny peek at my file before talking to me. How else could she piece together what was going on? She then suggested to start with a urine sample, which I agreed to. Now, in this office getting a lab referral was a multistep process. The doctor says she will write it. Then you have to wait a few days until it is actually written and available. Then you have to contact the office to confirm it is available, because you physically have to go to there to pick it up. They wouldn’t email it to you or even send it in the postal mail.

I contacted them a few days later to see if the referral was ready. The assistant sent me a message that they “didn’t need to do anything about [my] A1c at that time.” A1c? Was this a message meant for someone else? Did anyone there know anything about me?

I went back and forth about seeing the cardiologist she told me about. Was it going to be just another wild goose chase? I had no confidence in Dr. Primary Care, but that didn’t necessarily mean that Dr. Recommended Cardiologist wasn’t any good. I wrestled with this for a couple months, but then put it off, as we were preparing our next travel adventure. 

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