Paul's Heart

Life As A Dad, And A Survivor

Music And My Survivorship


I am driving to the grocery store with my then two year old, and as always, I am listening to my CD player in the car. ACDC’s “Back In Black” comes on. I just happen to look into my review mirror just to check on my daughter as I frequently did, and I notice her rocking her head forward, back and forth, and coincidentally, to the beat of the song. Holy crap! My daughter is “head banging”, a term for bouncing the head to the beat of a head throbbing song. A lover of music, this was a proud moment for me, because I truly believe in the importance of the arts and the development of childrens’ minds.

As time went on, my daughter would move on to a new artist and song, Kelly Clarkson and “Since You Been Gone.” Now of course, barely speaking any words, she gave it her all when it came to the chorus, screaming something, on beat and on note. And then there was this classic about a year later. I got a phone call from daycare. “Mr. Edelman, we have a problem. Do you know what your daughter is singing?” Of course I had no idea what was happening prior to the phone call, but my daughter had already learned so many different songs, and to be clear, childrens songs as well. I replied, “um, not really. Why?” Wait for it, “she was singing ‘Girlfriend’ by Avril Lavigne.” Hmmm… okay, this could be problematic, but I was a quick thinker.

“Was she singing the edited or unedited version,” making reference to Lavigne dropping a “mother f-er” bomb in the song, which got edited out on the radio. They asked, “what difference does that make? It’s Avril Lavigne and it’s inappropriate!” I told her, “it matters because she knows not to sing the naughty words that are in there. And if she isn’t singing them, this call can end now.”

I was just over a year old when my grandfather passed away. Back in 1967, there were no cell phones, so not a lot of photos were taken then, including at least one of a memory that I cannot look back on, the love for my grandfather. I heard countless stories on how I was so excited everytime I was taken to see him. Even as an infant, he meant the world to me.

As I got older, just before the age of starting school, I learned something special about my grandfather, he could sing. He had what is called a “baritone” voice. And even though he had passed, I was able to hear his voice, as he had made a recording. He had recorded “Battle Hymn Of The Republic.” I remember two things, he had a powerful voice, and I wanted to sing just like him.

My grandmother gave me my beginning, by taking me to church, and having me sing on the children’s choir. This would open the door to other organizations that I would join for the opportunity to sing and perform.

(image courtesy of Times News)

I was five years old when I would experience something that I had never felt before, a roller coaster, this roller coaster, currently called the Thunderhawk. It is world reknowned as one of the top ten wooden roller coasters. I remember that ride very well. But that is not what stuck with me most. Over a loud speaker atop a telephone pole, music was playing. Chicago, “Wishing You Were Here.” That memory sticks in my head to this day. I soon learned about the car radio, and AM radio stations. And then thank goodness, FM radio came along. And something new happened, I heard people talking about the music from the radio, DJ’s. I wanted to be one. I was still singing and performing, but I wanted to expand my experiences.

Throughout Junior and Senior high school, my musical involvement continued either through choral or stage, with training and competition. After high school, I would audition and join a local symphony chorus. I would also give several attempts at joining local bands in need of a vocalist.

In 1984, my music interest and range would jettison, as I finally took my shot behind DJ tables at my college’s radio station, where I would get to play all kinds of genres of music. I would take a couple shots at commercial radio, but it would be from doing live locations, such as weddings, reunions, and other parties that I would truly find musical happiness for the next forty years.

(image courtesy of Ebay)

In 1988, music would take on a whole new role for me, and literally get me through the most difficult time of my life. It was in November of that year that I was diagnosed with Hodgkin’s Lymphoma. During diagnostic surgeries and chemotherapy treatments, my CD Walkman was filled with what I considered motivational tunes never left my side during those appointments. It seemed like every morning I drove to my radiation appointments, I would hear Madonna’s “Like A Prayer.”

After I completed my treatments, I continued with DJ-ing. And then my daughters came along, and one thing I wanted both to love and enjoy, was music. My other daugther developed her own path in music, that she still follows to this day, finding the right instrument.

It was only a week before something happened I will never forget. She was learning guitar, and learned a song that she had heard me sing, “Chasing Cars” by Snow Patrol. One night, we both sat down and recorded a video of that song, with me singing vocals. A moment I will always cherish.

As I chugged through my survivorship, I would face many health challenges, which would mean bringing new technology, my phone loaded with my entire music catalogue. During appointments of rehab and physical therapy, I would once again play motivational music for me to exercise.

Approximately five years ago, something happened. After listening to their father’s music their whole lives, it was their turn to make their musical influences on me. It is an easy task with me being open to nearly all genres.

(photo from The New York Times)

Eurovision. I had never even heard of it before, even though the international competition gave the world one of the most popular bands of all time, ABBA. My oldest daughter started showing me old video clips, and soon, we were watching each year’s competitions.

(image courtesy of Variety)

(image via IMDB)

And then two blockbuster “rockumentaries” came out, Bohemian Rhapsody about Queen, and Rocket Man about Elton John. And the connection was made about music they listened to in my car when they were younger. But now, older, once in my car, the blue tooth gets hijacked from my older daughter’s Spotify and I am introduced to new music, not mainstream, but indie music. And not just indie music, it turns out that she is often going to see them live when they are local. The full circle moment comes when some of the venues she goes to these concerts, are some of the very same venues I saw concerts at decades ago. And since punk and alternative genres are some of her favorite, some of the bands I listened to have popped up in her collection. This was cool to hear. But my musical tastes are now expanding, including the Marias, Bikini Kill, and Amyl and the Sniffers.

(image courtesy of Wikipedia)

My younger daughter, not be outdone, needs electives for her college education, and on a whim, thought a course on the Beatles would be interesting. It may have originally seemed like just an easy padding for her GPA, but she really has enjoyed the course so far, learning all of the history of the Beatles together, and having me fill her in on the post-Beatles years. We have Beatles chats at least twice a week.

But then her discussion takes an unexpected turn. She really is confused as to how the Beatles, so good, so popular, could just break up, and never take an opportunity to get back together, until it became impossible. She admits that seeing Ringo and Paul appear on the same stage in recent years show that it could have happened. And then she turns to me.

“Do you think you will ever want to perform again?” That came out of nowhere. She had heard me sing many times, and knows how important music has been to me. About the time that Covid hit, is when I stopped performing, well, because of the obvious. But over my survivorship, singing for me has not only been about the music, but therapy for my lungs and my heart, keeping both in optimum shape best I could. As long as I could expand my lungs enough, my technique and my sound was good. But without singing regularly, I stopped.

Getting back to her question, I thought about an opportunity that had come up almost a year ago. Some local musicians had gotten together, just to jam, and needed a vocalist, and asked if I wanted to sit in. It had been a while, but I really wanted to give it a go, no pressure, just to see what I could still do. Some of the players were new to me, which enabled a wider catalogue of music, songs that I had never tried before. By the end, I lost track of how many songs we had done, but they definitely enjoyed the jam session. But just as importantly, even though I was exhausted, I felt really good with how I did, my lungs supporting my voice.

And then came the idea, how about throwing a party, and we could play for everyone. To be clear, I still follow Covid precautions (for every virus now, not just Covid), but I thought I could be safe with just the spouses, and all the while, putting on a great gig. But soon I would hear that the number attending would be four times that of the band and their spouses. Initially, my thoughts were like “cool, haven’t performed in front of a large crowd like that in forever,” but then reality, and panic hit me, too many people, in too tight of an area, too much exposure. I had never felt like that before, and really felt embarassed by it, but my concerns about exposure were legit. And with this panic in my head, I bailed.

So, getting back to my daughter’s question, I can honestly say that I would love to give it one more go. I know my lung capacity has gotten worse over the past year, and my fatigue has become an issue. I would have to practice and train to build up my stamina, I honestly don’t know if I can. Would I take the opportunity if everything could be worked out? I know my daughter hopes, “yes.” She knows what music means to me. And that is purposely in present tense, it still matters to me.

“Yep, That’s Me. You’re Probably Wondering…”


The videos all start the same way. Something bad has happened or is about to happen, whether it be a human mishap or an animal. Something is in the process of happening, bad, and then comes the sound of a record (for you kids, that is a vynil disc that us older people used to listen to music on), being scratched to a halt, as the event is suddenly frozen in time just before the actual mishap. Then music begins to play, normally the introduction from the Who’s “Baba O’Reilly,” a narration begins, “yep, that’s me. You’re probably wondering how I got here.” And the video continues with a different song, chaotic through the end of the incident. Normally, this can be found humorous as its purpose is to laugh at a bad choice that got the person into that predicament. These videos consist of people falling from ladders, kids heads stuck in stair rails, dogs caught with their heads stuck in buckets. You know, funny stuff.

Then there is me. “Yep, that’s me. You’re probably wondering how I got here.” I am not sure what music would be playing at this point, though I would much rather have preferred something comical as a result of ending up in the emergency room.

But yes, that is me. Upon arrival, I was placed in a hallway, not an open room or bay as pictured in front of me. By the way, that room remained empty the entire time that I was in the ER. In fact, I remained in the hallway, for more than four hours. Anything that was done to me, such as bloodwork (you can see the bandage on my hand), an EKG, and a chest x-ray, were all done in a public hallway. To be clear, that room across from me which could have given me privacy, was not the only empty room, there were seven others. But I sat in a hallway having all these things done out in the open in public.

I have been to the ER more times than I want to admit during my cancer survivorship, enough that I would have to take off both of my shoes to count, especially in the last fifteen years, all attributed to my late side effects from my cancer treatments.

As the picture shows, my right arm is swollen compared to my left arm. As someone with congestive heart failure, swelling is not uncommon. It is also not good. I take medicine for it as it is. But this was a new swelling, accompanied with some pain, dizziness, and an increase in fatigue. I needed to be in the ER in the event I was dealing with any kind of circulation issue or even a potential blood clot, which would be fatal. So, that’s how I ended up there.

Anyone who has ever been to an ER, knows you can be sitting there a long time. As I said, I was there over four hours. I did not object to anything they were doing, even though I was sitting in a hallway, with everyone walking past me as it was being done. I even commented to the nurse, was there something directed by my insurance not to put me in a room. The nurse seemed to be insulted and explained to me, he had no idea what insurance I had. But here’s the thing, the person in triage did. So, what other explanation could there have been for keeping me in the hallway with seven open rooms in the hallway? That was the least of my concerns.

If you follow “Paul’s Heart”, you know I have a lot of medical knowledge, though clearly not enough to earn me an honorary degree. No matter who I am seeing, a doctor, nurse, the ER, even my dentist, I begin with, not “yep, that’s me…”, but “I am a 37 year Hodgkin’s Lymphoma survivor, with a multitude of late side effects from the treatments that saved my life, 4000 rads of ionized radiation and toxic MOPP-ABV chemotherapy. The damage involves cardiac, pulmonary, gastroenterology, endocrine, skeletal, muscular, ocular, and so on.” You would think this was not just a good thing to do, but important to let them know I was not a “normal” patient they were dealing with.

Have you ever heard of the phrase, “a bricklayer telling the engineer what to do?” Engineers don’t like that. Because while bricklayers understand the physical routine of construction, it is the engineers that deal with soil mechanics, stress distribution, and safety concerns. Can you see the comparison? Me explaining to the doctor my body?

But here is the thing, if I don’t, mistakes can be made, judgements creating dangerous outcomes. My health records are all at their fingertips literally because of the paper reduction act. All they need to do is look, but I know they won’t. I have been there time and time again. But clearly, when I met the doctor, the engineer, she was put off by me, the bricklayer, explaining my history. I would not see her for the next four hours, just sitting in the hallway, staring off, watching others be placed into a room in the ER, eventually the one in front of me. But I remained in the hallway.

There had been no updates on the bloodwork, EKG, or chest x-ray. I had been told nothing. I saw the doctor walk through the hallway, but she said nothing as she passed. No one had payed any attention to me, in spite of not being able to miss me sitting there in their way. I had had enough. Clearly there was nothing imminent or urgent otherwise I would not still be sitting there, ignored. I wanted to be discharged.

I had visits with my own doctors already scheduled previously, in two weeks. As what was happening, did not seem a priority or urgent, I felt I had time to wait until my appointments when my doctors who know me, could do their evaluations. Simple enough. Just as I was getting off my chair to request the discharge, here came an orderly, “I’m here to take you for a CT scan.” I looked at my caregiver and then back at the orderly,”CT scan? I know nothing about a CT scan.” He reported his instructions to transport me. Just then the nurse came by and I proceeded to tell him I was already scheduled to have a CT scan as my regularly scheduled visit with my follow ups and I did not want the repeat CT done, exposing me to more radiation. Plus, I have no idea what is going on? Where are the results of everything else? What is being considered?

At that point, after four hours, the doctor finally poked her head out and interjected herself in the conversation, explaining what she wanted to do. I told her first, I have no idea what’s going on as no one has told me anything, and two, I am having this done by my cardiologist I normally see in two weeks. I was frustrated by how I was being treated, not being talked to, and admittedly, I could have been making a huge mistake demanding my discharge. But I had a huge problem at this point.

Lack of trust. Complete lack of trust.

I breezed through the first half of my cancer survivorship with no issues. But once I experienced my first issue, a “widow maker” blockage of the main artery to my heart, eighteen years ago, the foundation of my care, every decision made, demands trust. And I had none with this doctor. And she could have been the best, I consider where I was one of the best hospitals. But my quirk, was a deal breaker.

As is a right of the patient, I requested to be discharged “against medical adice,” or AMA. Was it the right decision? Was it the smart decision. I have several fellow survivors on both sides giving me support and criticism. Only time will tell. I see my regular doctors next week, and I am having that scan done as I said it would happen. So, I am not avoiding anyone or anything. I am not afraid. Please, all of the things I have gone through, this is just another to me.

But I cannot help but wonder, had I been put into a room instead of leaving me in the hallway, ignored, if things would have turned out differently. I know myself well enough, that answer is yes. Stay tuned to find out.

Using Keyboard Medicine As A Crystal Ball


Ah, the good old days when you saw the doctor, they told you what was wrong, told you what they would do to make you better, and with everything worked out, you would live happily ever after. But over the decades, things have changed dramatically, for the best or the worst, depends on the individual situation.

As an addition to the “21st Century Cures Act” of 2016 which was meant to speed up medical research and treatment approval, in April of 2021, an addition was made to this law, requiring every health care provider to give patients access to their electronic records, immediately, rapidly, and completely. Oh, and free of charge. As a cancer survivor, I cannot tell you how many hundreds of dollars I once had to pay just to get copies of my medical records, my records, about me. I was already paying the doctor, why should I have had to pay for my records?

I would guess that doctors did not like the patient getting a preview of their records before the doctor could talk to them, for any number of reasons, mostly, the patient would jump the gun on diagnosis, and quite possibly stall treatment while arguing from a position the patient knows nothing about, wasting time. There is also wasting time, with distracting research and diagnosis that keyboard doctors find as they find out things on their own and then argue with their doctors. And did I mention, the frustrations of waiting to hear back from the doctors when even they have the information at their fingertips?

In 1996, HIPPA gave patients the legal right to get their records which of course takes time, effort, and money. But the records being digital today, these records are literally at our fingertips. And it is a known factor, that this convenience, does have its benefits. Patients can be better prepared for their appointments having the information ahead of time. A lot of time is wasted dealing with the emotional shock of a serious diagnosis, so if they can get that out of their system prior to the appointment, the doctor can deal with the issue at hand. And then of course, patients can potentially rid themselves of any anxiety waiting for the doctor to call them, sometimes up to two weeks or more.

But how the information gets used as a patient can also have its downside. For instance, a question came across my feed, “from what I have been reading, the typical lifespan of someone with congestive heart failure is 5 years. What are your experiences?” was posted to the social media page.

First, DAMN! I hope it is not five years! I am “living” with congestive heart failure myself, one of my many late side effects from my cancer treatments over 37 years ago. Fortunately, back then, I could not Google research on longevity for my cancer survivorship. But this poster put the question out there. As I mentioned, I am in CHF, and have been since 2021. That makes me at five years right now. I guess I need to make sure my ducks are all in a row at this point. Or… as the other 200 replies he got, basically saying the same thing, stay off Google, and then sharing their inspirational results, 10 years, 25 years, and more, living with CHF and the various activities they still enjoy, including running a marathon.

You see, the problem with making a blanket statement like “how long do people live with…”, one of the reasons statistics are so complicated, they do not take all the mitigating factors into consideration, especially when it comes to the individual patient and their history.

As I often do, I will use myself as an example, even though exposing myself publicly like this with my history some would not consider wise, I sacrifice that, because my purpose in survivorship at this point, is to make a difference to others. And so, I am as transparent as I can be.

As I said, I have been in CHF for five years now. And my past is definitely complicated due to the treatments (high dose radiation and toxic chemo) for Hodgkin’s Lymphoma 37 years ago. For the purposes of time, I won’t list all the potential issues or body systems that can have an impact on CHF, but just listing my heart history by itself, should seem daunting enough:

  • double bypass of the LAD following a “widow maker” level blockage
  • stent of the RCA after blockage of 90%
  • TAVR replacement of aortic valve
  • Left bundle branch block
  • Damage to the mitral valve
  • Well pronounced murmur
  • Ejection fraction of 40%
  • Myocardial ischemia
  • and of course, my diagnosis of CHF

As you can see, my heart is a mess. So if I were to take that poster’s question literally, I don’t have much time left. Now compared to someone who has no other issues with their heart, just CHF, of course, their survival is going to be less complicated, and hence live longer. I mean, is the patient smoking and drinking, eating healthy, living as stress-free as possible, exercising? And of course, do they have their own “other” health issues that could complicate their survival? That is why a blanket statement as fact, just does not work, and is actually harmful.

This is the danger of keyboard medicine, for as good as it can do, it can put the unwarranted fear into someone, who should really get their information and data from those who know, their doctors. Putting your trust in a digital crystal ball is dangerous and will also rob you of quality time you do have, until told otherwise. I know that I have more time than five years, and I am counting on many more.

I am a major believer and supporter of this medical transparency. It really is just a matter of how you use it, and how much time you obsess over the information. For me, I do not use it for the purposes of how long I may have, but rather as a reminder to appreciate everything that I have gone through.

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