Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

17 May 2022

My Bucket List


It was a star-studded movie in 2007, starring Morgan Freeman and Jack Nicholson, called “The Bucket List.” The movie was about two gentlemen, dying from cancer, who make a list of things that they want to do, before they die, and then proceed to do them.

I had never heard of this concept, a “bucket list”. I had heard it frequently following the movie, and still do today. When I hear those talking about their “bucket lists,” I hear of a lot of extravagant things that these people think are important to them to make them feel as if their life is complete. They are not necessarily dying, in fact, most likely, they are in great health. This fancy wish list is just stuff that they want to experience in their life, not just before they die.

I can admit, years ago, I had places that I wanted to visit, though I would not say that it would have to be as some sort of destiny pact. But, as a teenager, I had a school project to complete, about the stages of life. I had been given the stage of death. I needed to find someone to interview, and write about, their feelings of death. I ended up choosing the last person I ever wanted to even think about dying, my grandmother, hoping that she would assure me that she was not even thinking about her end. Well, it turned out, until that moment, having never heard her mention death before, it turned out, she had quite a bit of thoughts about it.

“I have had a great life. I had a good marriage to your grandfather. I was blessed with three children, all who grew up and got married. And I got to be a grandmother. I have gotten to travel and experience so much. But I miss your grandfather. And if today would be my last day, I am ready. I could not ask for anything more of my life.”

That paragraph is in quotes, because I remember the conversation from 1982 (I was a senior in high school). And while I loved my grandmother to the ends of the earth, and the last thing I would ever want to hear about, her passing, I found myself oddly comforted by her feelings. I know she was sincere in what she said. She passed a little over sixteen years later, and got to see her grandchildren get married, and even get to be a “great” grandmother to yet the next generation.

Back before my health went “kablooey” as a result of developing late effects from my cancer treatments for Hodgkin’s Lymphoma, I had lots of things that I had hoped to do. And it was clear that I had the ability and resources to do everything, as long as I stayed the course. My body had different ideas. Since my initial bombshell of a health event back in 2008, a “widow maker” heart blockage, and surviving that, I have had at least six more events that had the same severity and potential for fatality. And as many fellow survivors know, because of these health issues we have, our bodies are unable to deal with incidental events in expected fashion, because our health has been so badly compromised. Too often, I have seen a survivor get through an event, recover, to all of a sudden have a complication, and then succumb. The trauma, just too much for the compromised body to take.

So yes, some of us tend to have a hypersensitivity to our mortality. This by no means we think about dying. We don’t. But we do think about living, especially with the time we have left. And yes, that reminds me of, “The Bucket List.”

I need to preface my bucket list with the fact that, well, I know things. When it comes to the heart, I have had three surgeries since 2008. These are not permanent repairs, and as of right now, I would not be a candidate for a heart transplant because of all the other issues and risks I have. That means, I need to work with what I have, and make the best of it. But if all goes as planned, and there are no further major complications, I know how much time I am likely to have, before needing to be concerned again.

I have already approached the expected lifespan of my bypass, but the good news is, that currently, it is still holding up better than fifty percent. Needless to say, I am thrilled with that, because as the rate of the original blockage took eighteen years, I am still going to have another seven to ten years before this is likely to become an issue again. A stent I had placed in 2019, likely to last up to ten years, and the valve replaced late last year, is expected seven to ten years before it needs to be replaced.

For the average person, without my health issues, when the time would come, you would just have the surgeries to correct everything and that would be that. But with the long term damage from the radiation damage (still active after 32 years) and chemo damage, the risks from a second open heart surgery are not good for me. Bleeding out, infections, and death are at a much increased risk, and then even after those risks, the healing is difficult leading to other issues.

Now, while this may seem overwhelming, and as many close to me who still do not get me, I do not live my life thinking about my “end.” Quite the contrary, like “The Bucket List” or Tim McGraw’s song “Live Like You Were Dying” or Bon Jovi’s “Live Before You Die,” I actually do have my list of things that I want to accomplish or experience before I face that level of heart surgery again. And as you can see, compared with what my grandmother stated, I would, and already do, consider my life a good life.

With that said, and knowing that I have time to experience all of this, I believe this is all possible.

  • Having seen my daughters grow into young ladies, I want to see them graduate high school (this one is right around the corner).
  • I would like to see both my daughters go through some sort of continuing education.
  • After having DJed so many weddings in my life, and played dozens and dozens of Father/Bride songs, you guessed it, I want my turn walking my daughters down the wedding aisle (if they choose to get married that is).
  • I would like the experience of being a grandfather, though the “title” or reference has yet to be determined. Grandparents get to have so much fun and I remember how much I loved mine.
  • There is one thing I would like to do one final time, perform one more gig. I already have it in my mind, accompanied by two acoustic guitars and a conservative drum kit, an intimate gathering for one final performance by me vocally.
  • And finish writing my book, based on my blog, “Paul’s Heart.” For crying out loud, after two and half years during Covid, I am still only 2/3 of the way finished.

And that is my list. It is not expensive, well, except for the college part. But it is all doable, as long as my body cooperates. My fellow survivors understand the suddenness that our issues have and affect our bodies, so I do not take anything for granted. Though my diet is not ideal, I do everything else I can, exercise and keep stress to a minimum, that I will have my best shot at achieving all of the above things.

Because to me, a bucket list means nothing, if it cannot be remembered by everyone else. And if and when that time does come, hopefully not for a while, there will be a lot to remember and talk about.

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
27 Apr 2022

Science And Numbers Have Not Lied


First, looking at this picture, do not be distracted by what I am listening to. I actually do like Nickelback. Don’t judge me. LOL.

Obviously, it was that time again for me to get bloodwork done. And for one of the few times, this was a blood test that I was looking forward to. For one, I keep getting the same phlebotomist who performs the draw flawlessly, painless, and quick. The other reason, the test would provide information in regard to my vaccine status and overall Covid exposure.

But before I go any further, I will save anyone time. If you do not believe in science, and/or allow that it can be flawed at times, skip this post. I am not going to get into anything political about this.

From the beginning of the pandemic, science, at least the CDC, NIH, and FDA, had been concentrating on the more susceptible with their studies. The Leukemia Lymphoma Society, recognizing that it was not likely, that studies would be done on those of us who are immuno-compromised, decided to organize their own study, using patients how have or had dealt with blood cancers, such as leukemia and my cancer, Hodgkin’s Lymphoma.

I am not going to get lost in the weeds with all kinds of details, but here is the summary. In my particular case, I made a conscious decision to hold off on being vaccinated, until I knew that a 3rd dose would be approved. I had more than a strong hunch, that two doses would not be enough to protect me based on prior vaccines. For me to have gotten the vaccines when they became available, would not have allowed me the full benefit I needed from a third dose. Here is my proof.

Following my first dose, my blood showed no traces of antibodies, either from the vaccine, or from a Covid exposure. This was done two weeks after my dose.

My second dose was given 28 days after the first dose, with bloodwork following two weeks again. This time, there was a slight appearance of antibodies from the vaccine, nowhere near what I needed for protection. But the good news was, I also was not exposed to Covid.

Because of the choice I made, unlike others who got their vaccines as they were originally available, and their 3rd vaccine, 5-6 months after their 2nd, I received my 3rd dose, just 28 days after my 2nd dose. As I expected, the 3rd dose was a homerun, producing a robust amount of antibodies, and confirmed, still no exposure.

All I had to do was wait. I knew that I would have more bloodwork, to see if I still had coverage, but I was already anticipating a 4th dose being necessary. The lead doctor of the study, had already hinted at the likelihood. But now, as the fourth dose had not been approved yet, I am now in the position, where I needed to wait five months, to get that fourth jab. But before that, yep, more bloodwork.

This bloodwork would confirm what my levels were like after five months from the 3rd dose. The 4th dose had already been expected in my mind. I anticipated a drop in my antibodies, but not as badly as they had, an 82% decline over the five months. I am as close to no longer being protected again as I was back in the beginning of this. The 4th dose is now scheduled. More bloodwork to come. But will there be a 5th dose or some other plan? Clearly, Covid will be a lifetime risk for me.

There was some good news with this latest blood test. To be clear, I have followed every recommendation from the CDC, regardless of the “keystone cop” approach with communications, the message did not change, “use the caution we recommend”. Masks. Wash hands (really cannot believe people needed to be told that). Avoid indoor crowds. For well over two years, I have done it willingly, without the false trope of “losing freedom” or any of the other false claims that these precautions actually did do. I have faced several exposure risks, from having to be in the hospital for three surgeries during Covid times, people around me discovered to have had Covid and remained silent instead of being concerned for my vulnerabilities, and as shown in the photo below, a crowded airport as I waited to check my daughters bag for their flight home (the mask mandate was still in place, yet 75% of the people were unmasked, and the wait was well over an hour and a half, packed together, indoors). The blood test confirmed, as with the others, “no infection.” Yes, I was still following all those recommendations from the CDC that so many complained about as flawed. The fact is, they work. Need proof?

Of my sibling and I, it is me that has all the vulnerabilities. My sibling was (spoiler alert, I did write “was”) younger, and given all of my complicated survivorship issues, expected to easily outlive me. But there was a problem. My sibling followed the chain of false information and reasoning, from “Covid is a hoax” to “Covid is an attack on Trump,” to “I don’t trust the vaccines,” to “I put my faith in God to protect me,” to “I put my faith in God to cure me.” As I said, “spoiler alert”. I am the one writing this post, not my sibling. My younger sibling died because of all of the anti this and anti that.

The mandates are gone and as expected, all those who were “forced” to protect themselves have now made their choices to throw all precautions to the wind. Many have been infected multiple times, emboldened that they have survived each time, and therefore, will not go to any lengths to protect themselves or anyone else. As one of my friends mistakenly offered his opinion, “herd immunity is what is needed. Which I have always said, herd immunity would come at such a high cost, millions of lives, to which this person responded, “all for the cause. It is the patriotic thing to do.” I was speechless at the thought that someone claimed to have strong religious faith, was okay with sacrificing lives for the cause of the country, as opposed to following simple recommendations. And this sentiment still continues over two years later.

My goal as a long term cancer survivor, as a parent, was to see my daughters grow, become adults, start their lives. As hard as it is, and the odds that are against me doing that, Covid was not something I needed thrown in front of me, making these wishes even more challenging. Yet here I am. I need to avoid Covid so that I can be there for my daughter’s graduation just next month, fortunately, will be an outside event.

So, I must continue to mask. I always wash my hands. I avoid crowds (in full transparency, have always hated crowds anyway). I do go places, but at “lighter” times of day when not as busy. I have just begun eating out, but only if outdoor seating available, or just do take out as I have during the whole pandemic. I have no interest in overpriced boring movies in theaters or concerts. I am pretty much doing all the things I want to do, with all the precautions. I am still free. I am still alive. That is science. Those are the facts.

Posted in Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Side Effects, The Heart | Leave a comment
20 Apr 2022

The Panic Room


Wrapping up the anniversary of my emergency heart bypass for this year, is a topic that I have not previously talked about before. But perhaps of all the things that traumatized me about this surgery, to this day occurred after the surgery was completed.

In the hours prior to the surgery, all I knew was one elementary level thing, the doctors were going to cut open, and break open my chest, to perform heart surgery. There was no time to dwell on the “after” part, as many patients often have weeks or even months to ponder what is going to be done. In that aspect, I was appreciative to not have been tortured with time to dwell on my surgery.

I have been placed under anesthesia many times, and I have never had any issue coming out of it. A slight fog, some focusing, and usually the cobwebs were clear in about a half an hour.

My younger daughter had been placed under anesthesia for ear tubes. My older daughter had this done, and breezed through it. So my younger daughter was expected to go the same way. It did not. As my daughter awoke from her short, forced slumber, her eyes wide open, you could see “fear” in her eyes as her head jerked back and forth, trying to get her bearings. Clearly she recognized that she was not in the room she fell asleep in, and woke up somewhere else, and did not know why. Panic, from a two year old. It was heart breaking to watch. But I was there, talking to her, calming her, and in less than a few minutes, that silly little smile was back on her face, ready to go home.

It was my experience from the heart surgery, that helped me to understand what my daughter was going through.

When my eyes began to open, there were no thoughts at first. I did not even realize that I had just had open heart surgery. The room was very dark. I could not move my head. So what little I could make out, moving my eyes in different directions to figure what I could see, I saw lots of electronic lights throughout the room.

I could not talk. I began to hear noises. A slight humming. Some beeps. My vision began to clear up. My eye movement was quicker as I tried to make out where I was.

Just then, I heard a voice from one of the sides of my bed. It actually sounded like a young boy.

“Mr. Edelman. My name is Joe. I am your nurse. I need you to try to calm down. You are okay. The surgery is over. You did great! But I need you to try to relax.”

That is all I remember at that moment, because I went back out. “Joe” had given me medication to sedate me, as my heart rate was escalating higher than it should have, because I was panicking as I awoke.

Unaware of how long I was out, as I came to, I could see “Joe” by my side, still unable to move my head, but he was in my peripheral viewpoint, tinkering with something by my bedside. The noises all around me were much more clear as well.

“Hey there Mr. Edelman. My name is Joe. You saw me a little while ago, but I had to give you medicine to calm down. I have some things I need to tell you. You are not able to talk right now, as you have a tube down your throat helping you to breath. It is okay. You are breathing on your own, the machine is just helping you.”

Just then I could feel my hand being touched.

“Mr. Edelman, I am going to ask you some questions. But since you cannot talk, I want you to lift a finger on your right hand if you want to answer ‘yes’, a finger on your left hand if you want to answer ‘no’. Do you understand me?” I raised a finger on my right hand. So far, so good.

“Do you know what happened to you?” Typical me, instead of just a simple answer, even without being able to use my mouth, I raised my right hand by the wrist, rocking it back and forth, as if to explain, “kind of.”

“Do you know where you are?” Again, I answered with my whole right hand.

“Mr. Edelman, you had heart surgery. Do you remember having to have it?” I raised a finger from my right hand. I remembered I was supposed to have heart surgery, though at the moment, I was not really feeling anything with my body, including whether anything had been done at all. I had put my trust in “Joe.”

“Your surgery was successful. You are in the intensive care unit. You are doing great.” Funny, I was not sure what I was feeling, because I was not feeling anything, except for confusion. Why couldn’t I move? What are all these lights and noises around me for?

“Are you in any pain or discomfort Mr. Edelman?” I lifted a finger from my left hand, no.

Just then, another individual came into the room. Still darkened, I could not really make out who it was, but from the silhouette of the hair, I could tell it was a female. Still unable to move, I tried to see who it was. But then she started to speak to Joe.

“Is this Mr. Edelman?” she asked. Joe responded, “yes it is.” “I’m Heather. I was his nurse over in the cath lab yesterday. I had heard that he needed to undergo a double bypass and just wanted to stop by and see him.”

Okay. So far, two total strangers. I have yet to see anyone familiar to me from prior to this “fog” I was in, or anyone personal. I did not expect to see my daughters as they were three and five years old. But surely someone had to be around. It’s not like the last two years dealing with Covid, there was only the restriction of limiting one immediate family member. I had Joe and Heather, that was all.

Joe spoke to me, “Mr. Edelman, I need you to try and calm down. Your heart rate is higher than we would like. I can tell something is upsetting you. And I know you must be frustrated that you cannot explain it right now.” At that moment, I raised my right wrist, rocking it back and forth, as emphatically as I could muster. “I know Mr. Edelman. But I need you to try and relax. Someone will be here soon.”

I could see Heather walk around the foot of the bed. I remembered her from the day before. I could not understand what she was doing now by my side. She told me that so many people in the cath lab were pulling for me, knowing how serious the situation was, and of course, mentioning “for someone my age.” Heather encouraged me that I was going to be fine. The hard part was done. Now I needed to heal.

Joe had asked Heather, if she had a moment to spare, if she could help him “clean” me up, also known as bathe me. Together, they got any remnants from the surgery done earlier removed, dried blood, betadine, and anything else. I could not move my arms or my legs, evidently if I wanted to or not, whether I could feel them or not. And though I could not verbally talk to them, they included me in their conversation while they took care of me, and I responded in the same manner as I had done since I came out of the surgery.

When they were done, I could begin to feel some pain. A good thing to me, as I wanted to at least feel something to know that I was in fact alive. “Are you in pain Mr. Edelman?” I raised a finger on my right hand to indicate yes. Joe disappeared from view momentarily, and returned with a syringe that he injected into my IV.

While I was taken care of so well by Heather and Joe, as the medicine began to take effect, I started feeling groggier. Before my eyes closed, I did what I could to take one look around the room, best I could, other than Heather and Joe, I was still alone. Something about this “dream” was not right. Why wasn’t anyone here for me? Doesn’t anybody know what happened to me?

When I woke some time later, having no windows, I had no concept of time, I had a new nurse, Jackie. Joe was reviewing everything that happened from the surgery, through his care. Importantly, he explained how I was answering “yes” and “no” questions. The room was still darkened when she came in. But taking a look around, I could see that there was still no one there, other than my nurses.

“Mr. Edelman, I am going to need you to try to relax,” Jackie calmly tried to ease my stress, beginning to turn towards panic. “Everything is going to be okay now. Very soon, we are going to start removing some of these things, especially the breathing tube. That way you will be able to talk to me. You are doing great!” Though she was very reassuring, it did not have the desired effect of reducing my heart rate, and out I went again.

The final paragraph of this post, I would wake to Jackie by my side, and now some others, who were going to disconnect me from the respirator, and some of the other machinery. More aware of my surroundings, as well as noticing some more level of pain, once everything had been removed, I had the freedom to turn my head to look further around the room, thinking that was why I did not see anyone in the room in the ICU, because just my eyes could only see so much of the room. Maybe who I was looking for was just out of my view the whole time.

Nope. Nobody else was there. Just Jackie, Joe, and Heather. I would never forget that night.

Posted in Cancer, Education, Family and Friends, Side Effects, The Heart | Leave a comment

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