Paul's Heart

Was It “Worth It?”

It is always bittersweet for me when I share this type of announcement. I made it clear when I completed my treatments for cancer, Hodgkin’s Lymphoma, I wanted to do what I could, to show others, that they could do it also. And from day one, that is exactly what I have done.

And in 1982, never did I think as I was the sole participant for an American Heart Association fundraiser as a senior in high school, a few years before my cancer diagnosis, that I myself would become a cardiac survivor more than twenty-five years later, a situation actually caused by my cancer treatments.

Being a survivor of even just one of these medical crisis is reason enough to celebrate, but to face two different medical challenges is a whole other level.

Like I said, my longevity is bittersweet, because as amazing as it is to have survived this long after both cancer and cardiac events, there are so many other survivors of both, who came into my life, and are no longer here. This, is what I struggle with, my “survivor’s guilt.” I do not feel guilty for my surviving either of cancer or cardiac issues, not at all. But I feel guilty that so many others have not. There is no rhyme or reason for who continues on and who does not, even if we underwent similar treatments or procedures, does not guarantee us longevity. There is no answer to “why them, not me?”

I know so many long term survivors of the cancer that I faced personally, Hodgkin’s Lymphoma that are with me today. And they are an inspiration to me, as many are now 40 and 50 years into their survivorship. As they are an inspiration to me, at 37 years of cancer survivorship, I want to be that inspiration to others behind me. That is why I still celebrate my survivorship, as uncomfortable as it makes me feel.

But as each year passes, adding to my longevity, that means more milestones that I will get to experience. Next week, I will experience two this week, as my younger daughter celebrates her 21st birthday today, both of my daughters officially over the age of 21, and my older daughter will be the first of two college graduations I will get to witness within a year of each other.

I want to be clear, when the day comes, my daughter’s graduation will not be about me, my milestones, or my survivorship. Her graduation day is 100% about her, her choice of school, her efforts to complete her schoolwork and projects, and getting up on that stage to get her degree that she worked so hard for. I am so excited for her, so proud of her, and we will celebrate this momentous occasion for her.

So before I can get to that point, I need to release my survivorship issues in regard to this milestone. Because it is a milestone for me to still be here to witness my daughter graduate from college. Even back in my days when I was battling cancer, I was often told by my therapist, that I did not take seriously, the toxic severity of what I was dealing with when it came to my treatments. And there were multiple times that I was in critical condition from various medical events. Have I earned this opportunity to be celebratory? Absolutely. But as always, my heart is also heavy for those who have passed on.

I have many parents in my life, while I know they are happy for my daughter, and all the things I have gotten to experience with my daughters over the years, I know their hearts carry a heaviness that never goes away, having lost their child, never to have a memory like this. Again, I truly believe those in my life in this situation are happy for me, and want me celebrate, and will congratulate all around. I just need them to know they are in my thoughts as they remember their loved ones.

And then there are the thousands of survivors that I have come across in my survivorship. Yes, thousands, literally from all over the world. Of my original “core 4”, those who were treated and I knew around the same time frame, only two of us are left. And there are over a hundred more over the decades that I have had to say goodbye to, due to complications of their survivorship, or some other spontaneous event. I know those who have gone on, if they were here, would be joining my other fellow survivors in cheering on my daughter. We truly appreciate how much everything can turn on a dime, and be gone just like that. And against all odds, starting with the original health crisis, a battle with cancer, I am still here to watch my daughter receive her degree.

My life has not been all about cancer. Sure, I have done what I can to advocate for patients and survivors. But my biggest role has been “girl dad.” My daughters laugh at all the photos I have taken over the years of them, but who do they call when they need a photo from a certain time doing a certain activity? This guy. I love going through the thousands of photos over the last twenty years, remembering how they got to this moment.

But this week, the moment needs to belong to my oldest daughter, not me. And I will do all that I can to make sure that happens.

When The Body Tries To Warn You – Part 6

The day had come. All of my tubes had come out, and my PICC line was removed. All that remained were the telemetry wires, and a huge patch/bandage over my sternum. I wanted my daughters to come to the hospital. I needed to see them. I know that I did not look perfect, but I no longer looked as bad as I thought. Them seeing me in this bed would not scare them.

It is always the hardest thing, what and how much to tell a child is happening. Of course a lot depends on age. And on top of that, at their young ages, they already had a friend who lost their father to a cardiac incident, so how I explained everything would make a huge difference to them.

I was told that my daughters had arrived at the hospital and were on their way upstairs. I felt a huge swell of emotions as this was all I wanted, to see my daughters again, to know that I was going to have a “rest of my life” with them. In the distance I could hear my older daughter talking, noticing everything as she walked the hallway. And then, there they were, standing in the doorway. It felt like forever. You could see excitement in their eyes to see me, but confusion as to “what happened to you Daddy?”

My older daughter walked cautiously around the bed, of course gravitating toward what was left of the machinery, looking at all the blinking lights and numbers. My younger daughter was a lot more deliberate, seemingly moving an inch at a time.

“Hi Girlies! I am so happy to see you! I have missed you so much! Daddy is all better! The doctors took real good care of me, and I am feeling better. I am going to be better!”

It is often asked, “what and how much do you say to a child when dealing with a serious issue?” And the answer is always, you tell the truth, but you keep it age appropriate. My daughters were 5 and 3 years old, and how I greeted them was all that they needed to know. You could feel the collective relief from all of us.

Maddie was still busy checking things out, but Emmy had found her way, lifted up onto the bed. This was going to be a test. A 3-year old has no concept about a healing breast bone, anything could happen. This would not be a blooper if it did. As she sat by my waste, I grabbed her hand, and told her once again, “Daddy is going to be okay now.” A few moments later, she repositioned herself, now laying her head by my pelvis, nestled, almost as if she were guarding me, keeping me safe. Maddie’s inventory of my room was completed, so now there were 5-year old questions to be answered.

I don’t know how much of the environment sunk in to my daughters. But I could tell the impact of them seeing me, not bouncing all over the place completing activities or playing with them. They knew I was not feeling well. But they also knew that what I told them the other night, that I was going to be better. And that is what they saw.

Now I could say that I was recovered, that I made it through this harrowing surgery. Another day or two in the hospital and I was going to be allowed to return home. There was just one minor task that needed to be completed. I am going to keep this from getting too graphic or detailed, but it was still a major issue. I had not had a bowel movement since my surgery. In fact, with stethoscopes, nurses could not even hear any gutteral noises. Again, without going into detail, I have a complicated system, so while this was normal for me, it was still unacceptable to them.

And in it came, “power pudding.”

Power pudding. I had no idea what was in it, but I was told it was guaranteed to make me go. Later I would find out the ingredients, apple sauce, prune juice, and wheat bran, mixed together until it produces a pudding consistency. Sadly, my medical team was disappointed and the pudding did not produce results.

In spite of me not meeting all of the “unofficial” requirements or benchmarks, I was released and sent home, with the heart shaped pillow as pictured in the beginning and above. Its use was to help me protect myself with sudden sneezes or coughs, or any other kind of movements that would put pressure on my breast bone. I still have it to this day, 18 years later. And also 18 years later, I am still here to witness the many exciting memories to come since I have gotten to see both my daughters grow into adults, now on the doorsteps of graduating from college. Had you told me back in 2008 that I would still be here to this day to see this milestone, even my cardiologist admonished me, “it was not a question of ‘if’ I would have that fatal heart attack, but ‘when'” had I gotten there any later.

There have been many times in my survivorship, when I have heard fellow survivors expressing experiencing that similar sensation that I had. Besides being a major trigger for me, I have not been wrong yet insisting on them going to the emergency room, all facing that “widow maker.” This series of posts was quite heavy, but believe me, it could not be any more important. They call cardiac disease the silent killer for a reason, even with symptoms, either because we are scared of what we think could be happening, or in total denial. And it is much better not to take any chance, go to the ER, and let them either diagnose you, or say there is nothing wrong. Just you don’t make the wrong decision.

When The Body Tries To Warn You – Part 5

(image created via ChatGPT)

Again, I need you to read the prior parts of this story so you can appreciate where the next parts of this story are headed.

Once I was taken off of the respirator, I could feel things accelerating. Joe had come into my room to inform me that I would likely be leaving the ICU before the end of the day, heading to the step down level of cardiac care. While it was routine for him to see I am sure, for me, everything was just happening so fast. And I definitely did not feel as if I was “better.”

So it had to be another twelve hours, as Jackie had come back into my room. She was organizing all of the equipment around me a particular way, which I thought was odd. And then she told me, I was being moved from the ICU. Good news for sure, and then she told me how.

“We want our patients out of the bed, and to start walking as soon as able.” Huh? You know I just had open heart surgery, right? I am so weak. I have zero strength. “So, your first walk is going to be to your room. We will follow behind you with a wheelchair in the event you need to sit down…” Sit down? You think? You are out of your mind if you think I can do that. “I will tell you, it is a fairly long walk, especially considering, but I know you can do it. I know you want to do it.” Minutes later, in came a wheelchair and an entire crew or posse.

It took several minutes just to get me to sit up at the edge of the bed, and I was exhausted already. With a group of people all around me, I was asked, let us know when you are ready. As if on cue, one of my greatest defense mechanisms, music started playing in my head. It was the perfect moment, the theme from the movie Rocky was now playing in my head. I was sckooched forward to the edge of the bed, my feet touching the floor for the first time in what felt like two days. And then two of the group stood on each side of me, positioned the wheelchair at the ready, and asked, “you ready?” And I said, “let’s do this.” And the music got louder, more triumphant, more inspirational. I had survived my heart surgery, and these were the first steps I was taking. I stood up from the bed, a nurse on either side of me, supporting my elbows, and then just like in the Christmas special, it was one foot in front of the other. As I exited my room in the ICU, I was given instructions which way to turn. Again, I was warned that I had a lengthy walk ahead of me, the length of two football fields in total.

At the elevator was the halfway mark. As we boarded the elevator, I was encouraged to have a seat in the wheelchair, at least until we got to the next floor. I wanted no parts of that, afraid that once I sat down I would not get back up. Soon the elevator doors opened up, I turned to my right, and there was the next hall. It was definitely a long hallway, and my room was the last one room on the left. Everyone seemed amazed at how well my stamina was holding up. I am certain I was running on adrenaline. Halfway down the hall, one of my nurses explained to me, that I should try to walk this floor at least three times a day, with supervision of course, and then eventually they would have me doing stairs. That was a mistake to tell me as I am a goal driven person, and in spite of how horrible I felt, I knew what I wanted to accomplish to feel better.

By the time I got to my room, I was asked if I would like to sit for a while in the chair or if I wanted to just get comfortable in the bed. I was exhausted. It was a no-brainer. I needed a nap.

I finally had a window, I could see sunshine again. And I could also see what else remained of my Frankenstein contraption with all the tubes and wires. I was starting to figure out which did what and went where. My pain was becoming more managable and more importantly, I got to order my meals off of a menu.

And for the first time, with lesser pain, I began to think of my daughters again. I needed to at least talk to them, let them know I was okay. I definitely was not in any kind of shape for them to see me yet. Oh, how I missed them.

Like I said, things would start to move quickly, especially now that I was in a private room. It was time to remove one of my chest tubes, and the leads in my picc line that measured my heart’s actual blood pressure. The chest tube removal was weird in that my abodmen’s discomfort was because of all of the tubing under the skin. And just like removing my breathing tube, an exhale and the tube was removed and a couple of butterfly strips were applied to close up the hole left behind. Now the leads, that was a different story. I would feel these being pulled from my heart through one side of my body, across the top of my shoulders to the exit of the picc line. It did not hurt, but man it felt weird. And finally, a small electronic box was placed around my neck. It was a portable telemetry device to monitor my heart rate, which was clearly a sign, that I was expected to go for some walks. I did not need to be told twice. But I found out there were going to be some ground rules. I was not allowed to walk alone, for fear of falling. With my chest being split open, a fall would be devastating. The next rule was mine.

Anyone who has ever stayed in a hospital, knows that there are constant interruptions all hourse of the day and night. I think I was on my 3rd night (like I said, I lost my sense of time in the ICU), and finally getting some good sleep. It was around 4am, and someone came into my room, and told me that I needed to get up out of the bed, I needed to be weighed. Riiiiiiggggghhht, at 4am? “Ok, but since you are getting me out of bed, I think I may as well knock out my first walk of the day.” The tech was like, “you can’t do that, you need to be accompanied by someone.” And I said, “right, that would be you.” And she said, “I can’t, first I am not supposed to, and second I don’t have the time.” So I replied, “then we are going to have a problem. If I get out of this bed, at 4am, I am making it worth my while and going for a walk, with or without someone.” And with that, she walked out of the room, and I went back to sleep. My sleep was never disturbed again the rest of my stay, or at least they were more quiet and gentle about it.

The next day, my remaining two chest tubes were removed, as well as that catheter. And let me tell you, that was a weird feeling, and as much catheter tubing that was up the old man plumbing, I don’t even want to think about how they got it all the way up there. All that was left was my picc line. For a brief moment, I thought it was going to come in handy. I had begun to run a fever. Following heart surgery, this is a pretty good sign I was dealing with an infection. So, in came the blood tech and I was all brave like, “okay, here you go, this will be easy with the line,” making reference that they would not have to deal with my difficult veins having this line. “I’m sorry sir, but to do a culture, we need a clean site, in fact two separate clean sites.” I responded, “then you better get a whole lot of help.” I was not kidding, the first draw took 9 attempts and three techs. The second stab did not take as many attempts, but was still stressful.

I was bored. I had already gotten two walks in so far for the day, and I would likely get more in. But located next to my room, was a stairway. And I remembered that I was told that sometime during my recovery, they would have me do the stairs. Well… I was feeling pretty good, bored, but no one was around for me to bug to let me do the stairs. I wasn’t plugged in, so I could just get out of bed with the telemetry box. As I peeked out of the room, I didn’t see anyone in the halls at all. Ok, I wasn’t going to take that much time. I just wanted to see if I could do a few stairs. Into the stairwell I went. I took my time, one step at a time, and found it was actually fairly easy for me. And I kept climbing. Next thing you know, I was at the top of the first landing. I wanted to go further, and so I began climbing the next set of stairs. I got halfway up the next flight, and I heard a door slam open. “MR. EDELMAN! ARE YOU IN HERE?!?” Busted. “Mr. Edelman, please stay right there. You aren’t supposed to be in here, let alone by yourself… blah blah blah.” She was overlooking the obvious, I did it! And it felt good!

And that was how my room got moved to directly in front of the nurse’s station. But even that did not stop me from getting scolded some more. April is hockey playoff month. And the Flyers, my team, was pushing for the playoffs. I had been put on a “no sports” watch for fear of my heart rate or blood pressure going crazy. But I thought, if I kept the volume down, they would never know if I was watching. Right? Riiiigggghhht? After all, I can watch a game calmly and reserved. I was betrayed by my heart, as a nurse came rushing in with my heart rate over 110 as I was laying in my bed. Off went the TV. I had heard the Flyers won anyway.

I was finally starting to feel human again. I was feeling better, and felt I was getting stronger. I was getting back to myself. There was just one more thing I needed to do.

My daughters.