Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “September, 2023”

08 Sep 2023

When Is The Right Time?


I am doing my final edits of my book (yes, that is right! I finally finished it!) before I send it off to be published. I am at the part of the book where I discuss my heart surgery, and my concern for my daughters.

My daughters were not born yet when I went through my battle with Hodgkin’s Lymphoma thirty-five years ago. But they were there, when my world got turned upside down, as late developing side effects from my treatments revealed themselves in a rude way, requiring emergency open heart surgery. My daughters were aged five and three at the time. I was still adapting to the news myself, but I had two young girls who had no idea what I was about to go through, what I would be like after the surgery was done, or worse, if I did not survive.

My daughters by that age, did understand the concept of someone being sick or not feeling well. In fact, many children have toy medical kits to play doctor, a valuable opportunity for children to learn not to be afraid of doctors, nurses, and hospitals. My daughters were no strangers to me taking care of them when they were not feeling well. Of course, they liked the extra attention, but they also loved the comfort it gave them.

This medical experience that they have already had though, has been at their “age appropriate” level, how things got explained. When dealing with an issue, our children learn to trust us, that we will help the doctors make them feel better. Sometimes we end up being the bad guy, forcing them to submit to an occasional blood test or vaccine, or take some medicine. In the end, our children learn that all of us play an important part in the care.

When it came time, the first of many, that my daughters witnessed a major health issue with me, the concern was “how much do I tell them?” They knew about my cancer past, but did not know that it was my treatments that caused this. At their age at the time, that would have been too complicated for them to understand. But not being able to hide the enormous scar on my chest, not to mention having to prevent them from climbing all over me for the time being, would be too hard to cover up and pretend did not happen. Again, anything said to them, would have to be “age appropriate.”

Nothing was said to them prior to the surgery, but when my daughters were brought in to see me following the surgery, you could see the fear in their eyes, seeing me laid out in a hospital bed, connected to all kinds of machines and tubes coming out of me. As I was able to speak with the breathing tube no longer in me, I was able to assure them, “It’s okay. Daddy is fine now.” My older daughter was more curious about all the machines and bells and whistles. My younger daughter had been placed on the bed with me, as she snuggled up along side of me. Age appropriate. “Daddy’s heart was not working right, and the doctors fixed it. I will feel better real soon.” That was all they needed to hear. And it was the truth. Age appropriate.

Unfortunately, as they got older, I continued to develop additional health issues related to my cancer treatment history. But as long as I did not need surgery, it was not something I felt needed discussing with my daughters. What I did disagree with however, their mother chose to tell my daughters repeatedly that I was “fine,” “nothing wrong with” me. While in the moment, there were no pressing issues, there were plenty things wrong with my health, that were being watched, waiting for the time something would need to be done.

Then, on March 26th, 2012, at 3:00 am, I was rolled out of my house on an ambulance stretcher, as my daughters watched from the top of the stairs. I was dying from sepsis and pneumonia. I spent several days in the hospital recovering. I never did know what my daughters were told. I do know that they remember that night. I did not see them again until I came home from the hospital, when I had the chance to explain to them, now aged 9 and 7, that I was just very sick, but the doctors took care of me. Again, at that age, they were still too young to learn about my complicated health history. At the same time, there were still those around me, telling not only my daughters, telling others, there was nothing wrong with me.

Over the next many years, I would end up in the hospital several times. My daughters, though being told there was nothing wrong with me by others, saw that things did happen. But the results were always the same. I went to the hospital, and I got better. As they became teenagers, that allowed me to explain in a bit more detail, not explicit details, as events came up. And still, there were those willing to say otherwise.

My divorce would complicate communications quite a bit, as there would be attempts to use my health against me, which put me in the position of not letting my daughters know when something had happened. This was painful for me emotionally, but it also presented another issue, it reinforced to my daughters what others were saying falsely, that I was okay after all, nothing wrong with me. Age appropriate. I made sure that my daughters were not included in any discussions about the divorce, unless it was something that needed defending. But I never put them in the middle of it. In their late teens and now as adults, they are told 100% what is and has been happening with my body. It has been explained why these things happen and have happened. They also know, while I am being treated, I will never be 100% better again. My health issues will continue. They know what I am having done, when I am having it done, and told when it has been done.

My daughters need to know these things. They deserve to know what is happening, and the truth. Even before they were eighteen, they were capable of hearing some form of the truth. I have no idea if the other voices around them are continuing to spread the false statements that nothing is wrong with me, but I know my daughters know the truth. They need to know the truth. They deserve to know the truth.

This picture was taken after my most recent surgery, my 3rd heart surgery back in 2021. I was Facetiming with my daughters who knew I was having the procedure, and I promised them that I would let them know as soon as I was able to call them. My daughters were 18 and 16, and because of all the other untrue stories they were being told by others, I made sure they knew the truth, not to scare them, but because they had the right to know the truth. And they were more than capable of handling it.

My father had been lied to, as an adult, that his mother was just having a gall bladder attack. She soon died, not from her gall bladder, but from cancer. And it was because of that, and the memories of how she looked in the end, that kept my Dad from being there for me during my battle with Hodgkin’s Lymphoma, because he felt he could not handle being lied to again.

My grandmother lied to me twice. Once by omission by not telling me of her diagnosis of breast cancer, and the second, by having the doctors follow her orders, and hide the fact that she was terminal with a second cancer, ovarian. These situations created issues of guilt for me, because of things left unsaid, undone because time ran out. They were things that should have been done anyway, but had we known time was not long enough, we would have taken more time with her.

There is no turning back, no do-over when it comes to my Father and Grandmother. They are gone. But the thing I learned, was I would always be up front with my daughters and tell them the truth, not to scare them, but so that they could see, I was not afraid, and I was going to do all I could, to pull through as I always do. Should something happen to me, with a terminal ending, which I obviously would never see coming, would be devastating to my daughters if they did not have one final moment with me.

Again, I have no idea if my daughters are still being lied to by people who honestly have no idea about my health anymore after a decade. And that will be their cross to bare, having that mistrust with my daughters. But my daughters do understand my complicated health history. All that they expect of me, is to take care of myself, listen to my doctors and my caregivers, and we should see each other next time. That is the plan. If something comes up before then, they get told. It gets dealt with. And we continue on to our next visit with each other.

Which after all these years, despite my health, I have lived to see both of my daughters graduate high school, and next week, both will now be in college. My health never seems to play fair, giving me no warning when something is not right, but I do have a long list of other things I want to experience in my life, as long as the higher powers above will grant them to me.

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
07 Sep 2023

The “Do Over”


The question is, “if you had the chance to go back in time, and re-live something over again, what would you want to re-live and would you do it?”

First, I need to offer a disclaimer and “nerd” alert. I am a huge fan of the television show “Quantum Leap” and the movie “Back To The Future.” So, to understand the above question, I would have to understand the ramifications and risks associated with going back in time. Even the slightest change in the past would have a major impact on the future.

For instance, though there is no known cause of Hodgkin’s Lymphoma, if I were to relive any time period just before my diagnosis, and somehow end up not being diagnosed with cancer, on one hand that would be a great thing. But tragically, that would erase all that I have accomplished over the years, and take away the two most important people away from me, my daughters.

There are definitely things that I would not want to relive again, all losses of loved ones.

As my path through Fatherhood was not as I had originally planned, I did the best that I could and accomplished what I needed to. I have plenty of photos to look back on to relive all of those moments.

There is one moment in my life, that I do wish I could live over again, but this would come at a risk of changing history. Because there would be a slight/major change in the moment.

One of many stories I had written over the years was being performed (read) live, by professional actors. It was an achievement I never thought possible. The story was about the passing of my Father. But being recently separated at the time, I wanted my daughters to attend this moment with me, but was denied by their mother. I had promised that everything would be done to make sure they were prepared for, and able to attend school the next morning. I was still refused.

It was one of the most powerful and surreal experiences in my life that I do not know if I will ever get the chance to experience anything like that again. I do not know if getting to go back, have my daughters sit by my side for the performance, meet the actors afterwards, and listen to the kind words of audience members would change any direction of the future. But if I had one moment, to relive over again, this would be it.

Posted in Adoption, Animals, Bullying, Cancer, Education, Family and Friends, Food, Inspired By..., Politics, Recreation, Side Effects, The Heart | Leave a comment
05 Sep 2023

Birth Of An Advocate


If you have ever been in a doctor’s office, not feeling well, there is a good chance that you have heard this question posed to you… “so when did you first notice…?” Three years ago, I can pinpoint to the day, that a condition that I was aware of with my cancer survivorship, finally needed to be addressed. Anyone with heart issues, regardless if cancer was a predecessor, knows at times, breathing can be difficult. If you have a valve issue, as I did, once it hits a severe point, you practically collapse or actually do if not treated quickly. That is exactly what happened to me, in August of 2022, my aortic valve let me know, it was finally time to get dealt with as I was collapsing while crossing a street.

I am not sure what prompted the need for retrospect, but a recollection and telling of a story, of my early days as a survivor of Hodgkin’s Lymphoma, answered a question I had never really thought about, I just accepted it as a fact of who I was. The day I became an advocate.

I had just completed my treatments for Hodgkin’s, both chemotherapy and radiation, had gotten married, and while happy with my current employment, I felt I wanted more. My stepfather, an insurance agent for a nation wide insurance company (I am not actually saying the name), and had offered me an opportunity to come work for them. I was fairly personable, and working a commission paying job, I felt would really be a huge opportunity for me. So I hit the books, to study and test for my license which I excelled at, aced my interview, and passed my physical, which was not bad for someone who had just gone through a two year cancer battle. Then a phone call came.

“Hi, it’s Jim (he was the district manager). Listen, everything went well for you, however, the company would prefer that you were in remission longer from your cancer. I’m sorry. Maybe a few years down the road you can try again.” That is exactly the conversation that was had. I will never forget the words. I was being discriminated against, because I had cancer. It did not matter that I was in remission, which was the hardest thing I had ever gone through in my life.

I was fuming. My stepfather asked how everything went, he of course was disappointed, but he was not going to argue on my behalf, he needed his job. I reached out to my counselor at the hospital, met with him, and just released a wave of emotions. Was this how my life was going to be after cancer? Everyone and everything was going to be held against me, because I had cancer? What the fuck did I fight so hard for, if everything was going to be against me? His name was John, and he encouraged me, that I could try to file a complaint with the Department of Labor in Harrisburg, Pennsylvania. It was a long shot. I had no money to hire a lawyer, but John assured me, he was willing to stand by my side and travel with me.

In Harrisburg, there was John and I, a representative from the DOL, and of course the district manager and legal representation from the insurance company. There was no money involved as I was not seeking any. This was about principal. I did not want the company to get away with what they had done. There was a fatal flaw in my argument. The state’s rep explained, “their manager claims that they never withdrew their offer of employment, that you withdrew your application.” I denied this, and it was clear the DOL believed me. But still, without any proof, it was my word against his. I had lost. Or so I thought. The agent from the DOL began…

“It is our duty to inform you, that while there is a stalemate involving the conflict between Mr. Edelman and your company as to what happened, we need to let you know, that as of July 26th of this year (1990), any action of discrimination based on health is illegal as stated in the Americans With Disabilities Act. What this means, is you can no longer ask a perspective employee about their health, or require a physical, until you have deemed them of the status, intent to hire upon passing said physical.” And with that, the agent placed a copy of the ADA in front of the lawyer and continued, “you will need to make the correction in your hiring process nation wide as this is now law.” While the ADA requirement was brand new, it was not well known. And this company was to become one of the first, faced with immediate corrective action to be taken. I may have lost my battle, but I won the war.

That was my moment, when I knew, that I had discovered a purpose, being an advocate. It is never about money for me, NEVER! And whether it is helping a cancer survivor navigate health care, assist with international adoption, heart disease support, protecting public education, or providing support to parents struggling with divorce and custody, I will be there. This is who I am. I am just one person, so I do this on a much smaller scale. But for me to be able to help just one, like one person, John, helped me, that is what I want to do, and I do not care who you are.

Take a story that came across my feed yesterday. It was a Dad, from what I could read through the emotions, facing the loss of his rights as a father, but also at the risk of losing any rights of custody. There was a problem. I was too distracted by the way that he wrote his post. Clearly he was upset, but his thinking was so outraged and filled with irrational thoughts that if he was to appear in front of a judge anytime soon, he would definitely lose everything.

While the terms he was using in his “claim” were purely political, and on the verge of conspiratorial, I wanted him to realize, that he needed to get back to the basics of what was important in all this, his child. He could not afford to dwell on how he felt lawyers and judges might rule based on political biases and beliefs. If he came off as anything less than a concerned parent, who had rights to a natural relationship with his child, and instead seen as a danger, he would lose it all.

It took a few back and forths, but I finally got him to stop using certain political terminology, and instead, listen to how to present what would not only be in the best interest of the child, but in his case, allow him the efforts he felt he needed to have in place to “protect” his child.

I advised him, he needed to modify his custody order to achieve what he wanted to do. This was not going to matter if his ex was going to try and get full custody and take his rights away. As long as he remained calm and focused on what was important, the child, a judge should never take that away from him. So, he needed to put that aside. Instead, he needed to make sure, in his order, that he had 50-50 “legal” custody, which is different than physical custody. Legal custody gives both parents the right to make decisions, equally, that both should have a say in anything needed to be taken care of with the child. The most important part in his situation. He needed to make sure that it was clearly written, that nothing medical could be administered or performed, without both parents approval and in the case of an emergency, only if ALL efforts were exhausted in trying to reach the other parent had failed, would that allow anything to proceed.

I know first hand, that trying to argue emotionally and fired up in front of a judicial official at any level, is guaranteed to fail. And that is exactly where he was heading otherwise. It did not matter if I agreed with his position, the child, and the intentions of his ex. It did not matter if I agreed or disagreed with his politics, religion, or morals. This is what an advocate does.

I have no idea how his situation will turn out, as he has stopped communicating. I honestly doubt, given his “temperature,” that he would take my advice. All I know, is I did all I could, provide a voice of reason, from someone who had been there, done that.

In my 35 years of survivorship, this is who I am, whether it was health related, school related, adoption related, or custody related, even employer related (I was a good union shop steward too), I was always about support, protection, and doing what was right. Money is never an issue. Just do the right thing, and you will never have to deal with me.

Posted in Adoption, Animals, Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Recreation, Side Effects, The Heart | Leave a comment

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