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.
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.
In the movie “50 First Dates,” Adam Sandler falls for Drew Barrymore whose character unfortunately suffered a head injury in a car accident, leaving her with a condition that causes her to lose her memory of anything happening the day before, once she wakes up. As Sandler feels convinced he can help her overcome this malady, those around Barrymore’s character try to convince Sandler’s character that it is not this simple. Brain trauma is difficult to understand, and difficult to live with, not just for the patient, but for those around the patient.
To get their point across to Sandler, Barrymore’s character’s father takes Sandler to a facility treating brain injuries, where they meet “10 Second Tom.” There are five or six people in the room when they meet Tom, and as Tom goes around introducing himself, by the time he gets around to everyone and back to the first person, he reintroduces himself again, as if for the first time, no recollection that he had done so previously. In just ten seconds, he had forgotten everyone.
As the title of this post shows, I have my own cognitive issue with memory, to be clear, in certain situations, that clearly happen within five seconds of being told. For those around me, in the beginning, there was confusion as both sides tried to figure, “did they tell me or didn’t they?” Soon, emotions would turn to anger on their end, frustration on my end, they thinking I was just being irresponsible, me wondering what is going on with me.
This is not the first time that I am dealing with this type of issue. The first time that I faced this issue, was when I was going through my chemotherapy. In fact, it is simply called “chemo brain,” a type of fog created that causes memory and cognitive issues. For many, the condition goes away at some point after treatment ends, for others, it can linger. As I did not discuss this issue with anyone, including my then fiance, it went relatively undetected.
It was nearly eighteen years later, following my emergency open heart surgery, that this issue became quite serious. I began to notice my memory being blocked from remembering a simple 4-digit code that I had used for years. While driving, in spite of me assuring my second wife that I had looked both ways with traffic, there were multiple incidents of me either pulling into traffic and oncoming cars, and on one occasion, nearly striking a pedestrian. While I recall of these incidents, even to this day, I did not “see” the other cars or person. The final straw, occurred while sitting at the dinner table with my family, my three year-old had spilled her glass of water. I freaked out, completely uncharacteristic of me. My then-wife stared at me in horror and anger, I know my look had to be one of shock as I had never reacted this way before. I left the table, and walked out of the house, to try and grasp not only what had happened, but there was a likelihood that all of these issues were related.
I was sent to a neurologist at the University of Pennsylvania, who was unable to determine any cause of what was happening. I looked inside myself, what could possibly be happening if there was nothing physiological going on? What had changed over the last many months, what was different?
One of my medicines had been changed, and the dosage increased dramatically following my surgery. This had to be it. I just knew it, but how do I get the doctors to listen to my concerns? Thanks to Google, I found Dr. Beatrice Golomb at the University of California in San Diego. She had done studies on cognitive issues related to statin use, for cholesterol. Federal regulations do not require side effects to be published as warnings, if the percentage of occurrence is low enough. That does not mean the side effect does not exist. But that is the proof I had been looking for. I reached out to Dr. Golomb and told her of my situation, and while I was unable to be a part of her studies, she did encourage me to press on for answers.
That ended up being my issue. My cholesterol medicine, which I had needed, was changed to a different drug, and increased the dosage 400%, the protocol following my open heart surgery. But I was not going to go through my life this way. I immediately stopped taking the drug, and within days, this issue began to clear up. That was the good news. The bad news was, my cholesterol would begin to skyrocket as it had before. Eventually, the doctors and I would come to terms after trying multiple solutions, and I would return to the original drug, and the original dose before the surgery. I have had no issues like this since.
I am a bit older now, twice divorced. And as it turns out, I am dealing with cognitive issues once again. While I am certain it is no longer “chemo brain,” and I am certain that it is not senility or Alzheimer’s, just on the basis I am only 57 years old. But my body has been through a lot. I went through eight months of extremely toxic chemotherapy, and six weeks of high dose radiation therapy thirty-five years ago.
Like “10 second Tom,” there are things I can forget, literally within five seconds. It does not have to be a list of anything either. I can simply walk from one room to the other, or pick up my phone to Google something, and my thoughts can be gone. It does not happen all of the time, but frequently enough to upset me and those around me. It gets quite frustrating. My long term memory is spot on. But more and more it is happening, I can forget something I was just told, less than five seconds prior.
I have a long list of doctors that I currently see, and it is going to be likely somewhere down the road, I will be adding yet another, neurology, and for the same reason as my others, issues related to the treatments I underwent decades ago for Hodgkin’s Lymphoma.
A recent article shared by a fellow long term Hodgkin’s survivor like me, published in December of 2022 stated that signs of early dementia had been discovered earlier in Hodgkin’s survivors. To be clear, in all of the forums that I participate with other survivors, cognitive issues is not normally the focus as is others such as cardiac, pulmonary, or secondary cancers. The body of a long term Hodgkin’s survivor is often described by doctors as having aged faster than someone who has not had Hodgkin’s. In other words, our bodies are appear older than our stated age. This study, done at the Wilmot Cancer Institute led by Dr. AnnaLynn Williams, shows survivors of Hodgkin’s Lymphoma, now in their 30’s, showed an increased age of 7.7 years biologically than those who were not, and would be consistent with showing the potential for early signs of dementia. These results were eventually shared with the American Society of Hematology’s annual meeting. This, along with other physical developing side effects are finally getting recognized for those of us, 30, 40, 50 years out from our treatments. That is the good news. The bad news is, they are just figuring out what to do now. Other than screenings to try and deal with them before they develop or at least early enough after development, survivors may finally get the help that is needed. That has long been the story of the life of a Hodgkin’s survivor.
While those around me may be frustrated, empathetic, or accepting with my health issues, especially this one in particular, I am doing my part to make sure that I am aware how fast this might progress. A simple task, a grocery list, I use now as a test, to see how many items I can remember to buy. I intentionally leave the list at home. To be honest, this particular list pictured went with me. But there are lists that have only four or five items, and those I try to do by memory. More times than not, I do forget at least one or more of the items on the shortened list.
To be clear, my long term memory is as sharp as ever, every detail. Even a random phone number of my high school sweetheart is still locked in my noodle. But if it were not for post-it notes, I might have to resort to methods used in the movie Memento, body notes tatooed to remember.
Below are two very important links. The first, is for the Golomb Research Group at the UC San Diego. The second link is for the article pertaining to early dementia signs in Hodgkin’s survivors.
Paul's Heart 