Nowhere near my next age milestone of 40 years, but I realize being in remission for cancer for 36 years is nothing to sneeze at. In fact, advice that I often give to new patients and survivors, in dealing with remission and survivorship with all the anxieties and concerns of relapses, is to take it, yes I know this will be cliche, one day at a time. And quick math, my 36 years comes to 13,140 days, and that is a long time. When I say it gets easier as time goes on, I mean it. I remember every day of my cancer journey as if it just happened. While at the same time, these 36 years seem to have flown by.
In the 36 years of my remission, the diagnostics used to diagnose Hodgkin’s Lymphoma, no longer used. The methods used to stage Hodgkin’s, such as the laparotomy and the lymphangiogram, are no longer used. The high dose, “scattered field” approach of using radiation therapy to treat Hodgkin’s, is no longer used. And the treatment used before the current standard of chemotherapy, a hybrid, MOPP-ABV (now used ABV-D), is no longer used. I have been in remission long enough to witness all of this progress.
Over these 36 years, I have been discriminated against for employment before the Americans With Disabilities Act was passed making that practice illegal. I struggled to get health insurance due to my pre-existing condition of cancer until the Affordable Care Act was passed requiring that acceptance.
I got married twice, and also divorced twice. I am blessed with two wonderful daughters, now in their twenties, over half of my survivorship, one on the verge of graduating college. I bought a house with a fence, just not white picket, which allowed the dog I always wanted, a golden retriever, to be able to run and play safely in the yard. I had a nice career working in of all occupations, medical research, even handling one of the chemo drugs I had been given. I participated in two school board campaigns as a candidate, the only time I have ever run for a public office. I have travelled to all four corners of the country, and around the world.
I have written and published many stories and publications, and two years ago, published my first book, “Paul’s Heart – Life As A Dad And A 35 Year Cancer Survivor” available on Amazon. I have had one of my stories acted out professionally by actors. And I still have many works in the process.
Music was always a huge part of my cancer journey, but also my survivorship. Whether I was disc jockeying (which I did for 40 years), or performing live vocals, it was the one time I could forget that I had cancer, or at least not think about it. I picked up the guitar and keyboards again, the first time since high school. And of course, I have a huge catalogue of music of all genres to listen and disappear to.
These 36 years have not been easy, or without price. Because medicine never studied what could happen if cancer survivors lived long term, more than the five years we are always quoted, and because we do, for many cancers now, late side effects from the treatments appear in some, not all, cancer survivors. The problem was, there was no plan for this and if it happened. And for those who did develope these issues, decades ago, could not find the care to help with these odd issues, or even how to treat them. But with the coming of social media and the internet, it would be other survivors, and eventually doctors catching on, now finally getting the attention to survivors, that we all should be followed up after five years, not necessarily by the oncologist, but at least by a primary care physician, to watch for something to develop if it does. Again, this is not guaranteed to happen, but if it does, it is important to be dealt with sooner than later. My health history on this page is filled with details of issues I have faced.
And one of the coolest experiences, was getting to reunite with my oncology nurse, my counselor, and my radiation tech, decades later, so that they could see the great thing they did. I know that not all of their stories had happy endings, but for a brief moment, I gave them one memory to remember they saved a life.
And then finally, and as important as my survivorship experiences, are the hundreds of patients and survivors who have crossed paths with me, either through peer to peer counseling, social media, or even happen chance meetings. Each and every person I have met or talked to, is a part of my success of 36 years. There is one downside, I have had to say goodbye to some of my fellow survivors, many way too soon, their bodies no longer able to handle the lifetime of trauma from their experience. Everyone, living and those gone, are all so important to me in my survivorship.
I am hoping, and according to my counter on my main page, that I will have another four years in me, to reach the 40 year milestone of survivorship, after which I will reset my counter to 50 years. I am still hoping to experience so much more. At least that is my plan. I know there is so much more for me to experience.
I cannot donate blood or organs because of my treatment history. I will not discover any cures or treatments, and financially I am not able to give back. So this is why I do “Paul’s Heart.” This is my way of giving back, sharing my private experiences, one reader or follower at a time, hopefully giving the inspiration that I looked for decades ago, and could not find, forcing me to take my fight against cancer on my own. And I hope my story does make a difference.
Stick around, there is going to be a lot more to come.
“Heavy is the head that wears the crown.” This is a line that you may have come across in your life at some point, whether reading Shakespeare, or even listening to the radio, this reference is often made. It references all the things that come with being a King, and not all things are good such as anxiety and pressure. A clearer explanation would be to tell the Greek legend of Damacles, a tale of one man’s admiration for his king and power. The king tries to convince Damacles of the dangers of being king, by allowing Damacles to sit on his throne. The catch is, directly above the throne is a sword, hanging by a single horse tail hair, and that horsehair could give way any moment, without any warning, demonstrating the perils of being king. While this tale can often be told making reference to today’s world and news, it can also relate to the life of a cancer survivor.
When diagnosed with any cancer, almost everyone gets told the same thing, “at 5 years of remission, we consider you ‘cured’, or not likely to have the cancer come back.” Sounds great, right? That’s all a cancer patient wants to hear and do, get to that 5-year mark and beyond. But what happens after that? This is where it gets perilous, just as the sword of Damacles dangling over his head. Sure, great things lie ahead as we are on our “throne.” But there are anxieties and potential perils also. And just as if the sword were to suddenly fall, so too for the cancer survivor.
Before I go any further, I need to give credit to this comparison of cancer survivors to Damacles, to whom it belongs, my doctor. He was the first I ever heard give us patients an explanation what it feels like to be a cancer survivor.
During the first five years of survivorship, the anxieties are real. I still remember everything clearly. Symptoms pop up, similarly to when I was diagnosed. The worry every time a follow up appointment came up or worse, a dreaded scan, hence where the term “scanxiety” comes from, the worry that the scan will show that IT is back. If only it were that easy to remember, that some of the symptoms that we feel, we had long before cancer, and they were just something that happened, which doesn’t mean necessarily the cancer came back. And as for the scans, there is no reason to believe otherwise, not to believe we are still in remission, unless we are told otherwise. But that is what cancer does. It takes away our control, to be able to control and ease our thoughts. Once taken, it is hard to gain back. But I have good news, that control does come back. It will come back. This is where the comparison to Damacles fits. That sword, the fear of relapsing, hanging over our heads, by a single strand of hope, the sword of relapse does not come crashing down on us.
I promise you, this fear of relapse does get better as time gets on. In those first five years, your follow up appointments will get further apart, bolstering your confidence that your remission is getting stronger. Soon, less follow up scans are ordered, and appointments are sceduled even further apart, as far as just annual. It gets to a point soon enough, you no longer concern yourself with that sword hanging over your heads.
Then around that five-year mark, you have a crucial decision to make, and it is entirely up to you.
(photo courtesy of Live Science)
I am sure you have heard the expression, “bury your head in the sand” before. What happens when an ostrich does that? It cannot see, it ignores intentionally, it avoids, anything that is unpleasant or dangerous. And so, as a five-year cancer survivor, you can “bury your head,” and intenionally move on, force yourself to forget you had cancer (in all honesty, that part won’t ever happen), and never set foot in another doctor’s office, or…
You can take it from someone who was once in those shoes, that is not a wise option. It is not necessarily bad, I am just saying, continue to read. I want to stress, I am not a doctor. But I was that ostrich. And for years, as I tried to pull myself away from the world of cancer, it was a fellow survivor who kept trying to pull me back in, and I could not understand why. I was healthy, not like her, apparently dealing with health issues related to her treatments a long time before. This was not my situation. I was not like her. If I was the ostrich, she was the dolphin or meerkat, always looking out or on guard.
(photo courtesy of BBC Earth)
And then one day, that meerkat yanked the head of the ostrich out of the sand. It could no longer avoid the danger. Eighteen years from my last chemo treatment (and radiation), I was diagnosed with what is nicknamed a “widow maker” for obvious reasons, a fatal blockage that normally results in a fatal heart attack without immediate medical intervention. This ostrich, though not feeling great, but with its head in the sand, had developed a condition related to his treatments two decades earlier. And the problem was, no one was watching for it. And for the most part, no one knew to be watching for it, not even doctors. It is not an understatement, that as cancer survivors we are not expected to live beyond five years. Why do I say that? Where do you see any research on long term cancer survivors beyond five years, or maybe ten years now? You don’t. So back when I was treated, in 1988, and the decades before that, late developing side effects were not studied, because we were not expected to live long enough to develop any. But the truth is, we are living longer, and not just from Hodgkin’s Lymphoma, but many cancers. Which means many of us, not necessarily all of us, my develop issues related to our treatments. Science is slowly catching up. The Childrens Oncology Group has published and updates its “survivorship guidelines,” ( survivorshipguidelines.org ), which though its title is a bit misleading, information provided inside can actually apply to ALL cancer survivors as far as follow up recommendations and pertaining to which treatments. Most importantly, it is easy to follow.
“But Paul, you say you have no idea how many cancer survivors don’t have these issues, but everyone you know does have these issues.” Good point to which I reply, “people only seek out help when they need it.” It took eighteen years for my first late effect to become present, and it almost killed me. Whereas, had I kept seeing a doctor, in particular, my primary care doctor, equipped with the knowledge that these late side effects were a possibility, this condition could have been caught years before it was a threat to my life. And that is the difference. I am advocating for you, as a cancer survivor, to not bury your head in the sand, be the meerkat. No one knows if they will develop any late side effect or not, and only a doctor who knows what to watch for, will be able to diagnose it, in time, if it happens.
Anyhow, back to the sword of Damacles.
(picture is AI generated with ChatGPT)
Soon after my recovery from my emergency open heart surgery double bypass, I was encouraged to visit what is called a “survivorship clinic,” a program that specializes in recognizing, treating, and managing late side effects from cancer treatments. Now, if you noticed, there is a second picture, very similar to the top photo of the sword of Damacles. Only this second photo has multiple swords. Yep, you guessed it. In my case, I am dealing with multiple swords of Damacles, each suspended with that one strand of horse hair, perilously hanging over me. Which one(s) will drop first?
I can remember back in the day before everything going digital, my entire medical record being no more than a 1/3 of an inch thick. Even with my Hodgkin’s Lymphoma, my file was not that expansive. But following the first diagnosed late side effect being diagnosed, my medical file would not only expand inches in thickness, a second file would also need to be started to continue on.
I want to list these “swords” for you. I won’t go into the details of each as this post is long enough. But each diagnosis is related to my chemo, radition, or surgery for my Hodgkin’s history. The diagnosis is either in treatment, observation, or watch for further development. Some can be fixed (a temporary thing), some cannot. I will do them by “area”.
asplenic (no spleen), more susceptible to contagions (surgical effects – observed)
So now you get the idea of why I picture myself with so many swords over my head. My heart and my lungs are of concern, always, while everything else is on the backburner. It seems like a lot, and it is. But as I stress, not everyone gets these late effects, some only one or two, some have had to deal with more than I have. The problem, like I said many times before, there are so many survivors out there, likely dealing with health issues that just don’t make sense for their demographic, and it is late side effects that are the cause.
As overwhelming as all these seems, I actually manage everything quite easily, calmly, and rationally. I advocate for myself, armed with the knowledge necessary to take on insurance companies when they erroneously feel they are qualified to overrule my doctors. And finally, I know that I have not just great doctors taking care of me, but doctors who are knowledgeable in the care of long term cancer survivors and their late side effects. No, it does not make it any less scary to face these issues, but I know my doctors will do all that they can, and I am at peace with that.
The following is a short story that I wrote for another project earlier this year, a tribute to my daughters, my reason for being.
Maddie And Emmy
By Paul Edelman, Jr.
As a thirty-five-year survivor of Hodgkin’s Lymphoma, some would think that my greatest achievement is simply surviving. Living as a cancer survivor for thirty-five years is indeed a significant milestone, surpassing the well-known five-year mark told to cancer patients, when they can consider themselves “cured” of their cancer. However, I consider my greatest achievements to be my two daughters, Madison and Emmalie, the most important parts of my survivorship.
At the age of twenty-two, one of my main concerns was how cancer would impact fatherhood. Once I had completed both radiation and chemotherapy treatments, it was discovered that chemotherapy left me unable to have biological children, which devastated me. I had always dreamed of becoming a father and had to seek other ways to make that dream possible. Fertility treatments via artificial insemination and in vitro were unsuccessful. My only remaining hope was adoption to help me achieve my life’s greatest purpose, fatherhood.
Maddie and Emmy were born thirteen and fifteen years after the time when I first started my treatments. But it was halfway through my recovery survivorship, they witnessed my first health issue caused by late side effects from radiation and chemotherapy administered eighteen years earlier. In 2008, when they were five and three years old, I nearly died from a severe cardiac event, nicknamed for its lethality, a “widow maker” blockage to my heart. I will never forget the bone-chilling words that my cardiologist said to me, “it was not a question of ‘if’ you were going to die, but ‘when.’” I underwent an emergency double bypass to save my life. Three days later, my daughters were brought into the hospital, shocked to see my condition, yet relieved that I was going to be okay. I survived this first of many health complications caused by my treatments. The one constant has been my daughters, my inspiration through each health crisis faced during my survivorship.
Cancer survivors generally do not want their experience with cancer or any subsequent health issues to define them. What holds significant importance are moments like hearing “I love you Dad” from their children and witnessing their growth over the years.
Balancing my medical appointments and parent-teacher conferences was a challenge. My daughters remember good times with me from birthdays, holidays, amusement parks, and vacations. Despite all my health issues, I made sure I witnessed each of their high school graduations. Today, they are both in college, which seemed unimaginable to me thirty-five years ago.
My daughters are aware of my successful battle against cancer and openly discuss it. Because they were not there during my treatments, they did not witness all the medical challenges I faced at that time. However, as adults, I make sure they are fully informed and involved about my ongoing health concerns. Their support and presence provide me with motivation and purpose, inspiring me to look forward to each new day as a significant milestone and the many more events in their lives that I will get to witness.
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