Up until 1988, the only thing I knew about cancer personally, was a fundraiser that I participated in elementary school, sponsored by the American Cancer Society, called “Send A Mouse To College.” This of course was a reference to the supporting of medical research and cancer, which used mice, among other species, to find a cure for a disease, usually never talked about publicly, and almost always fatal.
My personal timeline went as follows. My grandmother would be diagnosed with breast cancer in 1986. That was all that was ever talked about it. Then in the fall of 1988, I was diagnosed with Hodgkin’s Disease, now called Hodgkin’s Lymphoma. Over the decades, cancer would knock on the door of my family several times (grandmother a second time, my grandfather, my father), and I would learn of others who had passed from cancer I was not even aware of, because it was not talked about (my paternal grandmother). That was a problem, and for many, lack of communication about cancer remains a problem.
The official recognition of World Cancer Day, is not a celebration, but rather a day of awareness, begun in 2000 in Paris, France, at the World Summit Against Cancer led by the Union For International Cancer Control. In 2008, February 4th was declared World Cancer Day, not to celebrate cancer, but to raise awareness of cancer, encourage prevention, provide information on diagnosing and treating cancer, and to make sure that everyone has access to the same quality health care against cancer, regardless of race, gender, or ethnicity.
The truth is, we should not need a special day to recognize the importance of dealing with cancer. But here it is, February 4th, World Cancer Day.
Since 1988, cancer has been more prevalent in my life. In fact, it seemed soon after my battle ended, more people around me, found themselves battling cancer. I knew this, because they had come to me for support. People were talking about cancer, at least that I was aware of, for the first time.
Upon completing my treatments, I made the decision to “give back” to those who saved my life, by reaching out to, and advocating for, other cancer patients and survivors, something that I still do to this day through Paul’s Heart. With the advances in technology, I am able to reach around the world with my advocacy and knowledge of the newer methods of diagnosis and treatments available today, compared to what I went through thirty-five years ago.
And for me, World Cancer Day is literally about the world. I have been blessed over these decades to meet other cancer patients and survivors, not just locally, not just around the United States, but literally around the world from countries such as Spain, Canada, Switzerland, England, Scotland, South Africa, and more. Together, we all do our part to inform and support those around us, and each other, in the battles against cancer.
One of the worst things you can ever say to someone who has ever been through any kind of trauma, whether it be illness, violence, disaster, or accident, is to tell someone who struggles with their memory and emotions of that trauma, they should just “get over it.”
As I wrote “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor,” (found via the link above this paragraph) I recalled many of the events that I had gone through over the last three and a half decades, whether in regard to my health or my personal life. I consider myself a stoic person, very rarely showing or displaying any emotion, and as I wrote the book, I would say my feelings were consistent. I was able to focus on all of the details, and really try to keep the book to just that, details and experiences.
However, I have found, that when I speak of certain topics within the book, I can feel my emotions churn. But still, I manage to keep a grip. Whether giving cancer survivor speeches, or doing book promotions, I do fairly well keeping everything in check.
So why was it this morning, as I was having a private conversation, pertaining to one of the more extreme health crisis I went through, actually one of the top two of the many, I suddenly found myself, losing control of my emotions. So much so, as I fought to suppress the feelings, it was pointed out, “I’ve never seen you get this way before.”
We were having a conversation about my emergency heart bypass. I have talked about it dozens of times, in many different situations, and I have never reacted this way. Even with years of therapy under my belt, this had never happened before, well, other than the “television incident” (discussed in the book, Chapter 55 – A New Start). I was discussing the final moments, prior to the surgery, as I just laid there on the hard operating table, with nurses and techs all buzzing around me, preparing me, preparing all of the equipment, machines and instruments, and hearing bits and pieces of conversations happening all around me.
“He’s so young,” a nurse told another. Without even a thought, I blurted out, “I am young. I’m only 42 years old. I don’t want to die. I have two little girls I love so much and I don’t want to die.”
Returning to my conversation today, I needed to stop for a moment with the conversation. The person I was talking to said to me, “I’ve never seen you get like this before.” The truth is, I rarely, if ever, let anyone see me this way. Yet, a situation I have talked about before, many times, provoked this response from me today. But why? Why today, nearly sixteen years since that surgery?
You can take any particular tragic or critical crisis, and the end hope is always the same, to one day move on from it, to forget it ever happened. I can tell you personally, this is an attitude of many cancer patients and their families, friends, and loved ones, to put it all behind. This is where the “just get over it” begins its roots of emotional suppression. By forgetting it, or “getting over it,” we leave out the most important part of our recovery, from anything, processing what we have gone through. We do this either on purpose or by accident, perhaps even subconsciously. The event gets locked away, seemingly forgotten, until one day, it is not. And you have a day like I had today. And clearly, issues like this, not only impact the individual, but also those around them.
The key to getting through episodes like I experienced today, is to recognize them, and accept that issues still exist, and STILL need to be processed. Sure, the physical scars may be healed. But not all scars can be seen. And this is why I cannot “just get it over it,” any of it until I learn to process each individual event. And that takes time. As John Lennon sang in “Beautiful Boy,” “life is what happens when you are busy making plans,” originally attributed to writer Allen Saunders.
I would like to take an opportunity to explain, who it is exactly, that I feel will enjoy, appreciate, and be glad that they read my book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor.” As I have had several discussions with those who have already read my book, I realized that this book is reaching so many in different expectations, and in one particular situation, something I had not even thought about.
First, let me get the obligatory plug out of the way. The book can be purchased on Amazon in either paperback ($15) or via E-book ($9.99).
The General Reader
This is a reader who is looking for something inspirational to read. I am not famous, not a professional athlete or actor or famous musician. I am just one of over 330 million people with a story to tell. I had cancer. I was treated for cancer. I survived cancer. I tell the story of this journey in a way that is not “sciency”, and you do not have had to have had cancer to understand the story. It was not an easy journey for me. But it is one that I hope provides inspiration and hope for anyone who reads the book.
Family Of Someone With Cancer
After reading my book, you will understand why this is a group that should read the book, at least in my situation. I was reclusive during my battle, even from my own parents. Other than the announcement of the diagnosis, that was all anyone in my family had been told until I was declared in remission. Whether or not it was fair to them, right or wrong on my part, depends on the person facing the cancer. To say my mother was shocked by what she read I had been through, is an understatement.
The Caregiver
No one usually comes into a cancer fight as a patient with any experience or training. The same goes for the patient’s caregiver. The benefit of my book to caregivers, again besides the inspirational journey, is understanding. One of the most difficult things for a caregiver to understand and prepare for, are the emotions and the multitudes of thoughts that can go through the mind of their loved one as they battle cancer. I do not hold back with my frustrations, my fears, and my joys, giving a caregiver who reads my book, some understanding of what can be expected.
The Cancer Patient
If there is one thing that has not changed in over 35 years, it is the whirlwind of uncertainty and fear, that someone just diagnosed with cancer experiences. There is the mental battle of the stigma and stereotypes of cancer patients and chemotherapy that stir up the most fear. In “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor,” I give a glimpse of what it was like four decades ago to undergo diagnostic methods and treatments far worse than they can imagine, and express the hope with the progress and newer methods available today, producing better and safer results than when I was treated. As I have discussions with current patients, and I hear them express their fears and doubts, I remind them what I went through, including the fears and doubts. And then I encourage them, just as I got through it, so can they.
Survivors Of Cancer
Though clearly, this is the crux of what my book is about, surviving cancer. I soon found out, especially as survivors purchased my book, there were two different sub-groups of survivors, and even a sub-group of that one sub-group. Of course, I want those who are in treatment or having just finished treatments, to read my book, and see the life that is ahead of them, decade after decade of life.
But there are also “long term survivors”, also like me, decades out from treatments. Here is where I discovered something I had not thought about, of course unintentional, but also, because I lacked the personal experience. When I mention the diagnostic methods I went through for diagnosis and staging, these survivors could relate personally as they had gone through many of these things as well. And many of their paths followed similar trajectories to mine. So, for many of my fellow survivors, my book was about recognizing, they are not alone, especially emotionally with the things we have struggled with.
But Hodgkin’s Lymphoma, is referred to as a “pediatric” cancer. Even though I was 22-years old when I was diagnosed, I get described as having had a pediatric cancer. I believe there is a threshold somewhere into the thirties, that a person can be described that way when diagnosed. And of course, there are plenty in their 40’s, 50’s, 60’s, and 70’s diagnosed with Hodgkin’s Lymphoma.
There is this other group of survivors that I alluded to, and many of those survivors have more years in survivorship than I do, 40 and 50 years, one even 60 years. And for many of those, they are younger in age than me, and that of course means that they were diagnosed at a much younger age. These were true children by any definition of age as young as five years old to teenage. In fact, I wrote about one patient, Jennifer (see “Jennifer’s Story” on this blog https://pedelmanjr.com/jennifers-story/ ).
One thing I did not realize as I wrote this book, is that as some of those fellow survivors read this book, their memories and recollections of what they went through, actually triggered and revisited their trauma. Again, I was 22-years old, an adult, knowing full well what was happening to me. I saw two counselors who gave me the emotional support I needed to endure.
But as it turned out, these “younger” survivors had no emotional support. There were likely no explanations to them of what was happening and why? Why would their parents let these doctors do such horrible stuff to them? Why wouldn’t anyone help them? There likely were no counselors offered for them to talk to. And then, if you have followed my blog, later on in life, to develop late side effects from the treatments that put the cancer in remission, destroying the quality of life they thought they once had. Sadly, some of these survivors developed so much resentment towards their parents for having done this to them.
The point is, “Paul’s Heart” is very cathartic for me to write, whether in blog form or book. My diagnosis, treatment for, and survival of Hodgkin’s Lymphoma has been much more traumatic for me than I had let myself believe. I am actually stunned reading what I wrote, knowing it and having experienced it. But I have carried these feelings the rest of my life, never to be faced again, until now.
Of course I would never intentionally cause harm to my “younger” long term survivors. But if they are able to read my book, I would hope that the book would inspire them to learn to release the trauma that they have likely held on to their whole life as well.
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
Cancer Survivorship
Radiation Exposure
Information about radiation exposure, limits, and risks
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
Paul's Heart 