Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “Hodgkin’s Disease”

In Between Milestones – 35 Years, Still A Big Deal


When celebrating anniversaries, we make a big deal out of major anniversaries, such as 1st, 5th, 25th, and of course, 50th. In the world of cancer survivorship, many of my fellow survivors and I do the same thing with our anniversaries, though several of us recognize our anniversaries differently. Some will recognize the day that they are told they are in remission, and others, including myself, celebrate the day that I was done with my treatments. The photo above, was taken one year after I was done with my treatment, which means the photo was taken thirty-four years ago. That is right, today I am 35 years in remission!

I think I might actually even look younger today than I did back then.

In November of 1988, I was diagnosed with Hodgkin’s Lymphoma, back then it was called Hodgkin’s Disease. My cancer was staged at 3B, almost as bad as one can have it. I underwent some of the most toxic treatments of chemotherapy and radiation therapy to be able to hear the words “you are in remission.” And though I would get to hear “remission” half-way through my treatments, my doctor wanted me to finish the course, the entire plan of treatments, taking my last dose of medicine on March 3, 1990. That was 35 years ago!

Up to, and including the time I was diagnosed, all I ever knew about cancer, was that people died from it. There was no internet for me in 1988, so all I had to hear about cancer, came from the television news or newspapers, that people died of cancer. You never heard of people surviving cancer. And it was not good enough as a patient to hear about something called a “5-year survival rate,” in spite of this survival rate for Hodgkin’s being well into the mid-80 percentage, at the age of 23 years old, I wanted to live much longer than five years. I believed that I could, especially if the cancer was gone, but I had never heard of anyone surviving long term. At the time, my grandmother was in remission for breast cancer two years, my only reference to anyone surviving cancer. Again, no access to the internet, I had no idea of the inspiration that was out there, people living after cancer, 30, 40, 50 years and more.

But that time would come soon enough, buying my first computer, getting an AOL account, and finding a “listserve” of other Hodgkin’s survivors, some still in treatment, some finished with treatment, and here they were, some who had survived decades. I saw that long term survivorship from cancer could be mine.

There were other things that I learned as time went on, something that even science and medicine were not aware of or prepared for, if we were going to live longer than those five years, that meant that there would be a possibility that we could develop late side effects from the treatments, though what side effects were not known. This was not studied. But this community of survivors I discovered, were sharing this knowledge among each other, and where help with these effects, and doctors who have knowledge of late side effects, could be found. This would come in handy myself, because over 17 years after I finished treatments, the first late effect from my treatments was discovered, in the form of a “widow maker” blockage with my heart, caused by the high dose of radiation that I received. This would be the beginning of many issues that would be discovered over the next 18 years for me. But I want to stress two things, first, not everyone who goes through treatments develops these side effects, and second, as bad as some of these issues got, the proper intervention has given me so many more years, and I have been blessed with so many opportunities and memories.

The fascinating thing is, over 35 years, I have been witness to progress, actually getting to see it, how Hodgkin’s get diagnosed, no more destructive and invasive staging procedures. The toxic and extreme treatments that I and many others were exposed to back in the 1960’s, the 1970’s, 1980’s, and 1990’s, with medicine’s knowledge, those very treatments had a good possibility of killing us, are no longer being used. I can tell you that treatments today are just as effective, and though still not pleasant, are more tolerable and safer. I have gotten to witness this progress.

The best part of my 35 years of survivorship, has been having the opportunity of being Dad to the best daughters a Dad could ever hope for. They were not around for my battle with Hodgkin’s Lymphoma, but from the first appearance of a late side effect, they have been my motivation and inspiration to not give up. There has been so much that I have gotten to experience with my daughters, now both in college, I really did not ever think I would see this day, yet here I am.

I cannot recognize today however, without recognizing others in my Hodgkin’s family over these thirty-five years. First, all of my new Hodgkin’s friends currently going through treatment yet. I hope that whether you hear of me through “Paul’s Heart”, or have read my book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor,” follow me on TikTok, YouTube, Facebook, or Instagram, I hope you being able to follow someone who has been a survivor for four decades to be inspiring to you, that you too will have a long and fruitful life ahead of you.

Then there are all of the survivors that have come into my life over all of these years. I have known many of you nearly my entire survivorship. And even more inspiring to me, is that so many of you have survived even longer than I have, forty and fifty years or more! I do not take any day that I have for granted, but seeing how far you have come, gives me hope that I can see that longevity also.

If there is one thing that remains so cruel, sadly, there are some that are not here with me to recognize this day. Some, their bodies just no longer able to take the trauma of decades of late side effects, and even one, barely getting to enjoy a few months out of treatments. I miss you all to this day. I remember you all and the joy you shared with me while we were able to survive together. I wish there was a rhyme or reason, why we do not have a 100% cure rate when we are so close right now! Though progress has been made in safer and more effective treatments, it is not good enough.

The counter on this page now is set for March 3, 2030, which will mark 40 years as a cancer survivor. That is a milestone I want to reach, and likely, with my daughters, hopefully not the only other milestones I get to witness.

My Cancer Survivor Story


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.

Bravery


Bravery is defined in Merriam-Webster as courage.

I decided to look this up today.  A co-worker was having a conversation with me, coming to find out everything that I had been going through in just the last several weeks.  And his comment to me was, “You’re really brave.”  And I looked at him like I was almost hoping for a hint of sarcasm or even some foolery.  But for once, he meant it.  And then he repeated it, “You are brave.”

The first time I heard it, I was uneasy.  I was hoping the conversation would end, but when he said it the second time, I knew that I had to deal with it.

In my life, I am hard pressed to find even one instance in my life where I could be defined as brave.  I have never fought in any armed service.  I have never broke up an attempted bank robbery.

But when people find out that I have beaten cancer, had open heart surgery, two cases of pneumonia (one with sepsis and the other double pneumonia), kidney stones, all kinds of late issues from my treatments, I get, “You are brave.”

When I think of “bravery”, I think of men and women who run into a burning building, police officers who put themselves in harm’s way every day, an airline pilot flying a human missile loaded with hundreds of lives, a teacher shielding her students from a lunatic’s bullets.

No, I am not brave at all.  I simply did what I had to do.  I have two beautiful daughters who I know love me so much, it would devastate them to lose me.  I have no choice but endure if my body and mind are capable of doing so.  In the second half of my life, I have met so many people who have faced relapses of their cancer, multiple cancers, those who struggle with their survivorship from the treatments that saved their lives, and sadly, those who lost their battles.

I have always said that I would not go through anymore treatments if my Hodgkin’s Disease came back, that is, until my daughters came along.  One of my dearest friends has faced nearly 50 surgeries all having to do with her surviving her cancer treatments, this along with a battle with a secondary cancer.  With so many close calls, not just near death, or in some cases, flat lines, she continues to trudge on to this day, not only a proud mother, but the happiest grandmother, something that she never thought she would ever see.

I do not know how she would react if I told her that she was brave.  I know on occasions when I have talked with her on the telephone, I have told her that I was speechless for words to how I felt with her continued struggles and survival.  It would be easy for her to give up I think.  She has been through so much.  But the fact is, she has not given up.  It is with her example that I can never make that decision either.

And so, I am watched periodically, whether month to month, quarterly, or annually.  There are things that have been identified and can be dealt with.  I go to my appointments not afraid, but confident in my caregivers that things will be dealt with sooner than later.  That is not bravery, that is trust.  As for the all-of-a-sudden stuff like the pneumonias, the cardiac issue, some kidney activity… a little luck does not hurt either.

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