36 Years. How Is This Possible?
The year is 1988. Popular music back then was “Faith” by George Michael, “Dirty Diana” by Michael Jackson, “The Flame” by Cheap Trick, and “Nothing’s Gonna Change My Love For You” by Glenn Medeiros (whose daughter loves trolling him on Tik Tok). Chuckie scared the crap out of us in “Child’s Play” in the movies. “Cheers” was the television show to watch. The price of gas was $.90 per gallon and a bottle of Coke was $.35 for a 16 ounce bottle. I remember everything from back then, clear as day.
But there was something even more memorable that occurred thirty-six years ago this week, I was diagnosed with Hodgkin’s Lymphoma (back then it was called Hodgkin’s Disease). The week before Thanksgiving and the start of the Christmas holiday season, and in less than a month, my birthday, I was faced in the fight of my life, cancer. I will not rattle off the entire history as it is not pertinent to this post. I have written enough about what happened and how I got through it on this blog, as well as publishing my book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor”, available on Amazon (see the link below).
Instead, I want to focus on the progress that I have been fortunate enough to have witnessed over the last four decades. Cancer patients often are led to believe that there is nothing to really look forward to much beyond a magical five-year mark of remission. It is almost as if, once that 5th year hits, and the cancer patient gets “discharged” by the oncologist, the rest of survivorship is unknown. And until recently, it was.
I almost feel like a time traveller, having travelled into the future from the years 1988-1990. I have seen the progress of diagnosing one of the more treatable forms of cancer, with a remission rate well into the 90% range. Back in 1988 (and beyond), biopsies and barbaric surgeries and tests (the staging laparotomy and the lymphangiogram – look them up to see what is no longer done) were used to diagnose and stage the Hodgkin’s. Today, a scan or a combination of scans are used, no longer requiring recovery time.
With such a high treatment success rate, it may not make sense to work on better and safer treatment methods, since the success is already there. But the truth is, the extreme high dose level of radiation that I was exposed to, and the extremely toxic chemotherapy drugs that were used on me, as well as most patients during that time, and previously, were known to be just as lethal as allowing the Hodgkin’s to just run its course. So, we were given the treatments, as what did we have to lose? Medicine would learn over the decades, that they could have the same success rate of remission, if not better, by using less radiation, and lower dosages of certain drugs, and omitting other drugs. The treatment plan used on me, is no obsolete. And the treatment plans today, as I said, are producing similar or better results of remission, just with less toxicity and lethality.
Major changes in support have also occurred over the decades. When I went through my Hodgkin’s, there was no Facebook or social media. I was not able to connect with anyone else who had gone through Hodgkin’s. I had a therapist I was able to talk to, but that was it. Today, there is a world wide web, connecting people with Hodgkin’s all over the world, talking about topics not just Hodgkin’s directly, but all of the sub issues that arise because of the cancer, such as financial support, fertility, and employment. In spite of family and friend support, please do not take this the wrong way, it is often not enough, because there is no way for family and friends to truly understand what we are experiencing. Today, there is no reason for a cancer patient to feel alone.
And perhaps the biggest progress, and maybe even the most important progress, is since Hodgkin’s survivors are living longer (I am in remission 34 years), some into the 40th and 50th years even, medicine has learned that for some of us, survivorship has come at a price due to the extreme treatments that we underwent. Again, I have documented often on this blog and in my book, the various late side effects that I developed as a result of my treatments. And as I always stress, NOT EVERYONE DEVELOPS THESE ISSUES! But because there is no way to know who will and who will not develop late side effects, it means that a cancer patient’s health needs to be watched, even after hitting the five-year mark. An oncologist should remind a cancer patient to continue seeing their primary care giver at least annually, using a guideline established by the oncologist and the treatments undergone, to figure the surveillence needed and how often, first establishing a base line measure for body systems such as cardiac and pulmonary. Information on potential side effects can be found on the Children’s Oncology Group page at http://www.survivorshipguidelines.org/ and also at Hodgkin’s International at https://www.hodgkinsinternational.com/ . I am not sure what the statistics are, with how many of us are impacted by late effects, as medicine has never really studied survivorship in this detail. Many may never develop any issues. Some may never realize issues they have are related to their survivorship. The point is, progress, driven by my fellow survivors are doing what we can to get the word out, to take care, and follow up for these potential issues as I deal with.
These thirty-six years have not all been about cancer. Sure, as an advocate, I made an active choice to help and support patients and survivors, albeit on a micro level, one person at a time with issues such as information, support, comfort, and direction. But I have gotten to experience so much in my life, not only not having anything to do with cancer, but in spite of having had cancer. My life has not gone the path that it was headed back in 1988, and there is no way of knowing how it would be today had I not had Hodgkin’s. I can tell you, my life has gone the way that it was meant to. It has not been smooth by any means. I had a great career. Took two swings at marriage (both ended in divorce). I am blessed with the most wonderful daughters a father could ever ask for. My daughters missed my Hodgkin’s days, but have been there through all of my late side effect issues and are the main motivating reasons that I am still here today. I have so many memories over these thirty-six years, again, some not so good, but others… wow. I have been all over the United States and twice travelled to China. I had the best dog for nearly fourteen years, who also played a key role in my healing.
The only thing about survivorship that is scary, is not knowing how much longer. As I said, I know many survivors well into their 4th and 5th decades. I know many “newer” survivors having just reached remission or some hitting their early milestones, one year, five years, and ten years. The hardest thing about my survivorship, are the many survivors that I have had the blessing of meeting, some are no longer here today. I think of them as often as I do the other survivors that are still with me. No fault of their own, their bodies just could no longer take the trauma that was done to their bodies, whether undergoing corrective surgeries, or perhaps a spontaneous event, left to be handled by doctors without the knowledge of how to handle our unique medical histories and exposures.
As I mentioned, I have a birthday during this season, next month. And I expect to celebrate that birthday, with my daughters for the first time in eleven years (because of the divorce), and I hope to have many more. Longevity does not bode well on the paternal side of my family, my father passing at the age of 70. The late effects and their impacts on my body may effect my longevity. We do not know. But I do not take any day for granted. I go to bed each night, with plans for the next day. And when I wake up, I plan on taking care of everything I set out to do the night before. And if for some reason, it does not happen, then there is nothing I could have done about it.
But my plan is to reach not only my 35th year in remission milestone, but the 40th, and perhaps the 50th. And if I am able to do that, not only will have more progress to share in the world of Hodgkin’s Lymphoma, but I will have many more experiences to share of my life as a father, and perhaps grandfather.
Here’s to 36 years!
Paul's Heart 