Paul's Heart

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).

https://a.co/d/2JRZsZ3

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!

The Quiet Place

No, I am not talking about the horror movie. But I am referring to a different major emotion. Yesterday was a day that I had repeated so many times prior, though this time had a much bigger impact on me, the end of Summer visit with my daughter(s) (my older daughter had returned previously).

In the first half of their lives, we had never been apart from each other except for one time, and it was a “biggie,” my emergency heart surgery. Unfortunately, later on, divorce would create what my body’s health betrayal could not do, separate us. In the end, I would become a “non-custodial” parent which meant that my daughters would spend the majority percentage of time with their mother, which is not to be confused with “legal custody” which referred to everything else in regard to my daughters, which was “shared” equally at 50-50. I crafted my own custody arrangement following the disappointing attempt by my attorney. On paper, it was a cooperative agreement, with the intent to avoid conflict especially around holidays, all the while allowing me to have quality time with my daughters.

Because of technology, the absence between us and our visits, I was able to talk to and see them whenever I was able to get through to them, which was suffice in between our actual visits with each other. I can tell you, as an adult child of divorce, I wish my father would have had that option available to him. Technology would have helped him to get around the issues he had with my mother. But that is another story.

So all that was left to enjoy, were the visits, which could be long weekends, or extended visits during holiday or Summer breaks. With each of their visits, it was often like we were never apart. The routines of making meals, doing laundry, taking them places, and just having fun, were no different than when they were younger and when we all lived with each other. But, when it was time for them to go back home, upon me returning home, alone, is when it hit me.

(photo courtesy of statecollege.com)

Silence. Total and complete silence. No one to cook anything for. The televisions was not on. No one was asking me for anything. There was no one to see or look at. It was quiet. It was empty. Then it hit me, I was dealing with something I had not heard since my psychology classes in high school and college, “empty nest.” The analogy does not get any simpler than that, baby birds hatch, grow, and then fly away from the nest, leaving it empty. While my “birds” were not flying away forever after each of the custody visits, the feeling was the same.

Yesterday’s emotions felt differently however. I know they did. Sure, my “baby birds” would return to the nest for other visits, but now, as they enter their sophomore and junior years of college, I can see things are different, much different. And I could not be happier for them, because this is the moment that I wanted for them, to take the things that they learned from me, and forge their own paths, create their own futures, make their own lives. With their early years of college life finished, they now have experienced the one of the final things they needed to do, feel their independence, learning to not only make their own decisions, but take into consideration the rewards and the consequences of those decisions. Both have taken major opportunities already, bold decisions that I never imagined so soon, proving to me and to those that know my daughters, that my daughters have bright futures ahead of them.

But knowing how strong and independent my daughters are, did not make my return back to the house, alone, any easier. It was quiet. Dark. No activity. The television was not on. No one was in the kitchen enjoying a snack. The laundry basket was not filled. Empty, the “nest” was empty. However now, it felt like the empty birds nest. My daughters schedules this year, and from here on out, are labor intensive, socially demanding, and then, still to be taken into consideration, time off to still be split between their mother and I. They will also want to spend time with their friends, and possibly, no, likely, significant others of their own.

I think what makes it especially harder for me now, and anyone who knows me knows this about me, my daughters are my world. As I faced that heart surgery back in 2008, the fear I might never see them again, combined with my complicated health as a long term cancer survivor, and a tense ten-year custody arrangement which is now ended, I find it anti-climactic that all the motivation and goals are behind me, leaving me to focus solely on the health issues that may lay ahead of me. I need to fight this feeling, because there is still so much that I want to experience with my daughters, their college graduations, weddings if they choose, and their children if they are so blessed.

(photo courtesy of Wild Things Food)

Living in Florida, I see nature and the circle of living every day. In the back yard, I have seen three baby deer over the last four years. I get to watch everyone grow, hanging around their parents, and then one day, they are on their own. And then the next generation begins. I guess that is where I am at right now. My daughters are into the next phase of their life, and will do great things, for which I am so happy and hopeful for. I do not know if the offspring of wildlife run into their parents anymore once they leave, but I know, as a human, I am definitely planning on it. Our visits will be shorter in duration, and who knows if the time will be enough to fit everything in. I do know, it will never be enough, ever again.