Paul's Heart

When The Quiet Part Gets Said Out Loud

A message from me… I actually wrote this post a couple of weeks ago. But events kept happening, making me feel it would be inappropriate to publish this post at that particular moment. As it turns out, the timing could not be any more relevant to understand the reality of a long term Hodgkin’s Lymphoma survivor. As this is being posted, my thoughts are with many survivors who are struggling with their survivorship as their bodies are forced to endure even more trauma. One survivor has spent more than 200 days between hospitals and long term care facilities recovering from his heart surgery. One survivor has spent more than two months in the ICU recovering from his heart surgery. Another survivor is heading into her third week recovering from her heart surgery, still hospitalized. And just yesterday, a fellow survivor was rushed to the hospital, in critical condition, a situation, just like the other three survivors, all created by the treatments for Hodgkin’s Lymphoma that we were exposed to decades ago. This post is about our reality. This post is about not being all Pollyannic with denials of “you don’t know that for sure,” or blanket “you’ll be fine if you just don’t think about it.”

I always say that if my words reach even just one person, then my efforts have been worth it. So, I hope you read this post, and come away with understanding, just how some of us long term survivors of Hodgkin’s Lymphoma, struggle with, and deal with, what we know, and many accept. We have to. Otherwise there is so much we would miss.

There is an expression, “saying the quiet part out loud,” used by Mr. Burns in an episode of the Simpsons (“A Star Is Burns”). This is a reference to revealing one’s thoughts currently in the head, that should be kept there, instead, spoken for anyone within ear shot to hear. You hear the phrase used quite often today, especially in politics, when a particular political party representative, in discussing policy, accidently reveals their true intentions, admitting either their knowledge or attitudes toward a particular agenda.

But in the world of long term cancer survivorship, “saying the quiet part out loud” has a different meaning. It is something that rarely if ever gets talked about, recognizing our increased mortality. I want to caution you, while the subject infers something quite uncomfortable, something normally kept quiet, unsaid, as a recent event showed me, it really is not all that bad. I want to stress, this has nothing do with manifesting anything to happen, or shouldering any bad juju.

I was participating in a Zoom session, with the guest speaker having been a fellow long term survivor, offering her perspective of survivorship. There are so many of us living decades after completing our treatments, and I know many of them over thirty of my thirty-three years of survivorship. We all have different experiences. In this case, the guest speaker said something, I can say I at least think of every now and then, though I do not recall ever hearing it out loud. As I heard it, I felt a powerful wave of relief come over me. For the first time, I knew someone felt as I did, that my feelings were normal. I had just never heard it before from someone else.

I am paraphrasing, “I know that my life expectancy is going to be less than I hoped, and I am okay with that.” The speaker was making reference to the fact, just as I an other long term survivors of Hodgkin’s Lymphoma, that she had developed late side effects from the treatments that gave her remission. The body can only handle so much trauma. She, others, and myself, have gone through similar and different experiences, many severe, many life threatening. And each issue, the risks of complications and mortality increase.

Anyone who has ever heard me talk about this, usually responds with the typical, “you don’t know that” or “you’re fine, you’re going to live a long life.” Exposing myself, I risk being ridiculed with, “don’t be a negative ‘Nelly'”. The worst comment you can make to me, “you’re living your life in fear, how awful.”

To be clear, I am not talking about dying, or actively dying. You have likely heard at some point in your life, “smoking cuts so many years off of your life,” or “too much cholesterol can result in less years,” etc. No one every really questions statements like that because of where that information and support comes from. But when you receive forty times the lifetime maximum exposure of radiation, or the most toxic of chemotherapy drugs (especially a drug that was used to kill thousands of people by Sadaam Hussein during the Iraq War), it only makes sense, that these treatments will have an impact on longevity.

In my 33 years of survival, I have met so many fellow survivors, some in person, and some through the digital world. Now I should preface the rest of this post. I honestly do not know many long term survivors of Hodgkin’s who are not dealing with late developing side effects. And there are two potential explanations. The first, people only reach out for help or answers, when something is wrong. If you do not know you have these issues, then you have no reason to look for others like myself. The second possibility, a survivor might actually be someone who has not developed any late side effects, or at least associated the unusual and unexplainable ailment they might be facing. And this is an important acknowledgement in my post. Here is why.

Twenty or so years ago, when I first came on to social media, the majority of my time spent on line, pertained to helping patients who had been going currently going through treatments for Hodgkin’s, not so much long term survivors. A reminder, I myself, did not know I had been developing late side effects yet at that time. Following the first crisis event of my survivorship, my emergency open heart surgery in 2008, I turned my attention to long term survivorship care and knowledge, while sharing time with current patients.

I had remained in communication with many patients who had “moved on” with their lives, against my advice, after hitting the “magic 5 year mark,” and saying good-bye to the cancer world forever. As years passed, it became more apparent to me, just how prominent these issues really were in survivorship. But for those who chose to move on, I kept my conflicted emotions to myself as those survivors shared their “new life” experiences, many exploring places that they, or I, had ever seen.

Then, I would see a post come through for a page, not from the survivor, but a family member. Someone had died. They were out doing one of their nature hikes, as they had done often before, and had a heart attack. In the example I am setting, which really happened, he was only in his 30’s, younger than me when I had my first heart surgery. But he was fit, active, and too young to die. There was never an answer as to what may have contributed to his passing, but those of us who have been in this survivor world, know the likely contribution, was the high and toxic doses of cancer treatments, unmonitored.

Another situation that increases our risks of long term survival, are spontaneous events, such as a car accident, or dare I say it, a pandemic. Those of us exposed to such toxicities, need to realize our bodies have been traumatized, leaving ourselves as able to fight and recover from any particular situation, even as simple as a stumble and fall, the way someone who had not been exposed to cancer treatments. One survivor I knew, had been in a car accident, suffered a head injury, with bleeding. She had actually recovered enough to be ordered released from the hospital, only to suffer something else that had occurred during the recovery, and died.

Then of course, there are the procedures after procedures that many of us endure. If we survive long enough after a particular correction (such as a heart valve replacement), to need it done again, the risks become even more complicated, making recovery more difficult. What would normally be a few days in the hospital recovering, could end up months between multiple facilities healing, hopefully. It is hard going through any surgery for a long term survivor once, let alone again, and again. And if we are dealing with doctors who are unfamiliar with our situations, the risks skyrocket.

Finally, there comes a time for many of my fellow survivors, their bodies just simply have enough. The trauma to the bodies over the years, just too much to handle anymore.

Many of my fellow survivors share a “memorial” page, where we have photos of those long term survivors who have come into our lives, and passed. Their passings could have been due to complications of procedures, spontaneous non-cancer related occurrences, or simply, their bodies just had enough. It is a beautiful page, with wonderful photos of a special time, showing how in spite of all that they were going through, they enjoyed every day that they could.

I know this post has been hard to read. But this is the life my fellow cancer survivors and I live. And with that, comes the acceptance part, that we know that we may not live as long as we once thought. We do what we can to take care of our issues that come up, and we hope for the best. We do not spend our days, waiting for the end. I have things that I still want to experience in life, mostly with my two young daughters. I do not put the pressure of long term goals on myself, but I go to bed each night, with the intention that I will have tomorrow, not worried that I might not see tomorrow, the cliche “one day at a time.”

It is the acceptance that I have found, that allows me to not live my life in fear. And that is why, it is actually hurtful, when I get told “you don’t know you will die sooner” or the denial “oh, you’re fine.” Though clearly I wish things were different, I am actually in a good place, comfortable with my fate, and what I have been able to experience in over 33 years, that had I not opted to go through the treatments, I definitely would not be writing these posts today. But that is why, it is oh so important, that you accept how I feel, not try to talk me out of. Do not feel sad or worried for me, because that is not my intention for writing this post. But I do want you there, for all that I still am able to experience in life.