Paul's Heart

15 Years…This Crept Up On Me Real Quick

If my story ended when I mention that I am a 33-year survivor of cancer, Hodgkin’s Lymphoma, that would be enough of a conversation about me, an impressive fact by itself, to live in my fourth decade after cancer. When I started that journey, I knew of only one other cancer survivor who had beaten it, albeit only by a few years before me, my grandmother.

But if you have followed “Paul’s Heart” long enough, you know I am about anniversaries and milestones. And boy do I have a lot of them.

If a conversation with me only talked about the fact that I had to have open heart surgery fifteen years ago, no mention of anything else, again, it would probably involve amazement, and shock at the age when it happened, forty-two years old. Unlike my cancer survivorship, I did not know anyone personally who had gone through this surgery.

This time of year hits me very differently than all of the others because this anniversary is what I call a “dark” anniversary. And this year, it seems to be hitting me a lot harder than I am prepared for.

Once a patient reaches remission, and in my case, as long as I have, your really do not expect to hear anything more about “cancer,” or at least the cancer originally dealt with. In my case, so far, that has been my situation. Sadly, many of my fellow long term Hodgkin’s survivors have been diagnosed with a secondary cancer, or even multiple cancers. In full disclosure, and I know I have shared this info before, back when I was treated, I was warned of the potential for a secondary cancer or maybe some “blip” pertaining to my heart. But the truth was, there were no long term studies done of the potential late side effects that could and would develop. Medicine would soon learn, through us survivors, there was a lot more to long term survivors of cancer, than just reaching remission.

As to how I ended up writing this post, please refer to the page “CABBAGE – Not Just A Green Leafy Vegetable,” which tells the beginning of my journey as a heart patient. It was at that time, that I began to learn, there was a lot more things that needed to be followed up on in my survivorship. And honestly, it answered a lot of questions as to why I felt certain ways, and not always good. But because of my age and conditioning, my complaints and symptoms just did not match my demographic. Again, the plethora of issues I have faced are well documented in “Paul’s Heart.” To be clear, the situations between all of us long term survivors are different, though we do share some similarities.

Fifteen years ago, I was told I was about to die. Shockingly, this would not be the first time I would hear this sentence, and it does not get easier hearing it again and again. My “widow maker” blockage, was caught on a hunch, only because I got tired of the way I felt over the prior four months of symptoms and ignored (I am not a complainer), but because my primary care doctor interceded on my behalf, getting me an appointment to have a particular test done sooner than if I had tried to schedule it on my own, not normally done on someone my age at the time. If either of us had not done our part, I was going to die. As my cardiologist put it, “not a question of if, but when.” So, as I call it, a “dark” anniversary, one of seven I have, this is one of my top three.

The picture shown, occurred a week later, upon arrival home from the hospital. My daughters, aged three and five at the time, were glad to have me home. Behind my younger daughter’s head, a heart-shaped pillow that I used normally to stabilize my chest area, if I had to sneeze or cough. But it also served as a barrier for comfort for my daughters to give me their healing love.

The procedure itself, while quite common, bypass surgery, is a bit more complicated when it comes to patients who have been exposed to radiation and chemotherapies. There is all kinds of internal issues such as scarring, calcifications, hardenings and more, that complicate not just the actual procedure, but the recovery and healing process as well. A long term survivor recovering from this surgery, is actually more difficult than the recovery from the cancer and treatments it was caused by.

It is hard for me to believe it has been fifteen years already. It is not a case of “time flying when you are having fun.” Time has definitely flown though, for sure. With the discovery of my heart blockage, and its cause, soon would reveal many other issues that would require interventions, including two more heart surgeries, and a surgery on one of my carotids, all related to my treatment past. Those surgeries all occurred in the last four years. On top of that, during these fifteen years, I lost my father to lung cancer, went through divorce, lost my job and the health coverage that covered me being able to see the doctors that I needed to be seen by. And this was all without the concerns for what a Covid infection had the potential to do to me if infected.

These fifteen years have definitely flown by and the reality is this. The surgeries that I have gone through are not permanent, they all have limited lifetime warranties. How long? It really depends on who you ask, but can range between 10 to 15 years. Having the surgery done, you need to be followed up, at least annually. And in cases like mine, it is not just for the patency of the bypass, but because the effects from my treatments also impact how long these repairs last. The other three repairs I had done, also have their time limits.

Now, if I did not have this Hodgkin’s treatment history, I would likely become a candidate for what actually needs to be done, a heart transplant. Just as my fellow survivors and I have waited for technology and medicine to catch up with the procedures we are now eligible for, the heart transplant is the one thing, none of us seem eligible for because of all the potential complications. I know of only one who had the closest of chances, only to pass away following complications during pre-op procedures.

At last look, my bypass is still holding up, well beyond the 10 year mark, but testing shows as of last year, it will loom in my future again. I do what I can to slow the process down from simple walks to limiting stress (something not easy to do during a divorce).

There is one factor in my survivorship, all-encompassing that drives me, and I believe protects me. And they are pictured with me.

I went from dying to getting to experience so much time with my daughters, that I otherwise would not have had. They are my world, my driving force, and there is just so much I want to experience with them yet. I do not have a say with my body and what it does, but I do know that my will and fight is as strong as it has ever been, definitely not to be underestimated. I have reached so many milestones since April of 2008. Their biggest events in life are yet to come, and I want to witness them.

My daughters were not around when I went through my cancer battle. And they were too young when I had my bypass. But they are both at the age now, where they understand my health is not the best and the issues I deal with are quite serious. They both have friends that have lost a parent from a health issue. I know many families of survivors who have endured losses at the passing of their parent from one of our issues. A parent always does what they can to protect their children from that kind of hurt, and I give all I can to never let my daughters feel that loss.

I know of other Hodgkin’s survivors who are in the 40’s and 50’s of years of survivorship. I hope to be included in those rare groups some day. But for now, I take my survivorship, just as I did my original cancer fight, one day at a time. I know my potential fate, but do not live in fear of it. I live in spite of it. I go to bed each night, with the plans of what I have in store for the next day. And that is how I have lived these last fifteen years, and hope to make another fifteen.

An Organization That Actually Makes An Impact

Over the last couple of weeks, I have shared two posts pertaining to cancer survivorship. One dealt with the acceptance of a shortened mortality. The other dealt with the realization that to survive cancer, and live after cancer, the survivor must learn to advocate for themselves. Well, here comes the third and final post in this series. And I want to stress, though the post clearly focuses on Hodgkin’s Lymphoma, as more and more cancers find cures, which will also mean new and different long term survivors, the strategies necessary to navigate the next several decades, are the same. So please, read on.

Several years ago, in 2016, an organization was created, to help Hodgkin’s patients survive, and live after cancer. Unlike the major cancer organizations, Hodgkin’s International focuses primarily on the Hodgkin’s Lymphoma community. However, like I said, in much of the information and guidance provided, it can be beneficial to other cancers as well. But for being one of the most successfully treated cancers, it hardly gets any attention or focus, and those who survive it, get even less. Which is where Hodgkin’s International comes in.

This meme is so powerful. Yes, it is from Michael J. Fox, who is courageously fighting Parkinson’s Disease, but the quote actually applies in many circumstances. When it comes to Hodgkin’s International, the organization is led 100% by the very experts who have survived Hodgkin’s Lymphoma. The seven board members and lone staff member, are all long term survivors of Hodgkin’s Lymphoma, like me, and like me, deal with various late developing side effects. Like me, at one time or another, there was struggle trying to find care and answers for unexplained health issues that were coming up. Like me, many face emotional struggles as the physical issues pile on. Who better to provide information and support, than those who have “BTDT” (been there, done that)?

Look, as I have said many times before, no one gets it more than someone who has dealt with cancer before, when you are told you are in remission, and you are declared in remission, and you complete enough follow-ups, you want to take off faster than the “roadrunner” racing off from Wile E. Coyote. While I understand this position, it does leave me concerned. I know, all anyone wants to do is get back to the life that they led before cancer. And you can for the most part, most likely. But there are things you have to realize, and though not guaranteed, the possibilities do exist, there could be things later in life that develop health-wise because of the treatments that gave you that “cure.”

So, regardless if you are a survivor who has had enough when you are given the “ok” sign, or someone who is already dealing with health issues, the point is, to be aware of, and remember, Hodgkin’s International. And for the record, why international? Because there are survivors of Hodgkin’s all over the world, and many of us are connected via social media peer groups. Many without the information that I want to share with you today.

So, without further adieu…

hodgkinsinternational.com

On this website, you will find a variety of resources. It should be noted, it is constantly being updated. The great thing about my fellow survivors, is we share information, whether it be diagnostics, late side effect information, which specialist to see, or how to find a survivorship clinic, because this part of survivorship is relatively unknown, it is taking those who know, those who have the personal experience, to build this website.

One of the unique things offered on the Hodgkin’s International website, are video presentations by patients, survivors, and medical professionals. There are personal testimonials of survivorship. There are explanations of the various health issues that are experienced, and many times, recommendations of what to do about them. Recently, in what was a “two for” presentation, we (survivors) got to hear from an oncologist who also happened to be a long term survivor of Hodgkin’s Lymphoma. Again, I want to stress, you can learn how to deal with other cancer treatments similarly by learning about the treatments used, and the need to understand how they can affect the body later on in life.

Then of course, there is the information that can be found on the website, from the various late effects possible, both physical and emotional, research articles, and other literature. The website continues to add the locations of known “survivorship clinics,” facilities that at least recognize late developing side effects from treatments. At the very least, you can find a “survivorship plan”, which includes research articles, and other helpful information for you to take to your primary care doctor, if that is your only option available. This is all verified and confirmed research information, by those who have studied late side effects as well as Hodgkin’s Lymphoma.

And Hodgkin’s International makes this all easy and convenient for you. You do not even have to just “bookmark” or save the website location. By signing up for the monthly email, you receive announcements about upcoming video conferences discussing topics like mentioned above. You will also be able to read stories from other survivors.

Again, like I said, if you are a patient of Hodgkin’s Lymphoma, any cancer really, and you are like I was, wanting just to move on, just remember, that if a time does come, and you find yourself, dealing with unexplained health issues, Hodgkin’s International is the place you want to begin looking for answers and support. I say this without reservation, there is no other organization out there, even the big ones, with the commitment to long term cancer survivorship as Hodgkin’s International. And why is that? “People living with the conditions are the experts.” Thank you Michael for pointing that out.