Paul's Heart

Life As A Dad, And A Survivor

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.

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