Paul's Heart

Time Beckons

“Time, keeps flowing like a river, beckoning me.” These are lyrics from the song “Time” by the Alan Parsons Project. It was one of my favorite songs back in the early 1980’s. Now, when I hear the song, it seems to haunt me, as if forboding me.

I have started and re-started this post several times now, its prompt has rattled me which is not easy to do. But for the second time in my life, when it happens, it is a doozy.

(photo by Deadline)

Innocently enough, I sat down to watch the final season of Superman And Lois, one of my favorite versions of the Superman stories. Tyler Hoechlin was one of the better Superman/Clark Kent characters rivalling the original George Reeve (able to leap tall buildings, faster than a speeding locomotive) and his son the late Christopher Reeve. Hoechlin is one of the less cheesy portrayals, remaining just nerdy enough for Kent. Knowing this was the final season, like many of the other super hero series that I have watched that came to conclusions, I did not see this ending coming, or how it would have an impact on me.

Spoiler alert, sorry need to do it for the purposes of my post, Superman was in an epic battle with another “super man” from another universe, but through experimentation, evolved into a monstrous killing machine, able to do what kryptonite could not do, kill Superman. Once dead, that should have been the end of the series, but of course, you could not leave the storyline open of some indestructable monster left to do with the earth whatever it wanted, and that monster hardly would have made a good spin-off.

Here is when my senses perked up. Arch nemesis Lex Luthor had commanded that the monster bring back the heart of Superman, which Luthor kept in a box hidden from Superman’s son, who had hopes of returning the heart to his father, now being kept in suspension back in the fortress. Instead, as the son located the heart, he also confronted Luthor, who then destroyed the heart of Superman right in front of him. Again, with several episodes left in the season finale, I figured it could not end this way.

The monster was not done yet with his mayhem, and then killed Lois’s father, who worked for the Department Of Defense, partnering with Superman. This became an opportunity, even though from different planets, Lois’s father’s heart, would be transplanted into Superman back at the fortress.

Yep, cue my senses. Beginning to hit a little too close to home now, and it did not matter that it was Superman. Superman would recover, and as he resumed his activities, which included training his sons, who also had powers, during one exercise, flying, he grabbed at his chest, which appeared to be feeling wonky, dropped from the sky and crashed. Of course, being Superman, he could handle that. But Superman was experiencing what many of us who have gone through heart surgeries before, doing too much too soon. Evidently with a human heart, Superman was not healing as quickly as he once would have. This was not the only thing noticed.

While at the dinner table, Lois noticed something about Clark, making reference to “some peppering” on Clark’s head, another way of saying someone is turning gray. Make no mistake, there are big differences between Superman and I, but now two similarities have occured. It was the next scene that made it clear to me how the series was going to end, and that was really going to problematic for me.

Halfway through the series, when this monster came along, John Henry, also came from that same dimension, and soon began working with the Department of Defense and Superman. Seeing how Superman had been struggling, and his appearance seeming to age, Henry told Superman he wanted to run some tests, which included scans. Henry had discovered, that even though Superman was Superman, having his father-in-law’s human heart, the heart was that of a 60 year old man, and was not perfect. Superman was no longer immortal. The question was for how long. Superman would die eventually, on his own.

I enjoy my super heroes, and from both DC and Marvel. But of all, Superman was the strongest, the fastest, and really stood for all that was good. Out of those three characteristics, I shared the last one with Superman. Now however, I shared even something stronger with Superman, an imperfect heart, his by circumstance and need, mine by medicine.

In 2008, I had to have emergency open heart bypass surgery, for something nicknamed “a widow maker” blockage, a blockage of the LAD (left anterior descending artery), which is named that for a reason, a person who has this, without immediate and extreme intervention, will die. However, unlike the average person that has one of these situations, mine was not brought on by diet or lack of exercise or conditioning, but was rather a late developing and progressing side effect from radiation therapy I had undergone for Hodgkin’s Lymphoma eighteen years earlier. Within 36 hours of being discovered, at the age of 42, I was on an operating table.

Once discovered that I was having late developing side effects, and that there would likely be more, I began to see doctors who had knowledge of this kind of history. And more things would be discovered, more damage from the radiation, but also the chemotherapy. In fact, just to keep it simple with this post, more problems had been discovered with my heart, that would eventually need attention. More than a decade later, I needed another artery for my heart repaired, the other big one, the RCA (right coronary artery), and my aortic valve would also need to be replaced. I still have one more issue with my heart being watched, but now there is the matter of the status of my bypass (how long it has been and is it still holding up), as well as the stent of my RCA, and the valve. All three of these things are temporary. At some point, they will all need to be fixed “again.” But with my complicated health, and the risks of a second open heart surgery, it will be an uphill battle, the odds against me.

So now, Superman and I are even, and it is because of our hearts. And in full disclosure, at my current age, I too have my share of “peppering” in my hair covered by my length, and definitely all gray in my beard thanks to my Dad. But Superman and I, face/faced both the same fates, it is/was just a matter of time.

(photo from Instagram)

The final scene of the series, was a summary of the next thirty-two years for Clark. Lois, who had relapsed from her breast cancer had passed (her original story line was quite the contrast watching Clark be the “helpless” caregiver in spite of being Superman), their sons had both grown, stepped into their roles as “super men” while also having families of their own, and Clark got a dog, a Golden Retriever he named “Krypto.” Another similarity between Superman and I, we both love Golden Retrievers.

(photo from Screen Rant)

I could begin to feel tears behind my eyes. It is not something I am used to as I consider myself someone who does not normally show my emotions. But something like this happened to me once before, losing control of those emotions, ironically while watching another television show, a charachter undergoing open heart surgery. Though watching that, I just sat there, with the tears trickling down my face, clearly reacting to the fact that was real life for me just two weeks prior. It was too real, and definitely worse than what was being presented.

As Superman passed, we saw the collage of everyone who was so important in Superman’s life, from old friends, to his sons shown both as teens and as adults, and waiting for him outside of his “home,” was Lois, wearing a red dress that she had worn twice before, a favorite of Clark’s. I was now experiencing a full and complete breakdown. Time. Superman had thirty-two years with his father-in-law’s heart and got to experience so much. And for better or worse, he would not have to live forever with only the memories of what was, as he would have with his immortal heart once everyone would have been gone.

I was alone when this breakdown happened. And it took a long time to gather myself back together. Another thing Superman and I have/had in common, we both know/knew that time was not on our side, worse, when we least expect it. If you are reading this, and you have good or great health, I am happy for you. And I get you may not understand how powerful these thoughts are, that you cannot just “think positive” to make them not happen. Quite the contrary, the knowledge of my shortened mortality is actually quite a good thing in that I appreciate EVERY opportunity and moment that I get to experience, with a major focus being on my daughters.

Nearly seventeen years ago, I was told by my cardiologist I was “going to die, not a question ‘if’, but ‘when,'”my death imminent at that moment. This was what I nearly lost, watching my daughters grow into adults, getting to experience the many things they are buildilng their lives upon. And I am not done yet. But I am also not arrogant to think I have any control over when “time” is decided. So I do take every moment I can with my daughters, who celebrated my past birthday with me for the first time in eleven years (due to divorce and custody agreement) and presented me with two of the most heartfelt gifts.

I am not alone in this type of situation. There are many fellow long term survivors of Hodgkin’s like me who face this situation, or have faced this situation. And just as I struggled how to write this post, I find it difficult how to end it, other than to say, I plan on writing a lot more posts. I plan on more books. I am planning on continuing my advocacy for cancer patients and survivors. And I am planning on a lot more time with my daughters.

To Work Or Not To Work During Cancer Treatments, That Is The Question

If there is one word that I would use to describe myself as an employee, or at least I used to be able to in my healthier days, is reliable. In my nearly forty years of employment, many of those years I earned awards for “perfect attendance,” taking time off only that was granted for personal time or vacation time. But during the time that I was diagnosed with Hodgkin’s Lymphoma back in 1988, my reliability was put to the test. I was able to arrange most of my surgical appointments for biopsies and such not to take the entire day, with the exception of one. The challenge would be during my treatments.

For my radiation treatments, thirty of them over six weeks, would occur Monday through Friday and off the weekends, which took all of a total of five minutes on the table for the linear accelerator each appointment. I missed only the first half hour of work, which I made up at the end of the day. With my chemo treatments, it was a little more complicated because I did not know how my body would react to the treatments, but I was able to arrange my treatments to be given Friday afternoons. I would leave work a couple of hours early, have my injections, and have the weekends to recover. This would be a cycle of two weeks on treatment, two weeks off which I would work my normal hours. I missed no other time, something I know my boss appreciated.

Up until my cancer diagnosis, I would describe myself as someone who got along with everyone. I say “up until” because something changed and I do not think it was with me. I noticed some of my co-workers had begun grumbling around me, and it had gotten back to me. I felt confused, and quite hurt. After all, I was the one dealing with cancer, yet they were acting as if they were the ones being impacted. I was actually being accused of “getting favored treatment”, though no examples were ever given. Jealousy? Envy? These feelings would escalate throughout my treatments. I never understood why. I do know, it was an extra burden on me, dealing with cancer, as if I did not have enough to deal with.

A question that comes across my social media feeds often, is “do I work during my treatments?” Back in 1990, after ending my treatments I honestly believe, had I needed to do it all over again, I likely would have opted not to work rather than go through the stress and abuse I felt was thrown at me. Of course, there was one issue standing in my way of having that option, money. I was married then, and we had rent and bills to pay. Giving up my salary would have left us financially in such a hole. Not always practical in these days, I usually tell cancer patients asking the “work” question, unless you have five to six months savings stored away to rely on, you are going to need to do all you can to earn an income.

There are some other options available to enable at least some assistance. For instance, when it comes to Hodgkin’s Lymphoma, and any blood cancer, the Leukemia & Lymphoma Society has grants available to assist with direct expenses related to that cancer. And it is likely that other cancers have organizations that provide similar financial assistance. Social Security Disability is another possibility, though not as likely. There are restrictions, and unfortunately the process is time consuming, so, unless you started the process prior to even knowing you had cancer, you are likely to complete treatment before you even got an answer either way. Also, the definition and description of what keeps you unable to work are difficult to meet. I am unfamiliar with the option of coincidentally or conveniently being “laid off” from work, able to collect unemployment compensation, other than the need to have worked enough time prior.

For me personally, I wanted to work. If for nothing more, my work day would provide a much needed distraction that if I sat at home all day, my cancer would be all I would think about. Of course, I would much rather have preferred not having to constantly defend myself at work, for things said of me that were not only untrue, but for everything else I currently had no control over. My focus on having cancer actually ended up worse remaining at work. Would I do it that way again if I had to do it all over? I really do not know.

There are other factors to consider in whether to work during treatments. Radiation and chemotherapy will likely kick your tail with fatigue. There will be good days, and there will be bad days. Overdoing it on good days can lead to crushing bad days. Finding balance can be difficult. The important thing is to give yourself a break when fatigue hits, especially emtionally because your body is going through a lot.

Finally, and probably the most important factor to consider whether to work or not, is exposure risk. What does this mean? It is something you have no control over because you depend on others to make the right decisions, and often times they will not. I am talking about co-workers who come into work sick, or another example would be teaching a class with students who come into school sick. The Covid19 pandemic brought major attention to the ramifications of contracting an illness with an upcoming treatment. And it does not matter if it is Covid19, the flu, or strep throat, an infection, contatgious or not can be devastating mentally to a cancer patient when you are told you cannot receive your treatment as scheduled because blood counts are too low. This happened to me during my second to last treatment, delaying the date I had written on my calendar as my goal to finish treatments, and it did not happen. And if it were something to be contagious, the oncology office will not want to risk the other patients health by having you come in.

But it never fails, there is that one co-worker that comes in, nose-running, coughing all over the place and everyone. To a cancer patient, this creates the dilemma whether they themselves will have to leave work for their own protection due to the ignorance of the co-worker not staying home. I know this first hand. A co-worker had come in, announcing that she had strep throat, which is highly contagious. I protested to my boss about my risk and was told, “what do you want me to do? She doesn’t want to go home.” So I made the decision to go home, which ended up being without pay as I had already used up my sick pay at the beginning of my Hodgkin’s journey. But I did not come down with strep, which could have been very bad for me on several levels.

I would like to think that all of these negative behaviors would have improved over 34 years, but I can say that I at least have not seen that. When I had to have emergency open heart surgery back in 2008, initial concern by my co-workers soon turned to petty jealousy and envy by some of my co-workers, consumed that they felt I should have been returned back to work sooner than what my doctors were directing. So, I doubt there would be any mercy for cancer patients either.

I have given you a lot of factors to think about when it comes to working during treatments or not. Only you are going to know your personal situation, and even though you may know the potential for any co-worker conflict or not, it still may be unpredictable. But you need to do what is going to be best and safest for you, the goal to get through your treatments, and hear the word remission.