Paul's Heart

Trip Or Treatment

(image from Google images)

Trick or treat. Trip or treatment. Two very similar phrases, each with something in common, but each with very different consequences. Every October, children traverse through their neighborhoods to fill their buckets with sweets and treats. I do not know anyone who does not like to travel or go on trips. If you dare to defy the miniature costumed humans in their quest for chocolate booty, you risk the wrath of a trick, a potentially messy and inconvenient assault.

But when it comes to cancer, making any decision that will impact the start of treatment, or delay treatment, is likely to be more than just inconvenient. It could end up being a harmful mistake, potentially fatal.

Two stories came across my news feed recently, both involving a conflict between treatments and travel. Now before I get into those posts, I want to make perfectly clear, treating Hodgkin’s Lymphoma, and likely many other cancers, time is important. Important because you want the best chance at long term remission, which means diagnosing the cancer as quickly as possible, and getting started on treatments sooner than later. There are any number of things that can be interrupted when you are told you have cancer. One thing I will tell you about cancer, it is not fair. Cancer does not care what you are in the middle of doing. Cancer does not care how old or young you are. Cancer does not care how nice, kind, and generous a person you are. And yes, cancer does not care if you had another cancer before. There is nothing fair about cancer.

In post number one, someone has just gotten diagnosed with Hodgkin’s Lymphoma. They are already assuming this is not something that will get taken care of overnight. So they realize, that in less than two months, this person is supposed to be going away on a cruise. Of course there are so many thoughts running through their mind as the trip was paid for, not likely to be refunded (cruise lines are not known for being understanding that way). Of course the person is wondering if they can put off treatments until after the cruise, or if treatments can be worked around the cruise.

In post number two, an individual is in the middle of treatments, and as common and expected, dealing with a multitude of emotions from frustrated, possibly depression, just looking for some sense of normalcy, and at the time of the post, feeling quite well in between treatments, wants to take a mini vacation to a fairly populated resort before his next treatment.

Both of these situations are quite common, and the questions of whether it would be okay to delay or not, are quite understandable. But just for the sake of argument, I am going to throw in a fictional, yet realistic third scenario (I refer to it as fictional as I am not referring to anyone in recent time). All too often, some women get diagnosed with Hodgkin’s while they are pregnant. Now clearly, this situation, and I have seen it discussed many times, does not have simples answers as to the impact on treatments, for the sake of both the mother and the baby. Sometimes, difficult decisions need to be made.

But in the first two situations, the decisions to delay treatment to complete something recreational should seem simple enough. Yes, there may be pressure due to having spent major amounts of unrefundable money in advance, and of course there is the anticipation of having looked forward to the trips for however long. But with Hodgkin’s Lymphoma being one of the more treatable cancers, especially when caught early enough, and treated soon enough, it is a very dangerous role of the dice, to delay treatment just to go on a trip. No one knows just when that moment will occur, that you can no longer go back with a decision that you must now live with, and yes, possibly die.

My own experience, I was lucky. I made the wrong decision. I was diagnosed with Hodgkin’s Lymphoma just six months before I was supposed to get married. My oncologist made the mistake of giving me all the options at the beginning, based on what stage would be determined. He had not realized how hard of a fight I would put up to make sure my wedding went as planned, especially how I would look. Yes, I did not want to look like a cancer patient, sickly, bald, like the stereotypical cancer patient.

The options that I was given were 30 treatments of radiation, of 6 months of chemotherapy. Both would have a good chance of putting me into remission. The doctor’s opinion was that I should go through chemo first, then radiation because I was staged at 3b (stage 4 is the worst as there is cancer involvement on both sides of the abdomen). And there it was, six months of chemotherapy would run right into my wedding. I asked him if we could delay until after the wedding, he was concerned that would put me in a more serious condition, unable to get into remission. He did say that radiation alone had a chance to put me into remission, but he still felt his opinion was best. But for me, I would be done in 30 days, and more importantly, for my wedding, I would not look like a cancer patient.

I did the 30 treatments, and had recovered well enough in time for my wedding. More importantly, I looked completely “normal” (pictured with my grandmother). Best yet, the radiation alone put me into remission. There would not be any chemo in my future. I would go on my honeymoon with my wife, and return for a scheduled follow up scan.

That is when I got the news I did not want to hear. My scan revealed “new” disease below my abdomen. This was not a relapse, but new disease. Radiation had gotten everything above the abdomen, which was still clear. Chemotherapy likely would have gotten this area had it been given. Now I was faced not only with six months of chemotherapy, but the doctor now felt an additional two months would be needed for long term remission (or additional radiation). Having guessed wrongly, and admittedly for foolish reasons, I went for the full eight months of chemotherapy. And yes, I ended up looking like a stereotypical cancer patient. But do you know what else? I am also in remission 34 years now.

So I understand the dilemma that two of the above three situations face. For the pregnant situation, that is clearly at the doctor’s decisions to ensure the safety of the mother and the baby. But for those with trips planned, to unnecessarily be exposed to any illness (Covid is still an issue among other illnesses) trapped on a floating petri dish, or take a morale boosting trip to a heavily populated resort again exposed to any number of people who did not stay home if they were sick, could result in a devastating decision to delay treatments, and I do mean devastate, and the consequences may not just end there if remission cannot be reached because of the delay.

As if my “wedding” decision was not bad enough, approximately around treatment number seven of eight, I wanted to go skiing. And I asked my oncologist if I could go skiing. He told me that I could, but to keep in mind, that as I would be dressed warm, and would obviously sweat, I risked catching a cold, or worse, something from others while inside the lodge. Seeing how I made one bad mistake already, when my doctor knew best, I heeded his warning putting off skiing until the next year. But don’t you know, just prior to my eighth cycle, I caught the flu from a co-worker, and my final treatment was delayed two weeks. It was devastating.

So just as in choices between rewards and consequences of Trick or Treat and Trip Or Treatment, the rewards should be too good to give up. Take it from personal experience. Especially if you are hoping to have long term remission. You want to do everything possible, and that includes the best treatment options, as soon as possible.

Heartversary #16 – Part 3, The Grand Finale

Since 2008, April 18th has always been the most difficult day for me to get through. Sixteen years later, it is no different. For sixteen years, no, thirty-five years including my cancer fight with Hodgkin’s Lymphoma, I have dealt with so many health situations, and went through one of the most tumultuous divorces involving the custody of my two daughters, but it is today’s date that remains the most difficult for me to recognize. I know many mean well when they say, “you just have to let it go.” But anyone who has ever gone through trauma even once will tell you, there is no just letting go. You can’t. And as many close to me discovered from my book, including my doctors, there was so much that I kept buried deep inside of me all of these decades. Sadly, there is still so much more. In any case, here is part 3 of my 16th Heartversary.

I never did get to sleep the night before, my thoughts evenly balanced between the surgery early in the morning, and the only thing that mattered to me, seeing my daughters again. Just after midnight, a large figure appeared in the doorway to my room, the hallway behind him darkened, so all I saw was shadow. I was confident that it was not the grim reaper however.

This was Michael Clarke Duncan pictured above in one of his greatest roles, in The Green Mile. The gentleman in the doorway resembled Duncan and at the moment, that was not the only similarities that I was noticing. Although he was not the one being escorted, this man was here to escort me. He would be doing the final preparations with me, like “shaving” me everywhere, and I do mean everywhere. And since comparatively to the picture above, I could be compared to Tom Hanks picture to the left of Duncan. Clearly I would not be putting up any kind of fight.

Once he was finished, I asked him for a huge favor. While I am not an actively practicing man of faith (I really do not care for organized religion, but I do consider myself a Christian), I asked him if he could roll me in a wheelchair downstairs to the hospital chapel before it was time to head to the operating room. He said that he could do that. And I just sat in the chapel meditating for about a half an hour before the orderly was contacted to bring me back to my room. It was time.

It was 5am and I was brought down to a holding area, where I was told to remove everything, and slipping a gown over top of me, but not tied. Once I was moved to the operating room, the gown was removed, leaving me in all my God-given glory for all to see, quickly being draped with several cloths. Extensions of the operating table were opened, which would be used to support my arms, which would be positioned extended and out, as in a cross formation. There was so much activity going on, probably at least a dozen people, nurses and other staff. I had not seen my surgeon yet. Looking around there was so much machinery and equipment. This had finally caused me to become overwhelmed, as this stuff was all for me.

I could not see anyone’s faces, as they were all already prepped for the surgery in this sterile environment. But a nurse, likely seeing fear finally in my eyes began to ask me questions, name, birth date and stuff, then moved on to some relaxing personal questions. Just then, I heard someone else beyond this nurse make the comment, “oh my gosh, he is so young for this.” And that quickly I responded, “I am young. I am only 42 years old. And I have two daughters that I so much want to see again. Please make sure I get through this.”

I do not remember much after that moment. I am guessing my vitals were going bonkers and they sedated me. The next time my eyes would open, my heart would finally be working the way it should be. Though clearly I have no recollection of what happened during the surgery, reading through the surgical report was like reading a Jules Verne science fiction novel like “Fantastic Voyage.” The most jarring of notes, stopping my heart and draining the blood from it, and filling the heart with a cooling fluid to save the heart while the bypass was completed, all the while a heart-lung machine kept my body alive. And then, the heart was filled with warm blood, and the heart was “shocked” to begin beating again. There are a lot more details in the report, but that is the short version of what happened.

I awoke for the first time, in the intensive care unit, completely disorientated. I was terrified as my movements seemed to be limited, I was unable to speak, and all I saw was a darkened room, with lots of machines and tubes, blinking lights, and then finally someone approached my bedside. It was my ICU nurse, Joe. Though I looked around for my family, I saw no one, just Joe. He had explained that the surgery went well, and I was now in the recovery phase. But I was still panicking, which left him having to re-sedate me.

There is so much more to this story, which I go into more detail in my book “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor,” which is available on Amazon, so I do not want to bog down the post. But the spoiler alert is, here I am, sixteen years later. I ended up having only two bypasses done, as the doctor felt that with the other two completed, the other (the RCA) would correct itself. Unfortunately, with my radiation history, the RCA did not correct itself, in fact, needed to be corrected eleven years later. There are different opinions on how long this bypass would hold up, but on average it seemed to be between 10-15 years. Well, I am on year sixteen officially, and following my 3rd heart surgery a few years ago for another issue that had been seen originally but not corrected, the status of my bypass is still holding up quite well, and appears that I will have likely at least another ten years or more hopefully.

I cannot stress enough, if you feel any of the symptoms that I described in the beginning of part one of this series, and it does not matter if you had Hodgkin’s Lymphoma or not, do not hesitate and waste time, get to the emergency room. As I mentioned, one of my survivorship issues is PTSD, and it gets triggered each time I hear someone mention the very symptoms I was experiencing. Because I will never forget that. My father, who suffered a major heart attack, was a life-long smoker and had a diet of fried fatty foods. He described feeling the worst unrelenting heartburn and then the worst pain in his left arm. I was not having those symptoms, so I was not thinking about a heart attack. But the symptoms I was having, were bad enough to need medical attention.

As my cardiologist would put it, “it was not a question if you were going to die, but when.” In retrospect, I was able to recall that I was having those symptoms for at least four months, the same symptoms, chest tightness for 30-60 seconds, then relief, but an out of control heartrate. I was mowing my lawn, shoveling snow, moving equipment at work. I felt this feeling every time.

So when I see someone post these similar symptoms on my news feed, I immediately tell them they need to go to the ER. Four of my fellow long term Hodgkin’s survivors were faced with these symptoms, and all four ended up with the same emergency bypass surgery, some with more bypasses, some with less. But I do believe that their lives were saved, just as mine was saved, because the right person, like my doctor, made the right call, as unusual as it was for someone my age (and the ages of those four survivors), because of that call. Any further delay could have been fatal.

But here I am today, getting to experience so much with my daughters, sixteen years later, my daughters now adults, doing adult things, me getting to watch.

Though I hope you never find yourself in this situation, if you do, I hope you remember my advice and warnings, to get help if you feel any of those warning signs. Thank you for reading “Paul’s Heart.” Your support and encouragement in my survivorship means so much to me.