“If you are going to get a cancer, this is the one you want to get.” I was actually told that more than 35 years ago when I was diagnosed with Hodgkin’s Disease back in 1988. Though the statement made my blood boil, I initially missed the doctor’s follow up sentence as to why I was so lucky. At the time, Hodgkin’s was considered one of the most treatable cancers, with a remission rate around 85%. Now to be clear, that 85% is to make it to the five year mark. After that, you were on your own. Today, the success rate is even higher, in the low to mid 90’s, but again, that is still for that five year mark. In the 35 years since I was treated, both treatments that I underwent, extreme high dose radiation and the chemotherapy regimen of MOPP-ABV are no longer used, using safer treatments, in lesser amounts, with better results.
(photo courtesy of Amazon.com, available $15 at the following link: https://a.co/d/2JRZsZ3)
In the 35 years since I was diagnosed, so much information and resources have come out about Hodgkin’s compared to NOTHING. Of course, I wrote and published my first book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor”, detailing my life from diagnosis through treatments, and the decades that followed. Of course, I began writing “Paul’s Heart” the blog more than a dozen years ago. I am even publishing TikTok videos on my history with Hodgkin’s @PaulsHeart2022 .
Social media has played quite a role in getting information into the hands of new patients and survivors, more than from the big players such as the American Cancer Society and the Leukemia And Lymphoma Society. And today, there is an organization committed to Hodgkin’s Lymphoma specifically, with accessability around the world, Hodgkin’s International.
There is so much information available for new patients and survivors, newer and older. Medicine has finally caught up with discovering the need to follow up patients beyond the five year mark. Medical facilities have created survivorship clinics to help patients deal with any late side effects from treatments that have developed. And of course, perhaps the best of all, this world wide web has given the opportunity for patients and survivors to meet others who have gone through what they did, not just online, but in person.
The above photos were from a symposium hosted by Hodgkin’s International, bringing together patients, survivors, doctors, and other medical advocates, to talk, share, and discuss the issues of Hodgkin’s Lymphoma. I was even honored to be one of the panel speakers (I am actually seated next to the doctor who had taken care of me most of my survivorship, as well as another of my doctors at the end of the table).
Yes, a lot has happened over 35 years. Perhaps you have been reading “Paul’s Heart” from day one, and perhaps have read my book. It is my hope with all the efforts that I have shared, that somehow, I have providing you hope and inspiration.
With that said, there are other “awarenesses” this month, of course related to Hodgkin’s Lymphoma. Hodgkin’s is considered a childhood cancer, and a blood cancer, as well as Lymphoma. And of course there is Non-Hodgkin’s and Leukemia. Chances are, these 35 years later, back when I knew noone who had ever had Hodgkin’s, your life has been touched by someone with any one of these cancers. Like I said, treatments are successful, but not perfect. We still need them to be safer, and 100% successful.
No, I am not talking about the horror movie. But I am referring to a different major emotion. Yesterday was a day that I had repeated so many times prior, though this time had a much bigger impact on me, the end of Summer visit with my daughter(s) (my older daughter had returned previously).
In the first half of their lives, we had never been apart from each other except for one time, and it was a “biggie,” my emergency heart surgery. Unfortunately, later on, divorce would create what my body’s health betrayal could not do, separate us. In the end, I would become a “non-custodial” parent which meant that my daughters would spend the majority percentage of time with their mother, which is not to be confused with “legal custody” which referred to everything else in regard to my daughters, which was “shared” equally at 50-50. I crafted my own custody arrangement following the disappointing attempt by my attorney. On paper, it was a cooperative agreement, with the intent to avoid conflict especially around holidays, all the while allowing me to have quality time with my daughters.
Because of technology, the absence between us and our visits, I was able to talk to and see them whenever I was able to get through to them, which was suffice in between our actual visits with each other. I can tell you, as an adult child of divorce, I wish my father would have had that option available to him. Technology would have helped him to get around the issues he had with my mother. But that is another story.
So all that was left to enjoy, were the visits, which could be long weekends, or extended visits during holiday or Summer breaks. With each of their visits, it was often like we were never apart. The routines of making meals, doing laundry, taking them places, and just having fun, were no different than when they were younger and when we all lived with each other. But, when it was time for them to go back home, upon me returning home, alone, is when it hit me.
(photo courtesy of statecollege.com)
Silence. Total and complete silence. No one to cook anything for. The televisions was not on. No one was asking me for anything. There was no one to see or look at. It was quiet. It was empty. Then it hit me, I was dealing with something I had not heard since my psychology classes in high school and college, “empty nest.” The analogy does not get any simpler than that, baby birds hatch, grow, and then fly away from the nest, leaving it empty. While my “birds” were not flying away forever after each of the custody visits, the feeling was the same.
Yesterday’s emotions felt differently however. I know they did. Sure, my “baby birds” would return to the nest for other visits, but now, as they enter their sophomore and junior years of college, I can see things are different, much different. And I could not be happier for them, because this is the moment that I wanted for them, to take the things that they learned from me, and forge their own paths, create their own futures, make their own lives. With their early years of college life finished, they now have experienced the one of the final things they needed to do, feel their independence, learning to not only make their own decisions, but take into consideration the rewards and the consequences of those decisions. Both have taken major opportunities already, bold decisions that I never imagined so soon, proving to me and to those that know my daughters, that my daughters have bright futures ahead of them.
But knowing how strong and independent my daughters are, did not make my return back to the house, alone, any easier. It was quiet. Dark. No activity. The television was not on. No one was in the kitchen enjoying a snack. The laundry basket was not filled. Empty, the “nest” was empty. However now, it felt like the empty birds nest. My daughters schedules this year, and from here on out, are labor intensive, socially demanding, and then, still to be taken into consideration, time off to still be split between their mother and I. They will also want to spend time with their friends, and possibly, no, likely, significant others of their own.
I think what makes it especially harder for me now, and anyone who knows me knows this about me, my daughters are my world. As I faced that heart surgery back in 2008, the fear I might never see them again, combined with my complicated health as a long term cancer survivor, and a tense ten-year custody arrangement which is now ended, I find it anti-climactic that all the motivation and goals are behind me, leaving me to focus solely on the health issues that may lay ahead of me. I need to fight this feeling, because there is still so much that I want to experience with my daughters, their college graduations, weddings if they choose, and their children if they are so blessed.
(photo courtesy of Wild Things Food)
Living in Florida, I see nature and the circle of living every day. In the back yard, I have seen three baby deer over the last four years. I get to watch everyone grow, hanging around their parents, and then one day, they are on their own. And then the next generation begins. I guess that is where I am at right now. My daughters are into the next phase of their life, and will do great things, for which I am so happy and hopeful for. I do not know if the offspring of wildlife run into their parents anymore once they leave, but I know, as a human, I am definitely planning on it. Our visits will be shorter in duration, and who knows if the time will be enough to fit everything in. I do know, it will never be enough, ever again.
Over the years, I have made the comparison of my health history as a long term cancer survivor to that of the legend of “the Sword Of Damocles.” In ancient Roman lore, Damocles flattered his King, Dionysius about how great it must be to be king, to have all the power and wealth. Dionysius offered to let Damocles sit on the throne, to experience what it was like to be the king, but directly suspended over the throne, and Damocles, was a sword held by just one strand of a horse’s tail, able to drop at any moment the tail hair would finally give and break. Damocles, having the sword hanging over his head of course produced an anxiety and fear, never knowing if or when it would drop, teaching him that all the power and wealth of being a king could all end suddenly.
When I was diagnosed and treated for Hodgkin’s Lymphoma back in 1988, while the prognosis for survival was very good, 85% at least five years, nothing to very little was known about what could happen after those five years. The truth is, once a cancer patient reaches that five year mark, they are often treated as if they are officially cancer free, very little concern for the cancer to come back. But in 2008, I was discovered to have developed not just one issue, but several, late side effects from the treatments, chemotherapy and radiation therapy, that were used to “cure” me. Once discovered, it then had to be determined which was a priority for corrective action, and what could be “watched” for progress if intervention was needed. Though I had several issues, the prominent one that got the rapid and urgent attention, was a major heart blockage, often referred to as a “widow maker” (it does not take a rocket scientist to figure why they call it that), that had me on an operating table within 36 hours to save my life via emergency bypass surgery. Obviously that surgery was successful as I am typing this post.
But during the mad scramble to prepare me for the surgery, other tests had been performed. Soon after the bypass had been complete, more tests had been ordered as it was soon discovered a common cause behind all of the issues discovered, my treatments for cancer. With the “widow maker” dealt with, all of the other issues would be put into a “watch and wait” status, until the next issue would develop to a serious enough level to require intervention… my “Swords of Damocles.” I have many “swords,” thirteen in fact that are being “watched”, and once in a while, a completely different sword pops up out of nowhere, without warning.
(photo courtesy of Final Fantasy Wiki)
But in my last post, I made mention of a health issue, that several readers picked up on. I honestly had just been talking about it “matter of fact” in relation to conversations that I was having with my “now adult” daughters about my health history, something that they are old enough to know and be aware of. If there was an order of how all of my “swords” have been discovered, the issue in my last post, would have been number four, unidentified spots on my lungs. At the time of discovery back in 2008, they were just small enough to be noticed. Given my health history and exposure to the toxicity of chemo and radiation, it was determined necessary to watch and study these spots for development, how fast, and any other changes. Ironically, this would mean more exposure to radiation via chest CT scans and Xrays, but then hey, if the extra radiation could help discover something potentially cancerous before turning too bad, it was a worthwhile risk.
And so I would have a CT scan every year. By the third year, more of these spots would appear, but one spot in particular was getting attention. It was now measured at two millimeters, but it was unidentified and uncharacteristic. My doctor determined that it was still best to watch its progress as opposed to doing anything invasive such as a biopsy. The CT scans would continue annually, and over the next many years, that spot continued to grow, ever so slowly, and soon a second spot became measureable. But still, unidentifiable, my doctor felt it was safe to still “watch and wait.”
A couple of years ago however, fourteen years after it had been discovered, that spot soon had a couple of extra words attached to the description, as well as the size now more than 400% larger compared to 2008, “possible adenocarcinoma,” lung cancer. Over the years of my survivorship, I have learned not to put the carriage before the horse, or let my anxiety get the best of me, until I get the full explanations or decisions to be made from my doctor. And yet, my doctor felt, and I agreed, still no reason to do any biopsy, and decided to continue to watch this nodule. Yes, in the meantime, that smaller one has also grown, but not as rapidly, and a couple more are now measurable.
I had been under the care of a pulmonologist (lung doctor) once before, back in the beginning of all this mess. This year, I made the decision to hire another pulmonologist. I had an appointment already scheduled with him, as well my annual CT scan. But thanks to the way medical records are now kept electronically, I was able to see my results of the scan prior to my appointment. The nodule had grown three millimeters since my last scan, and now the phrase “suggestive for indolent lung adenocarcinoma,” lung cancer. Fuck!
Another cancer had always been a possibility due to the increased risks from my treatments. I had a skin cancer scare back in the early 2010’s on the back of my skull at my hairline (clearly from the radiation therapy). I have frequent polyp histories in both my esophagus and colon requiring removal of the polyps before turning cancerous, as well as a condition called Barrett’s Esophagus, a pre-cancerous condition for esophageal cancer. And of course, I had always had lung cancer on my bingo card of health.
But lung cancer had a different meaning for me. My father died from lung cancer, or rather complications of lung cancer. He had the diagnosis, surgery to remove the tumor, which the doctors had declared at stage one, the best case scenario. But following “preventative” chemotherapy and radiation therapies, something happened, horribly. My father would end up terminal and pass away in less than a year.
Now I have a reputation for being a difficult patient with some doctors, and yet a helpful patient with others. You see, I demand that I am included in every decision being made, and that means I need to know everything that I am dealing with. So when I meet a new doctor, I give that doctor a chance to talk to me, explain his thoughts, and then it is my turn to talk, especially to ask questions. If my questions are met with annoyance or any other kind of pushback, I am out the door. If the doctor is receptive to my “involvement,” we move forward.
So I went to the appointment with my new pulmonologist and he did not waste time with idle get-to-know-you chit chat. Immediately he began talking about action with this nodule on my lung. With no official confirmation, though the characteristics all but definied the nodule as cancer, he talked about two options. The first option, a needle biopsy which came with a risk of a collapsed lung, oddly enough one thing I have not experienced with all of my health issues, and the second option would be to remove the lung in a procedure called a “wedge”, meaning they would take a hunk of lung with it to make sure that they got any peripheral cancer cells if any nearby.
To be clear, there is a huge difference between my Father’s lung cancer situation (smoking for six decades) and my situation (exposed to an unGodly amount of radiation to my chest area for treatment of cancer). However, my concern would follow my Father’s path from what I witnessed, and with major factor supporting my concern. My Father’s lung cancer was stage one, limited to just the tumor. They gave him chemotherapy anyway for four cycles as preventative, still no evidence of cancer. But then the decision was made to have him undergo preventative radiation therapy. Soon after that, he was declared terminal and he passed away a few months later.
So here I am, with a suspected lung cancer nodule, not confirmed. I am not willing to undergo the needle biopsy risking a lung collapse. Risks and being a long term cancer survivor do not go well together. But if I were to agree to this “wedge” being done, admittedly as some of my other fellow long term survivors have had to face, and it was determined to have been cancerous, I have two concerns. The first would be complications from that surgery, a real risk. The second, what would be pursued following the surgery and confirmation and cancer? Preventative chemo? Preventative radiation? Do you see where I am going with this?
I make all of my decisions based on facts, medical opinions, experiences of my fellow survivors, and just as important as all of them, my hunch or gut feeling. According to the National Institute of Health (the NIH), an “indolent lung carcinoma” is a slow-growing cancer, so simply that it is possible thought cancerous, not likely to be cause of death in one’s lifetime. And given my health, and likely shortened mortality due to my issues, a factor that definitely plays in my favor.
So if I were to allow the doctor to do the wedge, and it were confirmed as cancerous, what would be next and then would I potentially follow the same path as my father with complications?
I spoke with other doctors on my “team,” and we are all in agreement that I am okay with my decisions to take the position I have, to leave well enough alone, and just continue to watch it. Another CT scan has already been ordered, and a PET scan is being pushed as well since I am not agreeing to any kind of surgical diagnostics currently. And I am good with my decision. Which is what contributed to the end of my last post, and having the discussion with my daughters. Being adult age now, they need to understand what I have gone through, and what I deal with. And they needed to be assured, that even with this news, even if slightly comparable to their Grandfather’s lung cancer, my situation is different, and so is my decision.
I am not sure how much more luck I have having gone through everything I have, but my daughters have only known me to get through all that I have. And they expect this to be no different.
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Paul's Heart 