This Sunday is Father’s Day for many. It will be recognized in all of its forms. We will celebrate the fathers who are present every day, offering love, guidance, sacrifice, and support. We will also recognize the grandfathers, stepfathers, and other father figures who have stepped forward when a child needed them the most. For me, Father’s Day is the most important part of my cancer survivorship. Every additional year with my daughters I know the blessings that I have.
We also carry in our hearts, thoughts for those whose Father’s Day carries both love and loss, the sons and daughters whose fathers have passed away, may the memories, lessons and love they left behind, continue to bring comfort and strength. My father gone now fourteen years, the loss is still felt as the day it happened.
And then there are those who lost their fathers during childhood, we recognize the lifelong impact of that absence and the courage it takes to grow through such a loss. I have several friends in this situation, and honestly, is one of the things that scares me most with all of the health issues that I have. I am in no way ready to go, but I am afraid, knowing that I have no say when that time comes, of the hurt and loss my daughters will carry. I have seen it with my friends. All I can do is hope that time is lessened by me getting more years.
Likely one of the most heartbreaking of circumstances, there are the fathers who have experienced the unimaginable loss of a child, whose enduring love and the bond that neither time nor death can ever erase. Again, I have friends who have experienced this, too many friends. But I am always amazed with the memories that carry and cherish to keep their children alive in their hearts.
Then there are those who are separated or estranged from their fathers through circumstances beyond their control – whether because of divorce, family conflict, distance, or other hardships. We acknowledge the pain, confusion, and unanswered questions that often accompany those relationships. As an ACOD, adult child of divorce, I know this first hand. I rarely talked with my father about it, which unfortunately with him gone, I still have unanswered questions. But I know there are fifteen Father’s Days, that we were not together in my childhood because of it.
Likelwise, there are fathers who are separated or estranged from their children through circumstances beyond their control, we recognize the heartache of missing milestones, celebrations, and everyday moments that can never be replaced. Again, as an ACOD, I did all I could to avoid what my father experienced and decided, my goal was to eliminate or prevent any hurt that my daughters could experience. But it is not uncommon for fathers to face so many hurdles, and to be fair, some mothers as well (but this is a Father’s Day piece), between the multitude of opponents, the courts, and anyone else who decides it is their business to interfere in the custody of a child and their father.
And while Father’s Day is a day of compassion, it is also a reminder of responsibility. Fatherhood is more than biology – it is commitment, presence, protection, and love. We cannot ignore the pain caused when a parent willingly abandons or desecrates those responsibilities, turns their backs on their children, or leaves lasting wounds through neglect, abuse, disrespect, and absence. Every year, I get replies to my annual posts on Father’s Day, reminding me that there are those fathers who do not deserve to be recognized. And I get it. But it does not mean that I and millions of others should not get to celebrate it.
Father’s Day is about those who choose to show up, do what is all possible to show up, to love, to sacrifice, to protect, and to remain present even when the path is difficult. With technology this can be as simple as a Facetime call.
For all those who will be celebrating with joy this weekend, remember the sorrow, long for the reconciliation or carry the weight of loss, that they can find peace, healing, and hope.
I need to offer a disclaimer for this post. I will be talking about radiation exposure used in treating cancer. And here will be the important distinction. The radiation exposure I am referring to is that what was used on cancer patients used prior to the turn of the century, which unknown to cancer patients back then, was not only dangerous, but carried with it, the potential risks for late developing side effects. Fortunately, today’s radiation uses less dosages, and often more precisely delivered to spare wider exposure to the damage done by older therapies, hence hopefully more safely. But if you are someone going through radiation treatment right now, what you are about to read, affects those who came before you, decades ago, before we were told of the dangers and risks. Now, everyone knows.
I have often written about my exposure to radiation therapy for my Hodgkin’s Lymphoma, for which I am grateful, giving me 37 years of survivorship, combined with my chemotherapy, and I have no regrets. The amount of radiation I was exposed to, 4000 rads within 30 days, scattered field upper mantle, just think of my entire upper body to my lower jaw. To put this in perspective, in the US, the annual limit for radiation workers is generally 5 rads for many types of radiation exposure. Look at that again, people who work with radiation are regularly limited to 5 rads of radiation per year. I was hit with 4,000 rads. So, doing the math, if radiation was your career, whether taking dental x-rays or working in a power plant, for someone 60 years old, the “lifetime” limit of exposure would be around 210 rads. I recieved 4,000 rads. Read this paragraph a second time if you need it to sink in.
Now that those numbers have sunk in, when it comes to cancer treatments, the exposure limits are treated differently because of the success of treating many cancers, including Hodgkin’s Lymphoma. So there is no strict lifetime limit. For those like me, treated in the 1980’s and before, Hodgkin’s patients were normally treated with 3500-4500 rads, again, I was treated with 4000.
So how bad exactly is this exposure? 100 rads (or 1 Gray) of whole body exposure can cause radiation sickness. 400-500 rads (4-5 Gray) of “whole body exposure” is potentially fatal. I recieved 4000 rads (40 Gray), my only saving grace, that my entire body did not recieve that amount, just my entire chest area and jaw.
While I live with this knowledge, and my late side effect health issues, it is when I share this conversation with those who understand radiation or work with it, and I see their reactions, I get it, I know they understand me, what I have gone through, and what I am now dealing with, their shock and their tears aside, I am still alive.
(photo courtesy of AIP.ORG)
I used to compare my radiation exposure to the accident at Three Mile Island Nuclear Power Plant in Pennsylvania in 1979. I was thirteen at the time, and lived about an hour away. I remember the panic and the conversations of needing to purchase large amounts of iodine in preparation for a nuclear core meltdown. Without getting lost in all the math weeds, I’ve done the math for you, the average radiation released within 10 miles of the power plant at that time was 0.1 rads. I was treated with 4000 rads. It is no lie or understatement when I say, my exposure was worse than what happened at Three Mile Island.
Recently, I have come across many articles referring to the fact that it was believed that while refusing treatment for Hodgkin’s would likely result in death, the risk from radiation poisoning, possibly during treatment, could also result in death (hematology.org). What it came down to was, you could die with the treatment, or you will die without it. The risk of death without was greater than the risk with.
The frustrating thing is what did my doctor know at the time, because this risk definitely was not explained to me. And I do believe it was known at the time, the potential risks, as you will see shortly in this post. I was never told I could die from my treatment. I was just told of some skin burning, and the possibility of pericarditis, and inflammation of the heart. Now if you follow Paul’s Heart, you know they missed the heart issues by a mile. But my question remains, what exactly did my doctor know back in 1988? Not that it would have changed my decision, it was not a matter of will die no matter what, but the treatment could cause my death.
Fast forward nearly forty years, and several nuclear disasters later, Chernobyl and Fukushima most notably, it was a documentary on Chernobyl that has severely triggered me.
(photo courtesy of CNN Press Room)
I am a history nerd and I love documentaries. And I am always especially concerned for all the survivors when it comes to radiation accidents, especially with my medical history. Now I am not going to review the whole series (four parts), but there is amazing footage from before, during, and after the meltdown of the core reactor. Most heartbreaking, are the images, the videos, and interviews from those exposed either environmentally, or as a plant worker, or volunteer, yes, volunteer.
There are images of people within weeks of exposure with obvious signs of radiation poisoning, from skin burns, hair loss, nausea. There were the workers who were killed instantly by the explosion. And then there was the coverup by Russia, which held Ukraine as part of the Soviet Union at the time. And the last thing the USSR was going to do, was take any kind of accountability.
It is what the survivors tell, and the interviews done at the time, that are just shocking, as they knew the risks, some even taking pride in their patriotic duty to respond. Again, I am not going to go into the whole documentary, but this part was just numbing. So because Chernobyl is going to remain radioactive for likely 20 to 24 thousand of years, the town of Pripyat, populartion of 50,000, remains evacuated, with the core still considered dangerous, the solution was to “bury” the reactor, in what they call a “sarcophagus”.
(photo courtesy of Wikipedia)
Yes, they would literally bury the reactor in a tomb. It was an amazing endeavor. But this was only going to be a temporary solution. 50 years temporary, which we are approaching now. But with Ukraine now independent, it faced the unthinkable, when Russia launched at missle at the sarcophagus piercing a whole, potentially causing the risk of radioactive release again.
(photo courtesy of BBC)
This is the newer and improved encasing of the reactor, let’s hope it lasts. Again, they know it is not permanent, and will definitely need to be dealt with again. I want to talk about an unusual group of “heroes”, and I put that in quotes because these were volunteers, inspired by only their patriotism to the USSR, knowing they faced death in what they were being asked to do, and they were happy to do it. They were called the “liquidators.” An odd name.
(photo courtesy of Smithsonian Magazine)
These liquidators, approximately 600,000 of them; firefighters, miners, medics, engineers, were tasked with putting out fires, burying radioactive equipment, and building the sarcophagus. Much of the “protective” gear they wore was improvised, and their time spent on their assingments was limited to minutes to minimize exposure, often unsuccessfully. The USSR in true communist propoganda fashion, reported only 31 deaths, when in reality it was thousands, and so many more thousands dealing with the late effects of the radiation exposure. No duh! You really have to see the videos of these workers in action to appreciate what they did, that literally saved our planet.
My very simple takeaway is this. In 1986, just two years before I would be treated with radiation for my Hodgkin’s, when the accident occurred, science and the USSR KNEW that radiation in that amount was deadly. Medicine already knew the limits of exposure. And again, I am back to “what did my doctors really know?” Again, I would have still opted for the treatment had they told me the actual risk, but the point was, they were not honest and up front with me about it. Not only that, they did not prepare me for the possibility and eventualities of the cumulative and progressive issues from that radiation exposure. I had to learn and discover everything on my own, often from other fellow Hodgkin’s survivors who have suffered the same issues, and then stumble across a doctor who I was lucky enough to understand what I have been exposed to.
There are several tragedies, one that there are so many Hodgkin’s survivors from the 80’s and beyond, totally unaware of the likely causes of their cardiac and other issues, are actually related to their treatments, but also unaware of the risks of treating those issues without the association of connecting their treatments to their ailments.
Another tragedy being that even if aware of the connection between treatments and ailments, the lack of access to qualified care, or worse, the interference of insurance with denials and pre authorizations for a phenomenon not covered widely in medical texts.
And then there are those like me, aware of and have access to the necessary medical care. For many, it is still not enough. The body can only handle so much trauma. Even if doctors “manage” the late side effects, sometimes it is the spontaneous and unpredicted events, like a virus or accident, the body just does not have enough left in the tank to go anymore. And then there is the risk of the need for additional exposure to radiation for anything from x-rays and CT scans, to God forbid, additional treatment, which I believe I am no longer eligible for should I develop another cancer.
Back when I was being treated, I was often accused of undervaluing the toxicity and the danger of the treatments I was put through. And part of that was because of the way everything was explained to me, ummm, or not explained to me. Sure, I had it in my head, I was going to get through my treatments, and I was going to reach remission. And while I am grateful for these 37 years of survivorship, looking back, at least the last eighteen years, it has not been easy. And perhaps now, I can acknowledge just how dangerous the treatments were that I went through. Maybe it wasn’t so easy after all.
Somewhere in my childhood home, still owned by my family, is the very first essay I had ever written. I was in 7th grade I believe. I put a lot of work and research into it, and justifiably got a great grade on it. My topic was Flag Day. The paper was filled with all kinds of facts, from all the different flags representing our country and the different changes that it went through. Though there are only 8 flags shown in the photo above, there were actually 27 throughout these 250 years. It was not until the 1800’s that there were between 20-30 stars, finally approaching the 20th century (that would be the 1900’s), did we have flags in the 40-count.
Some odd facts, the 48-star flag flew for 47 years (1912-1959) made it one of the longest-serving flags. The 49-star flag lasted only one year when Alaska became a state. And our current 50-star flag became official on July 4, 1960, after Hawaii joined the Union. In two years, barring any other states joining the US, “old glory will become the longest serving flag.
There were plenty of other facts about our flag in that report, about how to display it, and how to care for it, especially when it was “worn,” and how to respectfully dispose of it. I would describe myself as a flag “purist” as a result of that report, so one particular beef I have with today’s “patriotism” are the violations of the United States Code. What are some of the codes?
raise the flag quickly, lower it slowly
the flag is supposed to be flown from sunrise to sundown, unless properly lit
the flag does not touch anything below it (ground, water, etc.)
do not hang in the wrong direction, if hanging, the stars go in the upper left
the flag hangs in the rain only if an “all weather” material
But there are two things that people do that irritate me to no end to the display of our flag. The first, flying it from a vehicle. Sure, according to the US code, the flag is supposed to flow free, but if on a vehicle, it should be flown from the right front end of the car.
But as the photo above shows, the flag is shown mounted on the rear of the truck. This disgusts me every time I see it, and I see this truck a lot. The flag is attached to the back of the truck, sucking exhaust, and being coated with soot. This is probably the 2nd most disrespectful way to treat the flag. Not to mention it is tattered from the violent wind gusts from the speed of the truck.
The most disrrespectful and intentional thing to do with the flag, is wear it as clothing. Sure, everyone thinks they are showing their patriotism by wearing the stars and stripes, but it is actually written to not wear the flag as apparel; clothing, hats, swimsuits. Wear the colors red, white, and blue, sure. But to wear the flag, stars and stripes as swim shorts, soaking up ball sweat and swamp ass as if a patriotic maxipad is just wrong.
Also, one final peeve of mine, the flag serves and represents only one thing. It is not to be used for other causes, such as “thin blue line” or professional sports teams using their team colors. If you need a flag of your own, make one. Hands off the stars and stripes. Make your own flag.
I used to be super involved with celebrating Flag Day until 1998, a day that changed my life forever, the day my grandmother passed away from cancer.
My grandmother was one of the most influencial people in my life, not just from a rearing standpoint (my mother worked 2nd shift as a single mom – so my grandmother handled everything during the week), but she was also my first actively involved cancer survivor I had known in great detail. I lost two of my other grandparents to cancer, lung and gall bladder. My maternal grandmother had been diagnosed with breast cancer. Between mastectomy and chemo, she had beaten it, becoming the first person I had known to beat cancer.
Of course, her story with breast cancer, would be pivotal with decisions I would face with my own battle with cancer, Hodgkin’s Lymphoma. But it was she who inspired me to take on Hodgkin’s with the same courage and stoicism that she did.
However, in May of 1998, she was diagnosed with her second cancer, this time ovarian. Having had my own battle with cancer, I was a lot more sensative to the things that would be said about her case. But I had not doubt, she would take it on and beat it just like she did with the breast cancer.
She had surgery to remove the cancer, and the surgeon told all of us, “he got it all.” That is in quotes for a reason. He continued on that he wanted to have my grandmother undergo preventative chemo, which I did not see as unreasonable. But then he stated the amount he wanted her to do. I could tell something was wrong.
I told my mother, that she needed to talk to her two brothers, something was wrong. If the doctor got all the cancer, and while preventative chemo is not unreasonable to get periforal cells left behind, the amount of chemo the doctor was talking about, was a full treatmant plan. Something was wrong. Of course, my pleas fell on deaf ears.
On Saturday, June 13th, I stopped by my grandmother for a short visit. She was to start chemo that Monday. When I came into the house, she was sitting on her couch, staring off, lost. Off to the left, I could see her treatment books, untouched, not opened even once. My grandmother just sat there, and I noticed she had actually had her hair cut, “high and tight” as if to prepare to lose the hair, something that did not happen for her with her breast cancer. She was deep in thought, real deep.
“Is everything okay Grandma?” I asked.
“Yeah,” she responded, “I just want to get this over with.” I couldn’t blame her, I know how bad chemo is to go through. She continued to just sit there and stare. After a short while longer, I told her I would call her to see how she made out, and went home. That was the last time I would see her alive.
The next day, as I prepared to go to church, as I had activities to run with the church’s youth group, I got a phone call, “your grandmother was taken to the hospital. She has fluid in her lungs.” I said that I would be right there, trusting my fellow parents to handle things, but was told, “she said you were to stay at the church, she knows you have youth group. She will see you later.”
Around 2:30pm, the afternoon of June 14th, the phone rang in the church office. One of my advisors had answered it, and as I looked over toward her, I could see it was an upsetting phone call for her. But then she held the phone to me. My heart sank. As I grabbed the phone, my advisor did all she could to offer “I’m so sorry Paul.”
My grandmother had passed.
I have a strange and baffling defense mechanism that kicked in right away. I went right back to work with the kids. My advisors would tell me they could take care of everything, and I knew they could, but I insisted on staying.
My worst fears came true. My grandmother was worse than what the doctor told us, and I knew it. No one would listen to me. Did my grandmother intentionally instruct the doctor to lie to us? Being a Catholic hospital (my grandmother was not Catholic), did they convince her to go through chemo for the sake of the sanctity of life? Did they tell her that chemo would buy her time to see her other son who would fly in two months later? There were plenty of other signs that my grandmother did know, this would be it for her.
Her taking charge of her fate has done nothing to ease the grief that I still cling to twenty-eight years later. She was my moral compass. I talked to her about everything. Her opinion mattered to me. And if I did something she did not agree with, she did not hold back her opposition, and if I went against her counsel, she stood by me regardless. To this day, I miss her so. How I wish she could see and spend time with her two great-granddaughters. They would simply love her.
I am currently dealing with a medical crisis with my mother, my grandmother’s second child. Unlike the passive approach with my grandmother, expecting my mother and uncles to do more, my mother has me advocating for her now. I lost my father to lung cancer (3rd of six relatives with cancer, all dead). And I am doing all I can to help my mother with this health challenge.
I don’t take the time to reflect on Flag Day like I used to. And because of my grandmother’s passing, I can never forget when it happened. And the only thing at this point in my life, is what comes the week after Flag Day, what I consider one of the most important days of my life, Father’s Day. This is the day that gets me through today, even all these years later. My daughters mean the world to me, and now, as adults are aware of the health struggles I deal with, and are as much a part of my survival as the doctors who care for me.
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
Cleveland Clinic
cardiac needs, especially chemo and radiation therapy effects
Paul's Heart 