Paul's Heart

Life As A Dad, And A Survivor

Life Of A Girl Dad


I am waiting for the arrival of my two VIP’s for our annual Father’s Day weekend. So I figured I would distract myself til they land. In my head, I hear the music, “it’s the most wonderful time of the year,” which would normally refer to the winter holidays, but for me, as a long term cancer survivor, the most wonderful time of the year for me, is Father’s Day. Out of our 22 years together, we have spent 21 of them with each other, the only one missed, not my fault, as during the divorce, they were not brought to the airport, and therefore I did not get to see them that one time. But I have had 21 great weekends with them overall.

Unable to have biological children of my own due to my cancer treatments, I was not disuaded from what I always wanted, to be a Dad. And through the adoption process, I became a Dad, twice, to two of the most wonderful daughters a Dad could ever hope for, in fact, I love being referred to as a “girl Dad.”

I am extremely close to both of my daughters. I have made it a priority that they can trust me, confide in me, and come to me for support, any time of the day. The love between my daughters and I is unconditional, not transactional. There is no great feeling.

When you plant a tree or a flower, you water it every day. Some days you notice it growing more than others, and some days you barely notice, but it still grows. I have literally thousands of photos of my daughters from the days they were placed into my arms til today (and more photos will be taken). I will never forget how I had the priviledge watching them grow into their own people.

My daughters have allowed me to see the world through fresh eyes, their perspectives. They have introduced me to things before they came into my life, I would never have done. They have also taught me patience in how I react to negative impulses around me, because my response matters how they see me react.

One of the biggest impacts I want to have on my daughters at this point in their life, and I have set the example from day one, is being their example of how they should be treated, and how they should want to be treated. They will both give kindness and respect, but they also will expect it in return. They have seen me set the example for boundaries and healthy relationships.

I have grown myself as my daughters have grown. As I said, because how I react, how I process, and the decisions I have made over the years, mattered when I had extra eyes watching and learning.

From their first steps and through all of their school and extracurricular achievements and successes, I could not be more proud of who they have become. Life for them has not been easy given my health history, and I clearly would not still be here today if it were not for them. Many of our memories are not even seen in photos or big events. I remember many of our car rides and conversations, our jokes, a lot of our meals out, and so many phone calls. But the one thing that matters to me even more today, that both my daughters will still pick up the phone to call me, just to say “Hi” and “I love you Dad.”

I will definitely miss those early days of imagination and pretend. I must admit, I got lucky without having any makeovers, it full honesty I was never asked, but would have done it. Having long hair, my one daughter has been known to braid my hair out of boredome. I did my share of singing and dancing with them as they participated in their activities. As they got older, their honesty and bluntness also increased, especially when it came to Dad’s fashion limits. And then, there is the loss of “coolness” which I accepted gracefully, but found it could be restored, as their adult friends, in learning my background, had re-declared that I was cool.

I know the most pressure I put on myself, is that I am a problem-solver. I think I can fix everything. The key is to realizing that my daughters don’t always want me to give them a solution, they just need someone to listen, hear them out, to understand what they are going through, and to support them.

The hardest thing as a Dad, has been the times, watching them get hurt, whether it be a scraped knee, a broken friendship, a disappointment, a heartbreak, or even any kind of setback. The need to fix these things is real. I have done pretty good letting both my daughters go, to become independent. Bittersweet. They make their own choices, occasionally ask for my input, and will either recognize I was right, or they will take their own leap of faith. Either way, I let things up to them.

I will never hear their two-year old voice again, watch them play with their dolls. Special events in their lives are now dwindling in frequency to more of adult milestones, such as relationships and become parents themselves some day. But the one thing I have been clear of from day one, I want better for my daughters than what I had. My abilities have changed over the years with my health and divorce, but my effort and focus remains the same, I want them to have better. Every Dad should want this.

By now, most of you have seen this horrific video on social media, of a Dad, transporting his two daughters from Florida to Oklahoma for his custody period, making a stop by a convenience market. His daughters needed to use the restroom. No responsible father would take his daughters into the men’s room any more than a mother would take her sons into the men’s room. Dad’s have a difficult enough time, whether it be for the bathroom, bath time, buying hygeine products, or any other situations. I know. I have been there and done that.

This young Dad, not having the option of a family bathroom, knocks on the door of the women’s room, learning that it is empty, and proceeds inside with his daughters for them to use the bathroom. That should be the end of the story. It wasn’t.

Some stupid redneck jerk from Mississippi is also in the convenience store with his wife, apparently in a wheel chair, opens the door of the women’s restroom to help his wife inside, to discover this Dad and his daughters inside. He begins an argument in protest of a man being in the bathroom, though clearly this jerk was going to do exactly the same thing to assist his wife. Anyway, back to the events.

This jerk proceeds to call the police, saying there is a man in the women’s bathroom, and they need to come right away. To his credit, the Dad stayed cool, in spite of the fact that his one daughter was in tears from the awful things being said by the man about her father. A worker at the store, tried to console the girls, obviously distraught. As the police arrived, the situation ended, and for his trouble, the troublemaking busybody, was fined for wasting the police officer’s time, as he should have been punished.

As a girl Dad, I have seen my share of difficult situations, especially as a single Dad, always having to make sure to protect themselves against false accusations, especially when it comes to bathroom related tasks and such. Even when married, I was expected to take my daughters to the bathroom. Hell, I remember one moment during potty training, the first “poo” and the celebration that erupted after. I changed my share of diapers, gave baths until they were old enough, helped them pick out cloths, and as they got older, stood guard outside bathrooms, when they were old enough to enter by themselves.

What this jerk did was so out of line, and I hope Karma continues to reward him. To the Dad, he did an awesome job with the entire situaiton. And I truly hope he has as wonderful a visit with his daughters as I expect to very soon.

In Preparation Of Father’s Day


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.

Comparing Apples To Watermelons


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.

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