Paul's Heart

Life As A Dad, And A Survivor

What My Daughters Know Now That They Didn’t Know Then


(photo with my daughters, then 3 and 5 years old, as I dealt with my first known late side effects from my treatments for Hodgkin’s Lymphoma 18 years earlier)

There are few conversations more difficult for a parent than trying to explain a serious illness to a child. Cancer is frightening enough when you are the person hearing the diagnosis. But when children are involved, the fear takes on another dimension. Suddenly, you are not only trying to understand what is happening to your own body, you are trying to decide how much of that reality belongs in the world of a child who may not yet have the emotional tools, vocabulary, or life experience to understand it.

I was fortunate in one very important way when I was diagnosed with Hodgkin’s lymphoma in 1988: my daughters had not been born yet. I never had to sit across from a small child and say, “Daddy has cancer.” I never had to explain chemotherapy, radiation, remission, or the possibility that treatment might not work. I never had to watch a child try to understand why her father was losing his hair, getting sick from treatment, disappearing into hospitals, or suddenly looking different.

At the time, I did not yet understand that cancer would still become part of my daughters’ childhood. It just arrived years later. The cancer itself was gone, but its consequences were not. The treatments that helped save my life in 1988 eventually became part of my family’s story through the late effects they left behind.

One of the first major moments came when my daughters were still very young. I experienced what is commonly called a “widow maker” blockage in one of the most critical arteries supplying the heart. I ultimately needed emergency life-saving bypass surgery. My daughters were five and three years old. How exactly do you explain something like that to children that young? How do you tell a five-year-old that her father has a life-threatening blockage in his heart and is dying? How do you explain surgery without terrifying her? How do you reassure a three-year-old when you cannot honestly promise that everything will always be okay?

Those are the moments where parenting becomes extraordinarily delicate. Children need honesty. But children also need security. And sometimes those two things feel as though they are pulling in opposite directions. There is a difference between hiding reality from a child and protecting a child from information they are simply not developmentally prepared to carry.

When my daughters were young, I tried to make that distinction carefully. They needed to know that I was sick. They needed to understand that doctors were helping me. They needed to know that I might be in the hospital. They needed reassurance that they were safe and that they were loved.

What they did not necessarily need were the statistics, the surgical risks, the frightening possibilities, or the complicated medical explanations running through the minds of the adults around them. A child should not have to carry an adult-sized fear simply because the adults are carrying it.

Over the next dozen years, those conversations continued. And they evolved.

There was never one single moment when I sat them down and explained the entire history of Hodgkin’s lymphoma and everything that followed. Instead, the information came in pieces, because life came in pieces.

A new heart problem.

Another procedure.

Another diagnosis.

Another test.

Another specialist.

Another reminder that treatments from decades earlier can continue echoing through a survivor’s life long after everyone assumes the cancer story is finished. Each time something happened, I had to make the same judgment parents dealing with serious illness make every day:

How much should they know?

How much can they understand?

How much will help them feel informed rather than frightened?

And how do you answer their questions honestly without giving them burdens they are too young to carry?

The answers changed as they got older. At five years old, an explanation might be simple. Daddy’s heart needs to be fixed. At ten, there can be more detail. At thirteen, the questions become more complicated.

By high school, children understand enough about illness and mortality that the conversations can become much more direct. Eventually, something changes. You are no longer protecting small children from the hardest details. You are talking to young adults who want the truth.

Today, both of my daughters are adults. There is no simplified version anymore. They know my health history. They understand what Hodgkin’s lymphoma was. They understand the radiation and chemotherapy I received in 1988. They understand that surviving cancer did not mean walking away untouched. They have watched the consequences unfold over years. They know about the heart disease, the surgeries, the procedures, the medical complications, the tests, the uncertainty, and the long-term surveillance that comes with being a decades-long cancer survivor. They have also been involved in many of the events as they actually happened, through video calls, seeing with their own eyes that I was fine, following whatever procedure I was going through.

And now they understand my latest issue with lymphedema as well. With the possibility of cancer in my life again, now confirmed there is not, they know what is happening. They understand what doctors are investigating. They understand the questions surrounding why it developed and what it may mean going forward.

That level of openness did not happen overnight. It grew with them. And I think that is one of the most important lessons about talking to children when serious illness enters a family. The conversation should grow with the child. There is no perfect script. There is no single age when everything suddenly becomes appropriate to discuss. There is only the judgment of a parent trying to balance honesty, reassurance, maturity, and love.

Looking back, I also realize that children often understand far more than adults think they do. They notice the hospital bracelet. They notice whispered conversations. They notice when someone is worried. They notice when Dad suddenly cannot do something he normally does. They notice when appointments become frequent. They notice when the adults in the room are pretending everything is normal.

Sometimes trying too hard to hide illness can actually make children more frightened because they sense that something is wrong but have no explanation for it. That does not mean they need every detail. It means they need truthful information in language that fits their age.

Something else changes when those children become adults. They begin to understand parts of the story that they could never have understood when they were young. They understand how serious some of those moments actually were. They understand why certain surgeries were necessary. They understand why I may have protected them from certain details. And they understand that cancer survivorship is not always a clean line from diagnosis to treatment to cure.

Sometimes survivorship is a lifetime relationship with what happened. For my daughters, Hodgkin’s lymphoma was never something they witnessed firsthand in 1988. But in another sense, they have lived with it their entire lives. They have lived with its aftermath. They have seen what radiation and chemotherapy can sometimes leave behind decades later. They have experienced the phone calls, hospital visits, procedures, recoveries, setbacks, new diagnoses, and uncertainty.

Cancer entered their lives without ever being diagnosed during their lifetime. That is one of the strange realities of long-term survivorship. The disease can be gone while its fingerprints remain everywhere. As a father, I have always wanted my daughters to understand what is happening without allowing my health to become the center of their lives.

That balance matters to me. I want them informed. I want them prepared. I want them to understand my history. But I also want them living their own lives, pursuing their own dreams, and not constantly waiting for the next medical problem involving their father.

That may be one of the hardest parts of being both a parent and a long-term survivor. You want your children close enough to understand you. But you never want your illness to become something they feel responsible for carrying.

Today, I am grateful that we can talk openly. There are no coded explanations anymore. No softened versions. No carefully chosen childhood vocabulary. They know the story. They know what I survived. They know what came afterward. And they know what I am dealing with now. I know when I look at both of my daughters, I know they are telling me “you got this Dad, it’s what you do, every time. And you will get through this one too.”

The conversations may have changed over the years, but the motivation behind them never did. Protect them when they needed protecting. Tell them the truth when they were ready for it. And make sure, at every age, they knew one thing above everything else:

“They were loved far more than they ever needed to understand the medical details.”

Hurry Up And Wait!


Back in 1988, when I discovered a lump in my neck, I experienced several doctors rushing with intent to get me officially diagnosed with cancer. One doctor, included with his introduction to me, and no tests performed, was already giving me a lecture on Hodgkin’s Disease, now called Hodgkin’s Lymphoma. Unfortunately, I was in such strong denial it took nearly two months, along with the clear blood tests and CT scans, until I finally agreed to undergo the only procedure to correctly diagnose me, a biopsy. The whole time each and every one of them was stressing about the importance of getting on this sooner than later to give me the best chance at remission. My stubbornness fortunately did not hurt me, as here I am 37 years later. But the point was taken, when it comes to cancer, the sooner found, the sooner diagnosed, the sooner treated, the better the odds.

One would think I would have learned my lesson about “listening” to my body. I didn’t. Because in April of 2008, after experiencing severe tightness in the left side of my chest, I FINALLY got it looked at, by completing a nuclear stress test. Unlike my cancer diagnosis, I was not in control of what was occurring. As I got onto the treadmill, and the tightness began, the technicians in the room reacted, stopped the test, and had me wait to see a doctor. Within 36 hours I would find myself having a an emergency bypass for a “widow maker” level blockage of the main artery to my heart. Here the medical workers reacted to what they saw immediately, and I am still here to write about it. Let me tell you how unnerving it is to being told by your cardiologist how close I came, “it wasn’t a question if you were going to die, but when.”

Surely I would have had to have learned my lesson about recognizing symptoms in a timely fashion. Unfortunately, I have not. And it keeps happening. Septic pnuemonia was the diagnosis in 2012 when I did not realize I had an infection, and was taken out of my house on an ambulance stretcher at 3am. Or in 2019, when another major artery to my heart was blocked 90%, again, the stress test stopped, and be evaluated by the doctor.

Yes, I have been lucky. In spite of my ignorance and stubbornness, I have had the right doctors to deal with my health crisis. Which is what makes my current situation so frustrating.

It has now been over two months that I noticed my right arm and hand swollen, and still no answers. It took a month and a half to get a particular scan completed, a PET scan. That scan was done ten days ago. And here I wait.

I have told many that I do not believe in “putting the carriage before the horse,” but I have developed a lot of medical knowledge over my cancer survivorship. I know what I am dealing with, and I know what they suspect, and what it could possibly be. And I am prepared for whatever comes.

Remember at the beginning, how I wrote about timeliness being so important? What happened to that urgency? Like I said, I know the possibilities, and of course, time is going to make a difference. But for now, time has stopped. I can’t even go forward. Even the most simplest of diagnosis, and I still cannot get anything done until it is confirmed.

Even before the technology, I have never had to wait more than a day or two for answers. And now, the technology gets it to me within hours, at least until this moment. There is a known factor contributing to this, the collapse of our healthcare system creating a shortage of those in charge of reading these all important scans. But that does not help me. I am now going through my second weekend without an answer.

Several of my fellow survivors have offered encouragement with a belief I already have, “if there was something important, I would have heard sooner.” And that makes sense, as I have recieved that kind of attention before. The problem is, my background back in 1988 is so similar to what I am dealing with right now, the lack of certain symptoms with the current symptoms I am dealing with, is triggering the most dire of flashbacks for me. And like I said, until I get my report, if it ends up being my worst fear, I cannot do anything until I get that answer.

If just simple lymphedema, then likely just drainage massage. But if the two enlarged lymph nodes are any factor, the question becomes why, and it is pertinent that no massage be given, for fear of pushing “whatever” the lymph nodes contain, cancer or infection, into the lymph system, spreading. Or if there is any other source of the retention requiring further testing. So, not only am I just waiting, I am not getting better, and I could be in for further study with no resolve in sight.

There used to be a joke about someone who went to the doctor with an injured arm, and asked the doctor if they would ever be able to play the violin, and the doctor assured them they would. And then the patient told the doctor that was good news as they had never played it before. Well, I can play the guitar, and piano, but not currently as my fingers are two swollen for dexterity. Even as I type this story, it is with only one hand, fortunately my dominant hand. But there are many things I realize that I do with my non-dominant hand, and I need to be able to do that again.

I know I won’t hear anything yet tomorrow, Sunday. But man am I hoping for anything come Monday, day 12.

Is This Thing On?


A couple of months ago, I did a comedy routine around cancer. Yes, cancer. To be clear, I did not make fun of having cancer, but found ways of dealing with some of the situations with some humor. Of course, if you were someone who has never had cancer, besides being fortunate, you may not have been able to “get” the jokes. Well, I am back at it again. This time, I am dealing with the issue with my right arm and hand, lymphedema, swelling through my lymph system (as opposed to blood caused by the heart – which I also deal with). Again, imagine if you will, I am referring to the swelling in one arm, not both, and not only how uncomfortable it is, but awkard. While I wait for my doctors to come up with a plan, they say laughter is the best medicine, so here goes…

So I have this new condition in my survivorship, called lymphedema. It is when lymph fluid cannot flow through the lymph vessels properly because of some sort of restriction. Looks painful. Feels weird. I have currently lost about 75% of use of that right side appendage because of this issue. But not all is lost. I have my sense of humor.

First, there is no need to worry, I am not turning into the incredible hulk, my right arm just got the wrong memo. My left hand looks normal while my right hand looks like it has been hitting the all-you-can-eat sodium buffet. Both my arms are like if they were in a long distance relationship, clearly having stopped communicating. I call my left hand Paul, my right hand Paul XL.

One of my goals working out was to have bigger arms. Evidently the universe only heard half of that request. Where I live in Florida, people pay thousands for asymmetrical fashion. My lymph system gave it to me for free. If I am going out for dinner, my left arm says “business casual”, but my right arm says “professional wrestler.”

So to understand, one of my arms and hands are retaining fluid, the other is just retaining its dignity. If I were a boxer, my two hands would be in different weight classes.

I’m saving money when I go to sports events currently. I don’t need to buy a large foam finger. Nature provided me one.

A swollen hand walks into a bar. The bartender said, “holy crap buddy, you buying drinks for all five of those sausages?” I can still give someone the finger while I am driving, which is important in Florida. The bad news is, it just looks like a bratwurst.

Yes, this is another one of those late side effects from my treatments for Hodgkin’s Lymphoma 37 years ago. We survivors call treatments, “the gift that keeps giving, long after you’ve lost the receipt.” Nothing a cancer survivor needs to hear is, “you know what this person needs? A freaking sequel.” So surviving cancer isn’t enough with everything else I have gone through survivorship, I now have the limited-edition oversized hand.

Late side effects from treatments are basically your old cancer treatments drunk-texting you decades later. “Hey! You awake?”

Having one hand larger than the other isn’t all bad. I can use one for everyday use, and the other for intimidating people. I might just say I have a regular arm, and a Costco-sized arm. I keep waiting for this swelling to go down, but my body keeps telling me to lower my expectations.

I have tried wearing a compression sleeve, also known as arm spanx. That has not helped. It just made my arm feel vacuum-sealed. There is enough fluid in my right arm and hand to qualify as waterfront property. If my arm and hand get any bigger, I will be able to claim it as a dependent.

The upside to the swelling, nobody asks me to reach into narrow spaces anymore. One hand says “handshake,” the other says “medieval weapon.” It’s like if my lymph system was put in by a plumber, it was done by the lowest bidder.

So that is all I have for my over-agressively confident right hand and arm. I never asked for Popeye’s forearm, especially just one of them. It looks like I was thumbwrestling myself, and my right hand ate my left hand. I finally understand what “thick-skinned” means, unfortunately, literally. Of course if I wanted to brag, when asked why one is bigger than the other, I could just respond “you should see the other guy.” I could just become a Bond villain, I already have the wierd hand.

Thank you all, you’ve been great!

Now back to watching my phone.

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