Paul's Heart

Life As A Dad, And A Survivor

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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.”

Fatigue – The Other “F” Word


Fatigue is one of the most common and most frustrating parts of cancer treatment and survivorship. I would even go as far as to say it is harder to cope with than any pain, because pain can be medicated, while fatigue affects nearly every aspect of life – the body, the mind, emotions, and even our sense of identity.

Fatigue can happen at any stage of cancer or survivorship. During treatment, fatigue can be caused by any of the following: chemo and radiation, anemia (lowered red blood cells), poor nutrition, weight loss, sleep disruption, pain, stress, anxiety, and just the overall demands of fighting for life.

Even after treatment, fatigue can still persist. The body needs time to repair the damage from the treatments, and this can take months, even years. Heart and lung problems related to the treatment can contribute to fatigue. Hormonal problems such as with the thyroid, chronic inflamation, depression, anxiety, PTSD, and normal aging are all mentally exhausting.

The common question asked by nearly everyone is “how long does it last?” And honestly, there is no one answer. Many people recover within 6-12 months, while others can take several years, usually battling some sort of intermittent fatigue (good days and bad days). Even 37 years out from Hodgkin’s Lymphoma, I still battle fatigue every now and then, as a long term effect from my treatments and various health conditions that I deal with.

Why is fatigue so hard to get over? Because it is not normal “tiredness.” Sleep won’t make it go away. It can appear suddenly, even with the smallest of efforts. Mental concentration and memory can be hindered, sometimes we refer to it as chemo brain or brain fog. It is frustrating because on the outside, we look fine, and those looking at us cannot understand why we feel so bad, and just can’t push through it.

So, what does help? Doing as much as you can, when you can, if you can, and if not, that’s okay. Stay as physically active as you can with gentle exercise such as walking. Pace yourself. Let me repeat that, pace yourself, alternating activity and rest on your good days instead of overdoing it. Get good sleep. Eat right, I know, the obvious stuff. Don’t be afraid to ask your doctor to look for medical issues, such as anemia, thyroid, vitamin deficiencies, cardiac, or medication side effects. A big one which I occasionally struggle with, manage stress, whether through mindfulness, counseling, or support groups. And lastly, accept that your body’s limits may just be different than before the cancer.

But I want you to listen to this important message. FATIGUE IS NOT WEAKNESS OR LAZINESS! I repeat, just because you are fighting fatigue, does not make you lazy or weak. Fatigue is a real issue, a biological consequence of your cancer and treatment. So much pressure, often futile, to “get back to who you were before cancer” to building a fillfilling life around the body that you have today, many survivors find that once they stop measuring themselves against their pre-cancer energy level and instead learn to work with the current abilities, fatigue becomes more maneagable emotionally as well as physically.

Cringe Comedy – Can Cancer Be Humorous?


(photo courtesy of America’s Got Talent Wiki)

The other night, I was watching America’s Got Talent, and there was a comedian auditioning from a wheelchair. What seemed to take the audience by surprise, was that he made “how he got there” a part of his routine. He had been shot. He told of the response he got from a woman what had happened, when he told her that he got shot at a Halloween party, and her response was, “that’s spooky,” to the shock and dark humor look on the judges faces. He quipped that he was dressed up as Spiderman, but clearly his spidey-senses had failed him. He took several shots at himself over the incident, then turned to the next segment of his audition, applying for jobs that he couldn’t do and then just show up to the interview, such as roofing and rock climbing instructor, saying “this is the consequences if you don’t follow my instructions.” He was actually quite funny, and clearly this helps him deal with his disability.

(image from IMDB)

Brad Williams is a great comic of small stature as he describes himself as fun size like the candy bar. And boy does he have the self-deprecating material. Being caught in a major snowstorm dumping a foot of snow, his fear of tripping and falling and dying because no one would find him. Or his father, lifting him onto the kitchen island and leaving him there as punishment (time out) as a child. Even his wife gets in on it, a black belt in jujitsu, gets into an altercation with a man, only to turn to Brad and say, you defend my honor.

(image from Entertainment Weekly)

And finally, there is Josh Blue, a comic born with cerebral palsy. And yes, the majority of his act is about his disability, and he is hilarious. “There’s nothing more entertaining than watching 12 dudes with cerebral palsy getting off an airplane like some sort of zombie parade.” “I mention that I have cerebral palsy because if I don’t, after a while, the audience is sitting there wondering, ‘does he know…that he has that’?” “I went to NYC and tried to hail a taxi and caught a pigeon (because of the curvature of his hand).”

Have you ever heard of the expression, “laughter is the best form of medicine?” It is a centuries old expression with no clear origin, even mentioned in the King James bible (Proverbs 17:22 (King James Version) states, “A merry heart doeth good like a medicine: but a broken spirit drieth the bones”). Laughter triggers profound, measurable physical and mental changes in the body. By naturally resetting your nervous system, a good laugh relieves tension, boosts your immune system, and promotes long-term cardiovascular health. And then I thought, I have never really heard any comedian make cancer part of their act. Sure, plenty comedians have experienced cancer, but I almost think, would there be too much of a risk of bringing down the audience. Clearly the only ones who would be able to tell jokes about cancer, would be those who have had cancer touch their lives. Well, that would be me, a 37 year survivor of Hodgkin’s Lymphoma. How would I create a comedy bit dealing with cancer, without bringing everyone down with what is commonly referred to as “gallows” humor, yes, that kind of gallow? I think the thing to keep in mind, is that most comedians reflect on their lives with their acts, so this actually is theraputic or cathartic when dealing with themselves. Will everyone who has or has had cancer think the jokes are funny? No. Will at least an irony been seen in the routine? Perhaps. So, I thought I would give it a try. Now I’m sure it looks different on paper, than if you were seeing it live or on video. But who knows… So, here goes.

“How’s everybody doing? My name is Paul and I want to let you know, I’m a 37 year survivor of cancer! Thank you, thank you so much. Now I don’t want you to think that this is going to be a bummer set, hardly. I can hit you right from the gate, my favorite Disney movie was “Finding Chemo, and the most expensive haircut I ever got was chemotherapy. I had heard 8 cancer jokes the day I was diagnosed, and if I had heard another, it would benign. I will let that one sit a little.” Or I can just go into a story.

“When people find out that I had cancer, a common comment that comes out, ‘you’re so brave or courageous.’ Now to be clear, I didn’t volunteer to have cancer, though oncologists love to tell certain cancer patients with certain treatable cancers like mine, ‘if you’re going to get a cancer, this is the one you want.’ Want? What the fuck?!? Nobody wants cancer, it doesn’t matter how successful the treatments are.

Like, do you think I would walk into a doctor’s office, like I was looking for some grey poupon and say, ‘excuse me, do you have anything that involves chemotherapy, radiation, and lifelong anxiety?’ Cancer isn’t a gym membership. You don’t sign up because you want to.

The one comment I find somewhat odd hearing is, ‘congratulations on beating cancer.’ ‘Beating cancer?’ I didn’t beat anything, I survived it. Because if I beat cancer, I wouldn’t still be having medical appointments related to my cancer, in the form of late side effects, 37 years later. To give you an idea how this feels, and you don’t have to have cancer to understand this…

Think of someone robbing your house, and every six months the police call and say, ‘we’d just like to check and see if the burglar came back.’

And let’s talk scanxiety for a second. You don’t wait for the results, you rehearse every possible conversation in your head. Five minutes after the scan you’re thinking ‘I wonder if I should start organizing my garage,’ and the tech says, ‘the doctor will call you.’ Really? How about you just give me a thumbs up or down at least, maybe a smile, something to give me hope for the next couple weeks while I wait for the doctor’s call? You are like one of those people who know the ending of a movie and won’t tell me.’

One of my favorite things to hear is, ‘you look great!’ Which is wonderful, because I actually still feel like shit. But at least I got my money’s worth to make me look that great; modern medicine, nurses, doctors, therapists, pharmacists, family and friends who put a lot in to making me look this good.

The hardest question I get is ‘are you cured?’ I have gotten so accustomed to not using the word cured, even my doctor did not like using it, because of the slightest chance of it returning. It’s kind of like asking someone living in Florida, as I do, so…are hurricanes finished after one blows through? While I hope so, I prepare in case another one comes by.

I will tell you one situation that I did not get used to. Remeber the television show Cheers, when the character Norm would walk in and everyone would cheer his name, yeah, I got that everytime I walked into the oncologist office. Only instead of tasty beer, I got the most toxic of chemotherapy cocktails. I would rather run into everyone at a pizza place or bar.

One good thing that came from my experience, was perspective. Before cancer, I would worry about having matching socks. Now, if they’re both socks, I’m having a great day. People think survivors are fearless. We aren’t. We’re just experienced. We know life can change with just one phone call. We laugh harder now. We hug longer and and say “I love you” more often. We don’t save the good dishware for company.

Cancer took a lot from me. But it also gave me more appreciation for boring days, a beer with a friend, sunsets, hearing someone snort they laughed so hard. The moments don’t seem so ordinary anymore. They’re the jackpot.

So if you’re here tonight because you’ve survived cancer – or you’ve walked beside someone who has, give yourself a little credit. You made it through some of the hardest days imaginable. The fact that were here laughing together tonight? That’s not denial. That’s victory.

Thank you…and remember… the best revenge against cancer is living a life that refuses to let it have the last laugh.

Thank you for coming and goodnight.”

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