Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

A “Paul’s Heart” Christmas Carol


Every December, I am faced with the same situation as my birthday falls this month, renewing any or all of my driving information. My license is good for a number of years, as is my handicap placard, but my registration gets renewed every year, even though I have the option of multiple years. I choose not to do multiple years, because if something were to happen to my car, and I would need another, that would be a second registration I would have to pay. This scenario played out a few years ago, when my car was T-boned. The DMV, Department of Motor Vehicles does not give you a pro-rated refund for the time you no longer have the car, nor do they give you credit for the time left towards a replacement car.

There are very few places that you will wait longer in a line for service than the DMV; lines for rides at Disney, the post office in Naples during Christmas season, and a customer service line for any airline following the cancellation of a flight. But with a fully charged cell phone, I felt I could keep myself entertained for a potentially long afternoon, waiting to renew all three of my driving needs. Before I dove into my phone, I just looked at all of my paperwork to make sure everything was in order. For some reason, I immediately honed in on the “expiration dates”, or how long each would stay valid. This is when my mind started to take me down a path I try not to think about. Will I still be around when these things need to be renewed again?

As a long term survivor of Hodgkin’s Lymphoma, dealing with a plethora or multitude of late developing side effects, I live my life holding a “Pandora’s Box” underneath a “Sword Of Damocles.” I know most if not all of the health issues my body deals with in regard to the late side effects from my treatments. The only thing I do not know, is when each will become a problem to be dealt with immediately. One problem gets dealt with, another problem needs attention. And really, as bad as all this is, as long as I have skilled doctors who listen to their patient, me, and the knowledge I have about what I have gone through, I have managed to get through everything.

But there is a darker side to my survivorship, and shared by many other survivors, a stronger recognition of our mortality. Because long term survivorship is still a relatively unknown field in medicine, though medicine is beginning to catch up, unfortunately, not fast enough for us. With the internet and social media, fellow long term survivors can share their experiences with others, allowing us, in a way, to teach or train doctors how to handle patients with our needs by learning from survivors. In the circles I associate with, there are well over a thousand members on one of our social media groups alone, located all over the world.

Many of us survivors develop close bonds to others, even meeting other survivors in person. I can tell you there is no other feeling, that seeing someone in person, who is experiencing similar to what you are going through and the understanding that is shared and felt.

I mentioned mortality earlier. Most of the other survivors I know, we all know, that regardless how long we have survived our Hodgkin’s Lymphoma, while a great number of survivors may be fortunate to never have to deal with any late developing side effects from their treatments like I have, there are many who have. And then there are those who are completely unaware as to the mysterious things that are happening, unable to put two and two together, to connect the dots between declining health and late side effects. Because they just do not know, and were never told it could happen.

In any case, if we are lucky, we have a doctor that has knowledge and understanding of our unusual health history. We are even luckier if the health issue de jour that we are dealing with, can be dealt with and healed. And then there are times, that our luck turns south, and the prognosis is not good for a recovery. And then, there is the everyday dangers that even healthy people face if we overcome our health issues, crossing the street, driving a car, slipping in the bathtub, also known as a sudden accident. The dangers for us long term survivors is that our bodies have been through so much trauma, we are already at a disadvantage for a doctor trying to save our lives, with our deteriorated body conditions. The most glaring of the facts of our mortality, while the survival number of years is in the decades, that does not mean well into our years of life. In fact, as one fellow survivor once wrote, many do not reach past the age of 60. Combine that with the longevity of my paternal side of the family with an average age of 55 years old, and I am more than aware of the odds against me.

I have laid the groundwork. I am at the DMV. I am aware of my unique mortality. I am approaching another year older, another year older as a cancer survivor. While I wait for my number to be called, for the DMV that is, not the mortality, my mind begins to wander. I can visualize someone, looks like my late father. Acknowledging a conversation that we had with each other when he was alive, he reminded me in this thought, that I was a survivor, there is no such thing as giving up.

My father was absent most of my childhood, yet he was able to remind me just how “good” my life turned out to be. No, it was not a “Norman Rockwell painting,” but I did okay with what I had and who was not in my life.

And then we began talking about my early adult years, in particular, the years that I fought Hodgkin’s Lymphoma. We talked about my later years, with all the health struggles I had faced, but he would remind me, all the lives I had touched, including his as he faced his own battle with lung cancer. The fact was he reminded me, I had done so much in my life, not just for me, but for so many others.

And then the image faded away. In fact, not just my dad, but all the things we had talked about, were all gone. While I did not have a “grim reaper” in this moment of wandering, it was clear where my mind was. I am between two age medians, my paternal average of 55 years of age, and the seeming equivalent to climbing K2, reaching age 60 as a cancer survivor of over thirty years.

Tomorrow is my birthday, turning 57 years old. The awareness of my mortality is both a blessing and a course. So far, having the doctors that know how to deal with the issues from my late side effects, has kept me alive. Constant surveillance keeps my health from getting to the life and death moment as happened in 2008. As they say, what is happening to me cannot be reversed, but it can be slowed down, and managed (to a degree).

But I have a knowledge of so many other survivors who have passed, and while many have passed as a direct link to their late effects, there are also others who passed away due to an otherwise common event.

Finally, there will come a time, that all the things that doctors have done to save my life over the decades, will need to be done again. My history and treatment of Hodgkin’s Lymphoma, made every one of these original surgeries high risk for complications and death. Having to do any of them again, the risk is even greater of a complication.

No, I do not need that ghost of future standing in front of me. And if I had the chance, I would give him the push into the grave, because in my heart, I am far from ready to have this thing called life, end. One time unthinkable when this all began, getting to watch my daughters grow, I have seen them come to the end of high school, and begin college. And there are more milestones that I want to see that involve them. And at this point, the way I feel physically, I believe I will get to see those days.

But then there is a point when I say, no more birthdays, the I will not get older. No more new years so that I will not pass another year of survivorship. Just let me ride this thing out to watch my daughters do what I have dreamt their whole lives to do.

It is important that anyone reading this understands, I do not go through my life, worried or thinking I am going to die every day. Far from it. Each morning, I wake with the intention of seeing another day. I have so much I want to do. It is the reality of the knowledge I have, that just reminds me, I am not the one in control. To quote the lyrics from the Bon Jovi song “Live Before You Die,”

“I made mistakes I caught some breaks. But I got not regrets. There’s some things I don’t remember, but one thing I don’t forget. When you’re young you always think the sun is going to shine. One day you’re going to have to say hello to goodbye.
Shout it out let someone somewhere know that you’re alive.
Take these words wear them well, live before you die.
You learn to love to live. You fight and you forgive. You face the darkest night. Just live before you die.”

A Familiar Conversation


I am pretty sure, that had I recorded the conversation, all I would have had to do was press “rewind,” and then “play,” and the exact conversation would have been heard.

With my older daughter’s 1st semester officially in the books this week, my younger daughter is in the middle of her second semester of her senior year. As I always do, I am busy planning the next visits so that they can be booked following their Christmas visit with me.

The conversation is the same, turning adult age, aging out of the custody agreement, I leave it up to my daughters to decide if they want to make a particular visit or not. I know, and respect that they may have plans, especially in that senior year of high school. While I have the conversation with my younger daughter, there is a slight twist to the next several visits. They will likely be without her older sister joining her, as not only do they have different social priorities, they obviously have different school schedules.

I had my “Cats In The Cradle” conversation with my older daughter, familiar to the Harry Chapin song:

“Well, he came from college just the other day
So much like a man I just had to say
‘Son, I’m proud of you, can you sit for a while’
He shook his head and then said with a smile
‘What I’d really like, Dad, is to borrow the car keys
See you later, can I have them please’

And the cat’s in the cradle and the silver spoon
Little boy blue and the man on the moon
When you comin’ home son
I don’t know when, but we’ll get together then, Dad
You know we’ll have a good time then.”

She must budget her time off between myself, visiting her mother, her friends, and her boyfriend. Through her college years, this means I am likely to see her, twice a year, along with any Facetime conversations. I am actually handling this pretty well.

My attention turns to my younger daughter. We are all anxiously awaiting to hear from the colleges that she applied to, and scholarships she has already applied for. That hard part is done. And then came the speech.

“The time is going to fly by now. After Christmas break, you have five months left of your secondary education. And the time is really going to go fast. You cannot afford to put anything off, because you are going to be getting communications from the college that you decide to go to, as well as tasks that need to be completed before you graduate. And then there are things that you and I still need to get done. There will be little time.”

I encouraged her, “if you don’t believe me, ask your sister if what I told her, the same exact thing, if what I said was true.” Of course it was.

The difference between the ending of the song, and where the chapter with my daughters and I end, is this is yet another chapter in my cancer survival that I did not expect the chance to see. And the milestone of seeing both of my daughters having graduated from high school will be realized. I could not be more proud of both of my daughters. And sweeter than the longevity of my survivorship of Hodgkin’s Lymphoma, is having gotten to watch both of my daughters become the women that they are.

From The Beginning, “Over The River…”


Thanksgiving with my Grandmother. I certainly have many memories. For most of my childhood, I lived with my Grandmother and her sister (pictured on the left), and come Thanksgiving Day, that meant the most wonderful smell in the world. Unfortunately, that smell began wafting up to my bedroom early in the morning, as the two of them began to make the holiday meal to feed a total of ten of us. Our kitchen table on sat eight of us, so that meant…

the dreaded “kids” table, usually a fold up card playing table. We had another full dining area, with another dining table, but since there were only two kids, the folding table is where we were put. Regardless of being in a different room for the dinner, I still got my hands on my favorite, the dark meat of the turkey, mashed potatoes, sweet potatoes, stuffing, and something called “stuffing from the bird.” This is when you take some of the already mixed homemade stuffing (it was never boxed), and stuff it into the turkey as it cooks. It was the same stuffing that was being served separately, but cooked inside the carcass, the “bird stuffing” basically is marinated with the flavoring of the turkey, an entirely different stuffing flavor, and SO GOOD! And I cannot forget the homemade pumpkin pie and pumpkin custard.

Eventually I would get promoted to the full table, which by then, was able to squeeze ten around, so perhaps the kid table had nothing to do with the capacity around the main dinner table.

In high school, Thanksgiving would be delayed for us to be able to attend high school football games. The dinner was ready once I got home after the game. I discovered there was a big difference with smelling the dinner being cooked all morning, and walking into the wall of the aroma of the feast to come.

Fives years after my high school graduation, Thanksgiving would never be the same.

In October of 1988, I had an itch on the back of my neck. I had discovered what felt like a huge lump, much larger than what would have been left by a mosquito. I was confused by the mass, as I was a relatively healthy kid growing up. I made a call to the doctor, a general practitioner, who made the diagnosis of a swollen lymph node due possibly to the common cold. He prescribed an anti-inflammatory drug called Naprosyn and recommended I take a break from exercising to give my body some rest it likely needed.

Two weeks went by, and the swollen lymph node did reduce considerably in size. Back to the gym I went. As I am prone to do, I resumed back to the exercise routine I had been doing without easing back into it. The next morning, I believed I had paid for that judgement, as I had developed such a pain in my left armpit, whenever I stretched out my arm. Clearly, I had overdone it.

I had spoken to as co-worker about my new “injury” and how it was likely I was going to miss our city league basketball league game. I mentioned my frustration with having just missed two weeks of the season, and being left-handed and unable to shoot or toss the basketball. He had recommended his physician as being good with sports injuries, so I decided to give him a shot.

I gave him the synopsis of how I got to his office. I noticed a lump. Took a medicine for it. Took a break from exercising. Started exercising. Now my left arm hurts. Simple. Cause and effect, a sports injury.

The doctor examined me and was concerned about the lump more than my arm. The lump had increased in size again. I grew frustrated with the doctor as I was not there to see him about the lump, which had been getting better. I was there because I hurt myself weightlifting. He did some bloodwork, which showed nothing. And I recall throwing in his face, “of course, I know there is nothing wrong with my blood. I have a sports injury.” I would repeat that sentence several more times over coming weeks. The doctor was making a recommendation for me to go see a hematologist/oncologist. Now, if you do not know those terms, do not look them up. I will tell you what they are soon enough. I just asked the doctor, “do they see sports injuries?” and he replied no. But I needed to get that lump looked at.

I stormed out of his office. Two days later I had begun receiving phone calls from that doctor, leaving me voice mails, insisting that I follow through with his recommendation to see the specialist, who was not a sports doctor. I walked over to my co-worker, and asked what this doctor’s deal was, why was he bugging me? He told me, “my doctor is a good guy. If he feels something is of concern, I would trust him.” Looking back at that particular moment, would be a life-changing, life-saving conversation. I made the phone call to that specialist the next day, and made a humble phone call back to my co-worker’s doctor, to inform him that I was following through on his recommendation. Subliminally, I was not doing it because there was something wrong. I was doing it because I wanted to prove to this doctor that I was the one who was right.

It was a rainy, dreary Tuesday, just before Thanksgiving. I pulled in front of the clinic, and there was a sign in the front yard with the doctor’s name that I was going to see, along with the title “Hematology/Oncology.” Still not recognizing the titles, only knowing it had nothing to do with sports, I walked inside, soaking wet from the pouring rain. I was handed at least a half dozen papers to fill out which I thought was a waste of time for a sports injury. Truth be told, having never really been sick, I had never had to fill out all of these forms. As a kid, my mother did it for me.

When I finished, a nurse had taken me back to an office, not an exam room, but an office. Moments later, in walked a man who resembled actor Jeff Goldblum, The Fly version, not Jurassic Park version.

The doctor sat down at his desk, took a glance through my folder. There was no way I was prepared for next. “Hodgkin’s Disease is a very curable form of cancer, especially when it is caught early.” I felt like the cartoon characters when they are caught shocked or in disbelief.

I honestly do not remember another word he said from that point on. I know that I argued that I cannot possibly have cancer. I had a sports injury. He had not even examined me. Who the Hell did he think he was? I have never considered myself an angry or violent person, but for the first time in my life, I felt pure rage. I could not have gotten any further away from what I felt was wrong. I do remember ending up in an exam room eventually, but not a single word of what was said. Literally, I likely only heard “blah blah blah blah blah” from that point on.

A few days later, I had begun receiving calls from the prior doctor, urging me to go forward with additional bloodwork and a biopsy. Biopsy? I do not remember that discussion, but as I said, I tuned everything out the minute the other doctor began talking about cancer.

I went through that Thanksgiving weekend in 1988, with my mind in turmoil and denial. But two more “2nd opinions” later, I had finally been convinced that I needed to undergo the biopsy, if for nothing more than to prove I was right and every doctor I had seen was wrong. Spoiler alert… I was wrong.

Every Thanksgiving after that, this memory gets triggered, the exact scenario playing over and over on an endless loop. I am not able to stop it, or as some have suggested to simply “get over it.” The next Thanksgiving, 1989, I was undergoing chemo for a relapse of my Hodgkin’s, and for the first half of the 1990’s, all I could think around Thanksgiving, “is this the year it is going to come back?”

Simultaneously, as I struggled with my survivorship, the dynamics of our family traditional Thanksgiving dinner began to change. Talk had begun about the bond that at least held us together on this day, my Grandmother. We soon began to realize that without her, we would likely no longer gather together. And in 1998, my Grandmother passed away from her 2nd battle with cancer, this time, ovarian cancer. And just like that, we no longer spent any holidays together with each other.

In the beginning of the 2000’s, if there would have been any hope of me finally getting a grip back on the holidays, it was going to be with the arrival of my daughters. But by then, I had developed a mindset as an employee and provider, that I worked every holiday offered by my employer. That in spite of having two young impressionable children who of course would have loved to spend time with me, it was felt that it was more important for me to bring home the extra cash for the family. We could spend time with each other after I got home.

And there you have it, why holidays mean nothing to me, especially around this time of year. Because even though I consider myself blessed in over 32 years of survivorship, I still carry the trauma of what happened 34 years ago.

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