Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “November, 2021”

Thanksgiving Times


I have always told my daughters to “stay young,” and enjoy their childhood.

In a previous post, I mentioned the difficulties that I have with holidays. I wanted to make sure that my daughters did not experience my grief and struggles, especially during this time of year. I really do not have many memories of Thanksgiving as an adult, other than my diagnosis of Hodgkin’s Lymphoma, and a few photos of my daughters with arts and crafts that they made in school for the holiday.

As a youth myself, I do have a few memories that I am able to recall, fond ones in fact.

There was the annual Thanksgiving Day high school rivalry football games, played early Thanksgiving Day chilly mornings. Usually there was a bonfire and pep rally held the night before, followed by a school dance.

There was also the “powder puff” flag football game where the girls got to play the football game, and yes, the boys were the cheerleaders.

And still, before we got to the official NFL turkey day game, many of us got together to play a game of football ourselves, a tradition from childhood, thru adulthood trying to prove we still could do it.

This time of year also meant the return of holiday specials that we looked forward to, the same ones, year after year. These timeless treasures are still so entertaining as they were fifty plus years ago.

But if there is one memory that I do miss about Thanksgiving from my childhood, is a particular item on our annual menu, stuffing. Not just any stuffing either.

Stuffing cooked in the bird! There is/was nothing like it. It is pretty much unthinkable these days with all the awareness of the hazards of this delicacy. But back in the day, we had four particular starches on the Thanksgiving table, mashed potatoes, sweet potatoes, homemade bread stuffing (a Pennsylvania Dutch recipe, simply the best!), and stuffing from the bird (this was actually the regular stuffing, just stuffed into the carcass of the turkey, as well as chickens at other meals).

This is the part where you either think this is the best side dish in the world, or you turn your stomach. The stuffing cooks inside the turkey as it cooks, absorbing the flavoring of the turkey into it. Think of it no different than adding stock or gravy for flavor. Now of course, the problem is, the turkey before being cooked, is raw meat, laden with bacteria that can lead to an unpleasant way to spend the holiday.

BUT…

As the most popular side dish back in my childhood, so popular it was always the first thing put on plates, there was only so much of it available, which fit inside the bird. It did not matter that my grandmother made to complete dishes of regular “filling” (what we called it), it was the “filling from the bird” that everyone wanted, and it was likely, that depending how many were sitting at the table, someone might be left out without any on their plate. But the flavoring of the “filling from the bird” was like no other.

Besides the fact, that we ate turkey leftovers for days, another way to turn over the left over “regular” filling, my grandmother would then make “potato pancakes”.

I have a lot of these memories, alas, they were all prior to my grandmother passing. As many families experience, losing such a prominent matriarch of a family, families often struggle to remain committed to these family holidays. As was our situation. Add in my diagnosis in 1988, I never looked forward to this holiday again.

With the arrival of my daughters, I did my best to once again, embrace the holiday. While the holiday itself still meant nothing to me (I worked every holiday, something I regret and resent), it did signal the beginning of the next season, Christmas, and traditions that would follow such as decorating, and of course getting their Christmas tree. I will save these memories for their own post.

There is a reason I tell my daughters to hang on to their childhood as long as they can. It only lasts approximately eighteen years. That is not a lot of time to have all the fun and memories you can pack in.

Happy Thanksgiving everyone.

Poster Child For The American Heart Association


The caption for this photo may be a little hard to read, or even recognize. But this photo is a forty year old photo of me, in my senior year of high school. You just have to take my word for it, unless you can actually read the blurry print accompanying the photo, but it is me. The significance of this photo as it turns out, is pretty strong, especially if you believe in fate.

How many times have you been somewhere, and donations are being collected for a specific cause such as a homeless shelter, perhaps someone who lost a home in a fire, funeral expenses, anything really? Some may think that spare change or a few dollars will not make a difference and not put anything in, or perhaps they will. The truth is, you never know the impact it has on the benefactor. Unless someday, you end up in that situation yourself.

So, here is where the photo came from, my senior yearbook from high school. Forty years yesterday in fact, was to be a “jump rope-a-thon” to raise money for the American Heart Association. It was to take place that morning, from 9am to noon (basically two periods and my lunch time). Teams of up to six were to participate. Usually this event has a pretty good turnout.

And then, one parent became a killjoy, contacted the school district administration to complain about missing classes, and a district administrator then, put pressure on the coordinator at the high school to change the date and time from Friday to Saturday. Well, you guessed it. The fundraiser was cancelled due to lack of interest to be done on a Saturday morning.

I had been raised with the mentality to make a difference wherever I could. And though I was unaware of anyone in my family who had ever had to deal with heart disease in any form, I felt this was too important not to happen. So I approached the gym teacher and said that I would still like to do the “jump rope-a-thon,” solo (as my team was not available with the proposal I was about to make).

As it was my senior year, I had two study halls at the end of my day. Add an extra hour after school, I offered to jump rope, for the entire three hours as the event would have been conducted, that same day, only in the afternoon. Other than jumping rope in gym class, I have never trained or endured any extended time jumping rope. But I was a kid of 17 years of age. How hard could it be?

With a five minute break every half hour to either drink water, or use the bathroom, I completed the three hour challenge/fundraiser, raising $170. But that was $170 more than what the AHA was going to get thanks to the efforts of a whiny parent. Yes, I said that. Considering today that kids miss classes for all kinds of activities, even “tolerated” “skip” days. Yes, as a parent, I know about those as I have older teenagers.

Anyway, getting back to my effort, I did not give it any further thought. I felt good about what I did, and that it would at least benefit someone. As I got older, I would have relatives who would be diagnosed with heart disease. My grandmother would require a pacemaker. My father would suffer a major heart attack. I never forgot about that day that I jumped rope for three hours, grateful that hopefully my efforts helped research in treating cardiac patients.

Now for the kicker. I never expected to be one myself.

As a result from being treated with an extreme dose of radiation (4000 grays, you can look it up, that is bad) for Hodgkin’s Lymphoma, combined with the toxicity of chemotherapy, damage to my heart developed over the next eighteen years.

This is a diagram my new doctor, a cardiologist, was using to explain what was happening to me. Cumulative damage from radiation therapy, over time, had caused enough scarring to block the left main artery to my heart. Though his note said 80-90% blocked, it was confirmed 90% once inside. This resulted in an emergency double bypass to save my life before having a heart attack referred to as a “widow maker.” I do not need to explain to you how serious that is, because the name speaks for itself. You die from this.

It would be nice, if that is where the story ended. The doctors left the one marked “RCA” alone, as it was “only” 30-40%, and expected my body to fix itself, with proper diet and exercise. Not shown here, is the report that also showed I had an issue with two, eventually three valves inside the heart. Again, they too would be assumed to recover on their own with a lifestyle change.

Unfortunately, there is no lifestyle change that can be made to reverse these late developing issues from radiation and chemotherapy treatments. Eleven years later, I would have my second heart surgery, which even looking at that word “second”, I could never have imagined having one, let alone another. Remember that “RCA”? Well, in 2019 it reached the 90% threshold. Fortunately, this was correctable with a stent.

You see, one thing about us Hodgkin’s survivors who have been exposed to the extreme treatments that we were, we carry extreme risks later in life, with corrective surgeries, especially open heart surgeries. One open heart surgery is risky enough, let alone a second one, with risks being bleeding to death, to difficulties healing.

A warning came along with this stent. One of those valves, discovered back in 2008, was nearing severe need to be replaced, likely to occur within years of having the stent replaced. And a couple years later, that valve needed to be replaced, my third heart surgery.

There are no guarantees how long each procedure will last, and as of right now, patients in my situation are not usually candidates for heart transplant because of all the risks. It is quite jarring to see the words “heart failure” written on your medical record, and only recently, were the words “radiation induced”, a crucial distinction and finally a recognition of a condition as a result of extreme levels of radiation exposures and toxic chemotherapies.

I would like to think that is the end of the story with my heart surgeries. I know that it will not. Part of the close surveillance that I am under, because it is important to follow up all of the repairs, that the bypass is still working, the stent is still open, and the valve operating as planned, these things are not permanent. Meaning? I am likely to undergo more heart procedures in the future. I do not know when, just that it will happen. The good news is my bypass is still doing great (I was told 10-15 years) as I am near my limit on that, with the bypass still holding at 40%! Stents and valves are not permanent, expectancy is usually ten years or less, I have a ways to go on both of those.

For now however, I am riding my new “feeling” of health for as long as I can.

A Never Ending Cycle


In the movie “Free Guy”, starring Ryan Reynolds, Reynolds’ character wakes up each morning, with the exact scenario, saying “good morning” to his goldfish, Goldie. And he goes through his entire day repeating everything the same, the next, the day after that, and so on. The movie, very reminiscent of Bill Murray’s “Groundhog Day,” but with a very modern twist.

When November comes around, I experience a similar cycle, or at least my mind does. You see, in November, of 1988 to be exact, I was diagnosed with Hodgkin’s “Disease”, now called Hodgkin’s Lymphoma. I will never understand the relevance to whether it is called disease or lymphoma because both are bad, and really, neither word relates to being what it actually is, cancer.

Anyway, my repeating cycle is this, my diagnosis was confirmed just before Thanksgiving. Over the next several months, I underwent diagnostic procedures to figure out just how bad my cancer was. That’s right, over several months means this was over the holiday season.

Up until this point in my life, I looked at Thanksgiving as a time to get together with family, and the Christmas holiday for gatherings and gift giving, joyous times. But in 1988, that all changed. I was angry. And though not an actively practicing Christian, I still had my faith, which would be challenged, as we were supposed to be excited to celebrate the birth of Jesus. But I was at a crossroad. Wanting to rely on my faith, I approached my minister, to help me understand why I had to go through such a trial at one of the most beautiful times of the year. Instead, this “minister” blew me off, saying he had no time for me as the Advent season was upon us, and it was a very busy time in the church. I was on my own, turned away from a representative of the God I am supposed to believe in. I needed help. But there was no time to give me any help.

This is where I can definitely say, I lost my love for not just this holiday season, but for all holidays. I was left to struggle alone with my emotions and questions in a time of year that was all about “getting together.” But in 1988, cancer was still not a word discussed freely, or at least without the look of pending doom. I was alone.

Now, as many are frequent to offer this advice, “but Paul, that was only one year, just get over it.” Word of advice, cancer survivors REALLY HATE THAT EXPRESSION! But that holiday season, and because I was still going through treatments, the following holiday season, my love for holidays was gone. There were opportunities that I could have gained those feelings back, but without the spiritual guidance, the motives were without feeling and passion. I would just go through the motions of the holidays, so that others could enjoy the holidays.

Every year, November would roll around, and I would find myself thinking of this anniversary, wishing I could change the way I thought of the holidays.

I truly thought that once my daughters came into my life, my feelings would change about the holidays. My daughters were innocent, and the joys and expressions each Christmas day were truly genuine, how could someone not feel that, want that? As I had done prior to my daughters, I found myself needing a distraction from the thoughts that annually were in my head, “this is the time of year, the worst days of my life,” which of course I could no longer claim, especially blessed with my daughters, but this feeling was there.

I found myself working EVERY holiday, not just Christmas, but all holidays, including Father’s Day, putting off the morning gift giving until I got home from work. All the other holidays and my birthday, soon meant nothing to me again. And even with divorce, in an attempt to keep conflict to a minimum when it came to custody, I surrendered ALL holidays to their mother, instead opting for days close to the holidays.

My daughters do not know about the struggles I have during this season. All they have known, when they were young, I was working when Santa delivered their presents, and older, after the divorce, they will see me after the holidays. My daughters know about my health struggles because of my cancer treatments from 33 years ago, but very little about the beginning of this journey.

That’s right, it was 33 years ago this month. I officially count my survivorship at 31 years, recognizing the day of my final treatment as my anniversary date, others their diagnosis date. 33 years is nothing to sneeze at. I have gotten to witness so much not just in the advances of treating cancer from better diagnostics and treatments, but my gosh, I could not be more blessed to have two of the best children anyone could ever hope for.

There is still hope, and I really do want to be able to, learn to love this time of year again. One of my daughters promises “lots of grandchildren.” In 2008, I was near death with a heart condition caused by my treatments, and I never thought I would see my daughters even graduate, yet, here I am. I have goals that at one time were unthinkable, and as I approach each milestone, my hope continues to grow. With one daughter graduating this school year, the other the next year, my milestones are simple, college education for them, hopefully marriage, and yes, grandchildren. I am that close, and I can see it.

My life changed in November of 1988, there is no doubt. My cancer does not define who I am. But I am who I am today, because of my cancer. I am eternally grateful for four decades of cancer survivorship and I will be grateful for hopefully the years to come. And it is with that hope, and the milestones I am looking forward to, that perhaps I might find that peace finally in November and December being “the most wonderful time of year.” Better late than never.

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