Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Politics”

Flag Day, Remembering My Grandmother


(photo created with ChatGPT)

Somewhere in my childhood home, still owned by my family, is the very first essay I had ever written. I was in 7th grade I believe. I put a lot of work and research into it, and justifiably got a great grade on it. My topic was Flag Day. The paper was filled with all kinds of facts, from all the different flags representing our country and the different changes that it went through. Though there are only 8 flags shown in the photo above, there were actually 27 throughout these 250 years. It was not until the 1800’s that there were between 20-30 stars, finally approaching the 20th century (that would be the 1900’s), did we have flags in the 40-count.

Some odd facts, the 48-star flag flew for 47 years (1912-1959) made it one of the longest-serving flags. The 49-star flag lasted only one year when Alaska became a state. And our current 50-star flag became official on July 4, 1960, after Hawaii joined the Union. In two years, barring any other states joining the US, “old glory will become the longest serving flag.

There were plenty of other facts about our flag in that report, about how to display it, and how to care for it, especially when it was “worn,” and how to respectfully dispose of it. I would describe myself as a flag “purist” as a result of that report, so one particular beef I have with today’s “patriotism” are the violations of the United States Code. What are some of the codes?

  • raise the flag quickly, lower it slowly
  • the flag is supposed to be flown from sunrise to sundown, unless properly lit
  • the flag does not touch anything below it (ground, water, etc.)
  • do not hang in the wrong direction, if hanging, the stars go in the upper left
  • the flag hangs in the rain only if an “all weather” material

But there are two things that people do that irritate me to no end to the display of our flag. The first, flying it from a vehicle. Sure, according to the US code, the flag is supposed to flow free, but if on a vehicle, it should be flown from the right front end of the car.

But as the photo above shows, the flag is shown mounted on the rear of the truck. This disgusts me every time I see it, and I see this truck a lot. The flag is attached to the back of the truck, sucking exhaust, and being coated with soot. This is probably the 2nd most disrespectful way to treat the flag. Not to mention it is tattered from the violent wind gusts from the speed of the truck.

The most disrrespectful and intentional thing to do with the flag, is wear it as clothing. Sure, everyone thinks they are showing their patriotism by wearing the stars and stripes, but it is actually written to not wear the flag as apparel; clothing, hats, swimsuits. Wear the colors red, white, and blue, sure. But to wear the flag, stars and stripes as swim shorts, soaking up ball sweat and swamp ass as if a patriotic maxipad is just wrong.

Also, one final peeve of mine, the flag serves and represents only one thing. It is not to be used for other causes, such as “thin blue line” or professional sports teams using their team colors. If you need a flag of your own, make one. Hands off the stars and stripes. Make your own flag.

I used to be super involved with celebrating Flag Day until 1998, a day that changed my life forever, the day my grandmother passed away from cancer.

My grandmother was one of the most influencial people in my life, not just from a rearing standpoint (my mother worked 2nd shift as a single mom – so my grandmother handled everything during the week), but she was also my first actively involved cancer survivor I had known in great detail. I lost two of my other grandparents to cancer, lung and gall bladder. My maternal grandmother had been diagnosed with breast cancer. Between mastectomy and chemo, she had beaten it, becoming the first person I had known to beat cancer.

Of course, her story with breast cancer, would be pivotal with decisions I would face with my own battle with cancer, Hodgkin’s Lymphoma. But it was she who inspired me to take on Hodgkin’s with the same courage and stoicism that she did.

However, in May of 1998, she was diagnosed with her second cancer, this time ovarian. Having had my own battle with cancer, I was a lot more sensative to the things that would be said about her case. But I had not doubt, she would take it on and beat it just like she did with the breast cancer.

She had surgery to remove the cancer, and the surgeon told all of us, “he got it all.” That is in quotes for a reason. He continued on that he wanted to have my grandmother undergo preventative chemo, which I did not see as unreasonable. But then he stated the amount he wanted her to do. I could tell something was wrong.

I told my mother, that she needed to talk to her two brothers, something was wrong. If the doctor got all the cancer, and while preventative chemo is not unreasonable to get periforal cells left behind, the amount of chemo the doctor was talking about, was a full treatmant plan. Something was wrong. Of course, my pleas fell on deaf ears.

On Saturday, June 13th, I stopped by my grandmother for a short visit. She was to start chemo that Monday. When I came into the house, she was sitting on her couch, staring off, lost. Off to the left, I could see her treatment books, untouched, not opened even once. My grandmother just sat there, and I noticed she had actually had her hair cut, “high and tight” as if to prepare to lose the hair, something that did not happen for her with her breast cancer. She was deep in thought, real deep.

“Is everything okay Grandma?” I asked.

“Yeah,” she responded, “I just want to get this over with.” I couldn’t blame her, I know how bad chemo is to go through. She continued to just sit there and stare. After a short while longer, I told her I would call her to see how she made out, and went home. That was the last time I would see her alive.

The next day, as I prepared to go to church, as I had activities to run with the church’s youth group, I got a phone call, “your grandmother was taken to the hospital. She has fluid in her lungs.” I said that I would be right there, trusting my fellow parents to handle things, but was told, “she said you were to stay at the church, she knows you have youth group. She will see you later.”

Around 2:30pm, the afternoon of June 14th, the phone rang in the church office. One of my advisors had answered it, and as I looked over toward her, I could see it was an upsetting phone call for her. But then she held the phone to me. My heart sank. As I grabbed the phone, my advisor did all she could to offer “I’m so sorry Paul.”

My grandmother had passed.

I have a strange and baffling defense mechanism that kicked in right away. I went right back to work with the kids. My advisors would tell me they could take care of everything, and I knew they could, but I insisted on staying.

My worst fears came true. My grandmother was worse than what the doctor told us, and I knew it. No one would listen to me. Did my grandmother intentionally instruct the doctor to lie to us? Being a Catholic hospital (my grandmother was not Catholic), did they convince her to go through chemo for the sake of the sanctity of life? Did they tell her that chemo would buy her time to see her other son who would fly in two months later? There were plenty of other signs that my grandmother did know, this would be it for her.

Her taking charge of her fate has done nothing to ease the grief that I still cling to twenty-eight years later. She was my moral compass. I talked to her about everything. Her opinion mattered to me. And if I did something she did not agree with, she did not hold back her opposition, and if I went against her counsel, she stood by me regardless. To this day, I miss her so. How I wish she could see and spend time with her two great-granddaughters. They would simply love her.

I am currently dealing with a medical crisis with my mother, my grandmother’s second child. Unlike the passive approach with my grandmother, expecting my mother and uncles to do more, my mother has me advocating for her now. I lost my father to lung cancer (3rd of six relatives with cancer, all dead). And I am doing all I can to help my mother with this health challenge.

I don’t take the time to reflect on Flag Day like I used to. And because of my grandmother’s passing, I can never forget when it happened. And the only thing at this point in my life, is what comes the week after Flag Day, what I consider one of the most important days of my life, Father’s Day. This is the day that gets me through today, even all these years later. My daughters mean the world to me, and now, as adults are aware of the health struggles I deal with, and are as much a part of my survival as the doctors who care for me.

Goodbye Old Friend, Again


“Hello darkness my old friend. I need to give you up again.”

Coca-cola and I go way back. In fact, nearly forty-five years ago. I delivered the morning newspapers as a teenager, and during the winter it was especially cold, and halfway through my route, I would duck inside a foyer of one of the buildings to get warm. Counter to that effort, there was a soda vending machine just outside the building, and of course, being Winter, that meant the soda would be much colder than the temperature set for the machine, giving the soda a much stronger appeal and taste. My beverage of choice, Coke. And it was good, real good. From there, I was hooked.

In the battle of Cola’s, Pepsi, RC, A-treat, or any other generic, Coke has always been my preference. It was always about the flavor. As an adult, it became more about the boost I would get from the caffeine and sugar. I regularly burned the candle at both ends, and in the late 80’s I would rely on “NoDoze” caffeine capsules to get me through.

In the 21st century however, Coke became a regular part of my diet, easily replacing the recommendation of drinking 8 glasses of water a day. I was easily drinking two to three liters of Coke a day. For the most part, my body was handling all the sugar, or at least it was assumed because it was never checked.

Then in 2008 things changed. Due to late side effects from my treatments for Hodgkin’s Lymphoma, I had to undergo an emergency double bypass, which then led to a major change in my personal care, medical surveillance.

Drinking as much Coke as I was, had a major impact on two blood tests, my A1C would eventually climbe to 9.0 (not good) which is type 2 diabetic level, and my thyroid levels ended up all wonky, which they were bad enough from my radiation treatments. Additionally, with my heart as bad as it is, all factors considered, I really need to quit drinking Coke.

(photo courtesy of ChatGPT)

I have tried multiple times. I see a date ahead, bloodwork. They are going to be looking for my A1C and my thyroid. I have three months to get my numbers corrected, and in theory, if I quit drinking the Coke during that period, they should be happy. Notice, I said “they.”

The problem comes, after my blood test. Two things generally happen following this test, I spend time away with my daughters, which means eating out a lot, or I am facing a stressful period that I need some extra energy. I cannot due energy drinks because of my heart. In both situations, the answer is simple and easy, not just fall off the wagon, I do a backflip triple flare summersault off of the wagon.

The numbers usually come back reflecting the cessation of Coke. I don’t usually lose any weight, something always pushed, in fact, this last time, I actually gained 10 pounds in 4 days. I was definitely not happy about that. I was not about to let that discourage me. I have a goal, three months from now, when I am do for my blood test.

I don’t do drugs, smoke, or drink alcohol, so Coke is really my only vice. And whether my attitude about my health, all of the issues I have from my cancer treatment late effects, it actually makes little or no difference, I am still trying.

I am pretty sure it won’t last, once August rolls around. While Coke is not “literally” addictive in the way nicotine or alcohol is, it can feel addictive, mainly because of its ingredients. Caffeine can cause dependence as a stimulant, craving it. And yes, I get headaches and fatigue hits when I stop. Then, there is the extraordinary amount of sugar in Coke which activates the brain’s reward system with a full blast release of dopamine, making you want more. And then, it is just a matter of habit, at meals, on work breaks, and as in my case, a pick-me-up. I am literally conditioned to associate comfort and energy when I drink Coke, and I end up drinking it again.

For now, I keep trying. But it is so hard right now as once again, I am battling some extreme stress, not sleeping well, and want a Coke.

June National Cancer Survivors Month


June is National Cancer Survivors Month. For me, that makes 37 times I have recognized this celebration, as a survivor of Hodgkin’s Lymphoma. I was diagnosed at the age of 22 in 1988.

June recognizes and honors all cancer survivors, support families, hopefully inspire newly diagnosed patients, and to raise awareness of ongoing challenges and issues facing cancer patients, unbelievable some still since four decades ago. Cancer survivor is broadly defined on purpose, to not leave anyone out, as ANYONE diagnosed with cancer from the moment those words get uttered “you have cancer” through the rest of their life.

There are three phases of survivorship: acute, extended, and long-term. If you have followed me here, you know all about the long-term survivorship already. But the other two phases do not get a lot of attention.

The acute phase of survivorship is the time from diagnosis through active treatment. This includes all the testing, staging (determining how bad the cancer is), and of course the treatments; chemotherapy, radiation therapy, immunotherapy, surgery, etc..

The extended phase, though with treatments having ended, can be just as difficult to navigate through, at least emotionally. It is during this part, that survivors have follow up visits to make sure the cancer is still in remission. It is also important to keep an eye out for any late developing side effects that may, not will, develop. And then the hard part, after not having any control over your life for so long, now is the time you get to do just that, get back to living your life.

Getting back to living our life…sounds easy, doesn’t it? All we want is to get back to normal, some sense of normality. It wasn’t that long ago, we remember what it was like. So why is it hard to get back to normal? And this is where I think healthcare really fails cancer patients, even after forty years.

It is not good enough just to say “OK! You’re in remission! Treatments are done! Go ring the bell and get on with your life!” For the record, there were no bells to ring back in 1990. The truth is, going through cancer is not just traumatic physically, but emotionally as well. And while your life will get back to normal, it is going to be a different normal, a “new” normal. And don’t be surprised as you go through life, that even your “new” normal changes even further. Oncologists need to include this emotional preparation of life after cancer, as part of the treatment plan.

But then there are also those in our personal life. And this is where the “honoring survivors” come into play. What we go through, or have gone through, is one of the most difficult and scariest parts of our lives. If we had a broken leg, you would send us a card. If we had a heart attack, maybe send some flowers. When it comes to cancer, those around us are more likely to disappear, for any number of reasons, but I am willing to guess it has to do with a fear of us dying. But do you know what our biggest fear is? Being alone in one of the most difficult times in our lives. No one to talk to. No one to “do us a favor” like running to the grocery store. No one to just share their day, a much needed distraction from what we are facing. No one offering to just take us for a ride to get us out of the house, away from the only the thought we have. No one to help us even attempt to feel some sort of normalcy. Just, left alone with our thoughts, about cancer.

And finally, our survivors who must never be forgotten, those who have passed before us. In my family, I have lost six members to cancer. Friends and acquaintenances I have lost dozens, well over a hundred, some never even getting to hear the word “remission.” But they were all survivors, having to face something none of us ask to do, cancer.

So, how can you honor someone who has had cancer, or someone you lost to cancer? Participate. There are plenty of events and organizations, such as Relay For Life and Stand Up2 Cancer that you can personally get involved with, and dedicate your participation. You can share stories of those you know as cancer survivors. Of course, if able, donations of gifts, not just money, but plaques, benches, trees, anything that is a physical reminder. And yes, you can donate money to cancer research or patient support organizations. Organize a scholarship or charitable fund. Volunteer.

And perhaps the best way to honor a cancer survivor, never forget them.

I want to finish this post with a great quote that I keep on my desk, that I read every day, my mantra if you will, from the late great sports caster Stuart Scott, a cancer survivor himself: “You beat cancer by how you live, why you live, and in the manner in which you live.”

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