Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

09 Mar 2024

Is There Really A Difference?


So earlier this week, I recognized my 34th year “in remission” of Hodgkin’s Lymphoma (in quotes for a reason I will explain shortly). As you can see, that coincides with the “countdown” on my page, now just six years away from what I am considering my next major milestone in my cancer survival, 40 years.

But several who follow “Paul’s Heart” on my various resources like Facebook, Instagram, and TikTok, noticed something confusing, perhaps a typo, or had I calculated incorrectly.

My book is titled, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor.” But I am recognizing 34 years in remission. So which number is correct? Actually, both are correct. In fact, there is a third number to consider. And a cancer survivor would be correct to refer to any of those three to be honored.

The question gets asked often on social media, “what do you consider your ‘survivor’ date?” And honestly, it is up to the cancer survivor what they choose, with three options available; the date diagnosed, the official date of remission (will get into the technicality of this one momentarily), and the date finished with treatments.

I have many medical anniversaries that I recognize each year, of course not all of them good. I never forget those dates. One of those darker dates are coming up next month in fact. But as far as my cancer history, I do remember my actual diagnosis date, well, at least the time period, because I fussed around and delayed and denied getting diagnosed so long (I dedicated a whole chapter in the book to this behavior).

And without spoiling the book, I mentioned an “official” date of remission. This happens usually when “halfway” scans are done halfway through the treatment schedule. If doctors, the treatments, and body have all done according to plan, a patient may hear the word “remission” even before the completion of all of the rounds of treatments. This was an exact date for me. I remember that moment very well when I got that phone call. This announcement creates another situation, and very complicated at that. Patients hear “remission”, and having likely struggled through the treatments they already have gone through, seek to end the rest of the remaining treatments, something nearly all oncologists will recommend to ensure long term remission. As I remind those patients, there is a reason I have hit 34 years in remission, because I followed my doctor’s advice, knowledge, and skills, and finished my treatment plan.

Finally, there is the date that you take that last dose of treatment, whether radiation, or chemotherapy (IV or pill).

So why did I choose to recognize the third option, actually a lower number than years since my diagnosis? I mean, I could do that. In fact, many cancer organizations clearly state that a cancer patient is considered a survivor from the moment they are diagnosed, and that is regardless of the prognosis. For me, this was a time period I would rather forget. While I cannot forget having had cancer, nor would I really want to, I simply do not think about the “when it happened.”

As for when I was declared in remission, that is also a reasonable date to set, but I do not use that date. In the book, I mention I actually hit remission following radiation treatments, but soon after, new disease was discovered (not considered a relapse as it was not in the radiated field). So when I heard “remission” again, this time halfway through the chemotherapy, I wanted to make sure that I was in remission, and that meant waiting until taking my last dose, which happened to be a couple of pills for the last dose (so before anyone fact-checks on March 3, 1990 is indeed a Saturday, I took the last IV dose the prior Friday, February 23rd and had only the pills to finish at that point).

And on March 3rd, it was 34 years since those last pills were taken, what I consider my official “remission” date.

So then why does the book refer to me as a 35-year survivor? Well, because I can. And besides, from an optic angle, the title would have just looked weird saying “34-year survivor” and I did not want to wait another year to publish the book. It took me nearly four years just to get it done.

Whatever date a cancer patient chooses to recognize and celebrate, is up to them, as are their reasons. But no matter if one year, five years, ten years, thirty, forty, or fifty, being a cancer survivor is a big deal. Many of us talk about not wanting cancer to define us, but we definitely find out a lot about who we are, and find out a lot about those around us. And every year that follows is a great one.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
24 Feb 2024

A Father’s Responsibility


I am of Native American heritage. So I receive news, posts, adages, and stories related to history, elders, and of course memes. The other day, I received a post called “A Father’s Responsibility”, written by Levi Blackwolf. While divorcing my daughters’ mother was not part of the plan of my fatherhood, I did all that I could to make sure that I maintained my responsibilities to my daughters. Being an adult child of a divorce, I knew all too well, what giving anything less than 100% as a father, divorced or not would feel like to them, because I went through it as a child myself with my father. And I did not want the same for them. But no doubt, as Blackwolf stated, the moment my daughters were placed in my arms, I knew the responsibility that I had, for the rest of my life.

I have always provided for my daughters. And even during the divorce process, my daughters never “wanted” for anything. Things may not have always been smooth, and issues may not necessarily have resolved as some would have liked, but I do not feel my daughters were aware of any struggles. Things that my daughters were always shown from day one, were security, trust, and of course love. Because of that, they had no reason to ever doubt that things would always work out.

I have read somewhere that a parent spends 87% of their time with their child by the time that child turns eighteen, taking into account daycare and school. With both of my daughters now adult age, and on their own, I have gone from frequent time with them, to visits maybe two or three times a year, and a couple of phone calls a week. We went from watching Disney movies and playing games, to me now helping them to make major decisions that will impact the rest of their lives. Again, as Blackwolf said, it is important for them to know what is important to me, so that they develop the same value of importance.

Unlike my childhood, and I do not fault my parents and grandparents, my daughters know how much they mean to me and how much I love them, because I tell them every conversation that we have. I did not have this growing up myself, only because that is just how it was back then. But I know how much it had an impact on me. And I did not want that for my daughters.

Of course, being a divorced family, number four is critical. Again, speaking as an adult child of divorce, I know that things that I overheard, and the effects it had on my respecting either of my parents. And I guarantee, that my daughters have never heard me say anything negative or non-supportive of their mother. I defended myself against comments when necessary, but I never offered anything other than encouragement and support for them with their mother.

I wanted to, and still strive to be their role model. I have shown them as best as I can what character and reputation are worth. I made sure that they understood decisions that they made can either come with awards or consequences. In either case, no matter how any situation works out, move on.

Whether under the same roof, or from a distance, my daughters know I am always “there” for them. I can admit, I jump literally with any text, phone call, or Facetime opportunity. I know that they know they can count on me.

Their heritage obviously different from mine, is very important to all of us. And although traditions and customs were not as immersive as I would have liked, they have the foundation.

I may not have had the textbook example of parenthood to look up to, but if I follow the wise words of Blackwolf, I can say without a doubt, that I have followed all of those tenets. Only time will tell, when the results of my commitment are revealed.

Posted in Adoption, Education, Family and Friends, Inspired By..., Recreation | Leave a comment
18 Feb 2024

Debunking Three Myths


Up until a couple of years ago, there was a popular game that teens played among each other, as my daughters often challenged me to the game. It was an interesting concept, though I disagree with the one premise, the game did provide something valuable, an opportunity to learn about an each other. It was called “two truths and a lie.” This game is considered an “ice breaker” or conversation starter, and found not only in schools, but also in media such as Parade Magazine, even the Ellen DeGeneres show. You simply state three things, but two of those must be the truth, and the third must be a lie.

As a parent, I thought I had a pretty good edge with my daughters in this game, clearly knowing more about them than they themselves. It turns out that they were pretty good at finding things to tell me that I might be unaware of, one of the favorite topics, food choices. My youngest daughter was real good at getting me on that one.

So with that explanation, these are two of my truths, and one of the myths (I prefer to use myth as opposed to a lie because this is not something I say or believe, but rather what others believe.

  1. I love to attract drama.
  2. I am a shy person.
  3. I am a private person.

Now if you have followed “Paul’s Heart” long enough, it might actually be difficult to tell. But the fact is, two of these things are actually true about me, while the third, is more of a manifestation or a means for someone to justify how they feel about me as a person.

This first one really baffles me.

I have been told by a few people, that I “love to attract drama.” While I have had my share of intense events in my life, I certainly have never gone looking for them. When I ask for examples of the drama they refer to, I hear crickets chirp. I guess they must be comparing their lives to mine as far as things going on. They must be fortunate not to have anything nipping at their heels constantly. And for that, they feel I must go looking for trouble. I don’t.

I will admit however, that I have an unusually calm demeanor in dealing with crisis after crisis. But do I go looking for drama? Absolutely not. This is just one misconception that some people have expressed to me. I can say for certain, that when I face a crisis, I have a defense mechanism that kicks in, removing all emotions, allowing me to think rationally, recognizing that any kind of escalation in my emotions would likely make the situation worse. And so, I do not make it worse. I simply give myself time to think things out clearly and with direction. Ironically, I am a horrible chess player, but in life, I am able to think several steps ahead. But I definitely do not need to add anything more to my schedule demanding more attention of me.

I really do consider myself a shy person. Merriam-Webster defines “shy” as “timid, tendency to avoid, hesitant, or reserved.” Though I express myself through writing, speaking, and other performances, it is the individual one-on-one conversations that I can struggle with.

Through my school days, I kept to myself, often intimidated by the friendships that others had amongst themselves. Constantly moving during my school days did not help me to establish new friendships, only to move again as soon as I would finally get comfortable. As a co-worker, after some time and effort, I found myself being able to interact with moderate comfort. But really? Anywhere that I had a boundary, physical or mental, between me and someone else, is when I felt my most confident and functional. That became obvious as a radio disc jockey in my younger days, in a closed soundproofed room, broadcasting on the radio, no one looking directly at me. Recently, I had a former classmate call me out on social media following a post response which I considered quite neutral and factual, them stating aggressively and actually quite meanly, that I was still the same as I was in high school, still a “&(%*%” (fill in with any derogatory remark). Before I blocked any further access to me from them, I did make sure that those on that particular page were aware, that while I recognized the name, I never knew this person. I literally basically “hung” with maybe a handful of close friends in school. This person and I had never crossed paths because I was so shy.

But my biggest challenge came when I decided to run for a public office, our local school board. I did not prepare myself mentally, that campaigning was more than just saying “I’m running for school board.” I knew that I would have to give speeches, which I was okay with, because there would be separation between me and the audience. My problem came, when my campaign wanted me to attend “meet and greets” (candidates get the chance to mingle among the voters individually), and I was petrified. As a slate of five candidates, running for the five open slots against the five incumbents, I felt invincible. I had others behind me able to bail me out of any situation that I was getting boxed into. Not being a “politician”, I was not prepared for stumbling blocks that could be thrown at me. While I am a big “eye contact” person when I talk to someone, I found this to be a big problem when the eye contact was not returned.

After all of the speeches I have given, articles and stories that I have written, and other performances, I know that I can handle myself in public situations, but I still consider myself a shy person. This is a major challenge for someone trying to promote a book.

I am actually a very private person. I can hear the “I call bullshit” on this one from many. But I really am a private person, or at least, I want to be. And up until my diagnosis of Hodgkin’s Lymphoma, I definitely can affirm that I was a private person. There is one thing that prevents me from that privacy that I make the choice to live by. 

When I finished my treatments, I promised myself that I wanted to give back for the gift of life that I had been given. But as many cancer survivors know, because of treatments, I do not have the option of some of the more popular things I could do, such as give blood or donate organs. I wanted to help. I wanted to inspire. I want to give hope. To do this, that means I have to “share” my experiences, and if you have followed “Paul’s Heart” long enough, I am really quite transparent, some times to my own detriment. This advocacy that flows through my blood, would branch out to other issues such as patient care, cancer survivorship, adoption, public education, and of course, divorce related issues in regard to children. If I were not in the position I am in today, I would definitely prefer to going back to being a private person.

I am going to throw in a bonus truth. In spite of all of the difficult things that I have faced in my life, and continue to deal with, I really am a positive person. Sure, my cancer history, my divorces, and several other things that I have faced, are quite the downers. But I persevere. I come through every time, because I believe I will. All too often, many have counted me out, actually, they depended on me tapping out and quitting. But I don’t. Yes, I have many health issues that consume my attention. Of course, I missed being with my daughters during the divorce period as much as I was prior to the divorce. There are many things that I deal with as an advocate, and yes, they are difficult. But that does not make me a negative person because I make a choice, to deal with everything head on and to support others. I truly believe that things work out the way that they are intended to work out. And as long as I wake up tomorrow to do it all again, that sounds pretty positive to me.

Posted in Adoption, Animals, Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Recreation, Side Effects, The Heart | Leave a comment

Post Navigation

← Older Entries
Newer Entries →