Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Happy Father’s Day

If there is one thing in my life that I will say defines it, it is Fatherhood. All I have ever wanted to be, was a Dad. Along the way, I have been challenged in the most extreme ways from cancer to divorce, but nothing has stood in the way of the unconditional and never-ending love of my children. My daughters are the reasons behind every decision that I make, and the drive to keep moving forward.

Historically, prior to the arrival of my daughters, Father’s Day was just another day in June.

This is one of three photos that I possess with my father from childhood, none occurred on or around Father’s Day. In fact, I do not remember spending any time with my father for Father’s Day. To be clear, this was his decision, a result of the divorce from my mother. Another reason for my sadness of Father’s day, my grandmother passed away the week before Father’s Day in 1998. And then, my Father was memorialized on Father’s Day weekend in 2014 after passing from the effects of lung cancer. Admittedly, this was something that I requested.

Even with my daughters, Father’s Day seemed to take a back seat, as with other holidays, because I was expected to work. I had a 40-hour/week job, but if offered overtime, so I was expected to work it, even on Father’s Day, the one day that should have been about me with my daughters. I was supposed to just be grateful for the few hours I had to spend with them once I got home from work.

To be clear, there is no one more important to me, than my daughters. When faced with emergency open heart surgery back in 2008 due to late effects from the treatments that cured me of my Hodgkin’s Lymphoma, it was the fear of never seeing them again, them having the possibility of experiencing what one of their close friends experienced, losing a parent, that really pulled me through.

Unlike my father, I was there for my daughters for Father’s Day, with the exception of three, two of those were beyond my control, and the other was purely for everyone’s health and well being. A process with my divorce led me to miss two Father’s Days. And in 2020, Covid19 and all the uncertainties left me no other choice, than to keep my daughters safe, and that meant not having them travel to see me. Those three years, came and went, each time, leaving me with a broken heart, no other options available.

But just after the last time that I missed spending time with my daughters for Father’s Day, I made sure that they knew every Father’s Day, they are my priority. They are the reason I wake up every day. They are the reason I look forward to every tomorrow.

This Father’s Day is more than just having lost last year’s time together. For years, I have had friends prepare me for the time when my daughters would get older, and the likelihood that visits with them would be less frequent because they had their own things to do a la Harry Chapin’s “Cats In The Cradle”. In all honesty, for my one friend, he got much less years than I have in regard to that situation. My daughters know how important Father’s Day is to me, as important if not more than, our visit at Christmas. Father’s Day is the day, I get to celebrate and cherish all of the memories from the thousands of photos I have taken of my daughters over the years, opportunities that have lessened from the demands of the teenagers.

My daughters have a biological father, somewhere. But I am the only Father they know. And whether they are six, eighteen, or forty two, they know I will always expect this day to be ours, together.

Yes, their mother and I are divorced, and unlike my Father, I made the conscious decision, to stay in their lives, to be active in their school and interests, to be one of their two main role models, to guide them with their decisions toward their future. Each and every day, I make an attempt to reach them, through various means from phone, to Facetime, to text, a reminder that every day to them, that I am thinking about them. That I miss them. That I love them.

There are so many fathers that I do hear from, that for any reason, are not getting that opportunity this year, perhaps for several years now. For some, it is their first year without either their children, or their father. My heart breaks for them, because I understand the many different issues surrounding the emptiness of this holiday as an adult child of divorce, a divorced parent, as well as someone who lost their father.

The time with each other is only temporary. It can be a few years, or decades. But it is only temporary. That is why it is important every year, on this day, you celebrate if you are able to still do so with each other. And if you are in the unfortunate situation, having been alienated from your father or from your children, you DO NOT EVER give up! Time will heal. I got that chance to do that with my father before it was too late.

I do not know what Father’s Day will look like in 2022. But after having lost Father’s Day last year due to Covid19, this year will be more special than ever to me and my daughters.

Needless to say, as few photos there are of my father and I, my daughters will never have that problem.

Happy Father’s Day.

The Last Of The Simple Times

It started out with a simple post coming across my news feed. “Missing the gang!!!!” It was posted by a friend from decades ago, reconnected through social media. I initially responded with a “thumbs up” just to let her know, that as I was not sure what “gang” she was referring to, there was a gang that we were a part of, and her post had reminded me of them all.

In fact, of that gang that I refer to, I have reconnected with nearly everyone from the days that started my life and hobby as a disc jockey, beginning on college radio. I cannot help when I see posts from them, but immediately click back to 1984 when it all started. It has been amazing to see all of the different directions our lives have taken. We are all forty years older now, yikes, sorry for that reminder. It does not take long, for us to remember what we were all like together back then.

And then comments began being posted. They were from the other jocks in our group. I still do not know what the meaning was behind the post, but clearly, others felt similarly. Suddenly, I found my mind going back to the mid 1980’s, hanging out in one of the two studios, or partying on a weekend. Great friends. Simple.

I do not know much what each of my friends had experienced in the years after that. I see our heavy metal guy extremely (and gracefully) looking grandfatherly, another is in another country on the other side of the world, one is “trapped” in a much earlier time enjoying revolutionary re-enactments, and the stories go on.

Most if not all, are aware of the health issues that I have struggled with, but are also aware of where I am in life, with two beautiful daughters who mean the world to me. While my daughters have seen me DJ live in the past, they still have a hard time grasping my voice coming from the radio long ago.

But one of the questions that often comes up on my cancer/survivor pages, “do you remember life before cancer?” And I actually do. I am not even referring to the fact that I was engaged to be married, having a great time, partying and travelling, looking toward a future. I do not consider this part of my life “before cancer,” because it was during this time, the rug got pulled out from underneath me.

No, it was during my years at WXLV, 90.3fm, on the campus of Lehigh County Community College in Schnecksville, PA (that was the entire tagline as I recall), where not only my life as a DJ began, but where I met and made some great friendships, friendships that I know, just as happened a few years ago with one of those fellow jocks, a reunion with any of them, would bring back nothing but good memories. To me, these are friends that, sure, we would acknowledge and sorrow or crisis we may have faced, but what we shared with each other back then, we would be right back to supporting each other with that same level of friendship back in 1984.

I am not denying where we are right now in 2021. But I am saying that the time back in 1984, a simpler time, and being able to reflect and remember those in my life at that time, reminds me, that who I was back then, still exists, because I can still see it.

Craig, Roxanne, Matt, Dan, Mickey, Jack, Brian, you all remind me of that simpler time, my life before cancer. Something that will always be important to me.

Understanding Versus Knowledge

A couple of days ago, marked twenty-three years since the passing of my grandmother (pictured on the right). I remember the day it happened in great detail from the conversation with her early that morning to the fateful call I got in the afternoon. She passed away from complications of ovarian cancer, her second fight against cancer, with breast cancer remission as of twenty-two years earlier.

She was the first person I would know personally to survive cancer. My grandmother would be my role model and inspiration as I faced my own battle with cancer, Hodgkin’s Lymphoma. Beyond cancer, I considered my grandmother to be my moral compass. As I often tell my daughters if the time comes that they face a difficult decision that could result in consequences, to ask themselves, “what would my Dad think of my decision?” as to how they should make their choice. I was the same way with my grandmother.

And while her passing still has left me with that counsel that I miss, it took several years for me to come to terms with it, I did finally accept decisions that my grandmother made prior to her passing.

First, a few facts. I was trained and certified in “peer to peer” counseling through the American Cancer Society. I have been working with cancer patients nearly my entire survivorship through various methods of direct referral all the way to social media. One of the main tenets I was taught right from the beginning, you never tell a patient, that you “know” what they are going through, even if you have experienced the same cancer itself. The truth is, you may have an idea of the emotions and thoughts they may have, and you may understand them, but you definitely have know what of “knowing.”

But as my family met with my grandmother and her doctor in the hospital following the surgery, in my experience, I was already not anticipating great news, because survivorship from ovarian cancer at that time, averaged two years at best. My grandmother had already faced cancer before. How much more could her body take?

The doctor stated, “everything looks great. We got it all. I would like to do preventative chemotherapy just to make sure.” When I went through my chemo, I too had to go through preventative chemo, two cycles, so, this recommendation did not seem unusual. Then he finished his thought. “I would like to do between twelve and sixteen cycles.”

My grandmother sat in the bed, with her typical comforting “don’t worry about me I’m fine smile”. Man, the money she could have made as a poker player. But of all of us in the room, two of her children, her own sister, and myself, only I was the one to be puzzled by this direction. To me, something was wrong. I pulled my mother outside, and told her that she needed to talk to my uncle, and call my other uncle in California. Something was wrong. The quantity of treatments was not something that should be considered “preventative”, but rather an active treatment regimen. Either the doctor was lying, or there was something else going on.

Only after my grandmother had passed, did we find out what actually had happened, a grand plan, and literally only two people knew about it, my grandmother and her doctor. We figured it out, as we prepared for her funeral.

One of the first things that was discovered, was that my grandmother had already picked out her burial clothing. Why would she have done that if she was going to be starting chemotherapy? The crazy thing is, her own sister who lived with her, never even noticed this had been done.

Here is what I believed happened. My grandmother had a discussion with her doctor before meeting with us about her oldest son and his family coming in to visit from California a few months later. Clearly, her prognosis was not good, in spite of what we were told. I believe the doctor told her that she may be able to buy time, by undergoing chemotherapy. Also, my grandmother was not one who wanted people fussing over her, which clearly she was overwhelmed with all of the attention that she was getting.

The days leading up to the beginning of chemotherapy, I could see that my grandmother was troubled, yet, she also did not seem to be preparing for the chemotherapy. Guides about side effects, and directions to prepare, had not even been read. And just a few days before, she did get her hair cut quite short to prepare for the likely hair loss.

But as I sat across from her in her living room the day before she died, just two days before the start of the chemo, she seemed withdrawn, deep in thought, her mind clearly somewhere else. I just chalked it up to the anticipation of starting chemotherapy. I now know it was way more than that.

My grandmother made the choices she did, and that was the way she wanted it to be. She did not want other pressures put on her about what she should do, as well as not worry anyone else.

In my years talking to cancer patients and survivors, a simple instruction was given to us, “never tell a patient that you ‘know’ what they are going through.” This was the rule, even if we happened to be dealing with a patient that was dealing with a similar cancer. There is no possible way to know what is going on in the mind of a cancer patient. We can have an understanding, but not know. And that is a huge difference.

Over the decades, the many patients and survivors that I have talked to, and too many that I have said goodbye to, all had their ways and their feelings and wishes how they desired to carry out their plans. It did not matter if they were multiple relapsers (I knew one person who had relapsed from Hodgkin’s five times!), or were facing yet another challenging late developing side effect from their treatments, I can understand what they are going through and feeling, but I do not know what they are going through. Hell, even my feelings are not always clear about what I have gone through, or what I would allow myself to go through. No one knows how it feels to be me, other than me. You can understand what I am going through, and that is different.

I understand what my grandmother was going through in the end. My emotions went the full range from grief and sorrow of her loss, to anger at what I felt was a doctor selling a false hope to my grandmother, time she did not have. It has taken over twenty years for me to get this through my head, and in spite of me missing her so much yet to this day, I do have this better understanding of what she decided.

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