Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “June, 2021”

18 Jun 2021

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.

Posted in Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
17 Jun 2021

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.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
12 Jun 2021

Whether A Promonition, Or A Preview, I Want It


A friend of mine posted this morning, that today is one of her favorite times of the year, GRADUATION DAY! She herself has experienced this many times, as a student, as a parent, and as a leader in her community. My friend gets an extra boost on this day, because of her leadership position, actually gets to participate in the annual graduation ceremony. How cool is that? I would be remiss, if I did not mention, that her reputation locally, is that she often gets referred to as an “official school mom” of the district (for privacy, I am not mentioning the name of the district). But if there is anyone who claims to have more pride in her high school alma mater than my friend, I call bullshit.

Today is Graduation Day in that particular school district. It also happens to be the school district where my daughters attend high school. While I am happy for everyone who got through one of the most difficult school years ever imaginable, dealing with Covid19, and the fact that a graduation ceremony can be had, my true excitement is a year away. And even then, it will be two years in a row that I will get to experience a high school graduation as a parent.

I am a very sentimental person. And Graduation Day is one of those days that hits me in various directions of emotion. In 1983, I became the first one in my family, on my father’s side, to graduate from high school. But there was another issue that I had struggled with during that time, that took a bigger precedent.

My relationship with my father when I was a child, could be described as strained, at best. My parents had divorced when I was three years old. Though I occasionally saw my father, in my later youth, I would consider us estranged. As far as I was concerned, that was his choice.

But as I said, I was graduating from high school, the first one to do so on his side of the family. I knew my friends would have both of their parents at the ceremony, and while my father and I did not speak often, I honestly felt this moment could have been a turning point for us in our relationship. A demand was made by me, not a request, not a favor, not an invitation, but a demand. “Here is a ticket for graduation. Show up, or I never want to see you again.”

I had grown tired of all the disappointments from my father. I was not demanding anything unreasonable. Show some pride. Your son was graduating. An hour of your time was all that was being asked. You had done nothing but disappoint me for most of my entire childhood. This day was the biggest day of my life so far. Be there, or else.

He did not show up. He never called to congratulate me. My father lived less than ten minutes away. Not even a card.

Almost forty years later, I have many friends who have either children, or even grandchildren graduating this Spring. Several of them, are from my world of cancer survivorship, and some, who I know through the world of divorce. My news feed is filled with prom and graduation photos, a wonderful reminder of what is ahead for me next year, and the year after. Yes, I was late to the party, but now the party is just getting started.

I admire and even envy the many families that have endured all the years together, remaining whole as they celebrate this day. This is not to say that everything went smoothly, but one thing that they do not have to be concerned about, are distractions from a struggling marriage, relationship, or divorce.

The pictures are there. Friends who are divorced, but all are together, with their graduate, celebrating their big day. Each parent putting aside their differences, for the sake of their child, because graduation day is not about the parents, or their problems. The photos that I see, will last forever for their children, a happy memory they will always cherish.

My last personal experience with Graduation Day was not a memorable one for me. As a divorced parent of a teenager graduating next year, I need to make sure that this is where the similarity ends with my graduation. Up to this point, I have used my experience as an adult child of divorce, to make sure to be sensitive to the needs of my daughters. Unlike my father, who to be fair, we did make amends in adulthood, my point is to not repeat what my father did in my childhood, with the experiences of my daughters. And so far, I have done all I can to not only remain involved in their lives, but active as well. I have assisted them both with their educations, and have spent as much time with them as I could. Ironically, in spite of Covid19, I actually got to spend more time with them as a result.

But their big day will come next year, and the year after. And hopefully, I have done all the right things, not followed my father’s footsteps of my childhood, although I will likely be one emotional hot mess. It will be our turn, to show up for our daughters, just like my friends, and make the day about our daughters, because it is.

As I mentioned however, there is another group of proud parents that I celebrate this time with, those in my world of Hodgkin’s survivorship. When I first became aware of my health issues tied to my treatment past for Hodgkin’s Lymphoma, it was clearly laid out for me. I will never forget what my doctor said to me, “We cannot stop the progression of what is happening. We cannot reverse what has happened. But what we can do, is do what we can to slow the progress down, to buy time. My plan is for you to be able to see your daughters graduate, get married, and one day be called ‘grandpa.'” They were barely school age at the time, so these words seemed quite aspirational for me to achieve, in no hurry for my children to become parents of course.

Many of my fellow survivors are getting to experience this annual tradition. For most, their health has held up long enough for them to do so. For several, they have now gotten to see even grandchildren graduate. I am not getting that far ahead. I am focused on reaching one milestone at a time, because I know all too well, that moment could be taken away from me with the uncertainty of my health issues. One particular friend comes to mind, who sadly did not get to see her first grandchild graduate from high school, having passed away late last year.

This time of year is a big deal for students, and it should be. It is also a great moment for parents and grandparents, and it should be. As that time approaches, I know that I have done all I can to make this day one of the most memorable for my daughters. Now I just need to wait for 2022.

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

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