Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Animals”

Make Me Smile

To quote a couple of lyrics from the Chicago classic, “Make Me Smile,” “living life is just a game…” “I’m so happy.” It may be hard to think that after writing a post like I did recently, how could I possibly be thought of as someone who is happy, given all that I have gone through in my life. But the truth is, I am actually a very positive person. The key to this happiness is balance and being able to recognize the things we can control and those that we cannot control, all the while focusing on what is important in life. Just as there are game pieces, there are individual pieces in my life, that keep me in this game. And just like sitting at a table with friends or family playing a board game, the results do not always turn out like we would like. But you take the experiences, and you bring them with you the next time you sit at that table.

And in spite of the two major issues that I must face in my life, failing health and divorce, I really do have a lot in life that bring me enjoyment, smiles.

Two words, “my world.” No matter the struggles that I have faced, my daughters have been the driving force behind me getting through EVERY challenge that I have faced. From the days they were placed in my arms, through their entire childhood, and into their early adulthood, my entire mood skyrockets each time I get to talk with them, or even better, visit with them.

Over the years, we have taken turns giving each other reasons to laugh. Each personal achievement they have attained along the way, they have done so with a stubborn determination. And with each health crisis that I face, though I know it is out of my control, I still take up the fight, not to have their hearts broken.

My life as a cancer survivor of Hodgkin’s Lymphoma has been directed by a set of goals and milestones, and one by one I am meeting those goals and milestones. With one final high school graduation to go, two college graduations, and of course whatever follows in their young adulthood and as far as relationships (and secretly hoping for grandchildren), I am not focused on what I am up against, I am focused on what I have gotten to experience.

Music in all of its forms, is able to take me mentally to any refuge, any direction, to bring me back to the place in my mind, where I know, what I have, is good. My entire life has been filled with role models, exposure to different genres, ability to challenge myself to “read a second language” (music), and so many opportunities to compete, travel, perform, and feel accomplished.

I have always felt music an important part of my life. From singing in school, to the music I listened to in the chair while I got my chemotherapy, to special performances, music made things less scary, offered comfort, made people feel good. I am fairly confident that I have bestowed the same respect for the various genres of music with my daughters. I have several great moments that will always bring a smile to me, like when my oldest daughter sang “God Bless America” for her grandfather, or when my younger daughter played “Chasing Cars” on guitar with me singing on vocals. And then there was the time, leaving a movie theatre after watching “Rocket Man,” the rockumentary of Elton John, listening to my daughters singing “I’m Still Standing,” one of the many hits of Sir Elton.

I do not want to lose my place trying to confirm how long I have been doing this, but I have been writing “Paul’s Heart” now for over ten years, easily likely more than that. I have contributed to many writing projects such as newsletters and books, all the while still working on my own memoire on survivorship. I have given many speeches on survivorship and patient advocacy. There is a catharsis that I get from writing and speaking not only personally from me, but hoping that something I have written will make an impact or difference for someone, especially when facing a challenging situation.

When we face a challenge or confrontation, we need to be able to release the stress created, and for me, that is writing. It could be in the form of a text, an email, a post, or even the ancient form of writing a letter. Whether or not those thoughts ever see the light of day, the mere act of releasing them via my fingertips, provides a way of letting those stressors go. And if it happens to be a positive thought that has been written, perhaps the ideas may give a more defined direction, providing a better opportunity for success.

Friends. No definitions. No requirements. No expectations. Frequency of time together, never a factor. Never having met in person. Just knowing that person is there, and will be there, and that same assurance given back, in good times and bad, sharing memories and tears, lifting spirits and giving high fives.

I am not talking about relationships either. I am talking friends. And if you are lucky enough, to have a best friend, that one you know will always have your back, kick you in the ass when you need or deserve it, and give you the push you need to reach something thought out of reach. Whether one friend, or twenty friends, to be able to share, laugh, and experience life is truly a blessing to be a part of.

Pets, fur friends, family. It has been a long time since I said goodbye to my best friend, Pollo. He gave me so many years and so many memories. My daughters think I take so many photos of them. Had I had a smart phone when I first got Pollo, I undoubtedly would have my own Youtube or TikTok with him.

My daughters and I can be out walking, for exercise or recreation, and I will always, and I mean ALWAYS stop to pet someone furry. I cannot get enough of the TikToks of the dogs, cats, no matter the breeds or species, animals always have a way of bringing me happiness.

And lastly, but not least, “You.” I get enjoyment out of watching others have fun, experience success, grow. I love to hear success stories, not necessarily having come from a dark place, but just a success story. I enjoy watching people open gifts, participate in activities like skiing or parasailing, even though I can no longer do these things myself. If you are smiling, I am pretty sure not only will I be smiling, but so will others around us.

This was the challenge that I issued to myself, and can hopefully convince anyone who might think otherwise, I really am a happy and optimistic person. Sure, I have some crappy things that get thrown at me. But I never lose sight of my peace and my happiness. And all the things I mentioned above, are all pieces of that game of living life. I really am so happy.

Making, Saving, Remembering Christmas Memories

As I wrote previously, I am not a big fan of this time of year. That is not to say that I do not have good memories. In fact, I have plenty, really the only reason I do not give up on the holidays completely, the hopes that someday, I can find a way to embrace them as I did long ago.

Many years ago, I recall making a comment, that my maternal grandmother, was the “glue” that kept us all gathering together on the holidays. That when she was gone, so too would be the traditions of Christmas Eve service, presents the next morning, and the best Pennsylvania Dutch Christmas feast featuring homemade stuffing (we did not call it dressing). My grandmother’s final Christmas with us, we had two tables completely filled. At the time, we were unware that would be her final Christmas.

1997 was her last Christmas, and as anticipated, the last time all of us had gathered together completely. There would be miniature gatherings throughout the two days of Christmas in the years that followed, but none as we had done in the past. Today, those Christmas’s are just a memory.

Any hopes I may have had of turning my attitude around about the season, came with the arrivals of my daughters. There had been both renewed traditions and new ones created, all to the glee of my daughters. As in my past, health issues and at least one tragedy would once again have a permanent impact on my anticipation of future holiday seasons. But of the years that were free of the difficulties, there are so many memories.

Unfortunately, divorce would have a major impact on the Christmas holidays between my daughters and I. I would not necessarily call it a bad impact, just different. With sharing time between their mother and I, I volunteered to let them spend the actual holiday with their mother, while I would see them the day after. This arrangement allowed me to separate the negative that I carry with me about the holidays, by not actually celebrating on the actual date, while recognizing the special time that I get to spend with my daughters each holiday. Over the last nine years, we have all of those memories.

So there is a new chapter of holiday seasons coming next year. With both daughters attending college, one has a unique schedule, which means that the Christmas holiday may just be the only time I get to see them both at the same time while they are in college. But we will continue to make memories.

I do not necessarily believe in horoscopes, but the one pictured above was sent to me. I read it in amusement, I cannot say that I anticipate anything new to happen with me or my friends, but January will begin a year of change. One that will finally bring me relief of stress, struggle, and conflict. I will hope, it is a lot to ask, to have a second consecutive year without a health challenge. This past year was wonderful not to be under a knife or poked. I cannot remember the last time that consecutive years of decent health happened.

Finally, as we enter this season, my heart is with all my friends and family, who are celebrating Christmas, some their first, without a particular loved one, whether it be a spouse, sibling, or tragically, a child. No matter who is missing from the celebration, the pains may be different, but they are still real for the person impacted. I know that I still grieve for both my grandmother and my father, which I guess is a way of still keeping them in my heart this time of year.

I am not sure if I will get another post off before the end of the year. As I mentioned, I have some fun planned for my daughters when they come to visit after the holiday. So, in case I do not get to write anymore this year, I wish you all a happy holiday (there are too many for me to list each one, the only reason I don’t – don’t read into it with political correctness), and I hope your New Year is healthy and prosperous.

A “Paul’s Heart” Christmas Carol

Every December, I am faced with the same situation as my birthday falls this month, renewing any or all of my driving information. My license is good for a number of years, as is my handicap placard, but my registration gets renewed every year, even though I have the option of multiple years. I choose not to do multiple years, because if something were to happen to my car, and I would need another, that would be a second registration I would have to pay. This scenario played out a few years ago, when my car was T-boned. The DMV, Department of Motor Vehicles does not give you a pro-rated refund for the time you no longer have the car, nor do they give you credit for the time left towards a replacement car.

There are very few places that you will wait longer in a line for service than the DMV; lines for rides at Disney, the post office in Naples during Christmas season, and a customer service line for any airline following the cancellation of a flight. But with a fully charged cell phone, I felt I could keep myself entertained for a potentially long afternoon, waiting to renew all three of my driving needs. Before I dove into my phone, I just looked at all of my paperwork to make sure everything was in order. For some reason, I immediately honed in on the “expiration dates”, or how long each would stay valid. This is when my mind started to take me down a path I try not to think about. Will I still be around when these things need to be renewed again?

As a long term survivor of Hodgkin’s Lymphoma, dealing with a plethora or multitude of late developing side effects, I live my life holding a “Pandora’s Box” underneath a “Sword Of Damocles.” I know most if not all of the health issues my body deals with in regard to the late side effects from my treatments. The only thing I do not know, is when each will become a problem to be dealt with immediately. One problem gets dealt with, another problem needs attention. And really, as bad as all this is, as long as I have skilled doctors who listen to their patient, me, and the knowledge I have about what I have gone through, I have managed to get through everything.

But there is a darker side to my survivorship, and shared by many other survivors, a stronger recognition of our mortality. Because long term survivorship is still a relatively unknown field in medicine, though medicine is beginning to catch up, unfortunately, not fast enough for us. With the internet and social media, fellow long term survivors can share their experiences with others, allowing us, in a way, to teach or train doctors how to handle patients with our needs by learning from survivors. In the circles I associate with, there are well over a thousand members on one of our social media groups alone, located all over the world.

Many of us survivors develop close bonds to others, even meeting other survivors in person. I can tell you there is no other feeling, that seeing someone in person, who is experiencing similar to what you are going through and the understanding that is shared and felt.

I mentioned mortality earlier. Most of the other survivors I know, we all know, that regardless how long we have survived our Hodgkin’s Lymphoma, while a great number of survivors may be fortunate to never have to deal with any late developing side effects from their treatments like I have, there are many who have. And then there are those who are completely unaware as to the mysterious things that are happening, unable to put two and two together, to connect the dots between declining health and late side effects. Because they just do not know, and were never told it could happen.

In any case, if we are lucky, we have a doctor that has knowledge and understanding of our unusual health history. We are even luckier if the health issue de jour that we are dealing with, can be dealt with and healed. And then there are times, that our luck turns south, and the prognosis is not good for a recovery. And then, there is the everyday dangers that even healthy people face if we overcome our health issues, crossing the street, driving a car, slipping in the bathtub, also known as a sudden accident. The dangers for us long term survivors is that our bodies have been through so much trauma, we are already at a disadvantage for a doctor trying to save our lives, with our deteriorated body conditions. The most glaring of the facts of our mortality, while the survival number of years is in the decades, that does not mean well into our years of life. In fact, as one fellow survivor once wrote, many do not reach past the age of 60. Combine that with the longevity of my paternal side of the family with an average age of 55 years old, and I am more than aware of the odds against me.

I have laid the groundwork. I am at the DMV. I am aware of my unique mortality. I am approaching another year older, another year older as a cancer survivor. While I wait for my number to be called, for the DMV that is, not the mortality, my mind begins to wander. I can visualize someone, looks like my late father. Acknowledging a conversation that we had with each other when he was alive, he reminded me in this thought, that I was a survivor, there is no such thing as giving up.

My father was absent most of my childhood, yet he was able to remind me just how “good” my life turned out to be. No, it was not a “Norman Rockwell painting,” but I did okay with what I had and who was not in my life.

And then we began talking about my early adult years, in particular, the years that I fought Hodgkin’s Lymphoma. We talked about my later years, with all the health struggles I had faced, but he would remind me, all the lives I had touched, including his as he faced his own battle with lung cancer. The fact was he reminded me, I had done so much in my life, not just for me, but for so many others.

And then the image faded away. In fact, not just my dad, but all the things we had talked about, were all gone. While I did not have a “grim reaper” in this moment of wandering, it was clear where my mind was. I am between two age medians, my paternal average of 55 years of age, and the seeming equivalent to climbing K2, reaching age 60 as a cancer survivor of over thirty years.

Tomorrow is my birthday, turning 57 years old. The awareness of my mortality is both a blessing and a course. So far, having the doctors that know how to deal with the issues from my late side effects, has kept me alive. Constant surveillance keeps my health from getting to the life and death moment as happened in 2008. As they say, what is happening to me cannot be reversed, but it can be slowed down, and managed (to a degree).

But I have a knowledge of so many other survivors who have passed, and while many have passed as a direct link to their late effects, there are also others who passed away due to an otherwise common event.

Finally, there will come a time, that all the things that doctors have done to save my life over the decades, will need to be done again. My history and treatment of Hodgkin’s Lymphoma, made every one of these original surgeries high risk for complications and death. Having to do any of them again, the risk is even greater of a complication.

No, I do not need that ghost of future standing in front of me. And if I had the chance, I would give him the push into the grave, because in my heart, I am far from ready to have this thing called life, end. One time unthinkable when this all began, getting to watch my daughters grow, I have seen them come to the end of high school, and begin college. And there are more milestones that I want to see that involve them. And at this point, the way I feel physically, I believe I will get to see those days.

But then there is a point when I say, no more birthdays, the I will not get older. No more new years so that I will not pass another year of survivorship. Just let me ride this thing out to watch my daughters do what I have dreamt their whole lives to do.

It is important that anyone reading this understands, I do not go through my life, worried or thinking I am going to die every day. Far from it. Each morning, I wake with the intention of seeing another day. I have so much I want to do. It is the reality of the knowledge I have, that just reminds me, I am not the one in control. To quote the lyrics from the Bon Jovi song “Live Before You Die,”

“I made mistakes I caught some breaks. But I got not regrets. There’s some things I don’t remember, but one thing I don’t forget. When you’re young you always think the sun is going to shine. One day you’re going to have to say hello to goodbye.
Shout it out let someone somewhere know that you’re alive.
Take these words wear them well, live before you die.
You learn to love to live. You fight and you forgive. You face the darkest night. Just live before you die.”

Post Navigation