Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “December, 2022”

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.

We Don’t Call It That Anymore

I follow a lot of comedians, well, because I like to laugh and think I have a fairly well-rounded sense of humor. I do have my limits, and just move on when a line gets crossed. But a TikTok from comedienne Amber Joy Layne, actually left me scratching my head in wonder, more that it did have me laughing. Do not get me wrong, her punchlines were perfect. But as the saying goes, “it would be funny if it wasn’t true.” The subject of Layne’s bit, was the subject of referring to STD’s (sexually transmitted diseases) now as STI’s (sexually transmitted infections). Now usually during a standup routine, any reference to an STD would have been to the “how” or “when” it was acquired. The dialogue leaned towards the de-stigmatizing or lessening the severity of how bad or shameful one is supposed to be, if one gets an STD. As Shakespeare wrote, “a rose by any other name is still a rose.” So, no matter what you refer to it, it is still what it is, a disease. And it does nothing to increase prevention or treatment options. I guess, by referring to it as an “infection,” it makes it less embarrassing to deal with.

This TikTok triggered me however, in that something I was diagnosed with, at some point since my time, had become renamed. In November of 1988, I was diagnosed with Hodgkin’s Disease. And until the doctor followed up Hodgkin’s Disease with the word cancer, I had no idea that the two terms were even related. Regardless of the words “disease” or cancer, I was going to have to fight for my life using harsh treatments and methods. The results, regardless of what my Hodgkin’s is referred to as, I am a thirty-two year survivor.

But somewhere along the way, someone decided Hodgkin’s Disease needed to be renamed. Nearly 300 years ago, Thomas Hodgkin’s discovered the abnormality in the lymph system (though credit appears to be given nearly 200 years earlier to Marcello Malpighi in 1666 – credited to Dr. Ananya Mandal and her paper in Life Sciences Medical News). But in the year 2001, the WHO (World Health Organization, not the rock band), published that the preference was to refer to Hodgkin’s Disease, now as Hodgkin’s Lymphoma. Though I know a lot about Hodgkin’s Lymphoma, and a decent amount on cancer in general, the reason for the change is so way over my head that all I can offer from what I read and tried to understand, was that it had to deal with molecular mumbo jumbo. Yeah, the paper lost me after the word molecular.

But there you have it, there was a scientific breakthrough that led medicine to feel the need to change the name of a cancer that I and hundreds of thousands of others had been diagnosed with, from disease to lymphoma. Now, keep in mind, we already knew that Hodgkin’s (whatever you call it) was a cancer of the lymph system. So perhaps, for the lay people, using lymphoma helps non-patients understand what and where Hodgkin’s is. After all, breast, lung, and colon all speak for themselves. But Hodgkin’s, who knows.

I guess though, there may be an unintended distinction between those of us diagnosed with Hodgkin’s Disease versus Hodgkin’s Lymphoma, though both are the same thing. Those of us treated for the “disease” appear to have been treated with much more harsh, and many will agree, experimental therapies, that have left many survivors, like me, with late developing side effects from radiation and chemotherapy treatments. Those being diagnosed with “lymphoma” are more likely to be treated with the less toxic treatments. So, there is that.

So, was this name change really necessary? Or just for someone to get their name in a journal? Or has it really made a difference?

And then there is non-Hodgkin’s Lymphoma. Here you have a cancer, but instead of coming up with an original name, you just say it is “not” Hodgkin’s because it is a cancer of the lymph system, but it is not Hodgkin’s.

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.”

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