Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “August, 2022”

Play Me A Song…

Music has always been a functional part of my life, at least from the age of five years old. Whether I play it, sing it, “spin it” (as a disc jockey), or just listen to it, there will always be a song that has made a permanent impact on my life and memory for me.

Chicago’s “Wishing You Were Here” featuring the Beach Boys, was probably the first contemporary song I ever heard, back in the early 1970’s. I was a child at our local amusement park, Dorney Park, and the song was blaring from a speaker located atop a pole near the Thunderhawk wooden roller coaster, that I was about to ride, also a first in my childhood.

As an untethered passenger in my mother’s red Ford Galaxy, Queen’s “Bohemian Rhapsody” played on the “AM radio” in the dashboard of the car. I would scream, “turn it up Mom!” every time it was on.

Somehow, April Wine’s most popular song, “Just Between You And Me” was our senior class prom theme song, in spite of the song being a few years old at that point.

The introduction to Madonna’s “Like A Prayer” had just come on to my car radio, as I pulled into the parking lot of my oncologist, to begin my chemotherapy treatments for Hodgkin’s Lymphoma. This song would instantly trigger the visual of Madonna’s music video for the song, causing a reaction in my mind and heart, with the conflict that I was having with my “higher power” during this difficult time in my life.

You get my point. This list goes on and on. My hour-long drive to work and home, I actually enjoyed, because it meant that I would get to listen to music. At work, probably 90% of the time, you would find me with some form of headphones/ear buds on, listening to whatever current media player I had.

Recovery from the various health crisis I have faced, as well as convalescing in the hospitals, you would always hear music, as I combined the tunes with the concept of “positive imaging” (thank you author Norman Vincent Peale), a method of imagining a time in the future, healed of what I was facing. And of course, plenty of performances singing, DJing, and other various forms of entertainment I did, rounded out the musical involvement.

The past two and half years of the Covid pandemic, I have gotten to spend quite a bit more time, in my personal and private concert hall, not the travelling road show that is my car. I would concentrate on improving myself on the guitar and keyboard. It was not unexpected, to be walking by the house, and hear me belting out vocals to many songs in my wheelhouse.

But recently, I noticed a new purpose for at least one facet of my world of music. It was an accidental discovery for sure, a blessing and a curse actually. One thing I take pride in, however I perform, is giving the best effort I can, as perfectly as I can. It turns out music is going to be making a bigger difference in my life than I could have expected.

Approximately twelve years ago, I noticed something odd. I went to check my voicemail, I had forgotten my passcode, a number I had used for years. As someone with nerd and OCD tendencies, there was no way for this to have happened, but it did. This “block” lasted about five minutes. Further incidents included “blind” events while driving. By this, I mean pulling my car into traffic, where I “saw” none, and there were. The final straw, was an incident at the kitchen table, when a cup of water was spilled, causing me to irrationally get upset.

I had enough wits about me to realize, something was not right. And I recall an incident with my first father-in-law, suffering unexplainable cognitive issues, to eventually be determined to be caused by unmonitored medicines. This cost him four years of his life being kept in assisted living with my mother-in-law unable to handle this issue.

Something had changed with me. Something had to have changed. But what? My doctor sent me for neurological testing which came up inconclusive. Still, something was not right, and it was getting worse, and I felt it was going to be up to me to figure it out, as long as I had the time. Several prescriptions had been changed following my emergency heart bypass in 2008. There was a change in one drug in the drug itself, as well as a steep increase in the dosage, protocol the doctor said. I looked at the side effects listed for the drug, and nowhere did it list “cognitive issues.” Yet, the drug was all I could think of that could be causing this issue.

A search of the internet, I came across a doctor at the University of California, San Diego, Dr. Beatrice Golomb, who did a study on statins and cognitive effects. Long story short, here was my answer. Evidently, if side effects do not meet a certain percentage in appearance in the studies, it does not get listed on the warnings. That does not mean it does not occur. Dr. Golomb had run studies that confirmed unreported side effects from cognitive impairments to rage as a result of statin usage. I was certain this had to be it.

I notified my doctor I was going to stop taking the drug all completely, even at the risk of my cholesterol rising to dangerous highs again. He would either have to find something different, or go back to the dosage I was already on, which after several months of figuring, I ended up on my original dose, and the cognitive symptoms had disappeared, actually within a few days of stopping the other dose.

It is not uncommon for cancer patients to complain of “chemo brain” or a brain fog, and for some of us long timers, this issue can carry on for a long time, if not permanently. Because health complications from our treatments for Hodgkin’s Lymphoma are progressive in nature, we should be constantly surveilled, though sadly, so many do not even know this history. As doctors watch for cardiac, pulmonary, and other issues as they advance, cognitive is something that often gets overlooked. It just sneaks up on you.

I have always had an issue with my memory since my chemo days, but the change in my prescription caused a separate issue. But years later, yes, I have noticed my memory slide, and with no rhyme or reason how often, or how short the distance between the moment and when I forget. I now have a way personally of being able to tell if and when it gets worse. And it is the thing I credit with getting me through life, music.

I already know that I only retain about 90% of the lyrics that I have ever sung, and no song is likely in its entirety. And though guitar and keyboard both require “muscle memory,” mental memory is still needed to know which notes to play. Though I try to practice every day, I commit one song for each, vocal, guitar, and keyboard, that I rely on to get perfectly each time. And if I cannot, I immediately try to figure if it is a “muscle memory” issue, or a cognitive. As often as I play or sing, it should not be a “muscle memory” issue. It then will become a matter of how often and how bad the errors I make are, and if determined to be a memory issue, how bad it is getting.

A couple of years ago, Lady Gaga performed with Tony Bennett, who is living with Alzheimer’s Disease. Even at his age and his stage of the disease, the one thing his mind has not been able to take away from him, is his ability to recall every song, every note and every word of them, and perform them just as he did when he first wrote them. Sadly, he cannot remember much else.

These days, I try not to keep too much on my plate, because there really are only a few things on my plate that are so important to remember, not to forget. I am hoping this helps at least keep my sliding memory to a minimum. And if it does not, hopefully someone hears me, and reminds me. I will either be singing or playing. It will be hard to miss.


This has been a difficult year amongst my fellow long term survivors, and mourning the loss of yet another, that I got to know along our journeys.

It is hard to believe that someone with such a positive and visibly obvious pleasantry about her was forced to deal with something so horrible, not just one time, but several times, and many other difficult issues with her health. It is a cliche said all too often, and meant every time, “it just isn’t fair that she had to face what she did.”

I never got to meet Aimie, but over the years, we exchanged support for each other, depending what health crisis either of us was dealing with. But what she was better at than I, was overflowing with a positive outlook, no matter what she faced. She would constantly share photos of tasty treats and cuddly fur friends. Aimie would post inspirational quotes and memes. And living in the south, she shared some of the most beautiful sunsets.

I am envious of those who actually got to meet Aimie in person. Because while a picture may be worth a thousand words, her stories were likely much better from her herself. But I am sure, those that got to know her in person, are feeling an even deeper loss today. And it is clear from our peers, that she had an impact on so many of us.

I would like to share some of the thoughts some of her fellow survivors have expressed about Aimie:

“She was such an inspiration to all who knew her!”

“Seeing Aimee’s picture above though reminds me that she indeed was a survivor and that we need to celebrate those “wins” while we can.”

” She was such a warrior. Wonderful friend, coworker, and spirit. A person who will be truly missed.”

“A wonderful person.”

“Another amazingly strong being!”

And finally, from a fellow survivor who got to know her better than many of us, and a friendship that gave both support to each other along their survivorship, “SHE FOUGHT SO HARD!” Yes, she did. And that is what we will all remember about Aimie. This friend is one of the lucky ones bless to have gotten to know her so much better as they spent much time with each other, sharing laughs, sharing gifts (Aimie loved painting rocks, her friend making this beautiful wreath with all four colors representing the four battles with cancer that Aimie had faced), and supporting each other. Because that is what survivors do.

Twas The Day Before Classes

Twas the day before classes, and all through the dorm, excited and exhausted, this was the norm. Tomorrow begins their path to tomorrow. The things they will learn, will help them to grow.

There is a reason that I stay away from poetry. But I wanted to give it another shot, at least for this story. End result, tacky and sappy as usual.

Thy dynamics of being a non-custodial parent, I have been preparing for the day, my daughter, and next year my younger daughter, would go off to college. This is the path they have chosen, and of course with my blessing. Part of that path however, is the realization, that they are no longer “under your roof”, out of your eyesight, whatever parenting phrase you like.

The biggest part of this new direction, is the absence, doing without the constant presence or the ability to have uninhibited contact at any moment. Granted, technology such as cell phones and Facetime and Zoom have been a game changer to reaching out to a college student or the student to the parent. But, the lack of a physical presence at home, is definitely a struggle to deal with emotionally.

As I said, I have been my daughter’s non-custodial parent. We were separated by a decent distance, so visits were pretty much like “breaks” during college; a weekend here, a few weeks here, and then back. It is just for me, I had already been doing this through high school. And though the new level of education, and promotion to adulthood, the tradition was still the same this year; Summer visit, then back home, or now, to college.

I gave my daughter one final pep talk with no topics that would lead to guilt being added to one of the most exciting times of her life that she was about to begin. I urged caution and common sense when out and about. I told her I was excited to see the many new things and directions that she would take. Finally, I told her, among all the excitement, remember to take a breath in, and enjoy the moment to take in and save the memory of this time.

As I prepared to say goodbye, get that last pre-college hug, I told her I would cut back on the amount of time I was spending looking at old photos. I had new photos to take, albeit, will likely be much less. And the most important thing I would finally give to her as an adult, her space. My days of being able to see her grades and progress reports are gone. The days of me expecting her to be somewhere at a specific time so that I can call, are gone. I asked of her only one thing, that we at least have one phone call a week. I know her schedule may not align with mine, between her classes, and other activities on campus, so to make time, that we can catch up at least once a week. Of course, I told her she can reach out to me any time that she wants, though I think it will likely be kept to the once a week arrangement. I will likely keep sending my small daily text messages, just to say “hi” and that I am thinking of her.

And that was it. She was off.

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