Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

15 Jul 2023
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Rob


My fellow long term survivors and I lost a good one a couple of weeks ago. Do not mistake me, all of my fellow survivors are good ones. But Rob, there was something extra inspirational about him, that not only gave many of us hope, but also challenged us. As he went through the last few years, in spite of the struggles, he never gave up. Even in the end, it was on his terms. Rob was in control.

I had known Rob for many years, though I never had the chance to meet him in person. He was a long term survivor of Hodgkin’s Lymphoma, just like me, and just like me, he had late developing side effects from his treatments that had gotten bad enough to require intervention.

It is easy among our “group” to forget that we have other things in our lives, that our world is not just about our current health crisis. Though that is exactly how our support is set up. As survivors, we share our experiences and knowledge, so that if a survivor is dealing with a doctor who does not get “it” as to what is happening with our bodies, we can hope that the doctor will be open minded and pursue the possibility of something unrealized.

There is more to our world than surviving the cure that gave us all this extra time from cancer. Sadly, it is only after Rob’s passing, that I learned of two of his interests that I would have loved to have our conversations dominate rather than cancer.

I never knew Rob was a musician and singer. Wow, the conversations that we could have had based on this common thread between us. But I have only found out recently just how good he was, and how much he enjoyed the world of music.

It could not be any more appropriate than to describe Rob as being “out of this world.” A web developer and and project director for online media, Rob was a valuable staff member for a wonderful art/science museum/exhibit known as “Exploratorium.” I cannot come close to even begin describing how awesome this experience is. But if you have ever been to an “immersion” type of museum exhibit, this is definitely not one to be missed. Clearly, Rob enjoyed his “work.” You can check out Exploratorium at the link below.

https://www.exploratorium.edu/

Rob was a true outdoorsman enjoying his environment around him.

We have a place that many of us like to share our lives outside of survivorship. And all too often, as many wonderful things we do get to talk about and share with our fellow survivors, that there is life after Hodgkin’s Lymphoma, our conversations do return back to our health as it comes back to the forefront, sometimes in a rude way.

Personally, and though I have written about many survivors who have passed, this took me a bit longer. Like many of our Hodgkin’s survivors, he had heart complications from the treatment later on in life. We are faced with so many factors that determine our fate if we go through with any corrective surgeries, that can result in success or failure. There is no bigger risk for us, than with open heart surgery. But depending on how badly scarred our insides are (from radiation damage), less invasive methods with lower risks are not an option.

Rob was someone who faced open heart surgery for his issue. Informed of the risks, he made the decision to proceed. And although not perfectly smooth, all of us, including Rob, thought he had turned a corner. There would be setbacks, and with each one, he seemed to overcome those. Of course, the majority of time this all occurred, was during the Covid pandemic. And even one of his caregivers exposing him to a Covid infection himself, something that should never have happened, never dampened his belief that he would get through this. It had been so long.

He finally decided his body had been through enough. If you have ever had to deal with a medical trauma or long term illness, one of the worst feelings you have, is the loss of control of “you.” As you get treated or recover, you do not have control. If there is one phrase that really bothers me, “lost ‘his’ battle with…” It has not been used in Rob’s case, and I wish this would be the case more often for others. Rob did not lose his battle. He decided that he had gone through enough. He took control, control that had been taken away from him.

I have everything in writing, as well as having discussed with enough of those around me, my decisions when it comes to getting through the rest of my survivorship. I feel that if my body is strong enough, which I consider enough as of this post, my body will fight to survive on its own, and I will get through it. However, if there is any lopsided risk with something being proposed to correct with my health, there are two things I do not want to happen. I do not want any complications that would leave my survival being a burden on my loved ones. And I do not want any lasting image other than when I was last seen out and about publicly. I am firm in what I want.

But then someone like Rob comes along, and he has not been the only one throughout my survival, in spite of the risks, makes the decision to go all in, and fight with every fiber of his being. His updates though not great, still gave hope to him, and all of those who knew him. It was this fighting spirit, and like several before him, that often lead me to question my personal decisions, and comparing levels of “fight,” which really is not fair.

Time and trauma, both worked for Rob, and against him. And there is not one fellow survivor or anyone who knew Rob personally, who were hoping for anything less than turning that final corner, and getting back to the things he enjoyed. Sadly, time ran out, the trauma was too great.

Rob, your spirit, your support, and just your wonderful outlook on life, will be so greatly missed. I have never known anyone who has played in a Blue Oyster Cult tribute band. But growing up, I got to hear Blue Oyster Cult in concert, from miles away from my home, at an outdoor festival, because they were that loud. Rock on wherever you are, and we will hear you play.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart
03 Jul 2023
2 Comments

Only Time Will Tell


From the day I was diagnosed with Hodgkin’s Lymphoma back in November of 1988, I firmly believe, the physiology of how my body worked changed forever. Surgeries removed organs and other parts of my body as part of the diagnostic and staging procedures, complicating my body’s day to day survival. Then my body was subjected to all kinds of toxicities from extreme dosages of ionized radiation to poisonous chemotherapy, all in the trade off for survival from cancer, and changing more of my body. And then, as time passed, decades in fact of survivorship, late developing side effects from my treatments now have the largest impact on my health.

And then, there have been all the major surgeries and trauma events that have occurred. My body is always under some sort of strain.

For the last fifteen years, I have been closely monitored by doctors who know and understand what late effects from cancer treatments are about. I get followed up with bloodwork, x-rays, scans, and even procedures to make sure that everything is still on the path of survivorship. Occasionally, there are things that do raise a concern, and when possible, they are dealt with or managed.

Bloodwork is a valuable tool, in that numbers, whether too high or too low, can indicate a problem and the need to investigate further. Some of those blood tests may just be a wake-up call, that something needs to change. My thyroid took a major hit from radiation damage. My blood is monitored annually, my thyroid scanned for polyps or tumors, and medication is taken. I am currently at my highest dose since I began taking it long ago.

Cholesterol is another bad word around me, and I kind of get a double whammy. High cholesterol runs in my family history. But the fact that my liver took a hit from my chemo, makes treating my high cholesterol complicated, as even medications struggle to keep levels to a safe range. I already eat a low cholesterol diet, and exercise as best as I can, but it often feels like I am going up a river in a canoe without paddles.

Recently, another blood level has reached an unhealthy level, and it is just as confusing because between my activity lifestyle and my diet, below average in carbs and sugars consumption, my A1C, the test that measures your sugar levels over the last three months and the answer to cheating for the simpler blood sugar test, has reached an all time high for me, and well into the diabetic range. My A1C has been on the constant rise, in spite of my diet, in spite of my exercise, in spite of being on medication. While my doctors try to figure out what is going on with this issue, I have my own suspicions, of course, just more late side effects leading me to be insulin resistant. My current weight, which has been the same for as long as I can remember, has not decreased at all, in spite of my diet and exercise, but of course is also associated with the higher A1C. My inability to lose any, did I say “ANY” weight has always baffled me.

I know stress also has played a major role.

My exercise regimen, not anything that would lead me to a physique like Lou Ferrigno, simply a large amount of walking, and some upper body strengthening, are meant to either get me into shape from a recent surgery or procedure, or to prepare my body for the next surgery or procedure. I always thought I was doing the right thing. A new situation has me wondering.

Recently, I cracked a rib on my right side, with a casual motion sitting on a chair. The susceptibility from decreased bone density because of my cancer treatments, is responsible for this easier injury to occur. While I am able to function, my arms and legs work, I have had to stop exercising because of the soreness to my rib cage. After one week, and note – nothing after nearly two years since my last heart surgery, I have dropped four pounds. But that is not all. An obvious physical symptom to spot with the naked eye, swelling in my ankles is also down. I have been involved in medicine now for a decade and a half, and can hypothesize, there may be something else at work. And given the history of the health of my body, anything is possible.

As I said, I have been baffled why I have not been able to drop weight all these years of exercising. But as I recover or give myself a rest while my rib heals, I have not been able to exercise. And given my last A1C blood result, and inability to afford the new diabetes medication my doctor wants me to take, I am resorting to the same method I do every time I get confronted with a health problem, major denial and I will prove them wrong. So, two months ago, when I got this news, I made the change to my diet, eliminating 75-90% of any of my carbs and sugars. It is still two months until I will have my A1C checked again, but in the two months I have been doing this, no weight loss.

But after one week, resting from an injury, I got results? Now I know, previously, when I have had to skip exercise for a few days, I recall the loss of swelling, and maybe shedding a pound or two, only to gain everything back, including the swelling, once I returned back to exercising. Again, I am not built like a body builder, and as much as I would love to lean on the theory “muscle weighs more than fat,” something more sinister may be at work her.

Congestive Heart Failure. Do not panic. I know I did the first time I saw it on my chart, which oddly enough did not occur until thirteen years after my first heart surgery back in 2008. But just before my aortic valve was replaced two Octobers ago, there it was on my chart, at least me noticing for the first time, the words, “congestive heart failure.” The term refers to the hearts ability to pump blood and becoming progressively more difficult. The fact is, many heart patients are likely to be considered in CHF.

But my diagnosis of CHF actually makes sense. Though honestly, I do not feel any differently, and actually have been impressed with my exercising and my breathing while doing it. But if the heart is not pumping correctly or maximally, it can cause fluid retention (also known as swelling and weight gain) and other issues. By exercising, I have been making my heart work harder, pump harder. But the time I have taken off to recover from my injury, my ankle swelling has gone down, and I lost a few pounds.

It will be two months before my blood gets tested for my A1C, and will see if my Draconian diet change had any impact. But I am going to refrain from exercising another week, just to see if my current conditions continue, and just as importantly, see if I lose any further weight. Yes, it is a “catch 22”, but if I lose more weight, that is a very important symptom for my cardiologist to be aware of with my history.

If you are someone who has never seen the inside of a hospital, as a patient that is, and have had nothing more than routine annual exams, I am so happy for you.

Posted in Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart
02 Jul 2023

A Vicarious Life


At one point in your life, you have had to hear the phrase “living vicariously through the life.” But what exactly does that mean? According to Merriam-Webster, it is “experienced or realized through imaginative or sympathetic participation in the experience of another.” When it is said, under normal circumstances, it usually refers to some sort of thrilling experience or achievement. But it can also apply to trauma or a traumatic event. Living vicariously means experiencing more out of something, by imagining yourself right in the thick of whatever is occurring, not just sitting back and watching it.

It can be said, that parents often live vicariously through their children. I make no assumptions about any particular parent, but many seem really push their children in extra curricular activities, sometimes, too hard, sometimes, too unrealistically. It is one thing for a child to have an interest in something, say basketball. It is another to build that child’s life to being the number one pick in the NBA draft. Or you can see it with so many “stage parents” on television or elsewhere, who may just have a natural born gift or talent pushing for a golden ring towards a big break in entertainment. What is the motivation? That is the difference between a dream, and living vicariously.

There is another way to live vicariously, and as opposed to what I previously wrote, is more likely to be beneficial, especially to the one who’s life is being piggy-backed to. Perhaps a person fell short in their own life with dreams that they had, whether by plan or by fate (i.e. health had other plans). Maybe, in the hopes of a child, a parent simply wants better for their child.

I have done this parent thing with my daughters by “instinct.” The only role models for fatherhood that I had, were those of my friends who had fathers, and of course TV dads. As far as my friends were concerned, I knew their family makeup was different than mine, and as for TV dads, well, Hollywood is not necessarily accurate. Oddly enough, it was the things that I feel that I missed growing up, that helped me to make the decisions that I did. More importantly, I realized that probably the thing needed by my daughters most, was guidance.

Growing up, they learned values and morals quickly. They learned the importance of making decisions, which would result in rewards, and which would result in consequences. As I said, I wanted them to have a better start in their adult life than I had. Whatever cliche you want to use, trial by fire, school of hard knocks, there was no reason for my daughters to learn the way that I did. I needed them to learn how to communicate when issues needed to be worked out. I wanted them to learn how not to make the financial mistakes that their parents made.

It appears that in those regards, I have succeeded. Fortunately, everything has worked out in the things they have done, just as I said it would. It would have been nice to have gotten advice like I gave my daughters, from anyone, anyone.

But what about the fun stuff? My health history has made that a bit more difficult because I can no longer do the things that I once used to, especially with them. I am still about the opportunities that I want them to have and if I get to watch along the way, that is living vicariously through them. I get my greatest joy seeing their smiles, whether it is skiing, swimming with dolphins, or riding a roller coaster. Them getting to have fun, is me having fun.

The great thing in the end, is the direction that each daughter is going in, is their direction, their dreams, not mine. I want only for them to be happy, healthy, and prosperous. How they get there is up to them. They just know that they have my endless support and guidance.

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

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