Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

18 Jul 2023

Your Realness


My daughters and I were having a conversation about their late uncle, who passed away from ALS (Lou Gehrig’s Disease). It has been nearly eleven years, and I still miss him. As my older daughter understands and reminded me, “I know he was like a brother to you, not just a brother-in-law.”

Through Mike’s battle, he taught me many things. But one thing stood out, probably having the biggest impact on my life. Admittedly, I still have a hard time executing that lesson.

At the time of his diagnosis, I had been struggling with the diagnosis of all the different late side effects being caused by my treatments for Hodgkin’s Lymphoma. I was dealing with a swallowing issue, unbeknownst to me, caused by radiation treatments for Hodgkin’s Lymphoma. The mechanics of the whole thing is a separate post by itself. But the bottom line is that I was slowly losing the ability to swallow, to the point I could not even get water down. I often found myself choking unable to get anything down my throat.

A few months before things got really bad for me, my brother-in-law, had begun developing his own unique symptoms, his speech slurring. Many of us would joke that he had one too many “Jack and Cokes.” He was at a loss for what was happening, because it definitely was not caused by any drinking. Testing would reveal and confirm, Mike had ALS. The disease is discovered from either muscles twitching or getting weak, swallowing, or even, slurred speech.

As Mike’s speech issue and eventual swallowing progressed, he soon found the need to rely on artificial intelligence to assist his speech. At the dinner table, we soon discovered a problem, in stereo if you will. We both were having serious issues swallowing our food, caused by different reasons.

But if there is one flaw in my personality that I know that I am aware of, it is perspective. It can work for me, or it can work against me. No matter what I am dealing with, I will always believe someone is dealing with something worse than what I am dealing with. And with my brother-in-law, that was definitely the case. As I sat across the dinner table from him, me not wanting to eat for fear that I would be the one to actually choke at the table, Mike struggling to get anything down himself, I blurted out, “so Mike, which one of us is going down first?” After a few awkward chuckles, I continued, “I’m sorry Mike. I have no room to complain about this. What you are going through is far worse.”

Mike replied, “but that does not make what you are going through any less real, or severe. The only difference is each of our prognosis. That does not make your pain any less real, or relevant. Go easy on yourself.”

I would like to think it was at that moment, that after twenty-two years, I finally learned to do just that, but after thirty-three years, I still have not. Mike’s message is one that I share with any of my fellow survivors who have a moment, when one of their late term issues just happens to be overwhelming them, and they feel in the grand scheme of things, compared to other of our survivors, they may just have it better and therefore should discard their feelings. No, they should not. The feelings that they have are real, and have a huge emotional impact on their survival.

Look, during these three decades of survival, I have said goodbye to so many fellow long term survivors. A shorter lifespan, due to all the trauma that my body has been put through is expected by many of us, but by no means dwelt on. But that is a reality. Emotionally, survivorship takes its biggest toll, because that is when we are most likely not to give ourselves the slack when we need it most, especially if there is another survivor going through something we perceive as more serious. As Mike said, “it does not make it any less real, and deserves attention if necessary.”

A few weeks ago, I happened to crack two of my ribs, just sitting in my chair. I bent over to pick something off of the floor. I heard it, and worse, I felt it. And though I am known for having a fairly high pain threshold, because others have it worse than me, this is one time pain actually has my attention. This injury is likely related to osteopenia that I developed as a long term side effect from my treatments. But where is my focus? On my other fellow survivors. I consider this a minor inconvenience as I will be restricted from certain activities as my ribs heal. Though as I worry about my other survivors and their health issues, that does not make my injury any less real.

Posted in Adoption, Bullying, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
15 Jul 2023
1 Comment

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

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