Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

You Worry About You. I Will Worry About Me.


The news is encouraging. States and counties all over, are finally seeing lower transmissions, hospitalizations, and as the trend goes, deaths from Covid19, from the current variant. Our fingers are all crossed that this will be the end to the pandemic, so that it can be dealt with more like a flu, as it was often mischaracterized in the beginning. Because like the flu, there are now vaccines and treatments. And that is just one main difference. In the beginning of the pandemic, there were no vaccines or treatments. It was clear this was no flu. And the bigger distinction, flu never took the lives of so many from one outbreak as Covid19 has taken.

For the longest time, all we could do, is follow recommendations for something we had no idea what we were dealing with. It should have been no big deal really. We initially were asked to wash our hands and stay a decent distance from each other. Admittedly, the whole mask recommendations were a big debacle in how they were handled, whether due to shortage of supply, or efficiency, or even laziness by those unwilling to do the most basic of covering their mouth/nose when they sneeze or cough. And let me tell you, I saw my share of human “pigs” just spew nasal eruptions directly to the store shelving in front of them, no barrier between their face and those exposed during this time.

I will not waste my breath on the endless political arguments and false tropes on what was necessary to get through Covid19. Here is what I do know. I have followed the recommendations, ALL of them. I am one of the few that I know, that has still not been tested positive. And I plan to keep it that way. Which means that the mitigation efforts I followed did work. I want to be clear, this is not a judgmental statement either. The mitigation efforts may not have been perfect, but clearly they did prevent the pandemic from being worse. But it would have definitely been better to have more people willing to do what was necessary. No doubt, this would have been over sooner.

So with numbers continuing their downward trend, mandates and recommendations are being dropped by states and local governments. There are still some that are keeping efforts in place as they are just not there yet with their numbers. Even with the constant updates from the CDC, my daughters school district held an emergency meeting yesterday, and voted on an updated safety policy to reflect the new CDC guidelines, which now reflect masks being optional. And in spite of the meeting being held to change the mask requirements, there were so many parents still expressing their political outrage at something that was now a moot point.

I did not even need to ask my daughters, if they would continue to wear their masks for the time being, to wait for numbers to go even lower. They are doing it willingly. Because they know how important it is to those in their lives, especially me, that they not be carriers of Covid19.

But not everyone will be like my daughters. There will be a major “release” of those wanting to shout from the rooftops “off with the masks,” by anyone who has been opposed to them. In just the last few days, I was told twice, and I emphasize “told,” I “could and should” take of my mask. They see the removal of the mask requirement as if it were proof to them, the masks were not needed in the first place.

Again, I have not had Covid. And I do credit masks for that. I do not do crowds even without the pandemic. I have not stayed isolated “in fear” as some proclaim politically. I get my own groceries. I pump my own gas. Last Summer, prior to the Omicron outbreak, I even took my daughters on a small trip. Neither they or I caught Covid, because we still followed the recommendations since we were not done with Covid19.

They understand that I have a compromised immune system, and struggle to maintain antibodies. I have already had three full doses, which it took to get me the coverage needed. A blood test next month, will likely reveal, my coverage pretty much depleted, needing a fourth dose. Meaning, I am still at risk. But I am not going to hide. I am doing all I want to do. And I am doing it with the advice given to me by my doctors.

So, when someone says to me, “you can take off your mask, I’m vaccinated” or “take off that mask you don’t need it,” I politely say, “yes I do.” It does make a difference to me. You do what you want to do and I promise I will not say anything to you about it. All I ask is the same in return.

The downside to the mask for me, as a cancer survivor who struggles with a multitude of health issues and restrictions, I do all I can to hide it from everyone physically. The outer shell that is my body, hides the trainwreck inside. But the mask, will let everyone know, there is something wrong. I am okay with that, because I follow my doctors’ advice and recommendations. They know what I must do to live through this crisis.

Sugar And Spice…


The nursery rhyme goes, “sugar and spice, and everything nice. That’s what little girls are made of.” This is one of many rhymes and lullabies my daughters heard from me when they were younger. There are still buzz words and phrases they hear from me, that remind them, I have not forgotten their childhood memories they have given me. Of course, that often more likely results in the teenage “eye roll”. I don’t care.

Those days are so long ago now, and Easter dresses and other holiday outfits, are now prom gowns and other formal dance dresses.

But this moment is more than just about inevitability. It is yet another milestone that I have been able to reach in my cancer survivorship, and with all the health issues I have faced because of that survivorship. In the past, many of my caregivers often accused me of understating and undervaluing the events that I have gone through, just because I keep on “keepin’ on.” It is all I know.

The reality is, and words I will never forget hearing from my cardiologist, I was dying back in 2008. It was “not a matter of ‘if’, but ‘when’ from a fatal heart condition.” Not my cancer, but an issue related to the radiation therapy I received for Hodgkin’s Lymphoma back in 1988. That therapy has cause many issues, just to my heart alone.

My daughters now old enough, did not witness my cancer journey, and were just toddlers when I had my life saving open heart surgery (the first of three eventual heart surgeries), so they really do not have many memories of that. As time has gone on, they have seen more of the issues I struggle with, but now they are older and can understand why.

They understand it goes beyond a Dad being all sappy and mushy as I cling to pictures with the Easter Bunny and playground games, and then look at them now, and lose it.

My doctors now know, I do not underestimate or undervalue the medical challenges I have faced. But boy do I celebrate each new milestone and event, I otherwise would never have seen had it not been for the medical experts and the science that found the cures and surgeries to help me heal.

I warned my older daughter that with this being her last semester of high school, these next few months were going to fly by. We are already through two months, and prom season is around the corner. Another milestone by all rights, I know I am more than lucky to be able to see.

And The Beat Goes On


Of all the issues that I deal with from my treatments for Hodgkin’s Lymphoma over thirty years ago, my heart has consumed the majority of the focus. Obviously, the heart beating is the most important factor in our life. My first heart surgery was an emergency double bypass for what is nicknamed a “widow maker” blockage (the name speaks for itself) of the main artery to the heart. Then, eleven years later, a second heart surgery to place a stent in another major artery of the heart.

It is the third heart surgery, just over four months ago now, that psychologically had managed to jar my thinking. The diagnosis was “congestive heart failure.” The widow maker had it occurred would have been an instant event, and without immediate intervention, as my original cardiologist put it, “was not a question of ‘if’, but ‘when'” I was going to die. But in the years that have passed since then, I had never seen the words “congestive heart failure.”

Being as involved in cancer and survivorship support, I have heard of CHF, many times. And really none with any positive outcomes. From those I knew, if you were diagnosed with CHF, there was really only one eventual possibility to survive it, and that would be a heart transplant. Heart transplants are not an easy thing to get done as it is. But it is literally unheard of in my world of Hodgkin’s survivors. Because of the chronic, progressive, and permanent issues, we are typically not candidates for heart transplants. The odds of survivorship are insurmountable. We may be getting closer to that option, as last year, a fellow survivor fought hard enough, and advocated enough to finally find a doctor willing to perform the transplant. Alas, there was a complication pre-surgery, which then disqualified her for the transplant. She died soon after.

It is easy to get lost in the words “heart failure.” Simply put, it means that the heart is not beating as it should. It is not however, always as bad as it seems. There are certain levels of heart failure. For the purposes of today, and this post, I am referring to the heart valves. There are four: aortic, mitral, tricuspid, and pulmonary.

What leads to heart valve disease can vary. You can be born with valve defects. Infections are also a cause of heart valve disease. Heart attacks and other cardiac events can cause damage to the valves. Other factors can include diabetes, obesity, high blood pressure, and high cholesterol, all contribute to heart valve disease. And then there are causes, created by curing other illnesses. Such is the case of treating cancer. Exposure to chemotherapy and radiation therapies can cause progressive and cumulative damage to the heart valves. I can speak to this personally.

Unless you are under a cardiologist’s care, it is difficult to recognize when you are dealing with heart valve issues. But the symptoms are there. The trick is to recognize them. Some symptoms can be quite subtle and almost unrecognizable, such as lightheadedness, more tired than usual, or even feeling “off”. A little more attention-getting could be an irregular heartbeat you feel, or a flutter, perhaps even chest pains. And the most noticeable, swollen ankles and SOB, shortness of breath. Though I had been aware of my valve issues for more than a decade, my health history required a lengthy “wait and watch”, to determine the right time to repair the affected valves, as my breathing issue got worse, I could tell the time was getting close. Something needed to be done.

There are various means to fix bad heart valves from open heart surgery to methods using trans catheter means (through the leg), much less invasive. And that is the experience that I now have.

What you are looking at is a replica of my new aortic valve. And it is amazing to know, it is close to its actual size. This is what is known as a bio valve (artificial). The other option is a mechanical valve which results in a much more monitored after care and precautions.

Whichever valve is used, the result following the procedure, provided your symptoms were severe enough, is immediate relief. After more than a decade of feeling this way, four months later, my heart is still working great, well, better than it was. I still have other issues with the heart that have to be addressed, and my other non-cardiac issues, but for now, I am enjoying every step I can take without collapsing from the lack of proper blood flow. And you do feel the difference.

So today, is Heart Valve Disease Awareness Day. You might just be surprised who is celebrating today. Celebrate with them. You and they have that chance.

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