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.
I am going to do something I have never done on “Paul’s Heart.” In fact, over the years, I had been reminded of this several times by the particular person I am going to write about today, my sister.
Originally when I began writing this blog, it was not intentional that I did not include her in any of my posts, I simply had no reason, or there was no tie-in, to what the purpose of my blog is and always has been about. From the beginning, this blog has been about providing inspiration and support for those battling not just cancer, but any serious illness or crisis, parenthood as a cancer survivor, especially one with serious late developing side effects, and parenting itself, now as a divorced father. My sister simply never played a role in any of those posts.
My sister often complained that I never included in her in my posts, which did include my mother and my father occasionally. But there was nothing to write to include her. I do not write posts about others who do not have a direct correlation to “Paul’s Heart” or the stories I write, unless I share a guest author, and that is normally to share an inspirational cancer related story.
So, why does my sister get a story now? And I will apologize in advance for any awkwardness you may feel while reading this. Because she is gone. As in dead. She died back in September from COVID19. There, I said it. Her family will not. But I will.
It is unbelievable, that it has been over two years now, that we have been dealing with Covid19, in various stages and surges, and too many still can not get on the same page as far as what needs to be done to not only survive it, but now accept that we must live with it. Just as we were divided on accepting that it was real, just as we were divided on how to mitigate it, we are divided on how to live “with it.”
As someone who has fought a life-threatening illness, at one time thought to be one of the worst things to face, cancer, Covid19 has taken the status of most serious health concerns away from cancer, especially with death or severe illness now preventable. Back in 1988, you hardly knew anyone who had cancer, let alone survived it. Today, you are easily likely to know someone who has or is battling cancer. But we do not give it much thought. We have diagnostics for it. We have treatments for it. We just do what we have to do to hopefully survive it.
The one thing that I can state with certainty that both cancer and Covid19 have in common, it does not seem to be taken seriously, until it happens to you, or at least to someone very close to you. Until cancer, or now Covid19, personally affects or affected you, it either did not matter or did not exist.
Over the last two years, I would have to take off my shoes to count the number of people I know that have died from Covid19. In fact, it is actually easier for me to count the number of people I know that have not been diagnosed with Covid19 than those that have tested positive. But I am not going to talk about the others that have died from Covid19. I want to be clear. This is not me reporting something reported on the news or social media. This actually happened.
Now, in full disclosure, I need to state, my younger sister and I were estranged for a long time, for several reasons. As young children, I guess you could describe our relationship as that of a normal brother and sister. But, as we got older, things changed. We developed different interests, and as adults, these interests eventually developed into hard line stances against each other. No matter our differences though, we could at least remain in the same room. But things would get extreme between us with major events affecting our families, and things would be said, acts would be done. The most serious of those reasons destroyed our relationship as brother and sister permanently, something I considered unforgiveable and I was willing to take to the grave. And that has been guaranteed now.
My sister made her choices. I can criticize them, judge them, and condemn them. But they were her choices. I do not have to understand them, or try to figure them out. She made those choices. She had to live with those choices. Choosing a likely death over certain prevention, now she is gone.
For whatever her reason, she chose to believe the many different forms of false tropes when it came to Covid19, to finally settling in the end, of relying on her faith to protect her from Covid19, or to save her from Covid19. She preferred certain death from Covid19, than possibly, POSSIBLY not guaranteed side effects from the vaccines, which even had she developed any, could have been dealt with, and protect herself from the virus.
Like I said, she had her reasons in the beginning that she chose and fought against mitigation and prevention. But when she finally settled for her final excuse, she chose religion. And this is what I do not understand.
I know a tale has been told in religious circles in varying forms, referred to as the “parable of the drowning man.” In this story, a man, drowning in the ocean, is approached by a fishing boat who tries to rescue him. The drowning man says “no.” A yacht sails near him, steers toward him, offers to rescue the drowning man. Again, just to be told “no.” Then, a coast guard helicopter flies over, drops a life preserver, with the guard telling the drowning man to grab onto it and he will be pulled up. The drowning man says “no.” Finally, the man drowns. Upon his arrival at Heaven’s gates, the man sees God, and asks, “why didn’t you save me?” To which God says, “I sent you two boats and a helicopter and you turned each away.”
I get that religion wants to believe in miracles. But for my sister to have chosen death, over the miracle of the vaccine, was a selfish and false choice. Many religions go to extreme lengths to save the human life, protesting from abortion to the death penalty. Then why, during this pandemic, will so many in these “religions” choose death like my sister did?
If you notice, I give no opportunity for anyone to shout out things such as “this is what the media wants you to hear.” Sure, what I will tell you next, sounds like it could have been a sound bite off of “liberal” media, to convince you or scare you. But I assure you, any similarity, is real and legitimate. This is my sister’s Covid journey and spoiler alert, death.
My sister, two years younger than me, was hospitalized with Covid pneumonia. In other words, it had gotten that bad already by the time taken to the hospital. And this was in spite of other household members being positive with Covid. Soon after, she had worsened enough, to need to be put on a ventilator. A few days later, was her 54th birthday, which she spent alone, under sedation. Her family members called in to her, to sing “Happy Birthday” in hopes that she might hear their voices. Eventually, her body could not take the virus any longer. And yes, if this all sounds familiar because you did hear it on television, this is how it happens in real life. All those nurses and doctors who did everything they could to save my sister’s life, instead, witnessed another preventable death. And they are the ones I feel sorrow for. They knew their careers would have some tragic endings, but not like this with so many, choosing this fate, leaving others to deal with their faulty decisions.
To those that know me, I have been clear. If you refuse to take precautions, if you refuse to get vaccinated, if you even deny the seriousness of Covid19, I will never shed a tear when you die. And this goes beyond any animosity my sister and I had between us. I cannot and will not grieve for my sister. But I am angry. Angry at the selfishness that my sister exhibited, for what her selfish decision would do to our mother, who still grieves as much as the day my sister past. With all the health issues I must deal with, all my sister had to do, was get vaccinated, and my sister would have easily outlived me. My mother should not have had to bury her daughter. No parent should have to bury their child, especially when there is a choice that could have prevented it.
No one in my sister’s family wants to talk about what happened. The “church” that she belonged to, does not talk about it, just that “death is an ugly thing”. And it does not seem that my sister’s death will make any impression on to her surviving family members to get vaccinated. And they watched her fucking die!
I have told my mother, she must move on. I know she has unimaginable pain. She did not ask for that pain. She does not deserve that pain. And the fact that everyone else that surrounded my sister does not care enough, that they are willing to possibly put her in that situation again, speaks volumes. I have done my best to encourage my mother to continue following the recommendations, including getting vaccinated and wearing masks, and like me, avoid a positive test, because that is the only guarantee not to lose our life to Covid19.
This post is not about having a debate. After two years, as proven by my sister’s fate, you either believe the situation is serious enough to care, or you don’t. And there is nothing my sister’s death will do to change that.
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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