Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

This Cannot Be Stressed Enough


A tragic story came across my news feed this morning. A young man passed away from just two weeks into his treatments for Hodgkin’s Lymphoma. Now I need to be clear, the post appears to have come from a friend, not a relative so the details are coming third hand.

It needs to be stressed, his passing is quite complicated, or rather, from complications. He did not pass from Hodgkin’s itself, and not likely, possible, but not likely from his treatment itself. There are a lot of unknowns with this post not being from a direct family member, so I want to be careful not to speculate. The person posting the article said that he evidently had an infection, but had confused it with possibly being side effects from the chemo. By the time he sought help, he was full blown septic, and passed away. His profile picture shows a young man, probably not even thirty years old, and likely quite healthy otherwise.

Again, I want to be careful with what is known and not make any determining conclusion as to what happened. Because I do not know, and neither did the person writing the post. And though I am not a doctor, I am only fairly certain, neither is the writer. But here is what I do know from personal experience, and my involvement with the cancer community.

Our bodies do let us know when something is wrong. But it is more than just noticing, action needs to be taken. The writer mentioned that her friend was not feeling well for quite some time. I will admit that I am someone who “ignores” or does not recognize when something does not feel right. I have had numerous lectures from medical personnel, that I should have gotten medical attention much sooner, as I look at them like a deer caught in headlights.

I am not sure when this young man developed his infection, and I would only be assuming that it had to be after his treatment, since bloodwork is done prior to the administering of the treatment, and an infection likely would have shown in the bloodwork, and his treatment would have been halted until the issue had been determined and treated. And of course, once treatment is administered, any number of side effects can occur with any level of discomfort. Here is where it gets difficult. And here comes my warning to you, whether in treatment or a everyday healthy human being.

If you truly do not feel well, especially after treatment, as I often tell cancer patients, “if you eye lashes hurt, call your doctor. Let them decide if it is something that requires attention or if it is nothing. They are the ones with the education and training.” All to often, we simply do not want to bother our care staff, because we “know this stuff was supposed to happen,” or “it’s not that bad,” or, “they have more important and sick patients to worry about.” NO! NO! And NO! If you are feeling something unusual, you are the most important person to your doctor and they are the only ones who can determine whether or not you need additional attention.

Again, I do not know the chemo regimen the young man was getting. But if it was the standard, which has been used over four decades now, there are drugs used that can cause issues immediately, but when they do, there is usually time to catch them before any true damage is done. This man’s situation does not seem like that is what happened, but rather, having an infection, receiving a treatment, which of course, will drive down the body’s immune system (its ability to fight infection), and send the situation to a point where little if anything can be done. And that is what appears to have happened.

Admittedly, I can relate to this young man. Just as an example, one of many actually, when I refer to the time I had my emergency bypass, I had symptoms for over four months, and did nothing because I did not think of it as a big deal. I had gotten to the point where my cardiologist had told me after the surgery, “it was not a question of ‘if’ you were going to do, but ‘when'”. I would love to be able to write that I learned my lesson after that, but I did not. And it is not something I do on purpose. I honestly do not recognize when I have symptoms. Yes, I have had other situations since, some, just as dire. And if it were not for someone around me, actually noticing my facial expression changing or some other sign, this story could easily be about me.

Listen to your body. It lets you know when something is not right. Your life matters. Let those trained in medicine tell you, if it is something that requires attention or not. And this does not matter if you are dealing with cancer, surviving cancer, or never had cancer.

A Letter To My Daughters


To my daughters, in less than two months, you will both be students in college. Both of you have your directions that you are going in. Both of you have an inclination of what you want to do once you have earned your degrees. But know this, I have done all that I can, from the times that you were placed into my arms, through elementary school, middle school, and high school, to prepare you for this next part of your life.

I wanted to give you as much as I was able, definitely more than I had been given. And though our journey as a family did not follow as planned, I am hoping that the lives we shared with each other, provided you both with the foundations and experiences, to not only get through college, but in each of your lives.

I am going to put aside all of the childhood and family memories that I have of us because they will always be there for me. But now, as this first part of your life has been completed, I want to focus as I watch you both, become the women you were meant to be. The decisions you make are now your own. I am simply here, with words should you need advice. The experiences you have, are yours.

As you continue to grow, and yes, that means get older (I told you to stay kids as long as you could), keep these words in mind.

Whenever you need, I am just a phone call away. And when I do get calls from you, it will bring me such joy. Whether it is just to say “hi” or “I love you and miss you,” or simply, “I need you,” I will likely reply with “miss you more”, “love you more,” “need you more.” In fact, a billion times more.

Believe in yourselves. I know that I believe in both of you. No matter what obstacles get thrown in front of you, know that I will be there, and I will always support you both no matter how far apart we may be. You will always succeed as long as you keep trying. You used to say that I needed to let you “fall” so that you could learn how to pick yourselves up. And now, it is up to you to find your own way. Yes, my heart will be sad if or when this happens, in silence with any struggle you face, but the sadness will turn into pride when you overcome those moments. Just remember, you can only fail if you stop trying.

People tell me that you are both lucky to have me as a Father. I believe it is the other way around. You are both a miracle to me. The blessings and memories that you have given me so far, have given my life meaning. But I know that I cannot keep you as children forever. I am so excited for what is ahead for both of you. I have been as honest, loyal, and strong for you and with you as I can, whether in times of joy or sorrow. I wanted to be your role model not just for your character, reputation, and morals, but in how you expect to be treated by those you bring into your lives. Of all things I have done with you, it is those examples that I consider the most important thing for me to have taught you both.

Our visits with each other will be less for the next several years, but the moments that we are able to get together with each other, all together or with just either of you, I hope you will be as excited to see me as I am to see both of you. I will be anxious to hear all of the things you have done since I last saw you. I am no longer able to pick you up, hoist you upon my shoulders, but I will always be able to give you the biggest, and prepare for it, the longest hugs I can give both of you.

I know that I cannot promise to be there for the rest of your lives, but I can promise to be there for both of you, for the rest of my life. No matter what you go through, I will always love both of you, as I have always said, “to the moon and back.”

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.

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