Paul's Heart

From Patient To Survivor To Patient… Again

It is hard for me to imagine with my health history, that there is anything to experience something new or different when it comes to my health. Yet two weeks ago, that is exactly what happened to me. The difference this time, I actually noticed something not right, which is something I am not known for. My reputation is that I wait to respond to a medical issue until I am critical to do something or have my body react in such a way that cannot be ignored.

I have no shortage of health problems, all related to the treatments I received for Hodgkin’s Lymphoma back in 1988. In fact, the list of diagnosis would fill an entire sheet of paper. Some are just diagnosed and just “there,” some are being watched, and a few have a bit of a higher priority and are being more closely monitored. It has been since 2021 that I had my last procedure, to replace my aortic valve (my 3rd heart surgery). But if you read
“Paul’s Heart” you have seen the above picture before, the number of “swords” of Damacles that fairly accurately describe my health. Well, it appears another “sword” is about to drop, or is at least swinging perilously as legend describes it.

While out on an early morning walk, all of a sudden, I felt my body drift to my right, uncontrollably, I could not stop it. To be clear, I am not sure if I physically drifted, or if the sensation in my head, that of a lava lamp, was causing me to feel as if I was drifting. I did not fall over anything which is what is making it hard to figure out what happened. The episode lasted approximately a minute. Nowhere near my car, and in spite of my phone being in my hand, I returned to walking back to my car, my senses now straightened, and returned home.

To be clear, I have some of the best doctors taking care of me. I have also lost several of my best advocates to retirement. Their replacements are still learning about me. Like I said, my reputation, I often do not respond and react appropriately when a medical crisis pops up. This was not going to be any exception. I needed to be certain that this warranted further attention. The last thing I wanted to happen, which happens to many of my fellow long term survivors with late side effects, was to be gaslit, or told I was being a hypochondriac (this will be a separate post). Either of these two will completely shut me down. My prior doctors all know me well enough, I do not complain about my health, unless something is definitely wrong, and yes, likely very serious. It may take a little digging to find it, but there will be something there. But to tell me it is in my head or I am being a hypchondriac will shut me down, and possibly cause irreparable harm.

Though I am generally intimidated using it, I went to my AI app and stated what happened. I think if AI could dial 911, it would have, as the app began to actually argue with me to definitely seek help, based on my prior health issues. AI listed some possibilities, including a TIA, transient ischemic attack, sometimes referred to as a baby stroke, a clot, and a few others. The point was, that I should seek medical attention. I have a family history of strokes, both my mother and father, and my maternal grandfather. Add in my radiation history and chemo history and other heart stuff, I have quite a few strikes against me.

Though it took longer than it should have, a few days later, I reached out to my new primary care physician, my cardiovascular team, and my cardiologist. The first two decided to see what my cardiologist would find.

As if this was not difficult enough to deal with, I had some other things that I was dealing with. As John Lennon said, and I am paraphrasing, “life is what happens when you are busy making plans.” I am my mother’s caregiver as she recovers from a fall, and I had a scheduled trip to visit and attend my oldest daughter’s college graduation and my younger daughter’s 21st birthday. And no, AI had no answer for how to juggle everything, but it did continue to argue with me on what I should be doing, and was not.

My cardiologist had ordered a heart monitor for me. Yes, this is the device in the palm of my hand. The last time I saw a monitor, it was a huge box, about twice the size of a cell phone, hanging around my neck. But this monitor, is just larger than a zip drive, and will stick to my chest with a pair of sensors for just over two weeks, to measure my heart rate for any abnormalities.

Great, abnormalities. When it comes to my heart, my heart is a mess and it really does not need any further attention. I have had three surgeries, a double bypass of my LAD and a stent of my RCA, along with my aortic valve TAVR. But I still have other issues as well as some new diagnosis. My mitral valve is not great. I have a left bundle branch block (an electrical issue). My septal wall moves in reverse. I am in congestive heart failure as my ejection fraction currently stands at 40%. Recently I was diagnosed with myocardial ischemia (my heart does not get enough blood). And for purely entertainment purposes, I have an excitingly audible murmur, which draws attention from anyone who wants to hear a really strong murmur with their stethoscope if they have not heard one. I am a freak and should charge admission for this.

So sure, this incident should have a decent level of concern and response considering everything I deal with, especially with my heart. Just another “sword.”

The monitor arrived the day after I returned from the college graduation. And on it went.

It is adhering with tape, just below the top of my breast bone. You can see part of my bypass scar just below the monitor sensor. I don’t feel anything happening with it, and it does not make any noise. And compared to the old bulky type of monitors, this one is barely noticeable. Now, all I do is going about what I do, and make note if I am able, of any symptoms I notice, which again, is difficult for me to do.

I know the things that are being looked for, and no, I do not need any new diagnosis made. And I could go the whole test period without the monitor picking anything up, especially if this was a one-off event, which is what I am clearly hoping for.

I am just thankful that my doctors do not gaslight me, or treat me as a hypochondriac, and instead take my symptoms and descriptions seriously.

Was It “Worth It?”

It is always bittersweet for me when I share this type of announcement. I made it clear when I completed my treatments for cancer, Hodgkin’s Lymphoma, I wanted to do what I could, to show others, that they could do it also. And from day one, that is exactly what I have done.

And in 1982, never did I think as I was the sole participant for an American Heart Association fundraiser as a senior in high school, a few years before my cancer diagnosis, that I myself would become a cardiac survivor more than twenty-five years later, a situation actually caused by my cancer treatments.

Being a survivor of even just one of these medical crisis is reason enough to celebrate, but to face two different medical challenges is a whole other level.

Like I said, my longevity is bittersweet, because as amazing as it is to have survived this long after both cancer and cardiac events, there are so many other survivors of both, who came into my life, and are no longer here. This, is what I struggle with, my “survivor’s guilt.” I do not feel guilty for my surviving either of cancer or cardiac issues, not at all. But I feel guilty that so many others have not. There is no rhyme or reason for who continues on and who does not, even if we underwent similar treatments or procedures, does not guarantee us longevity. There is no answer to “why them, not me?”

I know so many long term survivors of the cancer that I faced personally, Hodgkin’s Lymphoma that are with me today. And they are an inspiration to me, as many are now 40 and 50 years into their survivorship. As they are an inspiration to me, at 37 years of cancer survivorship, I want to be that inspiration to others behind me. That is why I still celebrate my survivorship, as uncomfortable as it makes me feel.

But as each year passes, adding to my longevity, that means more milestones that I will get to experience. This week, I will experience two milestones, as my younger daughter celebrates her 21st birthday today, both of my daughters officially over the age of 21, and my older daughter will be the first of two college graduations I will get to witness within a year of each other.

I want to be clear, when the day comes, my daughter’s graduation will not be about me, my milestones, or my survivorship. Her graduation day is 100% about her, her choice of school, her efforts to complete her schoolwork and projects, and getting up on that stage to get her degree that she worked so hard for. I am so excited for her, so proud of her, and we will celebrate this momentous occasion for her.

So before I can get to that point, I need to release my survivorship issues in regard to this milestone. Because it is a milestone for me to still be here to witness my daughter graduate from college. Even back in my days when I was battling cancer, I was often told by my therapist, that I did not take seriously, the toxic severity of what I was dealing with when it came to my treatments. And there were multiple times that I was in critical condition from various medical events. Have I earned this opportunity to be celebratory? Absolutely. But as always, my heart is also heavy for those who have passed on.

I have many parents in my life, while I know they are happy for my daughter, and all the things I have gotten to experience with my daughters over the years, I know their hearts carry a heaviness that never goes away, having lost their child, never to have a memory like this. Again, I truly believe those in my life in this situation are happy for me, and want me celebrate, and will congratulate all around. I just need them to know they are in my thoughts as they remember their loved ones.

And then there are the thousands of survivors that I have come across in my survivorship. Yes, thousands, literally from all over the world. Of my original “core 4”, those who were treated and I knew around the same time frame, only two of us are left. And there are over a hundred more over the decades that I have had to say goodbye to, due to complications of their survivorship, or some other spontaneous event. I know those who have gone on, if they were here, would be joining my other fellow survivors in cheering on my daughter. We truly appreciate how much everything can turn on a dime, and be gone just like that. And against all odds, starting with the original health crisis, a battle with cancer, I am still here to watch my daughter receive her degree.

My life has not been all about cancer. Sure, I have done what I can to advocate for patients and survivors. But my biggest role has been “girl dad.” My daughters laugh at all the photos I have taken over the years of them, but who do they call when they need a photo from a certain time doing a certain activity? This guy. I love going through the thousands of photos over the last twenty years, remembering how they got to this moment.

But this week, the moment needs to belong to my oldest daughter, not me. And I will do all that I can to make sure that happens.

When The Body Tries To Warn You – Part 6

The day had come. All of my tubes had come out, and my PICC line was removed. All that remained were the telemetry wires, and a huge patch/bandage over my sternum. I wanted my daughters to come to the hospital. I needed to see them. I know that I did not look perfect, but I no longer looked as bad as I thought. Them seeing me in this bed would not scare them.

It is always the hardest thing, what and how much to tell a child is happening. Of course a lot depends on age. And on top of that, at their young ages, they already had a friend who lost their father to a cardiac incident, so how I explained everything would make a huge difference to them.

I was told that my daughters had arrived at the hospital and were on their way upstairs. I felt a huge swell of emotions as this was all I wanted, to see my daughters again, to know that I was going to have a “rest of my life” with them. In the distance I could hear my older daughter talking, noticing everything as she walked the hallway. And then, there they were, standing in the doorway. It felt like forever. You could see excitement in their eyes to see me, but confusion as to “what happened to you Daddy?”

My older daughter walked cautiously around the bed, of course gravitating toward what was left of the machinery, looking at all the blinking lights and numbers. My younger daughter was a lot more deliberate, seemingly moving an inch at a time.

“Hi Girlies! I am so happy to see you! I have missed you so much! Daddy is all better! The doctors took real good care of me, and I am feeling better. I am going to be better!”

It is often asked, “what and how much do you say to a child when dealing with a serious issue?” And the answer is always, you tell the truth, but you keep it age appropriate. My daughters were 5 and 3 years old, and how I greeted them was all that they needed to know. You could feel the collective relief from all of us.

Maddie was still busy checking things out, but Emmy had found her way, lifted up onto the bed. This was going to be a test. A 3-year old has no concept about a healing breast bone, anything could happen. This would not be a blooper if it did. As she sat by my waste, I grabbed her hand, and told her once again, “Daddy is going to be okay now.” A few moments later, she repositioned herself, now laying her head by my pelvis, nestled, almost as if she were guarding me, keeping me safe. Maddie’s inventory of my room was completed, so now there were 5-year old questions to be answered.

I don’t know how much of the environment sunk in to my daughters. But I could tell the impact of them seeing me, not bouncing all over the place completing activities or playing with them. They knew I was not feeling well. But they also knew that what I told them the other night, that I was going to be better. And that is what they saw.

Now I could say that I was recovered, that I made it through this harrowing surgery. Another day or two in the hospital and I was going to be allowed to return home. There was just one minor task that needed to be completed. I am going to keep this from getting too graphic or detailed, but it was still a major issue. I had not had a bowel movement since my surgery. In fact, with stethoscopes, nurses could not even hear any gutteral noises. Again, without going into detail, I have a complicated system, so while this was normal for me, it was still unacceptable to them.

And in it came, “power pudding.”

Power pudding. I had no idea what was in it, but I was told it was guaranteed to make me go. Later I would find out the ingredients, apple sauce, prune juice, and wheat bran, mixed together until it produces a pudding consistency. Sadly, my medical team was disappointed and the pudding did not produce results.

In spite of me not meeting all of the “unofficial” requirements or benchmarks, I was released and sent home, with the heart shaped pillow as pictured in the beginning and above. Its use was to help me protect myself with sudden sneezes or coughs, or any other kind of movements that would put pressure on my breast bone. I still have it to this day, 18 years later. And also 18 years later, I am still here to witness the many exciting memories to come since I have gotten to see both my daughters grow into adults, now on the doorsteps of graduating from college. Had you told me back in 2008 that I would still be here to this day to see this milestone, even my cardiologist admonished me, “it was not a question of ‘if’ I would have that fatal heart attack, but ‘when'” had I gotten there any later.

There have been many times in my survivorship, when I have heard fellow survivors expressing experiencing that similar sensation that I had. Besides being a major trigger for me, I have not been wrong yet insisting on them going to the emergency room, all facing that “widow maker.” This series of posts was quite heavy, but believe me, it could not be any more important. They call cardiac disease the silent killer for a reason, even with symptoms, either because we are scared of what we think could be happening, or in total denial. And it is much better not to take any chance, go to the ER, and let them either diagnose you, or say there is nothing wrong. Just you don’t make the wrong decision.