Paul's Heart

Been A Long Time Dark Friend

One of the more common issues I deal with in support of patients and survivors is something called “scanxiety,” a combination of the words “scan” and “anxiety.” Though some will argue that it is not a real word, those of us in the cancer community can assure you, it is quite real.

Scanxiety occurs at two different times, during diagnosis, and during the follow up phase in remission. There is the anticipation of what will be discovered, rather diagnosed, and the paralizing fear of “is it back.” And while those untouched by cancer may see this as irrational behavior, quite the contrary, it is quite normal. And to be clear, this is not a mental disorder, but a rather very powerful defense mechanism. But as I said, and I stress, IT IS A NORMAL THING TO EXPERIENCE.

A patient/survivor can experience all kinds of symptoms from crazy heartbeats, irregular sleep habits, a messed up stomach especially resulting in awful bowel reactions, and of course, unbelievable levels of stress resulting in lashing out.

There are all kinds of ways to deal with scanxiety from meditation and exercise to medicine. But as I always point out to everyone, keep everything in perspective. Control, you do not control how the scan will come out. But you can focus on your actions afterward, whether good news or bad news. That you can control. If you are symptomatic, you need to remember, that just because you may have had those symptoms when you were diagnosed, you likely also had those symptoms previously in your life when there was no cancer. If your scan comes back clear, see you next time. If your scan gives bad news, you are going to deal with it, because that is what you do. Is it the result you wanted? Of course not, but you did not come this far just to throw your arms up in the air.

Of course, there will be no one cheering more loudly for a negative scan for anyone than me. And if there is one thing I hope that patients and survivors hear from me, the scanxiety does get better, and it does go away in time, as time goes on. Trust me, I remember those days my first year in remission as if they happened today. And I know that first year in remission is the toughest. But once passed that first year, it does get easier, there is a confidence that builds each year until you hit that five year mark and your oncologist tells you at that point, unlikely the cancer will come back, and no more scans (for the cancer at least).

So if you have been following me and my last few posts, I am dealing with lymphedema in my right arm and hand, likely a complication from my treatments for Hodgkin’s Lymphoma thirty-seven years ago. The belief is that the high-dose radiation that I received has developed and caused raditation fibrosis and scarring, strangling one or more lymph vessels, hence causing the swelling. There was one little curve thrown in, I also have two enlarged lymph nodes under my right collar bone according to a recent CT scan. Though doctors do not feel as concerned for it as I do, I am flashing back to when I was diagnosed with Hodgkin’s Lymphoma back in 1988. I had similar issues then, including the lack of medical confirmations (without a biopsy) that I do now. To be clear, a diagnosis of Hodgkin’s now would be considered a new Hodgkin’s, not a relapse because of the time that has gone by. In any case, that is really putting the carriage before the horse. I am nowhere near the biopsy point yet.

So on Thursday, I had my first PET scan, done on my entire body from my finger tips to my toes. I was not nervous about it other than the usual stress of the IV needle and whether or not they would listen to my concerns needing ultrasound to find my chemo ravaged veins (get a port if they offer it to you!). I definitely was not anxious about the scan either. I am just used to so much medical stuff being done to me, I just put it on the calendar, and make sure I show up. My appointment was completed in less than two hours.

Typically I get results for any bloodwork or imaging studies (whether x-ray, ultrasound, CT scan) within a couple of hours, in time for my doctor appointments involving those studies. I had not other appointments on Thursday, soooooo… just looking for the results of the PET scan. More importantly, get my answer and forward plans for returning my hand and arm back to normal.

Today is Saturday, still no answer. Normally scanxiety would result in panic or even terror for some people, “something has to be wrong!” My scanxiety is more about annoyance. I am prepared for all the possibilities and remedies, but this has been going on for two months, and I want my arm and hand back. And I can admit, I have been checking my medical portal pretty much every two hours. You know the expression, ” a watched pot never boils,” that’s me. Even though I know I am now going through the weekend still waiting, I am still checking the portal just in case. Nope, still not there.

And so I continue to wait, the hardest part. Thanks Tom.

I Have Been Here Before

I have been here before. And though things seem similar, I am handling things differently, reacting more focused.

It was November of 1988, just before Thanksgiving. I was at work, sitting at my desk, taking a moment with my chin resting on my left hand, when all of a sudden I had an itch at the bottom of the back of my skull. As I went to scratch, I noticed more than an itch. There was a lump, felt pretty big too.

Two years earlier, my grandmother had gone through breast cancer. With the lump located at the base of my skull, of course I did not think breast cancer, but it was a lump nonetheless, and I knew that it should get looked at. And so my doctor told me, he was not really concerned, due to its location, that I was likely dealing with some sort of infection, that lymph nodes get swollen all the time. He prescribed an anti-inflammatory, and told me to lay off the exercising for a couple of weeks.

Ten days later, the medicine completed, the lump did in fact go down. And I returned to my workouts. Almost immediately I developed a “stretching pain” in my left arm (the side that the lump was located). I thought I had injured myself returning to the workout load I did, to much too soon.

I returned back to the doctor who seemed to ignore the arm pain, and instead focused back on the lump which had swollen again. He referred me to an oncologist which I did not know what that was at the time, but soon found out when the doctor proceeded to tell me about a cancer called Hodkgin’s Disease. I immediately put the breaks on that conversation, and walked out. I had a sports injury with my left arm. Forget that lump. Five more “second opinions”, finally the last one a sports medicine, all confirmed similarly, there was no injury, I needed the lump biopsied. There is more to this story, you can read in my book “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor.” Long story short, the biopsy came back, Hodgkin’s Disease.

(available on Amazon)

Here I am in 2026, in July, I noticed a condition with my right arm and hand, now swollen. First thought, maybe a bee sting I didn’t notice, perhaps a spider bite, but my arm was clean of any marks. Then my thoughts turned more serious, as I am in congestive heart failure and deal with fluid retention all of the time, and take medicine for it, this swelling was in only one appendage, unusual, but not impossible to be tied to my heart. And so I went to the emergency room, who ruled out a blood clot, did blood work which showed nothing, and preliminary heart testing showed nothing. More involved cardiac scans, a CTA and CT TAA would show issues with my heart I was already aware of, but nothing of concern as far as the swelling.

My doctors feel this may be a case of lymphedema, a buildup of protein-rich lymph fluid when the lymphatic system is damaged or blocked. I have seen pictures of this, and I am lucky, because this could look a hell of a lot worse. So the swelling is the symptom, but what is the cause? There are a mulitude of possible causes, but one potential cause is something called radiation fibrosis, causing damage around some of the lymph vessels or even the vessels themselves, a late side effect from my radiation treatments back in 1989.

I have referenced “The Sword Of Damacles” before. About a man who thought it was not that hard being king. And so the king offered Damacles the opportunity to sit on the throne for a day, with a sword hanging over his head, held by a single horse tail hair, that could break any moment. This represented all the dangers that the king faced in a day, unable to know when or where a danger would come next. So I played with AI a little further with the image.

This image represents every late side effect that I have been diagnosed with so far. Yes, that is a lot of swords, and at any time, any one or more, could fall. Many of my fellow long term Hodgkin’s survivors can relate to this image.

Getting back to my arm and my hand, the two CT scans that were done negated several possibilities, but discovered another possibility for the cause. There are two enlarged lymph nodes under my right collar bone. Shit. While this can easily just be an infection, it can also be a new diagnosis of Hodgkin’s.

I have been here before. No other symptoms or signs. Bloodwork negative, no night sweats or any of the other common Hodgkin’s signs. Unlike the pain I had in my left arm with that one lymph node, it is possible these two nodes on my right side are causing this swelling. But “why” is the concern. So yes, now my image shows a sword currently falling.

My right arm and hand are swollen enough, I cannot close my fist, grip small items, the tightness of my skin is now painful, and I have tingling. And yet, the possible cause is coming from my collar bone. Of all the things I have gone through, I am undergoing a new test for my first time, not available back in 1988, called a PET scan, a positron emission tomography, used to show cells molecular activity. Don’t worry, I am not going to get all sciency. Anyway, a radioactive tracer, glucose based (that’s sugar) is injected to highlight cells that are going bezerk. It should be noted, that it is this process that makes people falsely claim that sugar causes or spreads cancer. It does not. But sugar does play a role in diagnosing cancer.

And that is what I am preparing for, the possibility that I will once again, have Hodgkin’s Lymphoma after 37 years. If I do, it will not be considered a relapse as it has been too long. But even more concerning, there will be more procedures to come, that I am all too familiar with, but also means that I will deal with this lymphedema a bit longer. Of course, if the scan comes out negative, then I can proceed with physical therapy, which is basically a lymphatic massage, to “drain” the lymph fluid from my arm manually, a much quicker solution, and one more favorable.

I am not scared of any outcome or diagnosis. I have faced everything head on from my original diagnosis back in 1988, through every late side effect I have faced over the last eighteen years. I am prepared for whatever I am told.

To be continued in a few days, once the scan is done.

This One Is A Tough One

This was my friend, and fellow long term Hodgkin’s Survivor, Danny. And just like many others before him, his body just could not take any more. I have written many times about other survivors I have known over the years, but Danny was a personal friend that I have known over fifteen years, so saying goodbye to Danny is going to be a lot tougher.

Like I said, I first met Danny over fifteen years ago, at a Johnny Rockets restaurant for lunch in Manhattan. Danny was having his first appointment with Memorial Sloan Ketterin’s Cancer Center Cancer Survivorship Clinic, of which I had already been a patient three years by then. He was in NYC with his wife, though she was not with for lunch or the appointment, and his young daughter was back home in Texas.

Danny spent most of the initial time, trying to gather information from me, on what to expect with this “survivorship clinic” visit, like what questions should he ask, what can he expect to be done, and he did this by listening to what I had gone through over the years. Like many of us, once our bodies have begun going down the “late term side effects” from our cancer treatments path, we don’t feel well. Worse, we feel alone. No one, even our personal doctors have a hard time understanding what we are going through. But sitting down face to face, with another survivor, or interacting on social media with thousands more, that is powerful. That is understanding. Better yet, we know we are not alone, even if those around us do not understand.

I would get to know Danny over the years. We both would go through difficulties with non-cancer related events, such as divorce, I offering him encouragement as he fought for his father’s rights to be able to see and spend time with his daughter.

Danny was definitely a man of faith, he never hid that. He was constantly on the recieving end of my “you’re going to need a little more than faith to get you through this” when it came to his health. So I would have to constantly prod him when it was time to seek medical help, and pray all he wanted on the way to the hospital. But the day he described to me, the EXACT symptoms that I experienced when I had my widow-maker blockage, I demanded that he get to the emergency room immediately. We both had extremely high doses of radiation to our chest, which is now known to cause major damage to the cardiac system. The main artery to my heart was blocked 90% (a widow-maker). His symptoms were exactly the same. And he too would be diagnosed with a widow-maker as well, undergo open heart surgery as I did, and lived to tell about it.

Danny could get quirky with me, so there would be times that he would put up a wall, to prevent talking about anything medical. He had a hard time accepting that this health emergency that he had was not just a one-off. There would be other things he had to watch out for, but that seemed to go against his putting faith in his supreme being. So we would occasionally bang heads, me getting on him to get seen, and him shutting me out. By this time, I felt like I was dealing with a little brother who needed a kick in the ass.

But Danny always did Danny. We survivors all carry ourselves in ways that make us feel that we are still living the way we want. He would survive his divorce proceedings, and be able to continue seeing his daughter under normal situations. It wasn’t perfect, but it worked for him. He loved going for walks on this one set of railroad tracks through the mountainside. It had to be so peaceful.

Danny was the real deal with how he handled adversity. Nothing was going to stand in his way. He attended a professional baseball game, and was hit square in the eye with a line drive foul ball. In the emergency room, he was cracking pirate jokes, even as it was clear he was going to lose his eye. He was already on his way to plans to overcome that handicap, including driving.

Danny would talk about his military experiences, including when he was battling Hodgkin’s Lymphoma. He had also dealt with some injuries including one head injury. But personally speaking, the military let him down, as did the VA in his later and final years.

As I had warned him, Danny’s health would continue to experience new issues from his survivorship. All the while, Danny continued trying to be Danny, literally giving his shirt of his back to help someone in need. But as his health issues got more complicated, so did the ability to get him help, either by his refusal, or the lack of experience of his doctors. And if that was not bad enough, instead of forcing him to remain, Danny would almost always check himself out, against medical advice, only to fall into more difficult and complicated situations, especially when it came to driving, and falls. At times, he could be his own worst enemy, because Danny wanted to be Danny, and he was not letting anyone, including me get in his way. It was so frustrating.

I have been described by some of my fellow survivors as a good friend to Danny. But honestly, I feel I fell short. I can use the excuse self-preservation, but there came a time I actually had to shut him out, because Danny was going through something, I would only find out later, that was causing him mentally to spin out. And it was his actions online, that ended up putting me at risk with scams and fraud, which I had warned him against. Whether he was having some sort of breakdown, or whether it was mixed with his faith, trust in everyone is the only way you can help everyone, I had to step away. I was still there if he actually wanted help, which was usually never the case.

We got together again at a conference for Hodgkin’s survivors. And it was great seeing my friend again. He was doing okay, still struggling with his health, but he seemed happy. And it was nice getting to see him meet so many others, as I have had the opportunity to do over the years.

In recent years, and weeks, I know he had several medical issues he was dealing with, and though I have only heard of his passing through 3rd hand, as well as what happened, I am not going to share that as I cannot confirm it. It is enough that I knew what Danny had gone through with his life and his health. And that I truly hope that my friend Danny is no longer in pain, and is in peace resting.

You were one of a kind Danny. You will be missed by more than you ever realized.