Paul's Heart

Is This Thing On?

A couple of months ago, I did a comedy routine around cancer. Yes, cancer. To be clear, I did not make fun of having cancer, but found ways of dealing with some of the situations with some humor. Of course, if you were someone who has never had cancer, besides being fortunate, you may not have been able to “get” the jokes. Well, I am back at it again. This time, I am dealing with the issue with my right arm and hand, lymphedema, swelling through my lymph system (as opposed to blood caused by the heart – which I also deal with). Again, imagine if you will, I am referring to the swelling in one arm, not both, and not only how uncomfortable it is, but awkard. While I wait for my doctors to come up with a plan, they say laughter is the best medicine, so here goes…

So I have this new condition in my survivorship, called lymphedema. It is when lymph fluid cannot flow through the lymph vessels properly because of some sort of restriction. Looks painful. Feels weird. I have currently lost about 75% of use of that right side appendage because of this issue. But not all is lost. I have my sense of humor.

First, there is no need to worry, I am not turning into the incredible hulk, my right arm just got the wrong memo. My left hand looks normal while my right hand looks like it has been hitting the all-you-can-eat sodium buffet. Both my arms are like if they were in a long distance relationship, clearly having stopped communicating. I call my left hand Paul, my right hand Paul XL.

One of my goals working out was to have bigger arms. Evidently the universe only heard half of that request. Where I live in Florida, people pay thousands for asymmetrical fashion. My lymph system gave it to me for free. If I am going out for dinner, my left arm says “business casual”, but my right arm says “professional wrestler.”

So to understand, one of my arms and hands are retaining fluid, the other is just retaining its dignity. If I were a boxer, my two hands would be in different weight classes.

I’m saving money when I go to sports events currently. I don’t need to buy a large foam finger. Nature provided me one.

A swollen hand walks into a bar. The bartender said, “holy crap buddy, you buying drinks for all five of those sausages?” I can still give someone the finger while I am driving, which is important in Florida. The bad news is, it just looks like a bratwurst.

Yes, this is another one of those late side effects from my treatments for Hodgkin’s Lymphoma 37 years ago. We survivors call treatments, “the gift that keeps giving, long after you’ve lost the receipt.” Nothing a cancer survivor needs to hear is, “you know what this person needs? A freaking sequel.” So surviving cancer isn’t enough with everything else I have gone through survivorship, I now have the limited-edition oversized hand.

Late side effects from treatments are basically your old cancer treatments drunk-texting you decades later. “Hey! You awake?”

Having one hand larger than the other isn’t all bad. I can use one for everyday use, and the other for intimidating people. I might just say I have a regular arm, and a Costco-sized arm. I keep waiting for this swelling to go down, but my body keeps telling me to lower my expectations.

I have tried wearing a compression sleeve, also known as arm spanx. That has not helped. It just made my arm feel vacuum-sealed. There is enough fluid in my right arm and hand to qualify as waterfront property. If my arm and hand get any bigger, I will be able to claim it as a dependent.

The upside to the swelling, nobody asks me to reach into narrow spaces anymore. One hand says “handshake,” the other says “medieval weapon.” It’s like if my lymph system was put in by a plumber, it was done by the lowest bidder.

So that is all I have for my over-agressively confident right hand and arm. I never asked for Popeye’s forearm, especially just one of them. It looks like I was thumbwrestling myself, and my right hand ate my left hand. I finally understand what “thick-skinned” means, unfortunately, literally. Of course if I wanted to brag, when asked why one is bigger than the other, I could just respond “you should see the other guy.” I could just become a Bond villain, I already have the wierd hand.

Thank you all, you’ve been great!

Now back to watching my phone.

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.