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.
Paul's Heart 