Paul's Heart

Hurry Up And Wait!

Back in 1988, when I discovered a lump in my neck, I experienced several doctors rushing with intent to get me officially diagnosed with cancer. One doctor, included with his introduction to me, and no tests performed, was already giving me a lecture on Hodgkin’s Disease, now called Hodgkin’s Lymphoma. Unfortunately, I was in such strong denial it took nearly two months, along with the clear blood tests and CT scans, until I finally agreed to undergo the only procedure to correctly diagnose me, a biopsy. The whole time each and every one of them was stressing about the importance of getting on this sooner than later to give me the best chance at remission. My stubbornness fortunately did not hurt me, as here I am 37 years later. But the point was taken, when it comes to cancer, the sooner found, the sooner diagnosed, the sooner treated, the better the odds.

One would think I would have learned my lesson about “listening” to my body. I didn’t. Because in April of 2008, after experiencing severe tightness in the left side of my chest, I FINALLY got it looked at, by completing a nuclear stress test. Unlike my cancer diagnosis, I was not in control of what was occurring. As I got onto the treadmill, and the tightness began, the technicians in the room reacted, stopped the test, and had me wait to see a doctor. Within 36 hours I would find myself having a an emergency bypass for a “widow maker” level blockage of the main artery to my heart. Here the medical workers reacted to what they saw immediately, and I am still here to write about it. Let me tell you how unnerving it is to being told by your cardiologist how close I came, “it wasn’t a question if you were going to die, but when.”

Surely I would have had to have learned my lesson about recognizing symptoms in a timely fashion. Unfortunately, I have not. And it keeps happening. Septic pnuemonia was the diagnosis in 2012 when I did not realize I had an infection, and was taken out of my house on an ambulance stretcher at 3am. Or in 2019, when another major artery to my heart was blocked 90%, again, the stress test stopped, and be evaluated by the doctor.

Yes, I have been lucky. In spite of my ignorance and stubbornness, I have had the right doctors to deal with my health crisis. Which is what makes my current situation so frustrating.

It has now been over two months that I noticed my right arm and hand swollen, and still no answers. It took a month and a half to get a particular scan completed, a PET scan. That scan was done ten days ago. And here I wait.

I have told many that I do not believe in “putting the carriage before the horse,” but I have developed a lot of medical knowledge over my cancer survivorship. I know what I am dealing with, and I know what they suspect, and what it could possibly be. And I am prepared for whatever comes.

Remember at the beginning, how I wrote about timeliness being so important? What happened to that urgency? Like I said, I know the possibilities, and of course, time is going to make a difference. But for now, time has stopped. I can’t even go forward. Even the most simplest of diagnosis, and I still cannot get anything done until it is confirmed.

Even before the technology, I have never had to wait more than a day or two for answers. And now, the technology gets it to me within hours, at least until this moment. There is a known factor contributing to this, the collapse of our healthcare system creating a shortage of those in charge of reading these all important scans. But that does not help me. I am now going through my second weekend without an answer.

Several of my fellow survivors have offered encouragement with a belief I already have, “if there was something important, I would have heard sooner.” And that makes sense, as I have recieved that kind of attention before. The problem is, my background back in 1988 is so similar to what I am dealing with right now, the lack of certain symptoms with the current symptoms I am dealing with, is triggering the most dire of flashbacks for me. And like I said, until I get my report, if it ends up being my worst fear, I cannot do anything until I get that answer.

If just simple lymphedema, then likely just drainage massage. But if the two enlarged lymph nodes are any factor, the question becomes why, and it is pertinent that no massage be given, for fear of pushing “whatever” the lymph nodes contain, cancer or infection, into the lymph system, spreading. Or if there is any other source of the retention requiring further testing. So, not only am I just waiting, I am not getting better, and I could be in for further study with no resolve in sight.

There used to be a joke about someone who went to the doctor with an injured arm, and asked the doctor if they would ever be able to play the violin, and the doctor assured them they would. And then the patient told the doctor that was good news as they had never played it before. Well, I can play the guitar, and piano, but not currently as my fingers are two swollen for dexterity. Even as I type this story, it is with only one hand, fortunately my dominant hand. But there are many things I realize that I do with my non-dominant hand, and I need to be able to do that again.

I know I won’t hear anything yet tomorrow, Sunday. But man am I hoping for anything come Monday, day 12.

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.