Memorial Day. There is nothing happy about it, yet every year, the verbal cheers constantly yell out “Happy Memorial Day.” Now I realize that for many, today is all about picnics, and if you are from the northeast where I am originally from, the annual pilgramage to “the shore” (in New Jersey). For some, it is the official beginning of being allowed to wear white. It is unfortunate that these things are tied to a most sacred day for our country, especially when the entire weekend is considered “Memorial Day weekend,” you have two other days that you can say “ready, set, go” doing all these things. But today, should be separate, and honored.
Always recognized on the last Monday of May, Memorial Day honors those who died while serving in the military, often having made the ultimate sacrifice during combat. Okay, do you see now why going to the beach and partying does not really represent what today is all about?
I guess I am showing my age. And you will see why, here it comes…
When I was a kid (I warned you, geezer alert), we had a tradition in our little town every Memorial Day. There would be a small parade through town, ending up at a memorial park, where a service was held to honor our local service men and women, concluding with a 21-gun salute. Throughout the memorial, former service members and volunteers, would go through the crowd, handing out hand-made poppies as a reminder of what the day was about.
(image courtesy of the Tuscaloosa News)
At the conclusion of the service, we went home. Now while many head to the shore, my memories of this date, were of overcast skies, and dampness. Through April and May, we normally had a lot of heat alreasdy and sunny skies, but somehow on this day, the weather always fit the mood.
It is likely that all service members who have passed, long after service, are included with memorial services, and I don’t have any issue with that. They gave of themselves to protect our rights and freedoms. I personally have not lost anyone in wartime, though both my grandfathers served (one in WW1, the other Korea), an uncle who served in Vietnam and a nephew who served in the middle east. All came home. And in my adult life, I have had many friends who have served this country, and I am grateful.
And we have other dates that we acknowledge our service members in this manner. It was always important to me that I made sure that my daughters knew the difference. This first one is a big one.
Veterans Day, on November 11th, we honor ALL military veterans, alive and deceased, who have served in the arm forces.
Then there is Armed Forces Day. You probably did not notice it, as the date recently passed, the third Saturday of the month, which would have been the 16th of May, we should have been celebrating the men and women currently serving in all branches of the military. But I do not recall seeing any news or tv commercial sales.
I know I am showing my age, being such a stickler for this respect for our service members. But if you are someone who is going to ride the patriotism bus, you keep your arms, legs, and head inside the bus, and ride it the right way. Otherwise, don’t pretend it to be a big deal and just go eat your hot dogs and enjoy the beach.
It certainly took long enough, definitely longer than I thought it would, and then last night, as I realized it was going to happen real soon, it took even longer. I was taking screenshots of the counter, for just before, and then when 100,000 was hit. But as most things in life, not having control, my counter went cuckoo as multiple visits registered at the same time.
Though I am a 37 year cancer survivor of Hodgkin’s Lymphoma, I did not start the concept of Paul’s Heart until thirteen years ago, five years after I became aware of the complicated health issues I had and was developing due to the treatments of my cancer back in 1988 at the age of 22, just out of college.
I have always enjoyed writing. I actually have kept school assignments from elementary, junior high school, and high school. I always got good grades. In junior high school, I began writing song lyrics (though very tacky and cheesy) and poems, but it was documentary and testimonial pieces I enjoyed writing most. In college, I experienced my first bad and quite rude critique, and the way I handled it was definitely wrong. My professor not only handed me my first “F” (I had never had less than an “A” on any writing assignment), but my professor also wrote in big RED letters, “you don’t have the intelligence to get past a comic strip page.” And with that, I dropped out of her class. I was devastated. I felt I was a good writer. It was one thing to get a bad grade, after all, grading a paper is subjective, but the insult definitely crushed me. And I stopped writing, for a long time.
But it was during my later years of survivorship, my passion and my need for writing returned. As a patient and survivor advocate, I often encourage people to put their feelings and experiences down in writing. There is a catharsis, a releasing of pent-up emotions, stress, or trauma, resulting in a feeling of relief, renewal, or emotional cleansing that comes when you let those feelings leave your body. This is especially good if you have an aversion to speaking to a therapist, which I can tell you, is also a good option.
In 2013, I created Paul’s Heart originally with the web address http://www.pedelmanjr.com , later adding http://www.paulsheart.com . I have published 1323 posts over those years, averaging about 8 posts a month, sometimes a lot more, sometimes a lot less. I still have 285 sitting in a cue to finish, stalled by writer’s block or distracted by other topics that came up in the meantime, now sitting in their own purgatory. I have 48 pages, short stories also published on this site, as well as links to other resources. I have allowed comments to my posts, well, except for a few trolls (their comments are actually saved should I ever decided to approve them). I avoid only two topics by choice if it can be avoided, politics and religion, unless there is a tie to cancer, health care, and survivorship.
It definitely took a lot long to hit this milestone than I thought. At least in the beginning, average views to the page were around 20, and depending on the topic, there would be hundreds of views. It had been my hope, that in spite of Hodgkin’s Lymphoma being considered a rare cancer, Paul’s Heart would hopefully finally get Hodgkin’s on the conversation map. I am a small fish, not like the American Cancer Society or the Leukemia Lymphoma Society, but unlike them, I am solely focusing on Hodgkin’s and long term survivorship. Little ol’ me, not famous, not rich, and without the help of anyone famous who had also recently dealt with Hodgkin’s who had an opportunity to draw attention to the cancer we shared (Michael C. Hall “Dexter”, Martin Fry – lead singer of 80’s band ABC, comedian Dick Gregory, actor DJ Quals, literal “Survivor” Ethan Zohn, Pittsburgh Penguin hockey great Mario Lemieux, Kansas City Chiefs Eric Berry, and though he has passed, Microsoft founder Paul Allen), though in fairness, as anyone who has dealt with cancer, nobody wants to stay in the cancer world once they are done with treatment and in remission. I am an anomoly. For me, it is my way of giving back for the efforts of those who saved me.
So yes, I am doing this one post at a time, one person at a time. I am also doing this organically. This count was done with the efforts of those who follow or read Paul’s Heart, and then share it. Word only gets out, when it gets passed around. Not once did I ever pay to publicize any of my stories here. 100,000 views is a legit and honest effort!
I have also expanded Paul’s Heart with 2 Facebook pages, both titled Paul’s Heart, I am on Youtube at @paulsheart, and have a Paul’s Heart page on Tiktok at @paulsheart2022 where I rank in the top 10% of creators with the similar follower counts.
I have been doing peer to peer counseling with patients and survivors nearly my entire survivorship. I have given countless survivorship speeches and interviews on cancer survivorship, though still waiting for that one big opportunity with major media, but I realize the big ones don’t care about publicizing happy stories. And then of course, I got to publish so many projects, newsletters and book anthologies for other organizations (like Memorial Sloan Kettering Cancer Center). I even got to have one of my stories performed by broadway actors, that was way cool (see the link on this page “My Dad Was Just Like Me”). And then finally, my biggest effort, publishing my own book, called “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor,” available on Amazon. And I have four more book projects started and undoubtedly will either need to do another book on my survivorship as I have lived even longer, or at least do a second edition. I am also working on doing an audible version of the book. One other thing I would like to do, is create a podcast.
I have tried to balance my topics here not just with things related to cancer and survivorship, but with all things, life after cancer, a life that definitely was no longer like what I was doing before cancer. I have shared stories of other survivors, and memorialized those who have passed. I have dealt with everything from relationships (married twice, divorced twice), to employment issues, and even dabbled in local politics as a school board candidate (an interesting experience). But perhaps the biggest thing that I got to share here, was my experiences with parenthood. The BEST THING hands down about my 37 year cancer survivorship is being the Dad of two of the most wonderful, intelligent, beautiful, kind, empathetic, all around, best daughters a Dad could ever hope for. They were not there when I dealt with my cancer, but they have witnessed the last 18 years of my difficult survivorship with all the health issues that I face. Only in recent years do they understand the gravity how serious some of these issues are, because now as adults, they are included in all of my appointments. There is no one that matters more to me than my daughters and each and every moment I get to spend and witness with them. This unconditional love has been the bond that has kept us together, and going, and keeps me going wanting so many more years of time with them, to see what else they accomplish.
Today is a big day for Paul’s Heart. It is a compilation of so many things that have come together, hopefully achieving what I set out to do when I was told I was in remission, making a difference, wanting to inspire others facing cancer and survivorship, even if one at a time.
And though I am sure that old battleax of a professor is no longer in this time and place, whereever she is, I am hoping she can see the two finger salute I am giving her. Her words did not stop me forever and I am quite proud to have done what I have. And finally, my daughters have their legacy of their Dad to be immortalized forever, right at their fingertips.
For this next story, I need to provide a little context. I was 18 years old in this photo. In the 1980’s there was no such thing as a selfie or a desire to take a lot of pictures, so this is one of the last photos of me prior to being diagnosed at the age of 22 with cancer, Hodgkin’s Lymphoma.
To my knowledge, there were three others, young like me, also being treated around the same time. I never got to meet them, and the only thing that was shared with me about them, was that I was tolerating my treatments so well, I was the only one of us, who was taking the full dose of everything. I never got to meet them and I have no idea, what has happened to any of them. Later on in life, I would meet another fellow long term survivor, who was treated where I was, but that is another story.
A few years later, an opportunity came up that would change my life forever as a cancer survivor. Though it was through a group email listing, I would get to meet three other Hodgkin’s survivors, all younger than me, who had just gotten finished with their treatments. This was going to be my “give back” moment, to share and inspire those after me, that survivorship was possible.
And for many years, all of us enjoyed living life after Hodgkin’s Lymphoma. Sadly, two have since passed, leaving only “T” and I. I remember T for a long time, chugging through life, not a care in the world, seemingly being able to forget that she had cancer, in spite of my pleas to be aware and proactive, things to watch out for. Nearly ten years ago, she faced her first late side effect issue, like me, the worst of all, the heart. And just with my bypass, I tried to advise the importance of staying dilligent, because this likely would not be the last thing she had to deal with. But knowing T, she was not going to be deterred in getting back to normal, as she did post-Hodgkin’s. And of all people, T was in good conditioning, a good diet, and a great attitude, if anyone could do it, she could.
The thing about those of us who have gone through chemo and radiation, there is a saying among us survivors, referring to our treatments as “the gift that keeps on giving.” Those of us at this long enough (like me), know this philosophy all too well. Don’t get me wrong, you still have to live life, albeit maybe a little more aware and careful, but I have not had 37 years of memories by just folding up into a ball, sitting in a corner.
I have gotten to experience so many things. My most important memory happened a couple of weeks ago.
So that is the background of this text. And just as I said, “the gift that keeps on giving,” T found herself in another situation, with her heart. She needed to have another situation, like I had, replacing the aortic valve. It was even supposed to be done the same method as I, so I was all confident when I explained to her my experience, encouraging her that with her conditioning and age (a number of years younger than me), she should do great. I am sure she was still nervous, but I think a bit more at ease, and definitely looking forward to feeling better, and as quickly as I described.
Then, the day of the surgery, she was informed her surgery had been delayed. She was crushed, but the decision was the right one. It was an error in communication on their part, but as a result, the decision to postpone had to be made. Surgeries are risky enough, but I have seen too many times, my fellow survivors, we carry enormous extra risks, if they are not all addressed, the procedures could go tragically wrong.
If you have ever had a doctor appointment, many of us go through a painstaking process of having to recite what medications we take. I myself take more than a dozen medications for everything I deal with. Well, between those meds, my medical history, and my body, there are concerns that need to be addressed prior to any surgery or procedure, and all of those from doctors to anesthesia, need to be aware of everything. There are certain medications that need to be stopped, and there are precautions that may need to be taken.
In my case, I am on blood thinners. So anything I do, from a tooth pull, to a colonoscopy, to surgery, I need to stop blood thinners (I am on two) as directed by the doctor. There may be blood pressure meds I need to stop depending on the procedure. I am not able to receive pure oxygen due to my chemo history, being given bleomycin (complications too complicated to include in this post). And then there is my trachea that gives doctors fits. I cannot receive twilight anesthesia, because of radiation damage to my throat area, my trachea collapses, and I experience something called hypoxia (three times now, because some refuse to pay attention to my chart or my warnings). Short explanation, George Floyd was murdered when a cop kneeled on his neck, collapsing his trachea, causing the loss of oxygen.
I am also without a spleen, which means I am more susceptible to infections, so prophylactic care must be taken, often antibiotics before hand, to keep infections up to and including the fatal sepsis from developing.
So when I have something scheduled, I am fairly confident I have every base covered. Or so I thought. I recently started a new medication for my diabetes and A1C. And what I did not know, might just end badly for me.
I am going to bring back my reluctant survivor back into the story. T also happens to be on a similar drug for her diabetes. And it was this drug, that was responsible for her surgery getting delayed, because it needed to be stopped, per her doctor’s recommendations, three days before. As of the day of her surgery, she still had not stopped it.
The drugs I am referring to, Jardiance and Farxiga. I want to be clear, I am not a doctor or pharmacist. I am only reciting confirmable facts on the drug sheet, and via the fine print on their television ads. Which by the way, Jardiance does not state on their ads (at least the one that I saw), the particular concerns I am stating here. Sure, they list all the other side effects, you know, the diarhea and everything else, but they left out this one.
Jardiance and Farxiga are SGLT2 inhibitors which can increase certain risks with surgeries and anesthesia. The main concern, euloglycemic diabetic ketoacidosis (eDKA), and that is a real bad thing. If it sounds familiar, you might be a fan of the television show “House,” as this was an occaisional diagnosis. EDKA is a dangerous acid buildup in the blood that can happen during fasting for surgery, dehydration, surgical stress, infection, or reduced food intake. What makes it complicated, is that the blood sugar doesn’t even need to be elevated or near normal, so it is hard to recognize.
Symptoms may include nausea, pain, breathing issues, confusion, fatigue, dizziness or weakness. It is often recommended to stop taking these drugs three days before but could be longer if kidney funtion is impacted. The doctor and anesthesiologist needs to watch the blood pressure, kidney stress, electrolyte imbalance, and any issues during recovery.
It is even more important for diabetics who also deal with heart issues, like me, because these two drugs are so beneficial in managing our heart issues. So my cardiologist is included in the concerns. Together all three participants in the procedure need to figure when to stop, when to start, and how to handle the blood sugar.
I have had many surgeries and procedures over the last 18 years of my survivorship, and I do what I can to advocate for myself, because it is in my best interest to participate, to make sure everything gets addressed. I have now added Farxiga to my “pre” plan lecture of what to look out for.
Finally, T was rescheduled, and as of yesterday, got her new aortic valve, after being off of her drug the necessary three days. I am waiting to hear from her, but I am confident, she had the right doctor and team, the things were done that needed to be, and with any hope, like me, she is going home today, the next day after having heart surgery. Most importantly, feeling better.
I know and have known thousands of other long term survivors over the decades, and many who have survived 40 and 50 years. But T is special to me, because we go way back together when we both began our journies in survivorship. There is no one cheering more loudly than me (okay, her family likely is).
What makes this even more important, because of T reaching out to me, SHE has made a huge impact, not just among thousands of other long term Hodgkin’s survivors, but cardiac survivors as well. Our survivors often only have a fighting chance because we talk and share among ourselves. All too often, we have doctors who are unaware of what they are dealing with. And in this situation, that is exactly the case. I immediately shared this info with all of my groups in the cardiac world, and cancer survivorship world. Unofficially and unscientifically, here is what I discovered, only have of the cardiac patients already knew about this concern, likely because they had already dealt with it. But hardly any of my fellow Hodgkin’s survivors were aware of this, and this is something that is a major dangerous game changer. And thanks to T, she has undoubtedly, saved lives, so that our other survivors now know something else to be aware of to advocate for themselves.
Her story, like mine, has so many more chapters to be written. And T will get that chance I am sure.
Speaking of which, Paul’s Heart is just 54 hits from a major milestone.
I never thought I would ever reach 100,000 hits on this page when I started it. And now, which one of you is going to be the one that makes this possible?
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
Paul's Heart 