Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

20 Sep 2025

Arachnaphobia, Ophidiophobia, Acrophobia, Trypanophobia


(image courtesy of Dr. Vinod Mune, Psychologist)

Playing the game “one of these is not like the other,” assuming you know the definition of the word “phobia”, meaning fear, all four words are in fact fear related. And I can admit, with no shame, that these are four fears that I do have. I actually have others, but these are my worst, because I am constantly confronted by them.

The first, arachnaphobia, you probably do recognize as a fear of spiders. HATE THEM! Ophidiophobia, is the fear of snakes. I am constantly crossing paths them living in the south. Acrophobia is a fear that I did not have through most of my life, until a couple of decades ago, the fear of heights. And this particular fear, I do not blame on myself, but was rather inflicted upon me. Driving through the Sierra Mountains in California, enjoying the beautiful views, my arm was suddenly grabbed tightly by a passenger followed by the loudest gasp I had ever heard, as if in a horror movie. When I asked what was wrong, my friend in her best “Shaggy from Scooby Doo” voice stuttered and pointed out, the straight drop down from the road, likely thousands of feet, and most noticably, no guardrail other than a six inch rim along the road. Until that moment, it was pure beauty, but to this day, heights are pure hell for me. This ruined me with roller coasters, ladders, even high rise buildings when I am secured by glass.

But the final term, especially given my medical history, is often a surprise to many when they hear this about me. I will go one step further, this fear for me is quite irrrational. As it could be the difference between life and death. Trypanophobia is the fear of needles. I am not talking about sewing or knitting needles, pine needles, actual medical syringes.

Between my Hodgkin’s Lymphoma days, and the last seventeen years of my survivorship esepcially, I have seen my share of needles from vaccines, to blood draws, chemotherapy, IV’s and worse. And while I have dealt with all of those, there is one thing I will not do, inject or poke myself. As a Type 2 diabetic, in a battle of wills, I am constantly being encouraged to do multiple daily sugar counts, by way of a quick finger stick (using a lancing device with a triggered needle causing the blood letting).

Here comes the irrational part. I have no problem if a nurse or tech does it to me. It is over as quickly as it is started. There is no hesitation on their part, they know their job and they are good at it. And honestly of all needle injections I face, if I have to have one done, it would be the finger stick. Ironically, techs and nurses find this thought odd. But with me, not only am I squeamish (in spite of all the surgeries I have been through), and I know I can handle the actual lancing, my hesitation with doing it myself is a deal breaker. Like I said, I have had finger sticks hundreds of times over the years, but never done them on myself. And I am not about to start, irrational as I know what my doctors are trying to accomplish, but this fear is that strong.

So, naive me, is now getting all these ads on my social pages for “glucose monitoring” devices, you know, the little button “thingys” stuck on peoples’ arms. Since I am 100% against finger sticking myself, sticking this monitor device on my arm seemed like a good option, after all, all you do is stick it to your arm, right? I have seen plenty of people walking around with these things. Unfortunately, these devices are quite expensive. So that became a deterrant for me. But my endocrinologist, undeterred, recommended a system of glucose monitoring, likely the lowest rung when it comes to reliability and accuracy, but affordable. I thought to myself, she is not giving up on me with this, regardless of my hesitation and insistance. The cost was definitely affordable to me, so there could be no excuse.

I received a small box, with two “sensors”, but it felt heavier than I felt two little discs should weigh. When I opened the box, I did not see sensors, but rather two containers approximately and inch and a half tall by an inch and a half in diameter. At first I thought they sent me the wrong thing. I don’t know why, but I decided to fast-forward, and went to YouTube to see how complicated putting this “sensor” on my arm should be, other than peeling off a cover for the “adhesive” to be exposed.

Cue the screaching tires coming to an immediate halt!

The YouTube tutorial explained that a needle from the container/sensor, would implant itself into the back of my arm. This was definitely not what I thought it was going to be. And this was going to be a problem, a deal breaker, once again, over a needle. The package has been sitting on my kitchen counter ever since.

It is clear that there has to have been some sort of trauma in my life that has caused this fear of needles, trypanophobia. The obvious fact pointed at me constantly, “Paul, you went through chemo! You’ve had so many surgeries!” And while that is true, having blood drawn or an IV being put into my arm is stressful for me, because my chemo-ravaged veins usually result in multiple attempts each time (we did not have ports back in 1988). I am good for one, maybe two attempts before I put the person sticking me on notice.

Okay, so if the solution is the lancer, why won’t I use it? And that is where I am stuck at this moment. Whatever this trauma is, I will not do it to myself. I have friends who are diabetics, and many friends who are survivors like me, all monitor their blood sugar as recommended by their doctors. Whether I “can’t” or “won’t”, it is not happening. I have several doctors trying to help me deal with this. I am so appreciative of all the outreach from my fellow survivors trying to offer tips. But as my one friend and fellow survivor found out, if she thought my aversion to vegetables was bad, this issue is a hundred times worse. And I am admitting that it makes no sense. And that is where I am as I write this.

So in the meantime, once again, I have restricted my diet to minimal sugar intake, no salt, low cholesterol, which I know will produce the results that the doctors are looking for, along with the medications that I currently take. And then, I will gently ease back into my regular eating habits which really are not that bad, and not far from what I am currently doing. I don’t smoke. I don’t do drugs. And I may have one or two beers a year. My picky diet (hardly any fruits and vegetables) is my only vice. I do not eat a lot of sweets, I do not even crave them. It was simply a time period with unusual circumstances that led to a lengthy term of bad eating habits that set of the alarms with my doctors.

Of course, with all that my body has gone through over the last seventeen years, and my cancer survivorship, my diet will not be the cause of my demise.

Posted in Cancer, Education, Family and Friends, Food, Inspired By..., Side Effects, The Heart | Leave a comment
01 Sep 2025

Another Year, Another September


September is a busy month for raising awareness of certain cancers; blood cancer, ovarian cancer, prostate cancer, thyroid cancer, leukemia and lymphomas – often referred to as “childhood cancer” though clearly strike at any age.

If you have followed this page, followed me even before I began “Paul’s Heart,” I have been involved with the world of cancer over 36 years as a patient, survivor, and advocate. I was diagnosed with Hodgkin’s Lymphoma (actually called Hodgkin’s Disease) back in 1988. I was treated with levels of radation therapy and a chemotherapy cocktail I was not expected to survive, let alone barely tolerate.

Today, I deal with late side effects from both of those treatment regimens that were used to save my life, creating situations almost as fatal as the cancer itself. If you look at the list of “I know”s pictured above, I experience each and every one of them to this day, thirty-six years later. In fact, just today, I learned of a friend who passed from a different cancer, not even a year after diagnosis.

I continue to write, record TikToks and YouTube videos, give speeches, and my most important role as a survivor, advocate and be a voice for others who feel voiceless or without knowledge because it has been the only way for me to give back. My body is so damage from those treatments, I cannot give blood or donate my organs. The only way I can help others is with my experiences. And it is my plan to continue to do so, always with the mentality “if my posts help just one”, though I know my words have reached so many more, until I can do it no more.

I am at the point now, approaching a major milestone, the age of 60 at the end of the year, something I definitely never thought I would see. My survivor’s guilt never takes a break as I say goodbye to one survivor after another, from the same cancer as me, either from the cancer, or the late effects. And even harder for me to deal with, outliving those in my life who have not had to deal with health adversities, something I struggle with constantly.

If I can attribute anything to my longevity, and though they were not yet born when I dealt with my Hodgkin’s, my daughters were there, and have been there, with every health issue from my treatments that I have faced, my inspiration to keep fighting. Yes I know, I cannot control when my body has had enough, as evident by my friends and fellow survivors before me, but there are so many more milestones I want with them, and that definitely drives me.

To my fellow survivors, celebrate this awareness. Any of us who have taken on cancer, knows how hard it was to get through. And for those who are no longer here, you are definitely not forgotten.

Posted in Cancer, Education, Family and Friends, Side Effects, The Heart and tagged , , , , , , , | Leave a comment
18 Aug 2025

Which Is More Upsetting?


(image courtesy of Harvest.org)

I want to run something by you. I do not normally do this, but I want to see your reaction. If you follow “Paul’s Heart”, you know I have a long list of health issues related to my treatments for Hodgkin’s Lymphoma over 35 years ago. These health issues continue to progressively get worse, and yes, some new ones even develop. On a recent visit with one of my doctors, as my cardiac concerns have once again increased, a new prescription was ordered. The drug is particularly intended to deal with congestive heart failure, which I was diagnosed with several years ago. The cost for the prescription for a 90-day supply as I will be on it long-term? With insurance, $863!

WHAT THE SERIOUS FUCK! ARE YOU FUCKING KIDDING ME? THAT IS ALMOST AS MUCH AS I PAY FOR THE INSURANCE THAT ALLOWS ME TO SEE THE FUCKING CARDIOLOGIST THAT I DO!

So, the litmus test. Of course you know I very rarely if ever use curse words in my post unless I am quoting someone else. But seriously, which upsets you more right now, my choice of language? Or the situation of unaffordability of a life-saving drug for me?

The high cost of prescription drugs is nothing new. Big Pharm annually makes a huge haul at the patients’ expense. As patients, we are at their mercy if we want any chance of getting better. The thing that makes me go “hmmmmm” however, is that thirty-six years ago, when I was treated for Hodgkin’s Lymphoma, my health insurance covered more, cost less, and I definitely do not remember not being able to afford anything the doctor had ordered, especially my chemotherapy.

I am just a little guy, and I do not want to put a bullseye on my back, so I will not mention the name of the drug, but let’s just say, it is new enough that there is no generic drug available, which means the Big Pharm company can charge as much as it wants to, and does, at least here in the United States. Last year, in an effort to provide some help for my congestive heart failure, another drug had been prescribed, and just as this current order, was even more expensive to me.

So I do what I do best, research. I go to the various drug discount web sites, but at best I could only get the price down by $150, the drug, along with all of the other prescriptions I take, still remained unaffordable. And then, just as I did last year, I reached out to the Big Pharm company, threw myself at their mercy, for their benevolence, in hopes they could help me afford their drug. Nope.

While my cost with insurance for this drug is $863, according to a Reuters report, the cost in other countries such as Australia, Japan, and Sweden are all under $40 for a 30-day supply for the same drug and Canada’s cost is $60. How is this possible? A drug company from the United States selling its drug to other countries with it costing me 2100% more.

So I ask you, which upsets you more, this price gouging or the fact that I used naughty words in this post? We should all be outraged by this. And while this is capatalism at its finest, greed at all cost and at the expense of the most vulnerable, there clearly will not be any help from our government as long as lobbyists of Big Pharm are able to do what they do. And to be clear, it has not mattered who has been president or which party. Big Pharm and Big Insurance do not want their profits reduced and their money in Washington talks louder than the cries of those who cannot afford their medicines.

There are those who would try to defend Big Pharm, that the need to take advantage of not having generics available to keep prices high is to encourage and enable future research. Here comes another bad word. BULLSHIT! Big Pharm CEO’s are making more now than ever, and Big Insurance is no better. And besides, what good is any research if the treatments you make are out of reach financially to the patients who need the medicines.

Again, to be clear, this has been the situation no matter which president has been in office. But it is the current president’s attempt to make us think he is going to make the pricing better for everyone, that just does not make any sense. In a letter to 17 major companies, he wants drug prices slashed 1500% (which is mathematically impossible), and to do so, has threatened a 250% tarriff on pharmacueticals, which we know will get paid by the patients. And his demands are to make companies raise their prices for that same drug I need in other countries, not lower them here. We are supposed to believe if we are making other countries pay higher, then somehow that makes it fair to us. And if you think generics will help impact the costs with this type of action, guess again. Generic drugs will not only go up, but likely face shortages, again, to keep the profits margins for Big Pharm. We should begin to see the impact from the 15% tarriffs on the EU soon, and any pricing increases which would prove what will happen should a 250% tarriff be implemented.

The solution for me would be simple, find a way to import the drug from Canada, or Australia, but then our country does its best to discourage this by claiming the drugs could be unsafe, ineffective, or improperly marketed. I am not at the desperate point in my health yet, but if the time came, if my country were not going to help me, I most certainly would trust Canada or Australia. What would be my alternative?

I have found what I need in Canada, and with the assistance of some fellow survivors, I have figured out “how.” Now, the race against the clock and the 250% tarrif set to take effect on August 29th. The difference between $102 for the actual cost, and then me, not the country shipped from, not the manufacturer, ME!, if I want my delivery I will have to pay $257 in the tarrif. Yeah, that will teach Big Pharm a lesson. And the lesson is this, instead of Big Pharm making the profit off of a patient, now it will be my own government. But, by me paying less for the prescription, that actually does take away the profit from Big Pharm, in theory, forcing them to raise their prices internationally if they want to compete.

I try to keep politics off of this page at all costs. But the costs of prescription meds are now becoming a matter of life and death. Two years in a row, I have been prescribed a drug for my congestive heart failure, to attempt to help restore some of my heart function, and I cannot afford them, and it will be years before an affordable generic comes out (which of course will lower the cost of the original drug – see? They can do it if they want to!). All I can do at this point is what I have been doing, managing with diet, and any exercises that my body will allow me to do. Tarrif or not, if I can get the prescription cheaper than here, I will do what I have to.

Yes, I am fucking frustrated. But don’t be upset how I express that frustration, rather, be upset as to the reason.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment

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