Occasionally, when I have writer’s block, I will refer to several books I have, that suggest prompts, to open up my thoughts, which I am never short on. I currently have over 300 posts started sitting in my cue over the years. I begin them, get stuck, and then they sit in pergatory.
This particular prompt actually came to me, via TikTok, as I was not looking for anything in particular to write, like I said, I have enough started. But the prompt is timely, as it is partly factual, in that I will be turning 60 at the end of this year. Instead of having me reflect, the suggestion has me contemplate the absence of likely at least half of my life or more.
“Imagine suddenly waking up as a 60-year-old, with the last few decades of your life erased and no memories. What would you want to know first?” This actually goes along with another post I have in my cue, “tell me what it is like to have a life without cancer,” asked of anyone who has not been touched by any form of it, whether as a patient, caregiver, or friend.
You can understand the impact that cancer has on someone’s path through life, a total derailment of what you once thought would be. So that I understand, the prompt implies “no memory”, that would also mean I would not have any recollection of dreams and aspirations of what I would have wanted in life.
But I am turning sixty in just over two months. Forget doing the math, or what it says on my page, just read this sentence. It is surreal for me to think that as someone who got diagnosed with Hodgkin’s Lymphoma, cancer, at the age of twenty-two, would ever see their 60th birthday. Yet hear I am. Next month marks thirty-seven years since that diagnosis.
The prompt says “last few decades”, “few” implying three, which would engulf my entire cancer survivorship. So I would want to make it four decades, still leaving me two decades, just with no history of cancer. Which crossroads with my other cue, “what’s a life without cancer like?” Truthfully, I cannot imagine what I would want to know. Prior to my diagnosis, I can recall every detail of my life and where it was heading, and what was planned. But those plans changed after my diagnosis. With no memory, according to the prompt, what life would I have had. Fact is, I don’t even want to know.
(photo courtesy of “We’re The Millers”)
To be clear, I have no regrets, not one letter. I really could not imagine a different life for me, nor would I want to. I truly believe in fate, good or bad, that all things are already predetermined or inevitable. And just like the movie series “Final Destination,” I have no intention of ever tempting fate. What has been meant to happen in my life in the past, and tomorrow, I cannot change anything and would not want to.
The truth is, I have too much over these last few decades, to regret and lose what I have, as if never existed. My daughters being the most important part of my world are too important to me to regret the bad things I have experienced in my life. To have a life without having had Hodgkin’s Lymphoma would have changed everything, and not necessarily for any better. But what I do have, is what was meant to be. And the fact that I get another day tomorrow, and again after that, makes it all worth while.
This photo of me with my grandmother comes from 1989, both of us cancer survivors at the time, she from breast cancer, me from Hodgkin’s Lymphoma. I had just completed six weeks of radiation therapy. My grandmother had been diagnosed in the Fall of 1985. Having undergone a double mastectomy, she joked with me, “I will be able to wear your shirts now.”
It was her bravery, her outlook, her stoicism that served as my first ever example of someone having faced cancer, and survived. Up until this point, all I ever knew about cancer was “everybody died” from it, a statement I would soon learn could be no further from the truth. Because of the way my grandmother handled her cancer fight, I cannot really go into details, as she did not discuss them, her way of protecting me from all of that “bad stuff”, yet at the same time denying me the ability to truly understand what she was going through.
It was her success in beating breast cancer that put me on the path to selecting my oncolgogist when I was diagnosed with Hodgkin’s in 1988 at the age of 22. My grandmother, small but mighty at a height of 4’11”, I considered one of the strongest people I knew. And if she could get through her cancer, so would I.
My experience was a bit more physically traumatic as far as surgeries go, and the toxicity of my treatments, unbeknownst to me, really posed the risk of killing me, instead of the cancer doing it. Mirroring her stamina and determination, I got through the next year and a half.
Our paths would take different turns a few years later, as she would pass at the age of 83 from her second battle with cancer, this time ovarian. I was crushed not by the fact that her not living forever after cancer did not happen and what that meant to me, but I lost one of the most influencial people in my life. Ten years later, I would begin a new chapter with my Hodgkin’s Lymphoma, not with a recurrence, but late side effects that would develop, caused by my treatments. But that is another post.
As I said, I am not very knowledgable when it comes to breast cancer. Sure, I know there are many types of breast cancers, staging, and a variety of treatment options, all similar to my experience with Hodgkin’s. And from what research I have done over the years, there is a similiarity to Hodgkin’s in that I saw that same “five year average” survival for breast cancer as we have for Hodgkin’s. Survival rates for both cancers do have one of the higher rates above 90% depending on the type and staging.
In fairness, my knowledge is still limited when it comes to breast cancer, though there are many in my personal circle who have been diagnosed, all with different situations, all with different treatment options. Regardless of their paths, all remain hopeful and positive in their battles.
Where my personal involvement comes in with breast cancer, is twofold, and actually has an impact on others as well. For anyone who has undergone “upper mantle” (the chest area) radiation therapy, there is an increased risk of developing breast cancer, even if a male, though it is not as common as females, it can happen, and self-screening is always recommended.
The second thing, and very important, because as Hodgkin’s survivors are all too aware of, the drug Adriamycin (also known as doxorubicin), is an anthracycline drug that damages cells to prevent them from growing and multiplying. This is good for destroying cancer cells, but bad for healthy normal cells. This drug is also notorious for being referred to as the “red devil,” noted for its color and the one truly evil and potential side effect, heart damage. And the bad thing is, despite the technology being available, and I know this personally as I have researched it and wrote about it here, to discover this damage before it becomes a problem. The bad thing is, it does not get used because it is “not cost effective.” So unless you complain about the symptoms, which by then the damage is likely quite bad already, you will never know until it is too late. A simple 2D echocardiogram after treatments can determine if any damage has begun, and if so, change treatment course before too late. But you need to advocate for yourself and demand this echo to be done. It will not be volunteered to you.
Here is the link to the interview I did with researcher Bill Shirkey to back this up:
Of course, I recommend reading the other three parts to that story for the full context and what it means to me and others.
Last month for me was personal about Hodgkin’s Lymphoma awareness. This month for breast cancer, it is also personal. And next month will be no different when it comes to lung cancer. More on that one later.
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.
Childrens Oncology Group
cancer information for patients, survivors, caregivers – child or adult
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
Cleveland Clinic
cardiac needs, especially chemo and radiation therapy effects
Paul's Heart 