Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

The Importance Of A Colonoscopy


(photo courtesy of the Guardian)

The entertainment world and fans around were devastated to hear that actor James Van Der Beek, most known for his role in the television show, “Dawson’s Creek,” had passed away, complications of colon cancer, at the age of just 48 years old.

Van Der Beek is just one of many celebrities who have lost their lives to what is actually considered a cancer that has a really decent “cure” rate, especially for how prevalant it is compared to other cancers. Chadwick Boseman of the super hero franchise, “Black Panther” passed away a few years ago, also of colon cancer at the age of 43. For those of us older, Kirstie Alley of the television show “Cheers” died of colon cancer. And of more modern times, Randy Gonzolez of TikTok’s “Enky Boys,” died of colon cancer at the very young age of 35 years old. Cancer does not discriminate when it comes to age.

Those that have reached remission or cure, include Sharon Osbourne, widow of the great rock legend Ozzy Osbourne, a living survivor and advocate of colon cancer.

In my world of long term cancer survivors, especially when it comes to Hodgkin’s Lymphoma survivors of twenty, thirty, or forty years, some have found themselves facing colon cancer due to late side effects caused by their extremely toxic radiation and chemotherapy treatments. Though myself, I have not been diagnosed with colon cancer, as a long term Hodgkin’s survivor, I am watched and screened for colon cancer as part of my survivorship care. More on that later.

I am not going to get overly scientific or lost in the weeds with colon cancer, because I want to make sure everyone understands not just how treatable colon cancer is, but how easy it is to help your own cause. Colon cancer is highly treatable, well over 90% when caught and treated early enough. Success in treating colon cancer is also attributed, because it is a cancer that can be prevented or at the least, the risks reduced. Of course a good diet helps to lower the risk of developing colon cancer, but also does cessation of smoking (quitting), and limited alcohol consumption. But of course, if these lifestyle choices are too difficult, there is one option that actually is very effective in preventing this cancer, a colonoscopy. I know, your rear end likely puckered up just at the mention of that, so, I am going to put that off to the side for a moment.

Colon cancer are tumors that begin usually as polyps, that undergo DNA changes that make the cells grow uncontrollably, eventually into cancer. However, if the polyps can be removed before this growth occurs, the development of the cancer is prevented. A simple formula, a polyp removed = a cancer prevented. How does a polyp get removed? Via a colonscopy. But again, I know that word is scary. I will get back to that shortly.

So what are symptoms that can occur that might be of concern to seek out a doctor’s care, possibly for colon cancer? First, bowel changes. We all have our routines, mine are quite complicated, but in my case, reliable. Any change I would easily recognize. Another noticable concern, would be blood in the stool/toilet, from streaks of blood, to a lot. Abdominal discomfort is another sign that should be looked into, as is not emptying everything during a bowel movement completely. As odd as it may seem, unexplained weight loss is also something that should be looked into by a doctor.

Though age is not discriminated, it is considered higher risk for colon cancer, once someone is over forty years of age. A family history or genetics can also play a role for developing colon cancer. Bowel issues such as inflammatory bowel disease (IBD) and other conditions can contribute to a diagnosis of colon cancer. Race, lifestyle, and diet are all factors of developing colon cancer. While I am older, I do not personally have any of the other risks, okay, maybe my diet is not the best, I do have one factor against me when it comes to colon cancer. The treatments I received for my Hodgkin’s Lymphoma, radiation therapy and in particular, the drug Procarbizine from my chemo cocktail, leave me at a higher risk for colon cancer, as has been the fate for many of my fellow Hodgkin’s survivors.

As I said, colon cancer has a very high rate of remission/cure, over 90% when caught early or localized. Now I am getting to the other “C” word, the one that is so important, it has the power to prevent the cancer from developing, the colonoscopy. There are some unpleasant stereotypes which I am not going to get into, because they are, well, just stupid, especially if they prevent you from doing something that might just save your life.

So what is a colonoscopy? It is a PAINLESS medical procedure, where a very thin tube with a camera at the end, travels up your butt, while you are anesthetized (via twilight sedation or general anesthesia). YOU HAVE NO IDEA THIS IS BEING DONE AS YOU ARE OUT COLD!!! While the doctor is looking around, if they see a polyp or polyps, the doctor removes them, and likely sends them to pathology for further study. Regardless, because that polyp(s) was removed, it will not progress to cancer. A polyp removed is a cancer prevented. When you awaken, YOU HAVE NO MEMORY OF WHAT HAPPENED!!! You will likely let out the post-colonoscopy fart, audio and visual now available as a montage on TikTok, have some crackers and a drink, get dressed, and go home. If pathology determines the polyps were something more, well, you cross that bridge if you get to it.

If you are fortunate to not have any polyps, then it will likely be recommended not to have another colonoscopy for ten years or more. But, if as in my case, I have polyps every scope, I have to get a colonoscopy every two to three years. In the last fifteen years, I have not only had five colonoscopies, but I have an added procedure called an endoscopy done, where they go down my throat, again, looking for polyps. I get both done at the same time since I will be out cold anyway. I call it my “pig on a spit” procedure (there is a visual for you). To keep my sense of humor, I always make sure to remind the doctor not to mix up the two tubes, so that I do not wake up with my breath smelling like shit.

So that is all there is to a colonoscopy for the most part. And it literally can save your life. And as I said, it is painless! So why all the fuss? There are some inappropriate stereotypes which I won’t address as they are just ridiculous, unfounded, and untrue. But there is one hurdle, that everyone seems to struggle with, “the prep.” What is the prep? It is a high powered laxative, necessary to clean your entire bowels out so that the camera can get its clearest pictures. Think of it as medicinally induced diarhea. While there are various forms of this “prep,” I am only sharing my routine, which, by itself is bad enough. But I have to do what is called a “super prep” as I have a complicated bowel system (which I am not going to get into). But I will explain it as just the normal “prep.”

You start likely about a week before, changing your diet to limited to easily digestable foods and avoiding “colored” foods especially with red dye. The day or two before, I am on clear liquid, like drinking chicken broth. Then, the night before, I pop a couple of stool softeners, wait a few hours. While this is happening, I mix the “prep” solution, incorrectly called “Go Litely”, often a flavored powder, mine is citrus, with any clear liquid. I choose Sprite. Then I put it in the freezer (it is an entire gallon, so it will not freeze in the two hours it chills), as the colder it is, the easer to get down. The instructions are clear, drink 8 ounces every fifteen minutes. You can either just swallow regularly, chug it as I do, or use a straw. At first, that it seems that it is no big deal, that first glass going down. Then as you finish the second glass, you can tell something is happening.

I want to stress, there is no pain! You are just about to experience something somewhat uncomfortable, really no different than any bout of diarhea you may have experienced, other than, for the next four to five hours, until you are emptied out completely, and you will empty out. Like I said, inappropriately called “Go Litely”, should be called “Go Quickly!” By the third glass, you find the need to coordinate between continuing to drink and run to the bathroom. As you finish the last glass, it is just a matter of another hour waiting for the urge to go to the bathroom to finish. Then it is off to bed, wake up the next morning, in some cases you may have to do a little more prep, and then it is off to the colonoscopy.

Literally, that is all there is to it. I am not sure how Van Der Beek or the others discovered their colon cancers. But they were all too young. Cancer does not care about age. Van Der Beek leaves a wife and six children behind. I have two adult daughters, and I know the increased risks I have for colon cancer and I want to make sure they do not have to mourn me for something that is preventable for the most part.

I am known among my fellow long term survivors for always pushing them to get colonoscopies because we have that extra risk. And we have several who do end up being diagnosed with colon cancer, and we have had some who have passed away.

But on this post, I want to encourage you reading this, if you were born at a time when music was the greatest, the mid ’80’s, you should really consider a colonoscopy. You are in your forties, young, the time when the concern increases, and prevention is key. Please consider getting a colonoscopy. James would be one of the first to encourage you to do so.

(photo courtesy of People.com)

Maddie And Emmy


The following is a short story that I wrote for another project earlier this year, a tribute to my daughters, my reason for being.

Maddie And Emmy

By Paul Edelman, Jr.

As a thirty-five-year survivor of Hodgkin’s Lymphoma, some would think that my greatest achievement is simply surviving.  Living as a cancer survivor for thirty-five years is indeed a significant milestone, surpassing the well-known five-year mark told to cancer patients, when they can consider themselves “cured” of their cancer.  However, I consider my greatest achievements to be my two daughters, Madison and Emmalie, the most important parts of my survivorship.

At the age of twenty-two, one of my main concerns was how cancer would impact fatherhood. Once I had completed both radiation and chemotherapy treatments, it was discovered that chemotherapy left me unable to have biological children, which devastated me.  I had always dreamed of becoming a father and had to seek other ways to make that dream possible.  Fertility treatments via artificial insemination and in vitro were unsuccessful.  My only remaining hope was adoption to help me achieve my life’s greatest purpose, fatherhood.

Maddie and Emmy were born thirteen and fifteen years after the time when I first started my treatments.  But it was halfway through my recovery survivorship, they witnessed my first health issue caused by late side effects from radiation and chemotherapy administered eighteen years earlier.  In 2008, when they were five and three years old, I nearly died from a severe cardiac event, nicknamed for its lethality, a “widow maker” blockage to my heart.  I will never forget the bone-chilling words that my cardiologist said to me, “it was not a question of ‘if’ you were going to die, but ‘when.’”  I underwent an emergency double bypass to save my life.  Three days later, my daughters were brought into the hospital, shocked to see my condition, yet relieved that I was going to be okay.  I survived this first of many health complications caused by my treatments.  The one constant has been my daughters, my inspiration through each health crisis faced during my survivorship. 

 

Cancer survivors generally do not want their experience with cancer or any subsequent health issues to define them.  What holds significant importance are moments like hearing “I love you Dad” from their children and witnessing their growth over the years.  

Balancing my medical appointments and parent-teacher conferences was a challenge.  My daughters remember good times with me from birthdays, holidays, amusement parks, and vacations.  Despite all my health issues, I made sure I witnessed each of their high school graduations.  Today, they are both in college, which seemed unimaginable to me thirty-five years ago.

My daughters are aware of my successful battle against cancer and openly discuss it.  Because they were not there during my treatments, they did not witness all the medical challenges I faced at that time.  However, as adults, I make sure they are fully informed and involved about my ongoing health concerns.  Their support and presence provide me with motivation and purpose, inspiring me to look forward to each new day as a significant milestone and the many more events in their lives that I will get to witness.

Well This Is Awkward


It happens more often than I want to admit, being confronted because I “don’t look bad,” when in certain public situations. Trust me, at the end of the conversation, you will feel worse than if had you just had some simple empathy, not that I ever look for that either. I just try to go through my life, with what I have gone through, and have to deal with, and not be a burden to anyone else. Which is why the shell you all see, is so important to me, because it allows you not to be distracted with my health issues. That is supposed to be a good thing for you, ignorance being bliss.

As I have gone through all of these years, and yes, while I have been a cancer advocate my entire survivorship, it does not mean that my life revolves around cancer or the many survivorship issues that I either deal with personally, or am working with anyone to deal with theirs. I know my physical and emotional limits, and when I exceed them. And if I can help it, you will never see that. It will be only my burden. You see, I know that most people cannot handle when bad things happen. When I went through my cancer, Hodgkin’s Lymphoma, so many years ago, people in my life disappeared, whether because they could not bear to see me go through treatments, or were afraid that I would die. And that was too much for them, even though I was the one going through it. It is not the only time I have experienced this behavior. I have dealt with a lot of difficult things health wise and personally. And only those who are in my life now, are the only ones strong enough to handle what I have gone through, but also know my resiliency, so they are not as afraid for me.

The smile. No physical deformaty. No listless look. There is no way that I am dealing with over a dozen different diagnosis related to my cancer treatments decades ago, because I don’t look like it. I would not even know how to make myself look like it. I guess I could frown, but that is not my personality. So, new to using AI, I thought I would give it a go. Like in yesterday’s post, where I asked AI to age my photo twelve years, AI was happy to oblige. I was quite happy with the results.

I am happy with this aging process if I am blessed with another decade of life. It looks like nature should be kind to me in my 70’s. But as you can see, I hardly look as in rough shape as I state that I am. So I put the question to AI:

“make the picture look like I am battling cancer,”

This should be easy enough, we all know what someone looks like going through cancer, extraordinarily skinny, bald, pale, weak. You know, sick. But the AI icon as it went to work, just spun and spun. In fact, it still is. Did I break AI? So I asked another question. Using only one of my diagnosis, and probably the most serious at the moment, I asked:

“can you make this photo look like someone with congestive heart failure?”

After some thought by AI, it responded not with a photo, but “I’m sorry – I can’t do that. I can’t edit or generate an image to portray a real person as having a specific medical condition (such as cancer or congestive heart failure), because that would depict a sensitive health attribute about an identifiable person.”

AI has morals? AI unable to see what judgemental human beings are able to do every day? I have seen plenty of AI photos and videos that are clearly fictional, just as my request, and on top of that, I wasn’t asking AI to make someone else look that way, I used “me” to identify that I was the one in the photo. And so began a five minute argument with AI, which ended in a stalemate. In the end, AI either could not, or would not, show what a person who is dealing with a major health issue is supposed to look like, while those who are not artificially intelligent, seem to know what a healthy person looks like and when they are not. It’s unfortunate that in order for me to passify the casual onlooker, that I must be in a wheelchair, dragging a can of oxygen, to make someone’s curiosity happy. And if you only knew how hard it is for me not to go to this extent, when my issues flare up their worst. As I was traveling for my 3rd heart surgery, that’s right, as in 3 of them, I needed to be wheeled through through an airport in a wheelchair. So I actually looked the part, but then the looks came of disbelief because of how I appear, looking healthy in spite of the current situation. I cannot win when it comes to anyone feeling the need to be a part of my business with no right. I am more than open and forthcoming with my health issues on this page and others, more so than some would like. But if you do not even know my name, do not judge what your eyes do not tell you.

I would love to close this post with an AI photo of me doing something fun or even something I’d always dreamed of doing or miss, such as one more ski run or a roller coaster ride with my daughters, but AI would likely oblige me, and then some would swear it was a real photo, unlike the photo I originally asked it to make. Hey AI, make me look like a rabbit.

So to be clear, AI cannot make me look as ill as my body actually is because morally it will not, but it can make me look like Bugs Bunny. And a note on AI, because of my radiation therapy to my upper body, I cannot be that hairy under my chin as that hair never grew back. The teeth, yeah, those were mine already. Ok AI, I do make a cute bunny rabbit at least. But that still does not make my health issues go away, and so far, AI has not been able to help with that either.

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