Paul's Heart

Life As A Dad, And A Survivor

17 Sep 2022
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3 – 2 – 1 Fire Engines


***I am going to stress, this is not a political post, and any comments including political commentary will not be published and/or deleted.

It was a concept, called the “moonshot initiative” back in 2016, that President Obama announced during his State Of The Union speech. The push was inspired by the passing of the son of then Vice President Biden, Major Beau Biden, who died from brain cancer. The goal, to eliminate cancer once and for all.

Growing up in school, as early as my kindergarten years, I remember all the fundraising to research cures for cancer. Fifty years later, though many cancers can be put into remission, still too many die. We have seen so much progress in so many other areas of society, yet the number two killer, cancer, continues to not be stopped.

As a 32 year survivor of Hodgkin’s Lymphoma, and as involved as I am with advocacy, I have no problem making the claim that we have just accepted that science has done enough, that survival rates of cancer are good enough, not everyone can be cured. Like bile stuck in the back of my throat, this thought makes me sick. But the fact is, over the recent decades, cancer research had actually been reduced, at least the funding for it. There is no reason, that the high remission rate for Hodgkin’s that existed in 1988, 85%, has not resulted in a 100% cure rate over thirty years later. I cannot speak for all cancers, but I am sure that the sentiments will be fairly similar.

So when I heard that President Biden was announcing his “reignition” of the Cancer Moonshot initiative, he had my attention. Because of my personal involvement with the world of cancer, I am able to put my political gripes aside. I wanted to hear what he said. I wanted to hear the goals hoped for by boosting this program. As an advocate for cancer patients and survivors, I am all too aware of what we lack and need to support each other through cancer. We just are not able to do it on our own. Representatives that we have meeting with members of Congress have not really produces anything tangible up to this point. Remember, in recent decades, funding for cancer research had been reduced, not increased.

The first and probably main point President Biden made, was that he wanted the cancer death rate, which has been climbing dramatically in recent years, “cut in half within 25 years.” Some would ask, “why not eliminated? Why settle?” It is like going to a smorgasboard, loading up your plate, perhaps getting a second plate to fill along with the first. You get to try everything on your plate, but very likely you do not finish even one item completely. Cancer has been around for hundreds of years. And there has never really been a 100% commitment to eliminating cancer. To make the claim to stopping all deaths from cancer has not happened in fifty years, and is not likely to happen at least in my time, hopefully my daughters will see this day. So for now, I feel a 50% reduction in a rate that is constantly increasing, is a good approach. Realistic.

There is another major goal with this “cancer moonshot,” that affects nearly every cancer patient and survivor, improving the quality of care for both, and not just in therapeutics, but in the actual care itself, from the knowledge and skills of the doctors themselves, to the mental health of the patient and survivor, and an improvement to the overall quality of life during and after cancer. Probably the biggest obstacle or challenge for a cancer survivor, is getting medical care for late developing side effects from the treatments that put their cancer in remission because too many doctors just have not been taught this important chapter in their medical books. It is not good enough just to get us to remission. I know it sounds like I am being ungrateful. F* off if you actually believe that.

One way to lower cancer deaths is to prevent cancer, or at the least, detect it early. Let me tell you, it is a hell of a lot cheaper to do a preventative screening, than it is to run a full course of treatment of chemotherapy. THEN WHY IS IT NOT BEING DONE!?!? Actor and advocate Ryan Reynolds recently made headlines, just as late night talk show host Jimmy Kimmel years ago, by videoing their colonoscopies (well, at least the parts that could be shown, and honestly, the most important part was the “reveal”). You can hear the doctor explain what was found, polyps, and learn just what happens if a polyp does not get removed. And then you see the genuine gratitude of Reynolds, knowing that a possible cancer diagnosis, had just been avoided, by prevention. According to Roswell Park Cancer Center, 5-10% of polyps will turn cancerous, and depending on the size, increases the chances.

I myself, because of my cancer past, am already a risk for additional cancers, and undergo a colonoscopy every two years (most of you are only expected to go through one every ten years unless polyps are found). But guess what? Each colonoscopy, multiple polyps have been found, and while up there, removed before they had the chance to turn cancerous. Having been through cancer once before, and knowing the financial toll, prevention is definitely the better way to go.

The fact is, we have screenings for so many forms of cancer. But where is the big push to get them done. There is always reluctance to get a colonoscopy or prostate exam, pap smear, mammogram, and many more. For some, it is about stigma (like the stupid concept that getting a colonoscopy might make a person “gay” because of going up the rectum – not only is this ignorant, it is also stupid). For others, it is about fear, what if?

Another interesting factor, is the “age adjusted rate”, which is a fancy way of saying, people are surviving longer after they are treated for cancer. NO SHIT SHERLOCK! That means that research needs to be done on the issues faced by survivors from the late developing side effects from the radiation and chemotherapy exposures. Duh! Anyone following “Paul’s Heart” has heard about this issue many times. But it is not good enough to be able to treat these issues, too many, most survivors in fact, have no idea where to turn to. And if they are lucky enough to find someone, getting access to that care is another hurdle. One more issue to be dealt with, communication needs to be improved not just between doctor and patient/survivor, but between the doctors themselves when multiple practices are involved.

If you have paid attention, I have always spouted the success rates for Hodgkin’s. And several other cancers share those high numbers as well. Why are we not seeing 100% yet? Science knows what has worked for so many, why settle for “good enough?” On top of that, many treatments are so toxic and damaging, often times, permanently, worse, deadly. The “moonshot” hopes to continue to discover specifically targeted and new types of treatments from immunotherapies and mRNA therapies and such. Even some cancer now how vaccines. Why not more?

You can definitely count on more “awareness” when it comes to what individuals can do to help to prevent cancer from diet to exposure to such things as smoking and chemicals.

With the passage of the 21st Century Cares Act, an additional $1.8 billion was provided for new cancer research (per whitehouse.gov). THIS IS NOT NEARLY ENOUGH! Not when you consider all the cuts over the years prior. If we were truly treating this like a “moonshot” (I am too young to remember JFK’s speech), then all the stops should be pulled out.

One new creation, and I do believe a step in the right direction, is the creation of the Oncology Center Of Excellence, so that cancer-related decisions such as therapies and information can be streamlined, as opposed to getting bogged down in the red tape the FDA, CDC, and NIH. Another department has been formed with “moonshot” called ARPA-H, the Advanced Research Projects Agency For Health. I don’t want to sound bitter, but while this department definitely will be focused on speeding up research on prevention, detection and treatments for cancer, ARPA-H will benefit many other serious illnesses such as Alzheimer’s and such.

There is more that “Cancer Moonshot” is going to tackle. The issues of inequity, whether racial, religious, sexual, all play an added role in hampering those diagnosed with cancer whether it be economical, geographical, or just plain bigoted. Science needs to find out why certain treatments work for some and not for other, why some relapse and some do not, and why some people have later health issues during survivorship. As the whitehouse.gov site points out, the rapid discovery of treatments and vaccines for Covid19 prove our ability to get the same results for cancer.

President Biden also recognizes the tolls taken on patients and their families, financially and emotionally and wants better support as the patient moves on through survivorship.

One of the best resources to help get this done, you are reading it right now. Well, I am just one of thousands, who are willing to share with science, and our government leaders, our experiences, our concerns, and our needs. Who better to inform or teach our government and research, than actual patients and survivors?

There are a few more details, more organizing, more departments joining together. I just hope that this is finally the push to make it happen. Politics aside, there is absolutely no excuse for one of the most advanced countries in the world, not to be further than where we are today.

So, “ground control to Major Tom, commence countdown. Engines on.”

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart
15 Sep 2022

This Was Us


Decades before Jack and Rebecca (in full disclosure, I had to look up their names as I have never seen the television show “This Is Us”), there was my fiance and I.

We had been dating for a couple of years, in actuality, most of it as “engaged”. We were social butterflies, looking for parties to attend, just wanting to have fun. She was slightly older than me, and she had an established career. At age 22, I was still barely “legal” drinking age (yes, having to stress the word “legal”). I still really had not figured out my life, and it did not matter. I found someone that I wanted to hang around with the rest of my life, which sounds different than “spending the rest of my life,” and perhaps it was. All I knew was that we were happy with each other. We had fun with each other.

In November of 1988, that all changed. I had just come from two other locations in this order, an oncologist (cancer doctor), and my employer, who would be the first person to find out, that I had just been told that I had cancer, Hodgkin’s Lymphoma. It was an odd choice that he was told before my fiance, but it really just happened to be circumstance. My fiance lived forty-five minutes from where I was, and I was upset enough, I struggled driving and knew that I should pull my car over. My workplace was actually on the way to her house where I planned to tell her in person. But as I drove by my work, I saw a light on in my boss’s office, and I pulled into the parking lot, and went inside. This story is for another post, but long story short, we talked about what just happened to me in the last two hours.

While that detour actually ended up being unintentional, it ended up being a dry rehearsal, for gathering my thoughts, what and how, I would tell my fiance, that I had cancer.

When I got to her house, she was in the back room with her mother and father. I asked her to join me up front in the living room, that I had something I needed to talk to her about. She was expecting me that evening, as was usual, but did not expect what I was about to tell her. She got the cliche “you need to sit down for this.”

“The doctor thinks I have Hodgkin’s Disease (it was referred to as disease back then instead of lymphoma).” She looked confused, not sure what that meant. I had to clarify for her, “cancer.” A tear welled up in her eye, and she uttered out, “so what does that mean? Are you going to die?” More tears were coming out, a lot more. At that moment, I just hugged her.

She had a previous boyfriend that was killed in a motorcycle accident. I was certain that she did not want to face another tragedy of another significant other. But I had one conversation in my head up until that moment, some further testing that needed to be done, and likely treatments, to hopefully reach remission. That is not what came out.

“Listen, this is not what either of us had planned on. And while I do love you, I love you enough to understand, that this diagnosis is going to change everything that we had planned for our future, and what you may have dreamt of, quite possibly in a very bad way.” My mind had switched from caring about my needs, to thinking about my fiance. I knew her well enough, that she would not just bail on me because I had cancer. She had a great heart, and would never do that. Even if it meant exposing her to yet the possibility of another boyfriend dying. Call it arrogance, but I did not want that to happen to her.

“Listen, I am about to undergo a lot more tests, including a major surgery, all to determine how bad this is going to be. And I could have to go through chemotherapy and radiation therapy, all which have the potential to interfere with our wedding plans. We may have to postpone, or even if we go ahead, I have no idea what will happen to me. There is a chance that we could not have children. There is a chance I could die.”

She had been listening carefully to everything I was saying, yet she remained stoic. And then I said to her, “I would totally understand, and be okay with, if you wanted to call things off. We would part as friends, and I would completely understand, because I know what you have gone through before and do not want you going through it again. I would never hold this decision against you, because in the end, our lives will never be the way we had planned after this.”

As I now read what I said, and wrote here, what a stupid thing to say. But as I said, I was 22 years old, and clearly not ready to even make a decision on getting married, let alone, face the road that I was now on.

She made the decision to stay with me and we were married six months later, following six weeks of intense and extreme levels of radiation therapy. Our honeymoon was nowhere near what we had planned, as expected due to my recovery. When we returned, my follow up appointment revealed that I had new disease located, and this would mean highly toxic chemotherapy. This course would leave me unable to have biological children. It seemed, what I had warned her about ended up being correct. Our lives together would never be as we had imagined, and now, we were “stuck” with the decision of having gotten married.

There is a common expression amongst many cancer survivors. “Don’t let cancer ‘define’ you.” That is not to say that you cannot change, but perhaps even improve. You do not need to go through the rest of your life with a huge “C” on your chest. But there is nothing wrong, with seeing things in a different light, another perspective, a reorganization of priorities, or what might or should be important in life. When you have faced something life threatening, it is an understatement that there is a new lease on life.

One problem that can occur, while the survivor definitely knows what the experience has done to them, those around the survivor, caregivers such as spouses or other family members or friends, do not. They may have witnessed the struggles, and may have been able to empathize, but those closest to the survivors have no idea the changes that have taken place, and may continue for many years later.

That is what happened with my wife after my treatments ended. My wife was ready to move on with the lives that we were living prior to my diagnosis, which relied a lot on socialization and partying, fun. Again, while cancer has never defined my life, it did have an impact on it, and if there is anything good that did come of it, it was the change and awareness of what I felt was important in life, things that should matter, wanting to make a difference. The only problem is, my wife did not share that same direction. And though we gave the appearance of getting along as a married couple to those looking on, inside our house, we just co-existed. We both were going in our own directions. Until…

My wife was hit head on while driving home from her night class, a dark, two lane rode, with high embankments, nowhere to go. She was driving a Geo Storm. The other driver was driving a Ford Crown Victoria. The result was like an army tank running into a Mattel Big Wheel toy. My wife was flown by helicopter to the hospital with serious injuries. As I went to the junkyard the next morning to retrieve her belongings from the car (if I was able), the image of what was left of the car, left me with a sunken feeling of my skeleton having been removed from my body, total collapse. The front end of the car was completely crushed as easily as a soda can, and the top cut away to remove her from the car. The other person’s car, hardly any damage except noticeably broken headlights. How my wife ever survived this accident, I would never know how.

Now remember, cancer is a life threatening moment. And I was not going to let it define me. It could lead me to want to improve myself, appreciate things and life more, good things. I had been frustrated that my wife could not understand what I was going through. But as the weeks went on following her accident, I held out hopes, that now, having been put in her own life-threatening situation, she not only would understand how it felt for me, but that she too might see the difference her life could have, our lives, I felt, for the better.

As time went on, and her healing continued, change of perspective did not happen. And I did not fault her for that. Epiphanies do not happen to everyone. Her goal upon recovery, was to get right back to what she was doing and enjoying before the accident. She was not interested in anything different. From that point on, we continued in our separate directions, albeit civilly, until one fateful conversation, that resulted in not being able to turn back from, leading to our divorce. As I said, our situations affected each of us differently, and looking back on that fateful day, when I broke the news to her of my diagnosis, I wished either she had taken me up on my offer to walk away from me, or perhaps I should have just ended it myself.

While this was not a period in my life I am happy with, combined with my attitude of not letting cancer define me, the changes in my life that occurred because of my cancer, and the many challenges since, have made me the person that I am today, most importantly, an example for my daughters to look up to and respect. That when the time comes for them to get involved with someone, they expect someone who will share their similar values and dreams, not just be willing to support in difficult times.

Posted in Cancer, Education, Family and Friends, Inspired By..., Recreation | Leave a comment
10 Sep 2022
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There Is Life After Hodgkin’s Lymphoma


As Lymphoma Awareness month rolls on, I want to write a lighter piece about Lymphoma, about life after Lymphoma. While I wrote last, that we are never really over “cancer” even when we hear the word “remission,” there is still a life to be lived.

One of my favorite places to visit both as a child and as an adult especially with my daughters, was a place called “Boulder Field” located in Pennsylvania. I spent hours upon hours climbing all over the rocks, never taking the same path, or hiking the same combination of boulders. Each trip was different. It is kind of symbolic for all the different things that would be ahead of me in my life after Hodgkin’s Lymphoma. The ironic thing, prior to my cancer, I do not believe that I was doing much of anything with my life worthy of fulfillment or purpose. I had been content with living a “party” lifestyle that my first wife and I were enjoying. No commitment. No plan. Just show up. That was our “normal.”

But there is a phenomenon known as a “new normal” that cancer survivors experience. Resistance is futile, because it is just something that happens. It would have been easy to pick up right where I left off before the rude interruption from cancer. But with all of the toxicity and damage I had gone through with my treatments, I had to be more careful. A new “normal.” I had follow appointments and testing to undertake as part of this new “normal.” For the first time in my life, at the age of 24, I began to think of other things I wanted to do with my life. And part of that was not to let cancer dictate my new “normal.” This new “normal” was going to be what I made it to be.

A couple of years after my treatments ended, I led our church’s youth group. Actually, this was the first of two that I had been in charge of over ten years. I had done something that other predecessors had not done, and that was open the group to all ages of children, not just the teenagers. Sure, their activities were grouped just as the different levels of school; pre-school and elementary, middle school, and high school. But at least once a year, the entire program came together on a Sunday dedicated to the youth of the church, and all participated and led that Sunday’s services, no adults. The program had all kinds of activities for outreach, and the older kids, the teenagers got to experience road trips such as ski trips and white water rafting. It was an honor to watch these kids grow. In fact, over twenty years later, I am still in contact with several of them, now parents themselves.

I would get an employment opportunity that would change my life forever, working for a major pharmaceutical company in medical research. After years of trying to improve my otherwise mediocre employment situation, and in spite of having no college degree in medical research, after just one interview, I was hired. The job not only provided a much better salary, but something up until that point, since my cancer diagnosis unobtainable, health and life insurance, without being discriminated against. I would actually handle one of the drugs used in my chemotherapy cocktail. But the biggest reward was to be a part of some very important discoveries against several major diseases.

I began to travel. One wish I had was to see my favorite football team, the Seattle Seahawks, play their arch rivals, the Raiders. That trip out west, would change the way I travel forever. For me, the trip became about opportunities. On this trip, I would actually get to meet two fellow Hodgkin’s survivors in person who up until that point, I had only known through emails. Both were a bit younger than me, and diagnosed a few years after my treatments had ended. But I got to see several places I had never seen before, Seattle, Anaheim, Bakersfield, and Lake Tahoe before returning home. From that point on, nearly any trip I made after that, would almost always involve an opportunity to meet other survivors.

But one of the biggest events, which actually happened twice, happened because of the one long term and permanent effect from my treatments, the inability to have biological children. On two separate trips across the world to China, twice I became a Dad. Every day with my daughters has been a blessing, and many times a new experience, likely an experience that never would have crossed my mind such as swimming with dolphins and stingrays, exploring caves, and so much more. Nothing could be cherished more, than being their Dad, each and every blessed day. Both now in their late teens, they are soon ready to go out into the world, and make their own memories, and for that, I am truly blessed as that spectator.

I will only mention this part briefly, well, because it speaks for itself. For over a decade, I have been writing about my experiences as a cancer survivor, whether it be on “Paul’s Heart,” published in various medical newsletters, anthologies, and am currently working on four books of my own. This has led to opportunities to speak in public at various functions as a living, breathing long time survivor of cancer. A frustrating thing for me really, that more of a big deal is not made about us. But perhaps the coolest experience of my writing career, was to have something I wrote performed live:

An unexpected direction in my life occurred back in 2009, when I decided to enter politics, at our local school board level. I was unhappy with the way the current school board had been behaving and many of their decisions, which I felt would have an impact on my daughters educations. And so, I enjoyed the experience of two campaign runs. It was a wonderful and exhausting experience, there were so many memories made. Several long term friendships came from my running for school board, friendships from running mates. I wanted to, and felt that it happened, to make a difference for my daughters educations, which of course would benefit other’s children as well.

The Covid19 pandemic gave me an opportunity to return to something I enjoyed doing, playing guitar and piano again. I won’t ever do it publicly, but I am having a lot of fun again, expanding my musical horizons. Combined with my singing, I even wrote my first song and recorded it, a very cool experience.

No, my life did not turn out at all the way that I thought it would. But then again, I never thought I would get cancer either. But as many put it, “I won’t let cancer define who I am.” I am far from finished writing my story. And to do that, I have to keep living my life after Hodgkin’s Lymphoma and in spite of what it has left for me, just as my fellow long term survivors.

Posted in Adoption, Animals, Cancer, Education, Family and Friends, Inspired By..., Politics, Recreation, Side Effects, The Heart

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