Paul's Heart

Life As A Dad, And A Survivor

Let’s Make A PACT For Cancer Survivors

I need to briefly mention a topic, which unfortunately is going to sound political, because of the current state at which it stands. But I have no choice, because the circumstances, rather conditions, can actually relate to cancer survivors.

I am of course referring to the PACT Act of 2022, also known as the Promise To Address Comprehensive Toxics Act of 2022, named after Sergeant First Class Heath Robinson. There is a lot covered in this bill, but the main crux of it, is that all military vets would have health care coverage for exposure to toxicities while serving in our forces. It is my understanding that this would even impact vets going back to the Vietnam War. Sounds like the right thing to do, right? Brave men and women of our country risk their lives not just from enemy fire, but various toxic exposures, that affect them the rest of their lives. We should want them taken care of, right?

Our government seemed to agree, as it went through the legislative process, the bill was introduced, passed through the House Of Representatives, and then passed the Senate. It should have been on its way to President Biden to be signed into law, and our vets would have been take care of. Instead, a procedure brought the bill back to the senate, where enough senators changed their “yea” votes to “nay,” causing the bill to stall. Hence, our vets are still left not being taken care of.

Bottom line, it is political games on both sides that caused this, and unfortunately we, are left to figure out who is telling the truth as to why. And while both side bicker, vets are dying; vets are continuing to get sick. In the short time since I started writing this post, the bill finally did pass, yet again, with an overwhelming majority as occurred originally. Please bare with me as the few days that recently passed, the result, taking care of our servicemen, is just one example, of doing what should have been done in the first place.

The solution is simple to this political gamesmanship… universal health care. Just like I stated as our health care system was rocked with the onset of Covid19. We learned just how valuable, a right, not a privilege, health care for all, just like nearly almost every industrialized and civilized country has, could have made a difference. The fight for our vets was no different. Every vet who has served, no matter when, should have coverage to assist their health care.

One of the key “beyond all doubt” issues of the PACT Act of 2022, is the presumption of service-connection. This means that for example, a vet who was exposed to the burn pits in Iraq, and develops lung cancer, it does not matter if he was a smoker, or worked in a quarry prior to his service in the military, the service-connection, his exposure to burn pits, closes the door to any fights that delay or deny treatments, getting the vet hopefully on the path to recovery. Sounds like a good thing, the right thing to do, no?

Enter a celebrity, former TV talk show host, comedian, and advocate, Jon Stewart. There are several around me personally who will chirp up constantly, “what business does a comedian have commenting on governmental affairs?” as if what he does for a living makes any of his statements less credible. But anyone who has followed Stewart over the years, knows that Stewart is well aware of the ins and outs of our government.

In June of 2019, Stewart found himself in front of a congressional committee, well, not really (due to a lack of representatives for the hearing who felt it was not important enough), to advocate for benefits for first responders of “9/11”. A similar situation, those who responded to one of our darkest days in history, were dying from exposure to the devastation at “ground zero” following the collapse of the twin towers in Manhattan. A similar situation, many first responders were left unable to get the medical help they needed, due to lack of insurance or other beaurocratic bullshit, getting sick, and dying. I say he was “not really” in front of the committee, because of the absence of so many representatives, who did not share the urgency or importance to attend the hearing themselves. Stewart would tell those representatives, “you should be ashamed of yourselves.” The brief history of the bill went like this: the original bill expired as planned in 2004, re-established in 2010, renewed in 2015. But by 2020, the funds were expected to be gone, without any further legislation.

Stewart’s goal, was to get a bill passed, to last 70 years, as many first responders were young enough, to live long enough to possibly reach their eighties and nineties, and likely developing issues related to their efforts on September 11th. The “Never Forget The Heroes Act” was eventually passed. Who knows where our first responders of 9/11 would be now if it were not for the advocacy of a “comedian.”

It took a long time to get to this point, but, if you have followed my blog for any length of time, you know I have a complicated health history. It is one that up until recent years, not many in medicine not only did not know about, but when faced with issues like mine, did not know how to diagnose them, or treat them. Like the situations mentioned above, the burn pits, and the rubble of Manhattan, causing late effects on the health of servicemen and first responders, cancer survivors, and if I am being specific, Hodgkin’s Lymphoma survivors can all too well relate to the situation of late effects.

Cancer survivors have really never been expected to live long. There is a popularized milestone of “five years,” a magical number, that if doctors were forced to say you actually beat a cancer, it is once you hit that five year mark. But for many Hodgkin’s survivors, we have lasted well past that five year mark, many of us into our third, fourth, and fifth decades. But just as servicemen and first responders developed issues over time from their exposure, we Hodgkin’s survivors developed issues over time, from the very treatments that put us into remission. The lousy thing is, back then, and just like originally the burn pits and ground zero, science was not prepared for and did not anticipate the health issues we all would face.

But where is our comedian coming to our aid, to be our voice, to advocate for our care, that we need to survive issues that have taken a toll on any number of our body systems whether cardiac, pulmonary, secondary cancers, you would not believe how long that list goes on. If it were not for fellow survivors, and one of the few good things about social media, we survivors would never have found each other, and given each other the support, and knowledge of our own experiences to each other, and continued to survive.

But where is our celebrity willing to speak up for us? There have been plenty of celebrities who have actually had Hodgkin’s Lymphoma (actor Michael C. Hall, pro hockey player Mario Lemieux just to name two). Sadly, as we hear about them, and we hope, “hey, now maybe a spotlight will be on us, and we can finally get the help we need.” Nope. Meh, we actually have an organization actually using the name Lymphoma in its title, the Leukemia and Lymphoma Society. You would think they would help out long term survivors at least with advocacy, if not for guidance and information. Nope. There are a number of other organizations in the cancer world, but none, really willing to take the megaphone like Stewart has done for both the servicemen and women, and first responders.

It was long term Hodgkin’s survivors who finally took the initiative on their own, to create our own organization, geared at survivorship. And because we are a group of people, in the hundreds, located all around the world, this group is appropriately called, “Hodgkin’s International.” But I am going to bet, that outside of my circle of survivors, and unless you have heard me refer to this organization before on this blog, you probably have not heard of that. Why is that?

So, as I said earlier, with some of my friends who object to celebrities chiming in for causes, excuse me for wanting someone to step up for me and my fellow survivors, help put a light on Hodgkin’s International. Help get us the medical care all of us need to continue to live our lives after cancer. Yes, this would be so much easier, if we could just have universal health care, and that would not just cover the servicemen and women, first responders, and cancer survivors as well as cancer patients. It is time to stop treating health care a privilege for only those who can afford it, and a right for us as human beings. It is time to take care of us, long term cancer survivors, for the things that happened to us, because we were treated and “cured” of our cancers.

“But wait, how much more is supposed to be spent on you? You got cured, how much more do you want and expect me to pay?” That was an actual comment made to me, and a topic for a different post.

Drip, Drip, Drip

It keeps happening, and I cannot explain why. I know when it started, and quite possibly the event that triggered it. I just cannot explain why it has not stopped. Surely enough time has passed. Evidently not.

Yesterday I took my daughter to the airport, following a brief visit with me. She was returning home, to prepare for her upcoming freshman year of college. The car ride was unremarkable, the expected “pep talk” about how “I am just a phone call away,” and a variety of sage-like advice, occasionally followed by the anticipated eye-rolls and “I know Dad”. I put a lot of pressure on myself, to make sure that as teenager at the beginning of her adult years, that she was prepared for all the financial decisions, the ability to be wary around snakes and predators looking for suckers, all the while remaining focused on her purpose for college, all the while enjoying the many new experiences she will have. I needed to make sure all of my bases were covered.

As we walked into the airport, both of us pulled up our masks (we still wear them, our choice), and proceeded to the TSA area as she did not have to check any bags since this was a short trip. My daughter took one last mental check-list to make sure that she had everything, and pulled out her identification. And then came our hug good-bye.

We have done this many times over the years following her visits to me. Even during times of custody conflict, unsure when the next visit might be, or, depending on how bad the Covid19 pandemic would get, unsure if and when the next visit could take place, I always kept my composure. This farewell was different though.

Let me reflect back before I get to that difference. There had been a lengthy time difference due to a custody issue that I will not get into, but it prevented me, legally from seeing my daughters, for well over two years. In that time, both of my daughters had growth spurts, and from the last time that I had seen them, when they basically came up to my chest in height, now, were as tall as me. I talked to them every day on Facetime, but I had no concept of how they had grown, until they were standing right in front me. It was shocking to me, the physical evidence of “time” that I had missed seeing them in person. I could not help but break down.

So back to yesterday, it happened again as I said good-bye to my oldest daughter. She let go of her carry-on luggage, and we hugged. And then I heard her say, “I love you Dad.” I have never kept track of who says it first, I would say it was fairly even regardless, but this particular moment, right after she said it, I am sure she felt my grip get a little tighter.

I had been preparing for this moment for a while now, and honestly, have a bit of an advantage over her mother as far as “separation” goes, and the time that my daughter and mother will now be separated, just as my daughter and I have these last years. And even though I felt I was ready, as my hug got tighter, I tried to say back to my daughter, “I love you too.” Four simple words, should have taken less than two seconds to get out. Instead, the effort took more than five seconds for each word, because all of a sudden, I was choking back tears.

This was not the emotions I felt concluding each custody visit. Quite the contrary, I knew at that moment, I was sending my daughter on her continued path of greatness as an influencer (out of respect for her I am not stating her interest, but her studies and her career will have an impact on people, I can at least blab that). The next time that I will see her, hopefully, will be at Christmas break, if not sooner. But she will have completed her first semester, the toughest semester to get through in college because of all the personal adjustments she, like all kids going to college, will face.

I never used to be this sappy or mushy. I had always been known to keep a cool head, focused on the task at hand, in control, never let anyone see my reactions. The “when” and “what event” I was referring to, emergency open heart surgery in 2008 to save my life was when my emotional floodgates were opened. While it is common and normal to experience depression and anxiety (I did experience both in the few years after), I feel that my “drip drip drip” of weepiness is something different. I just have yet to figure it out. I am not saying it is a bad thing, albeit a bit embarrassing, and once again for my daughter.

But as my daughter walked through the TSA line, she had no doubt, that I love her, even if I had a hard time getting it out.

The Next Chapter

I have been busier than usual this past week. I received a visit from my older daughter. This was not the usual visit that I had been used to, like visits shrouded by a custody order that made it feel more mandatory than natural. No, as an adult, this was a trip that she wanted to do. Both of us know, when she returns home, she begins her next chapter, college. We begin our next chapter, Dad and adult daughter.

On the way from the airport, I told her how much it meant to me for her to visit. And as my readers are aware of this “problem” I have, I also told her that I think I am ready to stop constantly looking at all the photos of my daughters from their childhood, as if grasping to hold on just one more day. This is a huge time for both of us.

My daughters know of the absence of my father from my childhood, but we really had not had a chance to discuss how my father and I moved on, the impact we had on each other, and in the end, what it meant to us. There is a difference in this comparison though with my daughters, as they will not have the huge gap, of a childhood lost to overcome. We simply make the transition to the next stage of daughter/fatherhood. As I remained active and present in their lives post divorce, there is no lost period of time that needs to be dealt with.

I have spent quite a bit of time over recent years, having more serious level talks as they near adulthood, to better prepare them. You know, the good stuff, money, decision making, and of course boys. As my older daughter’s visit comes to an end, I am hoping that I have covered everything that I want to make sure that she knows.

I am psyched as for the first time, she will have roommates, and not her family. She is literally trapped with them for the college year. I have expressed to her, that there is a huge difference between getting along with your roommates, and liking your roommates. To give clarification to her, I used a television show that she watches, Big Brother, as an example. Being a college roommate is not about eliminating anyone’s favor, so there is no strategizing for an edge. All four of these students are equals, and will remain that way for the school year. Accept that. Respect that.

There is a lot going on that first few weeks. Adapting to class schedules, study habits, eating, and very important, sleep habits all need to be learned by everyone. And then of course, there is all the activities going on around campus to experience. Finally, ah, the big city, must explore. Best yet, she has no one to answer to, except herself, that is, as long as her grades support her extracurricular activities.

Her course schedule seems pretty decent and manageable. And if she keeps up her study habits when it comes to homework like she did in high school, her studying should not be affected. She has already been to the website, “Rate My Professor”, and found all of her professors, and saw some of the comments about each, some good, some not so good. My daughter seemed to focus on the one professor who clearly would be the most challenging for her, a challenge I am confident that she will meet. The professor is likely to be the most critical, the most demanding, and the least forgiving, and someone who will truly test if she is meant for this major. Her biggest issue to overcome, procrastination. I urged her to no longer put off for two weeks what was assigned today.

I have given her as much fatherly advice as I can, but probably the most important, “you will make mistakes along the way.” And just as I always told my daughters growing up to “stay a child,” I have told my oldest daughter, “it is okay to make mistakes on this part of your life. Mistakes are a part of learning, and fortunately, at this point in your life, they will not likely be big mistakes you cannot overcome.”

Finally, I told her, I will not call her everyday like I have the last eight years, but that does not mean that I am not thinking about her. I know she will be busy, and as an adult on her own, she will have her own schedule. I asked only one thing of her. That we make sure we connect with each other either by phone or Facetime at least once a week, likely a Sunday.

I will drop her off at the airport soon, and give her that hug that sends her off on her journey. As she begins her journey of being an influencer, I hope that I have had enough of an influence on her myself.

I am proud of who you have become, and will be even more proud of who you will be. The two greatest blessings in my life, I get to call both of you, my daughters.

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