Paul's Heart

The “Speed Bump”

What does a speed bump do? It slows you down, if you are driving a car that is. I have referred to a couple of my former co-workers as “speed bumps” for similar reasons, because they slowed me down. But another thing that a speed bump does, if you hit it too fast, or if the hump is too steep, it gets your attention in a big way. I just flew right over a “figurative” speed bump. And just like speed bumps I see as I am driving, I knew this one was there as well. And just like other speed bumps, I often do not pay attention to them, and then wish I had done otherwise.

This was the second of two major milestones for me to have reached as a thirty three year cancer survivor of Hodgkin’s Lymphoma, my younger daughter graduating high school. But there was a speed bump approaching, and I had totally forgotten about it. Just like my car bottoming out of an actual physical speed bump, I was going to hit the “figurative” speed bump soon that I referenced earlier. And just like scraping the undercarriage of the car, this speed bump is leaving some marks.

As I did last year when my older daughter graduated, I spend Father’s Day week with my daughters. In full disclosure, this week is not just about having fun, making memories, taking pictures, we also get a lot done that needs to be taken care of until the next time that I see them both again. This year, both of my daughters will be in college, and then… well, they are off on their own lives.

If there is one thing missing from my younger life, it is pictures. I have very few photos of me as a child, and even fewer with either of my parents. Though I do have some memories of my youth, photos would definitely help to jog those memories. I know that, as my daughters often do not recall things we did together in the past. I have made sure they have photos to show them what they have done. A lot of photos.

This week has been no different, other than probably a lot less photos than ten years ago, attributed to “diva” behavior of two late teen/young adults. But I am getting my share of photos and memories. With the graduation photo pictured above, I was pumped for what I had in store for my daughters this week.

And then, an innocent photo, the type taken many times before, grabs my attention, like a speed bump, wrecking my inner core.

For the most part, most people find it hard to believe that I am a thirty year survivor of cancer, or that I have the number of major health issues that I do. I have even had one of my doctors tell me at an office visit, “you look great!”, especially when they know inside, my body is a train wreck.

But this photo shows the obvious, besides the fact, that it is obvious which shirts I must wear to hide what I have been through. This pullover shirt, exposes the major muscle loss that I have developed over the years, from my neck muscles, shoulder muscles, and chest muscles. While I currently consider myself in fairly good shape (all things considered) and my strength well enough, that same conditioning shows what I have lost.

A recent photo shows the results of damage to my neck from high dose radiation. Muscle loss from the back of the neck results in remaining muscles in the front of my neck, pulling my head forward, and eventually drooping down. Before I learned what was happening, I constantly heard co-workers accusing me of being depressed because I was always looking down at the ground when I walked. Turns out, I could not help it. Physical therapy and various neck braces can help to a certain point, but not reverse the damage that is cumulative. The degradation and muscle loss in the neck of many Hodgkin’s survivors often gets nicknamed “pencil neck.” All too often, you can pick us out just by that observation alone.

Honestly, I really don’t pay attention to it. I very rarely walk around without my shirt on, because of the horrific scars on my chest and abdomen which only took one incident to garner too much attention. I have trained myself not to really pay attention to mirrors because I know that in spite of the good shape I believe myself to be in, a side or rear view will show a “chicken wing” like appearance of my shoulders as opposed to a nice, rounded shoulder.

Normally, I do not let this appearance stuff get to me. I know that my more serious issues belong to my heart, my lungs, and many other interior issues. But as I looked at the current photo, I reminded myself, I should have paid more attention to the “speed bump.” The result, I still took a lot of photos, but now I was no longer in them, and the few that did now include me, I examined and focused on my chest and neck area to see if I hid my physical late effects well enough. Seriously, the stuff going on inside of me is supposed to be the difficult things to get through.

National Cancer Survivor Day 2023

Today is National Cancer Survivor Day (the entire month is recognized as National Cancer Survivor Month). Today, marks 35 times I have seen this day since my fight with Hodgkin’s Lymphoma occurred back in 1988. Being a survivor of cancer, regardless of how long it has been, is no easy fete. The struggle to survive is both physical and emotional, and though remission is often reached, and the struggle seems to fade, it never completely goes away.

I often consider milestones or anniversary recognitions in regard to cancer, as bittersweet. To this day, 35 years later, cancer is still the number two leading cause of death, just 20% less than heart disease, and 33 % worse than deaths related to Covid according to the CDC (Center For Disease Control). Cancer has taken six of my relatives. I can no longer count how many friends and fellow survivors I have said goodbye to, either directly from cancer, or survivorship related issues, their bodies just unable to take any more of the trauma from long term side effects from their treatments. Bitter.

But the sweet part, a continued life I never thought I would have, mostly, a family. And here I am, less than two weeks away from seeing my youngest daughter graduate from high school. There is irony. She was named after my grandmother, a two-time cancer survivor, and will graduate on the same date as the day my grandmother passed from her second cancer, changing the mojo of that day from one of sadness, to one of joy. And I know my grandmother is looking down and watching all of this unfold.

Merriam-Webster defines “survivor” to “remain alive” or “continue to exist, function, or prosper.” When we think of surviving something, our first thoughts usually go to some sort of catastrophic event, such as an earthquake, plane crash, or cancer. When we think of surviving an event on that level, there is one stand-out characteristic that all of those events and more have in common – we do not volunteer for them. There is nothing or no one on standby to prepare for something horrible to happen, to reduce casualties or injuries.

Which is what really frustrates me about television shows that hype themselves with “survivor” as the theme, of course I am referring to “Survivor” and Bear Grylls new show “I Survived Bear Grylls.” While I do enjoy competition style television, one major peeve I have are shows that claim survivorship. Again, an actual trauma victim does not volunteer. If they survive, they have every right to call themselves a survivor. But competitors on television shows like this, are volunteer, actually auditioned for. These shows are not about survivorship other than being the last person standing, a matter of endurance and strength, oddly enough, two characteristics of most if not all cancer survivors. But again, the difference being, cancer survivors never volunteered to get cancer. There is no cash or prize award for beating cancer.

I think what triggered me on this, while flipping through channels, I came across Grylls’ new show. The competition at the moment, Grylls hyped up as “man’s worst fear – being buried alive”, the contestants being placed inside a container, made of snow, with more snow piled on top of it, to simulate being trapped in an avalanche. Now, to be clear, if this had happened, an actual avalanche, and you survived, you get to call yourself a survivor because you did not volunteer for that to happen. While I doubt being buried by an avalanche is man’s worst fear, again, cancer? Hello?, Grylls explained what needed to be done and how fast. In the real world, you would either live or die, but this is a set, granted a natural set, but with several crew there to assist, risks of fatality are kept to a minimum. Cancer patients don’t have that kind of protection or assurance.

So, if you really want to know what a cancer survivor is and actually looks like, take a look around. We are all over the place. Some have gotten to enjoy life, completely worry free and in remission, others like me, continue to deal with late effects from our treatments, but we are still surviving.

How about someone making a television show about real survivors?