Paul's Heart

Rob

My fellow long term survivors and I lost a good one a couple of weeks ago. Do not mistake me, all of my fellow survivors are good ones. But Rob, there was something extra inspirational about him, that not only gave many of us hope, but also challenged us. As he went through the last few years, in spite of the struggles, he never gave up. Even in the end, it was on his terms. Rob was in control.

I had known Rob for many years, though I never had the chance to meet him in person. He was a long term survivor of Hodgkin’s Lymphoma, just like me, and just like me, he had late developing side effects from his treatments that had gotten bad enough to require intervention.

It is easy among our “group” to forget that we have other things in our lives, that our world is not just about our current health crisis. Though that is exactly how our support is set up. As survivors, we share our experiences and knowledge, so that if a survivor is dealing with a doctor who does not get “it” as to what is happening with our bodies, we can hope that the doctor will be open minded and pursue the possibility of something unrealized.

There is more to our world than surviving the cure that gave us all this extra time from cancer. Sadly, it is only after Rob’s passing, that I learned of two of his interests that I would have loved to have our conversations dominate rather than cancer.

I never knew Rob was a musician and singer. Wow, the conversations that we could have had based on this common thread between us. But I have only found out recently just how good he was, and how much he enjoyed the world of music.

It could not be any more appropriate than to describe Rob as being “out of this world.” A web developer and and project director for online media, Rob was a valuable staff member for a wonderful art/science museum/exhibit known as “Exploratorium.” I cannot come close to even begin describing how awesome this experience is. But if you have ever been to an “immersion” type of museum exhibit, this is definitely not one to be missed. Clearly, Rob enjoyed his “work.” You can check out Exploratorium at the link below.

https://www.exploratorium.edu/

Rob was a true outdoorsman enjoying his environment around him.

We have a place that many of us like to share our lives outside of survivorship. And all too often, as many wonderful things we do get to talk about and share with our fellow survivors, that there is life after Hodgkin’s Lymphoma, our conversations do return back to our health as it comes back to the forefront, sometimes in a rude way.

Personally, and though I have written about many survivors who have passed, this took me a bit longer. Like many of our Hodgkin’s survivors, he had heart complications from the treatment later on in life. We are faced with so many factors that determine our fate if we go through with any corrective surgeries, that can result in success or failure. There is no bigger risk for us, than with open heart surgery. But depending on how badly scarred our insides are (from radiation damage), less invasive methods with lower risks are not an option.

Rob was someone who faced open heart surgery for his issue. Informed of the risks, he made the decision to proceed. And although not perfectly smooth, all of us, including Rob, thought he had turned a corner. There would be setbacks, and with each one, he seemed to overcome those. Of course, the majority of time this all occurred, was during the Covid pandemic. And even one of his caregivers exposing him to a Covid infection himself, something that should never have happened, never dampened his belief that he would get through this. It had been so long.

He finally decided his body had been through enough. If you have ever had to deal with a medical trauma or long term illness, one of the worst feelings you have, is the loss of control of “you.” As you get treated or recover, you do not have control. If there is one phrase that really bothers me, “lost ‘his’ battle with…” It has not been used in Rob’s case, and I wish this would be the case more often for others. Rob did not lose his battle. He decided that he had gone through enough. He took control, control that had been taken away from him.

I have everything in writing, as well as having discussed with enough of those around me, my decisions when it comes to getting through the rest of my survivorship. I feel that if my body is strong enough, which I consider enough as of this post, my body will fight to survive on its own, and I will get through it. However, if there is any lopsided risk with something being proposed to correct with my health, there are two things I do not want to happen. I do not want any complications that would leave my survival being a burden on my loved ones. And I do not want any lasting image other than when I was last seen out and about publicly. I am firm in what I want.

But then someone like Rob comes along, and he has not been the only one throughout my survival, in spite of the risks, makes the decision to go all in, and fight with every fiber of his being. His updates though not great, still gave hope to him, and all of those who knew him. It was this fighting spirit, and like several before him, that often lead me to question my personal decisions, and comparing levels of “fight,” which really is not fair.

Time and trauma, both worked for Rob, and against him. And there is not one fellow survivor or anyone who knew Rob personally, who were hoping for anything less than turning that final corner, and getting back to the things he enjoyed. Sadly, time ran out, the trauma was too great.

Rob, your spirit, your support, and just your wonderful outlook on life, will be so greatly missed. I have never known anyone who has played in a Blue Oyster Cult tribute band. But growing up, I got to hear Blue Oyster Cult in concert, from miles away from my home, at an outdoor festival, because they were that loud. Rock on wherever you are, and we will hear you play.