Paul's Heart

Lara

When I was diagnosed with Hodgkin’s Lymphoma four decades ago, long before the internet, before I even had my first computer, all I ever wanted back then, was to meet someone, anyone, who had Hodgkin’s as well, and survived a long time. Today, with social media just to name one resource, I regularly meet patients, new survivors, and countless long term survivors, many who are long passed my 35 years of remission. Whether I have met them in person, exchanged texts and private messages, or even just commenting on a personal post, if I have held just one exchange with someone, that moment has had an impact on my survivorship, from inspiration to information, every person whom I have shared words with in regard to Hodgkin’s Lymphoma and survivorship, has been a blessing to me.

My decision to have stayed active in the world of cancer all of these years also comes with a price, experiencing loss. Cancer patients are often given survival statistics of “five year survivorship,” and then are never given any thought of again after that. And only through the internet, did a certain population of childhood cancer survivors of Hodgkin’s Lymphoma, begin to search out for answers, many years past five years, in search of answers to unusual symptoms that had developed, to be discovered related to the extreme toxic treatments we went through decades ago, only to find out, we shared these issues with others. From then on, our numbers of survivors discovering these issues grew exponentially. Not only did we share symptoms, we shared infromation where to find help, doctors who had been studying these issues. Just as important, we supported each other, encouraging each other, that in spite of being treated as if we were hypochondriacs, the symptoms we were experiencing were in fact real. And then, something none of us probably ever considered originally, we shared the same desire to meet others who had gone through Hodgkin’s, we were now survivors who wanted to meet other survivors.

And that is where Lara comes in. I “interacted” with Lara over various peer support groups for Hodgkin’s survivors, eventually getting to meet up with her in person. Like me, Lara was an author, having written a book titled “Scars And Scribbles And The Power Of Crayons,” an unlikely title for a book about a cancer experience. But Lara had a unique way that she wanted to tell her story, about Hodgkin’s Lymphoma, from the voice of a 7 year-old child, her age at the time. She wrote about her childhood experiences, and sacrifices, while going through her treatments, but not written as an adult, but through the eyes of the child.

We got together several years ago, which was easy living aproximately an hour apart from each other. There was an “open” reading at her local bookstore, and she invited me to attend. Actually, she asked me to also participate. I had not written my book yet, had not even thought of it to be honest, so I really had no idea what I would read. So I chose to read the story I wrote for my father, “My Dad Was Just Like Me,” (found on this site). I have been a public speaker my whole life, whether in politics, in religion, or survivorship. This would be the first time I would publicly read something that I had published professionally.

We spent some time prior to the reading, sharing our health backgrounds and experiences in survivorship, and just as she was, always found positive ways to still look forward in life. It was a nice evening. Reading my Dad’s story in public for the first time seemed to give it a different perspective than watching others perform the story as it had been done. I could see why Lara enjoyed this type of activity. Lara’s invitation gave me the motivation to finally write my first solo book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor,” though it took my long enough to finish it (4 years).

As with many survivors with late side effects, the body can only take so much trauma, and decides it has had enough. It is bad enough going through a cancer experience, but to face it multiple times, or have to deal with the severe late side effects from the treatments used to save the life, is just cruel. But that is often the case with many of us long term cancer survivors.

We lost touch over recent years, likely by her choice as other survivors had lost touch with her as well. This life that some of us live with every day, and participating on various social media pages, can be overwhelming at times, so that when we have a good day, we just want to get away, or if we are having a bad day, there is fear and also possibly a burden we do not want to put on others. As inspired as we can be seeing the stories of other survivors, the risk we expose ourselves by personal involvement or actually meeing another survivor, and then pass away, can be devastating.

Like too many others that I have been blessed to cross paths in survivorship, Lara passed away last week. It is a risk we take when we open up our hearts to meet someone, “just like us,” when, back in the beginning of this history, was all that we wanted. But now, as yet another fellow survivor passes on, many of us, including me, are reminded of our mortalities. While I cannot speak for others, I know personally that I do all I can not to dwell on that, my mortality. Yes, I am all too aware of the flippant “you could get hit by a car crossing the street,” or “slip and fall in the bathtub and break your skull.” But having been exposed to the high doses of radiation and the toxicity of the chemotherapy drugs that I and others were treated with, actually “throws us into traffic” or “greases the tub” to increase the chances against us.

Make no mistake, and this was something I learned from Lara, I go to bed each and every night with plans for the next day. I have plans for my future. I expect my body to wake up the next morning. And at the end of the day, I will be grateful for that additional day that I got. And while there are pluses and minuses with survivors exposing them to additional negative thoughts or grief by personally interacting or meeting another survivor, and yes, hurt when we lose someone, in the end, I am glad that I took each and every opportunity, another lesson in survivorship I might not have thought about otherwise. Best yet, having memories of them in better days, not how their story ended.

Lara was a great friend. Lara was a great inspiration. Lara was a true survivor. Lara will be missed.