Paul's Heart

Paul’s Heart, A Movie? Art Imitating Life

Two books, both based on a common thread, cancer, Hodgkin’s Lymphoma to be exact. Obviously, the book on the right you may recognize, my book based on my story with cancer and the next thirty-five years of my life. But the book on the left, “Walking Through The Fire” by Laurel Lee, was published in 1977, nearly 40 years before my book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor”.

Lee passed away in 2004 at the young age of 58 years old, from a secondary cancer, pancreatic, most likely attributed to the lesser understood late side effects from the treatments of her Hodgkin’s Lymphoma, much like you have seen me mention here on Paul’s Heart. In fact, I would bet dollars to donuts, there was never a connection made between her pancreatic cancer and late side effects from her treatments, because at the turn of the century, this issue of long term cancer survivorship still was not commonly being discussed, understood, and shared at the level it should have been talked about.

Anyway, her book chronicled in journal format, following Lee from her diagnosis at the age of 30 with Hodgkin’s Lymphoma, and oh by the way, pregnant with her third child. This is actually a common situation to face by women, discovery of Hodgkin’s only because of the prenatal appointments, having to treat cancer while pregnant, with the cancer and the treatment both a risk to both mother and child.

Lee’s pregnancy was pretty much the only difference between she and I. I was diagnosed roughly eleven years later at the age of 22, with our experiences pretty similar, unlike those today, who are dealing with Hodgkin’s, reading what I went through thirty-five years ago and are probably like WTF! Like me, Lee had her biopsy, which would confirm her Hodgkin’s, and force her to choose, keeping her baby, risking health to both mother and baby, or abort. I have seen this situation so many times on my social boards. She made the decision to pursue both her pregnancy and her treatment for cancer, both with procedures to be done. Lee actually underwent upper mantle radiation in the final stage of her pregnancy, clearly risky for the baby. But with timing imperative for treating Hodgkin’s, her choice to keep the baby, left no choice to the risk.

Barely time to hold her newborn, Lee quickly resumed the process for dealing with her Hodgkin’s. She underwent a lymphangiogram (not fun I can tell you), resumed her radiation therapy, following she had a laparotomy done (doctors remove the spleen, and biopsy lymph nodes and the liver). She talked about, and I can confirm, the unimaginable pain from having an eight inch verticle incision on your abdomen. This is where I am going to leave the book. And I can tell you, everything is definitely relatable.

In 1979, CBS made it Lee’s story a television movie. I saw it late night for the first time, in 1990 after I saw an advertisement, and it mentioned Hodgkin’s Disease, something up until that moment, I had not heard mentioned about anyone else.

The movie was star-studded, with Bess Armstrong playing Laurel Lee. I did not get to finish watching the movie as it was late, and I was exhausted from my treatments. It turns out that it may have been just as well because, well, between reading her book, and my own experience, it was safe to say, Hollywood took some liberties when they had a chance to portray something real. It was during the movie when she underwent that laparotomy that I had enough and called bullshit. I mentioned that the surgery involves an eight inch verticle cut on the stomach, through muscles. It hurts, A LOT!!!! And we got a lot of pain medication to deal with that pain, and when we moved, we did so very gingerly. That was not how Hollywood portrayed it. Lee was up and about from her hospital bed the next day, showing no signs of pain or discomfort. That was definitely not how I remember how mine went.

I get it. When Hollywood tells a cancer story, they don’t want a feel good cure story, a happy story, one without the pain, the stress, the emotional challenges. Hollywood prefers sad movies like Brian’s Song, or Terms Of Endearment, or Beaches make good movies because the characters die. Television is no different.

(photo courtesy of Apple TV)

Times have not changed. One of the latest shows I enjoyed binging has been Shrinking with Jason Segal and Harrison Ford. Out of respect, I will try not to spoil as best as I can, but a new issue develops in Season three, again something that I have personally experienced, and thought, “wow, this will be relatable.” Now I realize these episodes only being a half hour long, you cannot go into too much detail or story line. But in this case, as soon as I saw things begin to develop, my heart skipped, and my eyes began to water, because my intuition was telling me, the story was going to take a hard turn, one that I have personal experience with, and still struggle with emotionally when witnessing someone else face it.

A character, who I will not name, develops a heart issue, in fact, the level of severity that I faced back in 2008. The character undergoes corrective surgery, it is never said what so I assume it was the simpler trans catheter method (not open heart), but then I see the character holding a heart pillow to their chest, which would indicate it was open heart surgery after all. And of course, being Hollywood, the character was sitting up, in the room immediately after the surgery, no wires, no drain tubing, no machines, and no pain. Though there are hints emotionally as to the toll, I definitely feel Shrinking fell flat on this story line. I really wish they had not because there are so many people who undergo this surgery, and will see something that just doesn’t happen that way. Shrinking has been good dealing with Ford’s character’s Parkinsons. But if they were not going to get more into the emotional toll of a life and death cardiac situation, they were better off leaving it alone. And no, I won’t spoil what happens with the character.

In my book, I go into details. I tell the whole story, and so many survivors who have read my book, are amazed and unfortunately some re-traumatized by just how vivid my memory was when I wrote the book. In any case, I doubt Hollywood would ever make my book a movie. There is definitely a lot of drama from medical to personal. But spoiler alert, the main character does not die, so, sorry Hollywood, this story has a happy ending. It does get me thinking, who would I want to play my character if Hollywood did make my book a movie.

Understanding The Difference Between Pity, Empathy, And Sympathy

Regardless if you are a patient or survivor, or a caregiver, human beings are all capable of possessing 3 traits when it comes to care and seeking support: pity, empathy, and sympathy. Each of these qualities can be experienced during a health crisis and depending on which one can have a huge impact on all of those involved.

First, let’s understand one thing, There is no training or education to prepare for a diagnosis of a serious chronic illness or injury. Likewise, there is no training or education to care for someone faced with either of those same situations. No matter which side, we learn as we go. Some of us may end up experiencing both sides which gives us extraordinary insights to how we react as well as others.

So what exactly is pity? It’s simply feeling sorry for someone whether it is something you offer on your own, Or whether it is someone seeking out this type of attention themself. That person of attention is often perceived as being less fortunate or weaker and in some cases there is little emotional connection. Pity can unintentionally feel condescending. As those wanting to offer pity, we want to care and offer support, recognize their feelings, while we remain somewhat outside of their experience.

Empathy has to do with understanding and feeling what someone is experiencing. To have empathy with someone is to emotionally connect to their experience, to see things from their perspective, and it allows the development of a shared sense of caring. It is through empathy that builds the strongest connection between two people.

Sympathy is acknowledging someone’s pains or discomfort and expressing concern.  You care and you want to offer comfort, you recognize their feelings, and you remain somewhat outside of their experience.

A simple way to remember the difference between these three, pity equals “I feel bad for you” while allowing you to keep your distance.  Empathy translates to “I feel with you” recognizing a connection.  Sympathy he’s letting someone know “I care about you” also known as support. There is a real insightful distinction because 1 is about what someone is trying to get and the other is about how someone shows up for them.

This is what it looks like with someone seeking pity, Emphasizing hardship in a way that draws attention or validation, wanting others to say that’s awful or feel sorry for them, sometimes even repeating the same issue without wanting solutions. There could be an underlying motive, not always conscious, to feel seen, validated, or important, or to gain emotional reassurance or support. Occasionally pity is used to avoid responsibility or shift the blame. When dealing with someone seek pity we can feel left drained or that the situation is 1 sided, perhaps the other just wanting attention more than understanding. A person seeking pity is also more likely to rebuff any actual assistance or help, or continue to make another excuse after another, to continue seeking attention.  And to be clear, not everyone seeking pity is being manipulative. Sometimes they just don’t know how to ask for deeper support.

Someone who offers empathy is someone who listens without interrupting or judging, trying to understand the other person’s feelings and perspective, responding with care not superiority. The underlying intention of someone offering empathy is to connect, not fix or judge, to help the other person feel understood and not alone. A person offering empathy wants the other person to feel safe, validated, and most importantly humanized.

The core difference between these two is seeking pity equals “please feel bad for me” coming from the person in pain whereas the person offering empathy is saying “I’m here with you” coming from the person responding.

I hope this is helpful in any situation you find yourself in whether as a patient, survivor, or caregiver.

Peer To Peer Support On Social Media

When I was diagnosed with cancer in 1988, Hodgkin’s lymphoma, I could not have been any more alone. There was no social media, there was no Internet, I did not even have a computer. What little I could find about what I was about to experience came from encyclopedias and researching through old newspaper files, you remember microfiche?

37 years later, we have the Internet and a robust resource of peer-to-peer social media pages and websites. These resources are filled with access to information ranging from experiences to medical information and resources, and stories of long term survivorship, probably the only thing of concern when it comes to beating cancer second only to hearing the words “you are in remission”.

While all this technology can be a very good thing, it does not come without its risks, and a lot of misinformation. I express constantly that I am not a doctor and for that reason I do not give out medical advice. Besides that lack of medical degree, I have no personal knowledge of medical history of anyone reaching out to me to make any kind of decision. It is that same reason I do not give out legal advice as I am not an attorney. However, I am able to provide anecdotes, stories and personal testimonials, verified information and facts to direct anyone looking for support as they deal with one of the most traumatic things a person can deal with in their life. I have no problem telling anyone, take the information that you find, share it with your doctor, and together the two of you make that decision.

With “Paul’s heart” I have reached so many people literally around the world offering support and information and guidance. And while I am not a big national worldwide organization, it is my hope that those who have followed me all of these years, who have shared my posts and videos, that I have made a difference even if just one person at a time. It is my plan and my hope to continue doing this for many years to come. And as always please like my page, follow my page, and please share my page, As that is the only way that I can continue my mission, to make a difference in the survivorship of cancer.