Paul's Heart

You Don’t Need To Fly To Understand This Lesson

You do not need to have ever flown to understand this post, but for the benefit of those who have never flown, there is a moment before the flight takes off, that flight attendants explain and demonstrate, in the event oxygen masks drop from the ceiling of the cabin, you are to put yours on first. That is all you need to understand about the premise.

So, if you are flying with someone special to you, such as a spouse or a child, you must avoid doing what is instinctual, putting the mask of someone you love on them first, and make sure you put yours on first. Why? Because you will not have time to do both. How much time does someone have? Literally, seconds before you pass out, the oxygen in the cabin is gone that quickly when the masks drop. And if you pass out, or at best, get woozy from the loss of oxygen before even securing another’s mask, you will both die from lack of oxygen.

The point, as hard as it may seem, put your mask on first, then help others.

At least monthly, I use this analogy to get across to someone, not necessarily but often another fellow Hodgkin’s survivor. Put your mask on first, before helping another. So what does that mean in the “non flying” world? Just like on the plane, you need to take care of yourself first. Using the example of caring for someone who is ill or fighting a chronic illness or disease, this analogy is perfect.

Anyone who has had to take care of another, all the while juggling their own life, from taking care of their house, tending to other family members, and taking care of their own needs, knows that the role of a caregiver can be exhausting not just physically, but emotionally. It is important to recognize the need to take care of yourself if in that role, whether it be getting enough rest, eating properly, and simply remembering to take a break when needed. Just like with the plane’s oxygen mask reference, if while taking care of another, you are not taking care of your own needs, your body will make you, and not always with good results.

There is no shame or embarrassment in needing to take moments for yourself. It is not an act of selfishness to say “time out, I need to give myself a break and tend to my needs.” But if you are like most people I know, good hearted people who have a tendency to put others before themselves, you do find it hard to “put your mask on first.” It is okay, no, necessary for you to do just that. “Put your mask on first,” take care of yourself, no matter what stress or crisis you may be facing for someone else, because that is the only way that you will be around to be of the service that is needed of you.

“Come Monday It’ll Be Alright…”

What do the following words have in common: escapism, paradise, “trop rock,” Parrothead? For many who woke up this morning to the news, they mean the loss of a music icon and legend, Jimmy Buffett. This photo was on the cover of Buffett’s official web page, and could not be worded any more descriptively of the man’s true loves, “family, friends, music, and dogs”. “He lived his life like a song to his very last breath…”

I don’t have many childhood memories of Jimmy Buffett, but I do know that I must have heard his music at some point in time, because as I got older, I recognized songs such as “Margaritaville,” “Come Monday,” and “A Pirate Looks At Forty,” that as an adult they would become definitely picks for me to sing at karaoke as many do. For me, his music was a perfect fit, as his voice range was spot on with mine. A lesser interest of mine, playing guitar, his music was also fairly easy for me to pick up and play on guitar as well. The ultimate experience, was getting to see him perform in person.

I would spend many of my days over the recent years, sitting out on my lanai, overlooking the Gulf Of Mexico, overcome by large amounts of stress, related to my health issues and divorce, finding a way to decompress, playing and singing Jimmy Buffet music with the backdrop of a Florida sunset. It would not be long, before I had found peace and relaxation.

Escapism. Escapism is defined by Merriam-Webster as the “habitual diversion of the mind to purely imaginative activity or entertainment as an escape from reality or routine.” I would compare it to meditation, but a lot more fun. Buffett was a story teller in his music, and as he told every song, listeners could often find themselves “taken back” to those lyrics, and “see” themselves in those songs. Whether “watching shrimp beginning to boil,” or “heading to San Francisco,” we could see everything he sang to us. It gave us a three or four minute opportunity, longer if listening to an entire album, to forget about the many things that were causing us strife and heartache.

Those who were able to see Buffett in concert, in person, were treated as if it was one big party, with 40-60,000 of their closest friends, because for two to three hours, EVERYONE was focused on the same thing, enjoying the musical paradise that was a Jimmy Buffett concert. Though I enjoyed his music, it wasn’t until later on my life that I got to see him for the first time. But boy did I get the enthusiasm, the enjoyment. And no, it was not the aroma of pot wafting through the air or getting slopped up with rum drinks getting spilled everywhere as fans danced to the music. It was truly an experience to not care about anything, forget everything, for those few hours.

Then there is the nerd in me. I love music, most genres anyway. I am not the greatest fan of today’s corporate sounds as I do not see many influential artists as there were in the 60’s, 70’s, and 80’s. At least not many that will have a lasting impact, albeit, perhaps Taylor Swift. But through Buffett, fans learned to experience other genres of music besides how his music was labelled, “trop rock” (short for tropical rock, the musical sounds you want to hear chilling out on a beach, sipping a rum drink). In recent years, it was not uncommon for Buffett to perform duets, especially with country artists like Kenny Chesney (“Hey Good Lookin'” cover), Zac Brown (“Knee Deep”), Alan Jackson(“It’s Five O’Clock Somewhere”), and pop artists like Lionel Richie (“All Night Long” cover) and rock artist Bret Michaels of Poison (“Margaritaville” performed live in concert). Buffett’s music had crossed over into so many other genres with so many different artists, only increasing more fans to his music.

The best story of Buffett though, is not in his songs, but his life. There are documentaries all over, as well as interviews. He has even been in some movies, one inspired by his fans, called “Parrotheads,” and the other, one of the best rockumentaries of music from the 80’s, “Under The Volcano,” about one of the most beautiful and influential recording studios and sessions, owned by Beatles former producer George Martin, recorded by so many well known artists, one being Buffett, until destroyed by the volcano of Montserrat. Buffett was constantly compared to Mark Twain and Ernest Hemmingway with his communication style, which is coincidental as both Hemmingway and Buffett spent a lot of time in Key West, though before Key West became the touristy place that it is today. But during his concerts and interviews, Buffett would share stories of his past, in regions with historical pirate and smuggling legends, often getting caught in the middle of his own legal challenges. But he always came out, cool and chill as ever.

One thing I had not known previously about Jimmy Buffett, was that he was born on Christmas Day. Perhaps that is one reason his music was perhaps one of the greatest gifts any of us could have to listen to his music.

Though he had to stop touring back in May due to undisclosed health reasons, as if being in your mid-70’s is not an excuse enough, I believe he was planning yet another album release. I know as of a few years ago, he was still sounding great, and singing live (unlike other musicians who no longer have “it” and should retire instead of using recorded tracks).

The one message that Buffett can leave a permanent imprint on our lives, after a 9-5 work day of stress and toil, “it’s 5 O’Clock somewhere,” and that means it is time to escape and relax. Enjoy life, just as he clearly did. With being a long time cancer survivor, music, and this escapism, has always been a part of my survival.

“Paul’s Heart” – Still Going Strong

Wow! When I thought of this post, and trying to come up with the title, I never realized how literal it was going to be. Yet, here I am. More than 15 years since my emergency life-saving bypass surgery, four years since my second heart surgery, and approaching my second anniversary of my valve aortic replacement, my actual heart is in fact still going strong. But what I was originally referencing, was my blog, “Paul’s Heart”, which although WordPress I think has a glitch, I do know I started writing here more than ten years ago, but the calendar on the blog only goes back to January of 2013. “Paul’s Heart” was always about advocacy and support for cancer patients, survivors, and eventually adoption, and single parenting. But the start came many years before that.

I had heard about a program called “Cansurmount,” operated through the American Cancer Society. As I reached the end of my chemotherapy treatments in the Spring of 1990, and had been declared in remission, I was filled with a need to give back. And “Cansurmount” I felt would be an excellent opportunity to do so. The program trained cancer survivors and/or family members to provide one on one, peer to peer, cancer like-specific support and information to patients and their relatives. In other words, as in my case, Hodgkin’s survivor to Hodgkin’s patient. The belief was, what better connection could be provided than someone who has gone through the exact type of cancer to support someone else.

The program itself, actually originated beyond the American Cancer Society at Denver Presbyterian Medical Center in 1973 and adopted by the ACS in 1978. It came to Pennsylvania in 1981, and my particular area in 1986. With enough trained “visitors”, the hopes of the program were to match like-cancer with like-cancer. Referrals for a Cansurmount visitor supposedly could be made by anyone from doctor to family member, but generally only came from the doctor or oncology office.

To qualify, a visitor needed to be at least 16 years of age, have had cancer, and be at least one year having completed treatment. There was a six week training course to complete, and a whole bunch of other rules associated with the ACS to follow. Then came the tough part, knowing the difference between being a “friend” with a patient, and being a “visitor.” Some trainees had attended the training with the idea of helping cancer patients, but instead found themselves needing help themselves to work through their own issues, definitely not able to reach out to help anyone else.

As a Cansurmount visitor, we were there to provide medical information, not give advice. Anything said between us was meant to remain confidential. Our opinions were kept to ourselves (i.e. “that doctor has a bad attitude”) and we never gave out medical advice. This is different than confirming concerns about side effects of treatments or perhaps seeking out a second opinion. As visitors, we had a variety of information to give patients. The most important thing, the patient knew we were legit in our support, because we had been there ourselves. If a patient asked what I would do, I would explain that it was not a matter of what I would do, but what was best for them. The thing about a cancer patient, is every patient is different, even if it is the same cancer. Each patient has their own physiology and reacts to the cancer and the treatments differently. The list of “Do’s” and “Don’t’s” was quite extensive.

The most valuable quality of a “visitor”, was the ability to listen. It was one thing for a patient to express themselves, but another to know they were heard and understood. One entire training class was on these “Active Listening Skills,” followed up with “Reflective Listening Skills.” Mastering both of these techniques was the only way for a patient to know and believe, they were being heard.

A quick way to cause communication issues was with negative remarks, accusations, assumptions, directives, and cliches such as the popular “you’ll be fine.” While no one ever wants to give up hope, we were never to give false hope either. Speaking as a cancer survivor myself, I will tell you some of the last things a cancer patient wants to hear:

• “I know how you feel.”
• ” God never gives you more than you can handle.”
• “You shouldn’t feel that way.”
• “You’ve got to be strong.”

There are many more, and just as not helpful. I know that I have been told most if not all of them. I still get told things like “well, you don’t know that will happen,” or “you’re just being negative.”

We would spend many more weeks in training, learning medical terms, learning common issues among cancer patients, and the most difficult of all, dealing with terminal patients and communication with children about cancer. The remainder of the training concerned administrative things such as paperwork and such. And then, it was off into the field. My first referral could not have been any more difficult, a terminal young teenage girl, like me, having Hodgkin’s Disease. You can read the actual story I wrote about her, called “Jennifer’s Story.”

Jennifer’s Story

I continued in the Cansurmount program several years, after which the program just seemed to vanish. Even today, there really is no trace of its history searching through the American Cancer Society. I was told, referrals just were not being made because doctors were concerned about visitors giving out medical advice or visitors convincing patients to delay treatments. To my knowledge, this did not happen, at least I know not by me.

But then I discovered the internet and other resources to reach out to provide comfort and support. Two major web sites were email list serves. Then came Facebook. Facebook did what the list serves could not, put faces to the stories and conversations. There are so many different cancer and survivor pages on social media today, even subject specific with topics such as financial struggles or infertility and other cancer related issues.

This inspired me to begin my “Paul’s Heart” journey. Originally I was just testing the waters to see if I could actually gather all of my thoughts and put them into a book, so it only made sense to begin with a blog. Well, just like Elden the painter on the television show “Murphy Brown,” who never seemed to be near done painting Brown’s house, it has been twelve years since I started writing that book. And since, I have split that effort into three other books, also started. The problem for me was I did not know how to finish my first book. The subject is cancer survivorship. Was this problem intentional or subliminal? Would ending the book on my survivorship signal the end of the greater part, me? Nothing left to do?

I have been witness to many things over the last three decades. Diagnostics and treatments that I underwent, now considered obsolete. I am finally starting to see medicine realize that if you are going to “cure” a cancer survivor, survivors need care, forever, even if just for preventative concerns. And I am seeing better communication and information provided. In 1988, hardly anyone had even heard of Hodgkin’s Disease. Now called Hodgkin’s Lymphoma, and created by survivors of Hodgkin’s Lymphoma, an organization now exists, INTERNATIONALLY, to inform, educate, and support patients and survivors of Hodgkin’s Lymphoma, called Hodgkin’s International.

I am in the homestretch of ending my first book. I now have a conclusion I can use, without my story ending. If not too much changes after that, perhaps I can just do a second edition, or if there is a lot to add, then that could mean another book. In the meantime, I am going to continue down the path I started over 30 years ago, one way or another, supporting other cancer patients and survivors.