Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “survivor”

Another Year, Another September


September is a busy month for raising awareness of certain cancers; blood cancer, ovarian cancer, prostate cancer, thyroid cancer, leukemia and lymphomas – often referred to as “childhood cancer” though clearly strike at any age.

If you have followed this page, followed me even before I began “Paul’s Heart,” I have been involved with the world of cancer over 36 years as a patient, survivor, and advocate. I was diagnosed with Hodgkin’s Lymphoma (actually called Hodgkin’s Disease) back in 1988. I was treated with levels of radation therapy and a chemotherapy cocktail I was not expected to survive, let alone barely tolerate.

Today, I deal with late side effects from both of those treatment regimens that were used to save my life, creating situations almost as fatal as the cancer itself. If you look at the list of “I know”s pictured above, I experience each and every one of them to this day, thirty-six years later. In fact, just today, I learned of a friend who passed from a different cancer, not even a year after diagnosis.

I continue to write, record TikToks and YouTube videos, give speeches, and my most important role as a survivor, advocate and be a voice for others who feel voiceless or without knowledge because it has been the only way for me to give back. My body is so damage from those treatments, I cannot give blood or donate my organs. The only way I can help others is with my experiences. And it is my plan to continue to do so, always with the mentality “if my posts help just one”, though I know my words have reached so many more, until I can do it no more.

I am at the point now, approaching a major milestone, the age of 60 at the end of the year, something I definitely never thought I would see. My survivor’s guilt never takes a break as I say goodbye to one survivor after another, from the same cancer as me, either from the cancer, or the late effects. And even harder for me to deal with, outliving those in my life who have not had to deal with health adversities, something I struggle with constantly.

If I can attribute anything to my longevity, and though they were not yet born when I dealt with my Hodgkin’s, my daughters were there, and have been there, with every health issue from my treatments that I have faced, my inspiration to keep fighting. Yes I know, I cannot control when my body has had enough, as evident by my friends and fellow survivors before me, but there are so many more milestones I want with them, and that definitely drives me.

To my fellow survivors, celebrate this awareness. Any of us who have taken on cancer, knows how hard it was to get through. And for those who are no longer here, you are definitely not forgotten.

Survivor Guilt


The following is a link to a newsletter article that has been published in Memorial Sloan Kettering Cancer Center’s quarterly newsletter for cancer survivors.  This was my second submission.  I am copying the story here, but for it too look really cool (and of course, see the other topics that are discussed) make sure you check out the link.

http://www.mskcc.org/sites/www.mskcc.org/files/node/4333/documents/bridges-spring-2013.pdf

Question:  I recently lost a fellow cancer survivor and am experiencing survivor’s guilt. Do you have any suggestions for coping with these feelings?

Answer:  First, please let me express my sincerest sympathy for the loss of your friend.  Survivor’s guilt is a common and often underestimated feeling experienced by both patients and caregivers. As a survivor or caregiver, we are expected to just be grateful and simply move on. Do not ask questions. But we do.  A year after my own treatment ended, I trained and participated in a peer-to-peer program with the American
Cancer Society called “Cansurmount.”  The concept is to match survivors of cancer with patients who are struggling with their own diagnosis, treatment, or survival.

My first patient was a 14-year-old girl who would eventually pass away from the same cancer that I had, leaving me to ask, “Why her and not me?”
As someone who was fortunate to have beaten the odds, it was not long before I found myself facing an unexpected and insurmountable wall
of self-doubt, which I refer to as my survivor’s guilt. Perhaps survivor’s guilt is a way for our hearts and minds to remind us of where we came from, and what we have endured. The important thing to realize is that this feeling is often overwhelming, but can be alleviated.

With technology, I have been able to widen my experience and knowledge of cancer patients and survival. I have participated in Internet support
groups for over 15 years and finally accept that with 22 years of survival behind me, I am a long-term survivor.  Surviving also means that I have
experienced loss. In just over a decade, I have said goodbye to well over 100 friends and relatives who were not able to achieve that remission.

The question I still ask myself is always the same, “Why them and not me?”  But what gets me through each and every day is knowing that my survival mattered to those who have passed.  My experiences inspired them just as theirs inspired me. There is no way to know the reasons that some survive and, sadly, others pass. The answer can be as simple as the one that comes from a parent when a child asks, “Why?” and the parent responds, “Just because.” It is cruel and it hurts.

It matters that you are here now and asking this question because at some point someone else will read your question when they are questioning
their survival and know others have gone through a similar experience.  Reach out for help. Support from others with personal experience or
professional knowledge (like the staff of the MSKCC Counseling Center) is essential to help us understand that what we feel inside is common and
expected, and can be overcome.

Reality TV Bites! My Pitch To The Major Networks


Shows based on reality.  Oh, the humanity!
“You’re gonna lose your mind watchin’ TV” Oh, and “Fear Factor” I watched maybe a half hour after that, felt like I needed a long shower
Network execs with naked ambitions, “Next week on FOX, watch lions eat Christians”.  Leech-covered grub-eatin’ fools on “Survivor”
I love shows with or without a plot I’ll stare ’til my legs are numb, my eyes bloodshot
Because I only have got One brain to rot
I’m gonna spend my life watching television a lot

These lyrics are from Wierd Al Yankovic’s song parody “Couch Potato”.  I have intentionally only copied the references to reality television.  You can read the complete lyrics on any web page.  Late last year I attended a cancer survivor event.  One of the speakers was a head honcho at Memorial Sloan Kettering Cancer Center.  When he finally began speaking he mentioned the uncomfortable feeling he got referring to former cancer patients as “survivors”.  Survivor is often a term we associate with war, accidents, natural disasters.  I am paraphrasing, but that is the gist of what he said.  I believe he was attributing it to the duration of the event and the effects following it.  I would go one step further as far as using the word survivor, not just for cancer patients, but those who have survived war, disasters, and other tragic events.  I believe the word “survivor” has been cheapened by “reality TV”.

I will admit that I do watch an occasional reality show, but it is very rare.  The whole concept of someone volunteering to be put in precarious positions, be paid for it, and referring to the victor as a survivor is insulting and demeaning to those who have had no choice, who are not given a financial opportunity to recover (or in the TV world, profit from their effort or gain their fifteen minutes of fame).

Seriously, take a look around your waiting room.  In walks your doctor with a TV producer, and about a dozen people whom you do not recognize.  Since you do not know any of the visitors it is up to the doctor to introduce to you, what is about to happen.

“I have been approached by this major network about a new reality show about getting through a battle with cancer.  These people have all volunteered to be given the same cancer, and the same treatments.  There will be challenges where they will be given the opportunity for extra treatments, or denied treatments.  Competitions will determine what order people would receive their treatments.  Losing challenges would also carry consequences.  Every week, one contestant will be sent home by vote from the real patients who are not here for the TV show, where they will then have to find their own treatment plan.  The last one standing, or surviving, will be the winner of a million dollars.  As participants as observers, we will make sure that you get a year’s supply of TV guides to make sure you know just when the show is airing.  Sound good?”

Of course this scenario is prerposterous, and offensive.  But many times, when I watch shows like Survivor, Big Brother, Fear Factor, and now all these sub-class shows like Redneck Vacations and a show mocking an overweight child because her parents are too stupid to realize the damage they are causing, I do not want to be held in the same descriptive sense of the word survivor.  I have been through too much for my journey to be so understated just because it did not appear on some remote island.  My psychological battles are far worse than a group of spoiled egotistical jerks who believe the only way to get by is by being deceiptful, and disloyal.

We cancer patients are kind of funny with the labels that healthy people, and sometimes other cancer patients like to place on us.  Survivor.  Warrior.  And I am not going to rip on people who watch the reality shows.  But just once, I would like to see a major network produce a series and stick with it, about true survivors, not volunteers, we were forced into our situations.  We were not made into millionaires because of it, but there are literally millions of us, over twelve million.  Many of us have additional issues, and most do not know why.  Stand Up 2 Cancer is doing great by drawing attention to supporting research to find new cures and support, but we need something to show that people do live long lives in spite of their greatest challenge in life.  A walk around a track at your local Relay For Life is lined with luminairies with the names of people who have faced cancer and beaten it.  I would like to see a Nationally televised Relay For Life with at least half of the program dedicated to survivors and perhaps expanding the Stand Up 2 Cancer to include the various issues that survivors face after treatments from psychological to medical.  Just once, I would like to see a real reality show that is not based on backstabbing, lying, and degrading.  I would like to see true success and show people how success is really celebrated and appreciated.

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