Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “survivor”

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.

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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.

Why Travel To New York When You Live Here?


“Don’t let economics determine where you get your care.”  Linda (a friend of mine and former long term survivor).

It is really an exhaustive day, a nearly five hour commute each way, sometimes just for a 45-minute appointment.  On a normal day, I have several appointments scheduled up in Manhattan at multiple locations.  One of the most frequent questions I get asked almost as frequently as I travel, “why do I go all the way to New York City for my care, when there are so many doctors around where I live?  It is a reasonable question, but unfortunately has a historical and statistical answer.

First, you need to understand what it means to be a long term survivor.  There is no set number of years to qualify.  Although statistically, five years seems to be a magic number. ” 80% of such and such live to five years without blah blah blah…”  It used to be that not much attention was paid to patients who survived decades later.  Not by the doctors.  Not by the pharmacutical companies.  Not by society.  So there really was not much in the books concering long term cancer survival.

If there are others, I apologize, but I am currently aware of only one doctor who has done this study for decades.  That would be Dr. O up at Memorial Sloan Kettering Cancer Center.  Dr. O has been studying Hodgkin’s Disease and late effects from treatments for decades.  Along with Dr. H out at Stanford U., the two of them are the top doctors in this field.  They both operate what are called “survivor clinics.”  A survivor clinic is where I go for all of my long term side effect issues.  They know the follow up testing that needs to be done based on the treatments you received.  And here is the crazy thing, at least in Dr. O’s case, he routinely has my primary care doctor back home do all the work, treatment and follow up.  And they work like a team perfectly.  My doctor admits that this discipline of knowledge is relatively unknown to her, just as most other doctors as it is not included in their studies.  Where I benefit, is that she has an open mind.  If I were a normal forty-seven year old man, most likely she would not order certain tests once, let alone annually.  But Dr. O has the background, the studies to support how to follow up and treat those of us who were never expected to live this long.

Over time,mor clinics have popped up across the country, Duke University. Dana Farber in Boston, Vanderbuilt, and I believe there is one in Seattle.  There are plenty more.  There are also facilities that specialize in particular systems effected by cancer treatments such as radiation.  The Clevelan Clinic is one of the, if not the best cardiac hospitals for patients who have had radiation therapy to their chest area.

Through internet support, I had known so much about MSKCC already, I just had to figure out how to get there, and if needed to frequently, the logistics of how that would work out.  I could have gone down to Philadelphia where there is another good survivor’s clinc, but unlike MSKCC, I had not heard of anyone going there.  This is not to say they were not good.  Of course they are one of the top hospitals in the country for treating cancer, it would only make sense that they would be great at managing survival as well.  But I had the opportunity to see Dr. O, who I consider the best in the world for dealing with long term effects.  And I was lucky as well as blessed to get to be his patient.  He does for me, what should have been done twenty-three years ago, and what is done automatically now for new cancer patients, follow-ups.  He has a plan, just for me.  He has another plan for another patient, and so on.  I see several disciplines of medicine from gastrointestinal, cardiac, pulmonary, physiatry, psychiatry, and ENT.  We are all different, but under his care, we are all treated with the best care available.

Because some of our side effects are so unusual, it requires knowledge of all the radiation strategies used decades ago, and the various side affects of chemotheraputic drugs.  This is where I come in, where you might come in.  Many of us do not have our records any longer from decades ago.  Mine were incinerated.  But Dr. O was able to figure out the protocol for 1988 for me, and the dosages, and that is what determined his plan to follow me up with.  Now of course, it is not spot on.  My body has decided not to follow even Dr. O’s book.  But anything that occurs with me, he is made aware of it.  My primary care doctor is made aware of it.  I make sure that everyone involved in my care is made aware of it, and has copies of all pertinent reports.

So why do I go to Manhattan, on average once a month, if not twice?  Peace of mind.  I do get a lot of time to meditate to help me relax which is something I have a hard time doing.  But I know Dr. O will leave no stone unturned if I complain about it.  I knew each doctor that he refers me to, will treat my case as legitimate without having to waste time justifying everything.  But as part of my treatment team, I need to know that I am included in everything being decided.  And he does just that.

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