Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “cancer”

22 Jan 2013

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.

Posted in Adoption, Animals, Bullying, Cancer, Education, Family and Friends, Food, Recreation, Side Effects, The Heart and tagged , , , , | Leave a comment
22 Jan 2013

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.

Posted in Cancer, Family and Friends, Side Effects, The Heart and tagged , , | Leave a comment
19 Jan 2013

Why Me?


(Thank you for another good topic sent to me to write about.)

Why me?  Maybe the question should be why not me?

I spent only one evening on the first question when I found out that I had cancer.  It is like spilling grape juice on a white carpet.  You can either stand there and stare at the deepening stain or you can get right to work cleaning it up.  I worked very hard to rid that cancer from my body.  I had no choice.  A stain in the carpet, you can at least replace the carpet when it did not come clean.  My life would not have that opportunity.  I could not worry about how or why the juice was spilled, I had to clean it up, now.  There was no length of time to ask “why”, I had to start treatments, now.

That is not to say that I left myself off the hook.  It just took me a lot longer to get there.  In a short number of years following the end of my treatments, the question that would haunt me, and do so repeatedly, was why not me?  I had gotten through my treatments of course with the short term side effects, but only one would show any kind of permanence to it, the hair loss from the radiated area.  Within a couple years of treatments, I would find out that also my thyroid had been compromised from the radiation, and chemotherapy left me infertile.

But in 1997, I met a group called the American Cancer On-line Resources web site, www.acor.org .  I went on to the link for long term survivors because that is what I wanted to be, a long term survivor.  I was around seven years out, so hopefully that qualified me.  It did not take long for me to realize the web site was not what I thought it was going to be.  Yes, the people here were long term survivors, but they were dealing with so many horrible and severe issues that they were blaming their cancer treatments.  I did not stay long on the site because I did not feel that I belonged in that arena.  But something made me sign back on again.

I began to meet people at least over the internet who had gone through similar experiences with even the same diagnosis and staging as me.   But they were at a stage now, where they were either dealing with another cancer, heart issues, muscular issues, bone related concerns, and so on.  It was hard for me to relate because I was not experiencing those issues.

Then I met one particular list member who to this day, is one of the most important survivor that I have ever met.  For privacy reasons, I will call her Tina, and if she reads this, she knows I will talking about her.  It was over fifteen years ago when I first heard her struggles.  Tina had gone through treatment for Hodgkin’s Disease, just as I had.  But her treatment was done in a hospital network up in New York.  My treatments were done in Allentown.  She had been treated the year before me.  But there was a huge difference between one year, and several hundred miles.  The amount of radiation that she was exposed to was double what I had been, which was 4 times the lifetime limit.  Our chemos were similar.  By the time I had met her, she had already had another cancer (thyroid) and over two dozen surgeries.

Why did she have to go through so much?  Why not me?  Tina was not the only one.  I personally met dozens more long term survivors, some had the same staging, same treatment, different treatment, and most all had different issues they were dealing with.  But why them and not me?

I have often wondered about the three other patients who were treated with me in the oncology suite.  I never met them or even knew their names.  I only know that I opted for additional preventive chemo, and they obviously had not, evidenced by their absence.  I did find out at the time that two of them did have to have their chemo adjusted for their low blood count levels.  Some how, I took 8 full dose complete cycles.

But along with the people going through Hodgkin’s, or other cancers, patients who relapsed, patients who lossed their battle, or other long term survivors, I forever asked, “why them?  Why not me?  The relapse patients and my friends who passed away either from their cancer or secondary issues often left me with empty and hurting feelings.  I relied on them for hope and inspiration.  In spite of what they were going through, they were still living a long time, much longer than cancer patients were supposed to.  And since I had no serious issues at the time, I counted on that.  Why them?  Why not me?

Before I go any further, I must state, as I always do, times change.  Everyone’s bodies are different not only in physical being, but how they react.  Geography, schooling of the doctor, attitiude, diet, sleep, and many more factors all play into how well you do with treatments.  Then of course, there is progress.  That is something we often take for granted.  We think that it takes forever for new things to be discovered, when in reality, new treatments are discovered nearly every day.  If the treatments work better, and are less toxic, and produce less side effects, the patient will get those treatments, and the former treatments will become obsolete or at least last resort like those that were used on me.  The same was said to me decades ago, by other survivors who came before me.

Like I said earlier, I do not spend a lot of time asking “why me?”  But around the time that I met the survivors I now know today, I did begin to ask, “why not me?”  Why were others who were treated around the time I was treated developing such side severe side effects and I am not?  Why are people who were treated with the same modes of radiation and chemo in bad physical condition and I am not?  Why does Tina have to repeatedly go through life arrest and I do not?  Why them and not me?

Here comes another one of those “yeah, but…” disclaimers.  Back as late as the mid 90’s, cancer survivors still were not expected to surpass five years statistically, in spite of the fact that millions of cancer patients were doing just that.  But once it was realized, protocol was developed and the need was understood, to follow up cancer patients, even if completed with treatments.  There is still some discussion as to which doctor should be doing this, your primary care doctor or your oncologist, but now a cancer patient is followed up, forever.  And as cancer patients we know, the earlier something is caught, the better the chance of survival.  And by the continued follow-up care, any secondary cancers or issues that develop will be caught earlier than the critical care that was needed to prevent what would have been my fatal heart attack.

There is a lot to miss, if you spend too much time asking “why me?” or even “why not me?”  Just like the time passes if you stared at the expanding, wet, purple spot of grape juice still sitting on your white carpet.

Posted in Cancer, Side Effects and tagged , , , , , , | Leave a comment

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