Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “long term survivor”

Thoughts On My Back

This one is for you my friend.

As a long term survivor of Hodgkin’s Disease, cancer, I have learned alot medically, and about my survival.  I have learned about risks, protocols, and needs.  I have been through much worse in my life with radiation and chemotherapy.

If you have never been a patient before, there are a lot of things that go on in a patient’s mind, at various points of procedures.  The mind races as people hustle around you, roll you, and all of a sudden choose that moment in time to mass introduce everyone to you, which if you are going under anesthesia, will not remember them anyway.  Your mind is consumed with what to expect following your procedure.  Almost as in real life outside of the hospital, inside, I do not take the time to look around, notice my surroundings, relax, enjoy, appreciate.

This story is dedicated to my good friend who takes notice and appreciates her surroundings.  This is more than just a child laying in a grassy field looking up at puffy skies.  This is a grown woman, possibly with things of her own on her mind, but as she travels, she takes photos and speaks about the very details that she notices during her visits.  She slows down.  She enjoys.  She relaxes.  She appreciates.  And then she recalls, in vivid details.  So Cathy made the suggestion to me, as I have seen my share of ceilings, what do I see?  What do I think about?  Interesting that I had never really given it much thought until now.  But with a pair of procedures coming this Wednesday, I started thinking.  Hmmm…

So yesterday, I payed attention to my first ceiling.  I say the first ceiling because once I was rolled into the procedure room, all I noticed were the multiple monstrous digital flatscreens.  If my throat did not hurt right now, I would probably grunt like Tim “The Tool Man” Taylor.  (All together, I know you are doing that right now.)

But this is the first ceiling I looked at, my holding room.  Wendy looked at me funny because I was staring at the ceiling, and she asked me if I was counting ceiling tiles.  When I told her “no,” for some reason, she referred to the light grate which of course was about one and a half foot wide, and two feet long.  The argument, how many squares total were in the light grate.  If you have Facebook,  then you have seen this puzzle several times where you have to count how many squares actually exist.  Initially, it looks like sixteen or something, but then you look at the squares that are formed by the other squares and so on, the number comes out to be in the twentys.

We never did get to finish calculations because just then the techs came in to roll me to the procedure room where I would undergo my first colonoscopy and second endoscopy.  You would think that would have been on the forefront of my mind.  But thanks to my friend, the techs were now standing there, staring at the ceiling.  Counting.

Okay, seriously, I want to get this done and over with, the colonoscopy, not square counting.  I will do the math at home, or maybe I will not.  Maybe I will give it a shot for my next procedure.

For anyone wondering how many squares there were?  There were six across, and seven long.  So the answer is not 42.  You do the math.

My First Visit To Sloan Kettering Memorial Cancer Center

March 3, 1995 was a day that I had waited for five years to occur.  I was going to use the word “cured” with confidence that my Hodgkin’s Disease would be gone forever.  I had learned so much over those five years.  I had to watch if I got a high fever, keep an eye out for lumps and discolorations, all common sense stuff that I could do on my own without having to pay a co-pay for.  And in spite of statistics being based on five year survival rates, there was no evidence that I was going to comply with those odds.  Things were on my side for a long life.

I recently wrote a post on “big hospital vs. little hospital” so I won’t repeat my thoughts on that at this time.  As far as I was concerned, it was life as usual.  I would see my family doctor, whose practice is an hour away from my home, once a year, for a seasonal allergy shot.  I never thought about hospitalization, because prior to my Hodgkin’s Disease, I did not need to worry about hospitals.

But then I got the rude awakening when I dared to complain about a symtpom that I had ignored for nearly four months.  I was told that I needed open heart surgery at age 42, and it was due to radiation damage from my treatments eighteen years earlier.  I was at a hospital that I was more than familiar with for many reasons, of which is another post.  But the Lehigh Valley Hospital was one of the biggest networks in the area, so I felt in good hands.

One of the first things that I should have done when I got out of the hospital was head to Atlantic City or Las Vegas.  I was one of the luckiest people on the planet because I not only pre-empted my pending fatal heart attack, but I would come to find out, after getting my surgical report, that my surgery was based on the care for the average heart patient, not for someone exposed to four times the lifetime exposure of radiation and chemotheraputic drugs such as Bleomyacin,  Adriamyacin and other anthracycline drugs.  Decisions that were made then, could have had much different results.  Neither my doctors, nurses, or myself knew what was at risk.

In the past, I had been involved with an on-line support group for Long Term Survivors of cancer.  Up until now, I had never felt like I belonged there, because everyone that I had met on this list, were dealing with ailments blamed on their cancer treatments, cardiac, pulmonary, liver, secondary cancers, etc..  At worst, any issues that I had been dealing with from my cancer treatments were some hair that had not grown back, infertility issues, and thyroid issues.  Up until now.  So the first thing I did from the hospital was not visit a casino or play the lottery, I went back to those that I knew, would know best.

I am not qualified to define what exactly a “Long Term Cancer Survivor” is, or determine what criteria is to be met.  There is no committee collecting membership dues.  There is no ruler.  There are moderators, who are survivors themselves facing severe health issues related to their treatments, and they have the unpopular challenge of protecting each participant from common email attacks or personality clashes.  The fact is, we have enough to deal with.  And so it began, the journey to find doctors who specialize in long term cancer survivors.

Unfortunately, long term side effects are not widely studied by primary care physicians, specialists, and other caregivers.  Only in recent years does the discipline even have a recognizable heartbeat with an occasional article in the New England Journal or other publication.  Of course, the researchers and pharmacutical companies did not spend much time or money on late side effects, because we were not expected to survive a lifetime.  But we do.

Through the Childrens Oncology Group, I learned that there were two facilities that were within a decent day’s road trip, in Philadelphia at the University Of Pennsylvania and in Manhattan at Sloan Kettering Memorial Cancer Center.  From the internet support group, I knew a lot more about the program at MSKCC, but knew that both hospitals were some of the best in the country.

Scared, and running out of hope, I contacted the first name that I recognized from MSKCC, Dr. O.  In him, I struck gold.  He originally practiced in Texas.  For decades, this doctor studied Hodgkin’s Disease and survivorship of the late effects from treatments.  To get an appointment with him was the equivalent of winning the lottery.  I know of some other patients that see him, and knew that I was being cared for by the best, the leader, the example for survival care.  Through his leadership and mentorship, there are now many survivor clinics accross the United States, and the knowledge is now spreading across the world.  Survivors of cancer were not only being recognized, being represented, but being cared for.

Today, there are protocols for new patients when they reach the end of their treatments.  The medicines and procedures are less invasive, less toxic, and result in less severe side effects, but to be honest, the risks do still exist.  That is why there is the Relay For Life and Stand Up 2 Cancer.  Better ways of diagnosing and treating cancer need to, and can still be found.  With the follow-up protocol, the chances for picking up a late developing side effect, or secondary cancer, can now be found earlier and have the better success to survive, as if surviving cancer was not enough of a challenge.

My first trip to Manahattan since high school was overwhelming enough let alone to walk into one of the greatest medical facilities in the world.  I was greeted by Nick, also known as the “Ambassador” who gave me the instructions I needed to locate Dr. O’s office.  It was there that I met Beth, a nurse practitioner who had spent a long time with the cancer survivor program.  We spent close to an hour going over my health history.  She offered me compassion, empathy, and care as it was obvious, an entire new world was collapsing all around me.  I thought I was only going to be talking about cardiac issues.  But there was so much more.

Eventually, Dr. O came in and spent another hour with me, this time explaining all the things that had been discovered about cancer survivors like me, what had been done to me, and what would need to be done to care for me.  As he put it, “I want to make sure that your grandchildren get to know the great man you are and what you have been through.”  Okay, I was not really thinking about grandparenthood at 42, but I like his long term thinking.  Together we came up with a plan including retrieving my old records to find out exactly what I had been exposed to, and compare what they now know as far as what to look for in late developing side effects.  These are all things that are done now with current patients.

Nearly five years later, comparisons can now be made for me that show the progression of any of the side effects as there were no basline studies done on me 23 years ago.  I have a complete understanding of what my survival has meant to me, but also what it means to others, my family, my friends, and other survivors.  There are millions of us who have survived cancer.  Not all surivivors will develope side effects.  Not all survivors will know if what they may be dealing with may actually be attributed to their treatments.  That could be a good thing, take it from me.  It is a Pandora’s Box to know that more issues can occur, will occur, to know the increased risks at being proactive or letting things take their course.

This past week, it had been confirmed a symptom that I complained about two years ago, had returned, and why.  It is also suspected of causing a serious bout of “aspiration pneumonia” two months ago.  but this is just the beginning stages as further investigation will take place later this week to get an overall view from beginning to end, and then a new treatment plan will be determined as I continue to age towards grandparenthood.  Thankfully, because of Dr. O, and more than a dozen other caregivers that he has me deal with, I am going to get that chance.

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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