Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Politics”

What Is “Paul’s Heart” About?


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While I have always had an interest in writing, it has only been in recent years that I have really tried to direct that energy.  With the help of a volunteer peer writing program through Memorial Sloan Kettering, and with the help of a personal writing coach, my commitment to giving back or paying forward has reached world-wide opportunities.  I am approaching 20,000 views on this page alone, not including the “Paul’s Heart” Facebook page.  I have informed my writing coach that I still want to pursue writing a book based on “Paul’s Heart.”  So far, I have had 4 contributions to a book called “Visible Ink” (much like a “Chicken Soup for The Soul” books) written entirely by cancer patients and survivors.  I have been published in the MSKCC newsletter “Bridges” dealing with issues such as cancer survivor guilt and when is the right time to seek counseling to deal with cancer issues.  And I have given so many speeches about cancer and survival.  One of my biggest accomplishments so far is about to happen, and I will go more into detail in the coming weeks.  Believe me, it is very hard to keep this one secret because I am very proud of this project.

So as I begin the next quarter of my life, I want “Paul’s Heart” to grow even more, and reach more people.  “Paul’s Heart” covers a lot of topics with the main concentration on cancer and single parenting, but also so much more.

adoption

I have two daughters that I adopted from China.  I am a strong advocate for adoption, both domestic and internationally.  When I write about adoption issues, it is more than just about the process, but also issues related to “growing up” adopted, legislation, and how to come to the decision to adopt.

pets

I love animals.  I love taking care of them.  I love playing with everyone else’s pets.  I have owned pets my entire life with the exception of the past two years, as even now, I still struggle with the grief of the loss of my beloved Golden Retriever Pollo.  I often share fun stories of the pets I have had, or happen to see, as well as discussions about Puppy Mills, animal welfare and care, and of course, dealing with loss.

bullying

Having been a bully victim myself all through elementary and middle school, this is a topic that I take very seriously.  As a parent I joined a pilot effort aimed at preventing bullying in the schools.  I will share legislative efforts as well as other storied pertaining to bullying, and not just from the one being bullied, but also from the perspective of the bully as well (note – I have no experience in that role, other than what I have learned).

cancer

Cancer is what began “Paul’s Heart”.  I cover all topics from diagnosis to survival, physical and emotional needs, effects on family and friends, employment, discrimination, money, reproduction, side effects and more.  Cancer has devastated my family from not only my own diagnosis, but the loss of my father, sister, two grandmothers, and a grandfather.  But one thing I want to stress, I am not a doctor, so you will never see medical advice being offered.  I have been counseling cancer patients for 25 years and not once have I ever given medical advice.  I believe in the power of information, and the more information you can have at your fingertips, the better.

education

I have always been interested in education, and having two small children in school only made my commitment to education even stronger.  So much so, that I spent four years pursuing a position on our local school board where I learned so much more about the education process.

family and friends

This topic is pretty much self explanatory and can pretty much cross over to the other topics I cover.

food

I do not write often about food except to maybe occasionally mock myself for my finicky habits.  And given my many health issues you would think I would pay a little more attention to detail of healthy eating.  So just as my efforts on improving my eating habits continue, so do my efforts in publishing posts on this topic as well.

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Cardiac advocacy is something else I am very strong about.  While my cardiac issues are related to my cancer history, how to deal with cardiac issues does not discriminate why.  Again, I am not a doctor so I will not give any medical advice but I will give you as much information or at least guide you to where to find other information.

inspire

“Paul’s Heart” is about inspiration.  I like to share not only my experiences, but those of others who have faced such difficult times.  I do not want to mislead you with a panacea.  Many of the issues I write about on “Paul’s Heart” are quite serious, so many may come across as not being very positive, and I do not attempt to cover those up.  Last year, I shared the story of Stephanie and her extraordinary battle with Hodgkin’s Lymphoma.  I cannot wait to give you her current update of just how far she has come.  That will hopefully come very soon.  I also shared Jeff’s story and his efforts to give back and pay forward in his cancer battle.  In a bitter irony, Jeff has since relapsed.  And then there was Michael, a young man who beat cancer, just to succumb to the side effect of one of the drugs to treat him.

But there are other stories that I plan to share with you, not just about cancer.  There will be stories about all the topics that I write about from adoption to animals to family.  As a follower, you are always welcome to share “Paul’s Heart” posts if you feel it will benefit someone, but you may also submit your own story.  “Paul’s Heart” is meant to reach many, with information to inspire and guide.

politics

There are two subjects that I generally stay away from, religion and politics.  It is not because I do not believe in religion, quite the contrary, I have a very strong faith, and it is mine.  And I do not believe it is my responsibility to cram my religion down the throat of anyone else, nor do I want it crammed down my throat.  Bottom line, I respect everyone’s right to have religion, or to not have it.

Politics…well, I do not like politics in general.  But if come across a legislative issue or effort that potentially has an impact on the subjects that I write about, then I will share them with you.

recreation

I like to have fun.  I love watching others have fun.  And because I cover a lot of intense topics, every now and then I will throw in a lighter story dealing with just fun.

side effects

This topic is one that I spend a lot of time covering because late side effects from my treatments have led to nearly all of the medical issues I deal with my health today.  But I am also concerned with side effects from prescription drugs, and the lack of any firm protocol to follow up certain drugs known to have a critical impact on particular organs of the body such as the heart.  Again, no medical advice, just information given.

divorce

I am in the middle of my second divorce.  I will never mention either ex-wife by name, nor as a rule will I discuss most events, decisions, rulings about my particular divorces.  And this is for the protection of my children as well as myself.  When I write about issues concerning divorce, stories for the most part will come from other examples unless I specifically state otherwise, and any similarity to my divorces is purely coincidental.

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The final thing you will see me share, are my single parenting thoughts and experiences.  I will not write from the single parent perspective of a parent that was a single parent from the beginning, but rather, as the children who came into the world with both parents, now having to share time, visits between both of their parents, or have sadly had to deal with the death of a parent.

So that is what “Paul’s Heart” is about.  As always, if you would like to contribute to “Paul’s Heart” with either a topic or question, please feel free to do so by writing me at pedelmanjr@yahoo.com and put “Paul’s Heart” in the subject.  Like I said, “Paul’s Heart” is about reaching out to as many in need as it can.  For someone like me who struggles with “survivor guilt”, this is one of the reasons I believe that I have survived all these years, in spite of all the health issues I have dealt with.  I want to make a difference.  I want to inspire.

 

A Simple Thank You Is Just Not Enough


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Thank you so much for the overwhelming support and kind words to my 25th Anniversary post.  I look forward to bringing you new stories in the next chapter of my life.  And yes, I have reset my “counter” to my new goal.

25 Years Today – March 3, 1990 to March 3, 2015


 

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While I may have believed that one day, I would hit my 25th anniversary of being cancer free, it is a completely different feeling to have finally reached that mark!  I normally downplay each anniversary as just having “did what I had to do,” because I believe in my heart, that as long as someone is still battling cancer, or worse, has lost their battle with cancer, I could not celebrate each year, just recognize it.

But today, I am going to celebrate.  As I look back on the second half of my life, literally the second half of my life was living with cancer in its various stages, there is just so much for me to appreciate today, in spite of other events in my life.

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In November of 1988  I was diagnosed with Hodgkin’s Lymphoma, or as my oncologist inappropriately put it, “if you are going to get a cancer, this is the one you want to have.”  I underwent multiple surgeries to diagnose and stage my Hodgkin’s, and was exposed to the most toxic of chemotherapy drugs and inhumane amounts of radiation therapy.  All that mattered to me, was that I would get to hear, “you are in remission.”  And on March 3, 1990, I heard much better than that.

from the words of my oncology nurse, Brenda:

“We are almost done Paul.  Now when I pull the catheter out for the last time, I want you to look down that hall, close your eyes, and imagine a huge band playing in your honor as you walk down that hall.  You did it.  You beat cancer.”  I will never forget hearing those words from her.  Even as I write this now, an enormous wave of emotions is coming over me.

But just as I did not go through my cancer journey on my own, neither did I go through my cancer survival alone either.

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My desire to have a family was one thing that drove my will to survive.  And in 2004 and 2006, those dreams became a reality.  The adoptions of my two daughters, Madison and Emmalie would have a major impact on the rest of my life, because now I was not just surviving for myself, but for them as well.  I wish they could be with me on this great day because there was a time, that I could have given up, and I did not give up, because of them.   I love both of you so much, and I miss you so much.

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And there are so many other events and people that I owe my survivorship to.

One of the biggest things that I have witnessed in 25 years is progress.  Progress has been made in diagnostic techniques, treatments, and follow-up protocols.  Gone are procedures such as the lymphangiogram and the laparotomy (you will have to look them up to see how much “fun” they were to go through, or look for it on “Paul’s Heart”).  Patients are no longer being exposed to the toxic drugs that I was given or exposed to the levels of radiation that amounts to four times the lifetime exposure.  More importantly, the follow up care and protocols have improved because cancer survivors like me and so many others, are living much, much longer.

25 years

I had amazing care from my oncology nurse, Brenda, and my radiation tech, Noreen.  Of course there were the oncologists who “helped me make the right decisions” when I questioned everything they wanted to do.  I had two wonderful counselors in Ilona and John who helped me get through all the stages of my grief from having had cancer.

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And then there are those who have been responsible for my medical care as a survivor, for all the late developing side effects that science did not anticipate back then, because on average, cancer survivors were not expected to live long enough to develop those side effects.  But between my family physician, Dr. J, and each and every doctor that I see up at Memorial Sloan Kettering Cancer Center, I would not be here right now if it were not for your skills, your knowledge, and your support.  From the words of Dr. O when I first met him back in 2008, “I am going to make sure that you get to be a grandparent.”  I see so many different specialists at MSKCC covering nearly every system of my body to make sure that I continue to manage the various issues with my body.

My biological family played a major role as well from day one to year 25.  From visits to hospitals to “hey, is there anything I can do?”, I was probably a difficult patient to them, expressing my independence any chance I got.  And my friends, over twenty-five years, I have had so many.  Your sincere caring was appreciated each and every moment, no matter what stage of my survival, I know you have always been there for me.

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What would you say if I told you that I know as many people who have survived not only Hodgkin’s, but other cancers longer than I have?  I know what I would say.  I look up to you, and have my sights set on so many more anniversaries.  Were it not for all of you, I would never have found the care that I needed to survive in my later years.  And it began with a woman named Linda Zame.  You were the one who showed me from documenting to dealing my various health issues.  And for the sake of not forgetting any names and hurting any feelings, I cannot even begin to mention you all by name.  But yes, I know someone who has survived Hodgkin’s for over sixty years!!!  You all have been an inspiration to keep fighting and the support that we all offer each other cannot be compared.

And perhaps the toughest part of my survival, saying good-bye to so many.  There are so many that I wish could be here to celebrate today with me, and sadly are not.

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My grandmother was the first to teach me how to deal with cancer.  A breast cancer survivor herself, she taught me to get through each day, one day at a time.

And when it comes to why I survived all these years, I just wanted to make my survival make a difference.  I began counseling cancer patients as soon as I was done with treatments, and continue to do so today.  And with all the other cancer patients that I have met over the years, there was one patient who gave me reason to accept my survivorship… my dad.

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When he was told that he was going to die from lung cancer, the doctors asked him what they could do for him.  And my dad responded, “I want to be a survivor like my son.”  Dad, I may have lost you to cancer, but you were a survivor of cancer to me and you always will be.

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And Michael, you and I had a big plan together.  We were supposed to write a book together about our journey through cancer from a “then and now” perspective.  You were one of the toughest cancer patients I have ever known and I was glad to meet you finally.  But as you fell ill, your family turned to me for support, and I felt as if I were fighting for more than just someone I knew.  I wish you could have had twenty-five years with me.  But in your loss, I have gained so much more than I could ever have hoped in one of the most emotionally supportive people I have ever met, your mom.  Of all the things that tie you and I together, it is the friendship and emotional support that has grown with your mother.

But after today, I will probably go back to “recognizing my anniversaries” because there is so much to be done.  I want to celebrate when everyone survives cancers, and treatments are less toxic and have less side effects.  I want to witness so many more reading this, saying they have approached 25 years, OR MORE!!!

And to everyone reading and following “Paul’s Heart,” thank you for your support and your encouragement.  And for those following me in remission, this is for you…

“As I go down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.  And if you are not in remission yet, hurry up.  I am waiting for you.

With all the love in my heart, thank you.

Paul Edelman

25 TBD

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