Paul's Heart

Life As A Dad, And A Survivor

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.

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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

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How Much To Tell A Child


Besides the actual diagnosis, one of the hardest things to face for a parent going through cancer, is what to tell, and how much to tell a child.  And by that definition, I do not mean an adult child of a cancer patient, but rather a child, not necessarily even a teenager.  There is all kinds of literature out today with opinions on how to handle these situations.  Honestly, I have not read one yet.  I have my own perspective, and for me, my way has worked best.

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This photo was taken back in April of 2008, about a week after I came home from my open heart surgery.  I did not have children when I went through my cancer diagnosis, but I was going to have to deal with my children with this particular episode.

From the time that the emergency was discovered, I had very little time to get my affairs in order.  I was going to be facing life saving surgery, but surgery that came with huge risks.  My body is not like the average patient, even undergoing this type of surgery because of the late side effects that had developed with my body since the days I was treated for Hodgkin’s Lymphoma.  So there were going to be huge risks involved, and surviving the surgery was not necessarily a sure thing.

But was a sure thing, my own personal outlook.  I was going to get through this, just as I did my cancer battle.  I was not going to settle for anything less especially now, because I had two small children who were counting on me coming home from the hospital.  For he first time, my children would learn just how sick I once was, and was again.

My daughters always knew I had cancer, but unlike when I grew up, hearing about someone having cancer, meant that the person automatically died, they learned at a young age, the very first person they ever knew to have cancer, had beaten it.  And throughout their lives, they speak proudly of their “dad beating cancer.”  To be honest, I am glad I never had to deal with the side effects from the chemo in front of them.  But I do recall what it was like.  And I am certain, that I would have been able to maintain my “let kids be kids” attitude remain, and simply explain to them that “daddy does have cancer”, but in dealing with nausea and baldness and fatigue, I would explain to them that it was all a normal part of the process, and necessary for me to get better.

But the heart surgery was going to be different.  I have explained to their mother that under no circumstances did I want the girls to see me hooked up to all kinds of machines with tubes coming out of me al over the place.  I had no idea that I was going to be facing open heart surgery just two days after I told my daughters that I would just be spending the night at the hospital.  Again, I had no doubt that I was going to get through this for them.

Day four of the hospital stay, their mother brought them into the hospital.  Most of my tubes were all out now, and the girls wanted to see me very badly, and I wanted to see them.  Their mother prepared them that my chest was going to be very delicate until it healed and they were both fantastic with being careful with me.

Today, I still do not think they get just how serious it was for me back in 2008, but because I did not overburden them with “adult” facts, given them just enough child-level bits of info, they were better able to deal with my health crisis.

And that is why, to this day, I will always believe in letting my children be children.  I do not discuss any aspect of my divorces with my daughters.  They know my father died from lung cancer, and they got to see him a couple of times before he passed, but they do not know his gruesome final days.  They will not know the struggles that I am dealing with right now.  Because just as I handled my cancer, my heart surgery, this is just another time in my life, that I have a tough battle, that I need to get through and overcome.  I did not come this far in my life to give up now.

A Driving Test Flashback


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I am sitting here watching “Alexander And The Horrible, Terrible, Very Bad Day” (not really the inspirational movie I should be watching, but since it is a comedy, and I really needed the laugh and actually see someone having it worse than me to appreciate what I am dealing with and nothing more).

Anyway, there is a part of the movie, where the teenage boy is going for his driving license test.  And of course, adjusted for 21st century issues, such as having a cell phone in the car, it was the very beginning of the actual driving test for the teen that caused me to remember an incident that I witnessed decades ago while going for my driver’s license.

I believe it is a law everywhere, that a driver in training must always be accompanied by a licensed driver.  And evidently it depended on the instructor supervising the exam how literal this requirement would be.  But in front of me, was a fellow teenager, whose mother had gotten out of the vehicle to allow the instructor to get into the car at the entrance to the driving test course.  Seemed like the polite thing to do.

Up ahead from the vehicle, approximately 50 feet, was the instructor, seemingly pleasant, who with a simple gesture, a wave of her hand for the inexperienced driver (inexperienced in the art of being literal as well), motioned for the teenager to pull the car forward for the instructor to get into the vehicle.

Yep.  The instructor failed the teenager for driving without a licensed driver.  Perhaps the instructor was having a really horrible, terrible, very bad day herself, or maybe just was a really mean person.  But as my mother had already gotten out of my vehicle, just as the mother in front of us, I  could not motion quickly enough for my mother to get back into my car.

Spoiler alert, of course, just as the movie portrayed, the teen driver suffered all kinds of issues during his exam.  But for those have seen the movie, here are some important tips if you will be having a teenage driver soon.

1.  NO DRIVING THE CAR WITHOUT A LICENSED DRIVER – even as a courtesy to the instructor

2.  Do not use the cell phone during the exam, actually ever should be the rule

3.  Of course, hands at 10 and 2 o’clock

I am sure there are more, but with my daughters four years or more away from driving, I will worry about that later.

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