Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

15 Apr 2013
3 Comments

5 Year Countdown April 15, 2008-2013


This story is a summary of my experience with having to have emergency heart surgery, and the recovery.  The next three days will recount in clear detail, the same three days 5 years ago.  Coincidentally, both my father and I have severe doctor appointments that day.

CABbaGe – Not Just A Green Leafy Vegetable

I have never been a vegetable eater.  I will eat carrots and corn, but when it comes to anything green, not a chance.  So, ears of those who know me, perk up when they hear me proclaim how grateful I am for having “cabbage”.  As I don’t normally wear v-neck collars, just to look at me, one would never suspect that I am a survivor of heart bypass surgery, Coronary Artery Bypass Graft, or simply, CABG.

          Twenty years earlier, my body and soul had already been through a life-threatening battle with cancer, Hodgkin’s Disease.  It may be arrogance to have assumed that I should never be put through something traumatic again.  I had done my time.  I had already proven that “it can happen to me”.  I should have been safe being able to say “it will never happen to me – again”.  In true déjà vu fashion, from start to finish, I now faced another challenge.  But the difference this time, time was not on my side.  Time was clearly against me.

There I was, 42 years old and trying to stay, rather, get into shape.  I was slightly overweight (translation – really overweight), and not very active.  But for four months, I had been spending close to two hours a day, five days a week at the gym, and making great progress.  But for those four months, I also had developed a symptom that I had ignored, not just at the gym, but everywhere else that I was exerting physical stress on my body.  It was a tightness across my chest which lasted only several seconds into my workout.  I was not worried as it was not excruciating pain as described by people who have had heart attacks.

I spoke to my family doctor of twenty years. She made comments of my cancer history, and current physical being, but made the suggestion to undergo a nuclear stress test with a cardiologist just for giggles.  Of course, just as in my Hodgkin’s past, I was not putting two and two together.  Though I knew what a cardiologist was, I did not realize that was the direction she was sending me in.  At age 22, I had no idea what an oncologist was either.

I arrived at the cardiologist’s office, naïve, dressed in shorts, sneakers and having all kinds of wires attached to me.  A dye was injected into me, and the tech took the first set of pictures.  No big deal.  No bells and whistles went off.  Then the tech showed me to the treadmill.  While I did not anticipate a marathon on the mechanical track, I did expect to go longer than three minutes.  The test had been stopped as something appeared on the EKG.  But still, I did not suspect anything.  One more set of pictures, then it was back to the waiting room.

Then I watched people leave who came in after me.  I had done that drill twenty years before when I was diagnosed with my Hodgkin’s so I now knew something was going to be wrong.  I met the cardiologist who drew the short straw getting me for a patient.  He was young and had a nice bedside manner, and confidence.  He was certain that I had a blockage, and he wanted me to check in next door to the hospital for catheterization the next day.  I would be good as new with a stint and back to my grind within a week.

For the second time in my life, I would face Elsabeth Kubler-Ross’s stages of grief (denial, anger, bargaining, depression, and acceptance).  Unlike with my cancer diagnosis, I skipped right past the denial and anger.  “Doc, look, I’ve got some things I need to take care contractually with some clients.  I’ll get back to you in a few weeks when things slow down.  I’m disc jockeying a wedding this weekend and have two gigs the following weekend.”  His response?  “Mr. Edelman, perhaps you don’t understand, I don’t want you even going home.”  The bargaining kicked into high gear.  “Look, I need to go home, and explain this stuff to my wife and make sure that she knows everything she is going to have to take care of with the kids and the house, and everything else.”  Dr. S. said, “Okay, fine.  But I don’t want you to do anything other than go home and rest.”  Then I backstepped into the denial.  “So I can’t even mow my lawn which needs to be done?  Mowing is relaxing to me.”  You can finish that conversation with what you think he might have said after that.  Let’s just say in kind words, my intelligence had been questioned.

The next morning, my wife drove me to the hospital.  As I came out of the anesthesia, there was Dr. S along with my wife, and a co-worker who stopped by just to visit.  “Our attempt to stint was unsuccessful.  It seems that some of the therapies that were used to treat your husband’s Hodgkin’s, over time have caused some severe damage to his cardiac system.  Your husband has been set up for emergency bypass surgery first thing in the morning.  He has three blockages but of the most concern is the left anterior descending artery which is 90% blocked.”  I do not recall my wife’s reaction but she told me of her knees buckling under her while I lay coming out of the anesthesia babbling “bypass… okay… bye bye… bypass… see ya in the morning…cool… bye bye bypass.”  But I will never forget my co-worker’s words.  As an EMT, she immediately knew what was happening and commented, “Oh my God, it’s a widowmaker.”  To which Dr. S responded, “simply put, yes.”  Blood was being restricted to my heart 90%.  It was not a question of “if” I would drop dead from a fatal heart attack, but “when.”  Dr. S. called me an “extremely lucky man” that I actually prevented my heart attack from occurring.  Okay Doc, you got my attention.  On to acceptance.  The easy part about that, was that I had less than twelve hours to worry and be frightened.  However I was still coming out of the anesthesia, and then for the next many hours, underwent many pre-surgical tests.  I did not have a lot of time to think about what was happening to me.

And so, the next morning, I would have my first experience with “cabbage”, CABG.  There are a lot more details to this event.  But the long story short, I now owe my life to something that sounds so similar to something that I have avoided my whole life, cabbage.  And no, I still do not eat it.

Posted in Cancer, Inspired By..., Side Effects, The Heart
03 Apr 2013
4 Comments

Relay For Life


My Story

“Hodgkin’s Disease is a rare, but very curable form of cancer that often affects younger people.”

I’m sorry.  I did exactly to you what my first oncologist did to me.  Without a scan, without an exam, without an introduction, my entire future was laid out to me.  How rude!  Here is how I would have liked both then and now to have taken place instead.

Good afternoon, my name is Paul Edelman.

It was November of 1988.  I had a lump in my neck just above my shoulder, that had been misdiagnosed as the common cold.  A biopsy revealed that I had lymphoma, Hodgkin Lymphoma.  Over the next two months and several obsolete  and barbaric procedures:  bone marrow biopsy, lymphangiogram, and a laparotomy, I was staged at 3b.  I went through 30 treatments of radiation exposed to  4 times the lifetime maximum of radiation and 8 months of a chemo cocktail which included a drug used in wars and by dictators meant to inflict harm on thousands of people.  But used for the good, I have been cancer free for over 23 years.

One stereotypical image that I had of cancer patients undergoing chemotherapy patients were severely emaciated, malnourished appearing people.  Strangely, this was not my experience.  Quite the contrary, I experienced what many of us refer to as “pumpkin face.”  Instead of losing weight, due to the high dose prednisone in my chemotherapy cocktail, I actually gained over fifty pounds.  This was made possible by an out-of-control appetite.

There had been a long term plan once I completed my treatments.  A follow-up schedule had been determined all the way up to my five year anniversary – every three months for the first year, four months for the next two years, then six months up to the fifth year, after which, I would be seen annually.

In the short term, I needed and wanted to get back into a similar physical condition prior to my cancer diagnosis, which meant dropping my chemo weight.  I worked hard exercising and dieting, and lost the fifty pounds that I had gained, and a few extra.

My long term plan went as scheduled also, taking the five full years to achieve annual follow-up visits.  But due to a simple office move, my status as a patient changed.  While ultimately, it was my responsibility to make sure that I continued my follow-up care, I laid all accountability on my oncologist who appeared to not remember my annual check-up, which I was okay with.  For the first time in seven years, I finally had a life again, without cancer.  After all, that is all we want from the time we are diagnosed.

Thirteen additional years would go by before my lapse in judgment would become apparent in a harsh way.

A rare complaint from me to my primary care physician, and my physical status would change from hopeful Adonis to Starship Enterprise “Red Alert.”  I was about to have a fatal heart attack at any moment.  The only thing that was more surprising for a seemingly healthy 40-year-old needing an emergency bypass, was the cause.

The very treatments that saved my life from cancer, over time, had damaged the main vessel to my heart.  Further testing would reveal even more damage, to other parts of my body.  You see, even as little back as the early 1990’s, survival of cancer patients was still based on five years.  There was no firm protocol to follow up on us after that time.

There was never a doubt that I would beat cancer.  But not once, did I ever think that I would see the day, that I would stand in front of so many inspirational people, patients, caregivers and survivors.  And while I am humbled by you, I am more than excited to tell you, that there are millions of cancer survivors, all over the world.  I have met many of those survivors.  From Johanasburg, Africa, to England, Canada, France, California, Pennslvania, and the Lehigh Valley, one year survivors, five year survivors, twenty year survivors, and yes, I have met a sixty year survivor, we exist.  We may not be celebrities or professional athletes, popular musicians who have never-ending media coverage, but we have something much more powerful… opportunities with events such as The Relay For Life, Light The Night, Race For The Cure, and so many more allow us to see with our own eyes, hear with our own ears, and believe with our whole hearts that we can not only survive cancer, but perhaps in our lifetime, actually prevent cancer.

A lot has happened in the more than two decades of my survival, historically as well as personally.  I ended up having a career working in the same field that saved my life, medical research.  I was engaged during my diagnosis, married during my treatment, divorced years later, dated, and married again.  I have two beautiful little girls that we adopted from China.

To be honest, it was not easy.  There was not a lot of knowledge back then about what could happen as a result of my treatments.  But through research funded through events such as this, the risk of late developing side effects to the heart, the lungs, muscles and several other areas of my body are much less likely today.  Just two decades ago, the knowledge, expectation, and publicity of long term survivors was not well known.  Today, there are not only less toxic treatments with lesser side effects, short term or long term, but better survival rates due to more strict follow up guidelines.  Major cancer facilities now not only treat cancer patients, but also treat survivors.  An important need given a lot of attention is the emotional toll of survivorship.  Whether dealing with the discovery of a late developing side effect or the struggles of survival guilt,  there are now resources available world wide.  There is help for the survivor who wrestles daily with the emotions of why someone dies from cancer, while I live, why some face multiple relapses and I faced only one chapter.  Cancer survivors are no longer seen as hypochondriacs with mysterious ailments because someone in their early forties, physically fit, extremely active, should not be experiencing shortness of breath and tightening of the chest, especially when he looks healthy.  Therefore, the critical tests might not have gotten done.

At the time of my twentieth anniversary of the completion of my treatments, I corrected something that I should have addressed twenty years earlier, realizing that I had not done so.  In the emotions of completing my treatments, in the race to run away from that oncology office and never look back, I forgot to do one important thing.  Sure my oncologists, my faith, and the support of my family had a lot to do with my success, but the unsung heroes of my story and many others, more likely than not, do not often get the appreciation or the recognition or hear the success of their efforts.  And so I set out to find Brenda, Noreen, and Ilona, my nurse, technician, and counselor during my battle with Hodgkin Lymphoma.  Unfortunately, one had passed away, from the cruelest of ironies, cancer.  But I did find Brenda, my oncology nurse, and Noreen, my radiation technologist still working in the field that saved my life, still doing what they did best, caring for cancer patients.  I gave them each a hug, we share stories and tears, and most importantly, I thanked them.  I thanked them for caring for me and caring about me.

These are some things that were invented or discovered in the last twenty years:  seedless watermelon, anti-lock brakes, the digital camera, the English Chunnel, the Mosaic web browser,   the protese inhibitor to stop the growth of the AIDS virus, the plasma TV,  stem cell research, the portable defibrulator, Tivo, Wifi, the Xbox, the Genome Sequencer to make diagnostics quicker and more accurate,  Google maps, and of course, the I phone,

In just 20 years since my treatments, survival rates for many cancers have increased:  ALL 94%, Hodgkin’s 95%, Non-hodgkins 80%, Retinablastoma 95%, Neuroblastoma, 75%, Wilm’s Tumor95%, Osteosarcoma, 70%, Medullablastoma 85%,  Prostate 98-100%, early stage breast cancer 88%.

A lot has happened in more than 23 years.  My grandmother, my cancer role model who battled and beat and breast cancer fifteen years, faced cancer a second time.  Of course, there is my own history.  And most recently, just weeks ago, my father was informed that he has lung cancer.  And at the age of 70, I can hear only one thing in his voice, he will survive.  He was born and grew up in the time when cancer killed everyone, when cancer was contagious, when cancer carried a stigma.  But he won’t survive because of statistics, he will survive because he has seen it with his own eyes.  When I share my stories, I will tell everyone of all of the people that I have seen and have beaten cancer, and many, living long lives.  And for those of you looking for someone who has survived a long time, here I am.  And yes, I am still followed up, by one of the top doctors in the country who was a pioneer in studying Hodgkin Lymphoma and late treatment effects.  And just as younger physicians today have been taught, it is much easier to deal with any of the late effects that I have experienced, when caught early enough.  And today, with less toxic and more effective treatments, and knowledge of side effects to look for in the long term, doctors, technicians, nurses, and therapists can now take care of you before it is too late.  And you are followed-up from the final treatment through the rest of your life.  As much as all we ever want, is to be rid of cancer, to never hear it mentioned in our life ever again, post-care is critical and medicine today knows this.

I would like to close with a signature line that I often use in emails and posts when congratulating survivors on milestone anniversaries, welcoming patients into Club Remission, or encouraging patients that their cure can happen.  “As I travel 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’re still fighting your cancer, I’ll drive 55 so you can catch up to me.”

Thank you so much for this opportunity to share my story with you.  I wish you good health and longevity, and most of all, on behalf of all cancer patients, caregivers, and survivors, thank you for all of your support and efforts.

Posted in Adoption, Cancer, Education, Family and Friends, Side Effects, The Heart
25 Mar 2013
2 Comments

Madison’s Top Ten


 

The first half of my oldest daughter’s childhood will be gone.  She has turned ten which I expect to bring in all kinds of changes to deal with the second half of her childhood term, the teenage years.  My mind often switches to memories of Madison, as many of her homework assignments often have to do with places she has visited, things that she has done.  There are things that stand out in my mind and take no time to recall.  They are Madison’s Top Ten memories.

1.  “Family #7!!”

This is what our guide in China yelled out as the caregivers who had escorted our soon-to-be children, began said goodbye to the babies they had taken care of until this great day.  There were ten of us families, and we were number “seven”.  All of us were strangers when we left Newark, New Jersey and in an instant, we all became family, sharing a special moment that will last forever.  We becamse what many in the adoption community call a “Forever Family.”

Madison had been dressed in three layers of clothing, sweating profusely inside.  She was approaching a year of age so she had some teeth, her four front teeth which allowed her to place her fingers around the teeth and create the perfect seal while sucking her thumb and finger.  She did not cry often, and when she did, it was for food.  Cheerios made her very happy.

2.  Wildwood, New Jersey

While every child loves the beach as well as the ocean, Madison associates the beach with something else, amusement piers.  We have several dozen pictures of Madison riding different carousels all over the country which by her third birthday, meant different rides.  And by her sixth birthday, kiddie rides just were not cutting it.

Unfortunately, I do not recall the name of it, but Madison had gone on her first “adult” level roller coaster at age seven.  The coaster was one of those momentum driven rides filled with hills and fast, winding curves.  It was not a large coast like you would see at a Six Flags park or Disney, but it was not a miniature coaster either.  Her smile had smoke coming from it and she rode the ride three more times before we headed home.

3.  “Do Not Cross This Point”

One of my roles as a parent, is to teach my children to follow rules.  After all, rules exist for a reason right?  But what happens when your daughter just looks up at you with the “Daddy you will make me the happiest daughter in the whole wide world”-eyes, and is asking you to be a non-conformist, which I do not have a problem with anyway.

And so, while visiting Seattle, Washington a few years ago, we went sight seeing to Snoqualmie Falls (not sure of the spelling).  It took quite a hike to get to, but the view from the platform was breathtaking.  Madison imagined out loud what it would have looked like up close.  Of course, I tried to explain to her that the warning sign “Do Not Cross This Point” was there for a reason, as in “the dam could be released at any time, the water could rise at any time, the rocks were difficult to climb, etc.” but Madison would have nothing of it.  Once she saw the throngs of people disobeying the warning, including with children, there was no convincing her that we could not go.

We dropped down from the platform and began our hike across the rock bed, and just a coupld of hundred feet, there were were at the bottom of the falls.  It was fantastic.  It was also a sign of things to come that Madison was going to be an adventuresome little girl.

4.  Madison’s Husband

I know.  Madison is only ten, but she has evidently been married for at least three years.  I am not sure if the boy knew it or not, but he did by the end of his birthday party.  His party was being held at his karate class studio by his instructor.  The Sensei (teacher) was quite good at handling the throngs of six and seven year olds, much better than I could.  Now the boy is quite a character, a bit on the goofy side, but what he did next would play right into Madison’s reaction.

Sensei was trying to teach a particular move.  It involved striking the boy (not physically), but the boy decided to take a dive anyway for emphasis.  To which Madison jumped up from her spot on the mat screaming “don’t you hurt my husband!”  All at once, the entire studio got silent as Madison attacked Sensei’s leg with a ferocity.  I do not know who was in more shock, me discovering that I had a son-in-law already or the second-degree blackbelt who clearly was not ready for this particular attack.  Three years later, they are still “married”.

5.  Madison The Headbanger (Part 1)

It is a longer story that I will cover in another blog, but Madison has always loved music.  She loves to sing it, play it, dance to it.  The first song that she ever heard back on United States soil that I can recall is ACDC’s “Back In Black.”  I have a wide variety of taste in music, and in general, just keep my Ipod on “shuffle”.  So you never know what you are going to hear.  But the ACDC song had just come on, and at that particular moment, I had looked back through the rear view mirror, and there I saw it.  Madison “head banging” to the beat of the song.  It was a beautiful moment.  There would be plenty of other memorable music moments, such as the first song she ever sang – “Since You’ve Been Gone” from Kelly Clarkson at the age of fifteen months.  We couldn’t understand the words that she was singing, but she got the chorus spot on!

Her knack for picking up music by ear has been remarkable.  So remarkable that she can usually pick up the music notes by the middle of the song.  And if there is a catchy lyric…  She got a lot of attention at the age of four when she began to sing “Girlfriend” by Avril Lavigne which of course drops a couple of bad word bombs at daycare.  Fortunately, she was singing the edited version of the song.

6.  Madison The Headbanger (Part 2) and These Are Real Tears (Part 1)

As parents, Wendy and I have done a pretty good job differentiating our girls’ cries, between the “this really hurts” and “I want attention”.  Madison is quite a tough little girl when it comes to crying.

But as she began to realize that there was an entire world waiting for her once she became vertical, it was not soon after that she also learned that she needed to learn about depth perception and height.  Her first and most difficult lesson came as she got stuck under our kitchen table.  I say “stuck” because instead of crawling out from under it, she was determined to walk out.   And with that, came the first thud.  We now realized how much Madison had grown in the year or so that she has been with us.  But there was no cry, so we left her to discovering her world.  Not worried, here came the second thud.

Okay, clearly she was determined, and Wendy and I just looked at each other.  “You don’t think…” and just like that, came the third thud.  Still no cry, she finally appeared out from under the table, but on her two legs, ducking under the edge of the table.  There were tears, but not from pain as she was not holding her head.  They were tears of frustration as she wanted to accomplish this goal on her own, and was having a hard time.  If there is one thing that I will say about Madison to this day, she is a determined little girl.

7.  These Are Real Tears (Part 2)

We are sitting at the dinner table one evening a couple of years ago, when Madison decides that she would like me to consider buying a reptile for her, in particular, an iguana.  Now I already maintained in our house, all at one time a dog, three cats, two guinea pigs, and two frogs which as far as I was concerned was more than my maximum that I had desired in my house, let alone, my lack of appreciation for reptiles.

So it was only natural, as I am known to do, I responded “no”.  Sensing it was the “iguana thing”, Madison turned on her bargaining powers and decided to rattle off all kinds of other reptiles as if that was the issue.  My answer was still “no”.  Realizing that I was firm on this, Madison decided to show her manipulation hand way too early in her life by proceeding further with this argument.  First came the frustration.  Next came the anger.  Then came the sadness and it was not just sadness, but it was accompanied with tears.

I looked over at Wendy who under normal circumstances would have caved long ago, worried that she would do so now.  I was trying to telepathically send her signals “be strong, do not cave”, and just then it happened.  Madison burst out laughing with the tears pouring out of her.  I let her know just how good her skills were at trying to mold her parents which is when she warned me, “you think that’s all I can do?’

8.  Attention To Detail

We had just gotten done vaccuuming the carpet when Madison had found some little particle in the carpet that had not been picked up.  It was the backing of one of Wendy’s earrings.  This is just one example of Madison’s sharp eyesight.  But when it comes to things that interest her, she has amazing recall to details, such as certain areas that we have visited, specific exhibits, even vacation memories.  Now if only we could get her to remember where her sneakers are.

9.  Snow White Has Nothing On Madison

Madison will save every living creature if she has it within her ability.  It is one thing for your child to bring home a stray animal, or yell “watch out” as you swerve and total your car to avoid a squirrel lollygagging across the street, but Madison has such love and respect for all living creatures that even those lacking intelligence can count on her, repeatedly.  Such as the bugs that keep falling into our pool.  She scoops them back out, puts them down on the ground, and then back in they go.

10.  Daddy’s Little Girl

The moment when I realized that Madison was one of the most caring little girls, was when I had to have my heart surgery.  It had been three days since Madison had last seen me, the first time ever that we had been apart from each other.  Wendy walked her into the hospital room, where I was still connected to all kinds of tubes and wires and a huge white patch covering my chest.  She gently climbed up on my bed, said she missed me, that she loved me.  She only asked a few questions about what had happened, and then asked if she could watch my television.

Madison, you are so special to me.  I love you always.

Daddy

Posted in Adoption, Cancer, Education, Family and Friends, Recreation, Side Effects, The Heart

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