Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

A Test You Cannot Cheat On


It is a pretty safe bet that anyone reading my posts has had to have a blood test done at some point of their lives.  Whether it be for marriage, an employment physical, medical follow-up, whatever the reason.  Some blood tests, you have to “fast,” not eat or drink for a period of certain hours.  This is to give a “clean” number reading, not affected by nutrients or ingredients in food such as caffeine or sugar.

So, we do just that.  Knowing that we have a blood test coming up, that is meant to measure sugar, or cholesterol, or something else affected by our diet, I can at least admit that I go overboard in the starvation of my body of the foods I enjoy, just to have the possible lowest number on that test.  And it usually works.  And as I hide nothing in my posts, immediately following the blood test, I go for a nice lunch of the very things I denied myself.  At that point, with the blood test done, my cheesesteak and fries will not affect my results.

The truth is, we all have a tendency to “cheat” on certain blood tests.  And it was a matter of time, before a blood test was created to prevent misleading numbers that do not reflect accurately the test being measured.

As I have been followed up for a long time with all the late side health effects I deal with, I get blood work done annually.  I get the usual things checked, like cholesterol, and of course sugar.  For as long as I can remember, I have had a test done called an “A1C” though never really paid attention to it.  I just watched the “sugar” and “triglycerides” because these were the things I always heard discussed.  Knowing that these were impacted by drinking sodas, eating candy bars, ice cream… you know… all the good stuff, I made sure to go easy on those things when I had these tests done.  But this A1C was always in the background, hovering around 5.7 to 5.9.  I had no idea what that meant until two years ago, when I was warned that with numbers like that, I was “pre-diabetic.”

Well, to me that just mean I was not diabetic, so really all I needed to do was just reduce my intake a little bit and I should be fine.

Last year, during my summer time with my daughters, I was unable to use my barbecue grille for a period of time.  I tried to use my oven to broil things, but it was just not the same.  And it would be too expensive to eat out every night.  So, while I waited for the grille to get repaired, we ate pasta.  A LOT OF PASTA.  Which of course most know, pasta is carbs, which turn to sugar.  It was two weeks before the grille was fixed.  At the end of the summer, I finally got around to my blood test (mainly because of my fear of needles I always drag the test as far as I can).

8.9

The A1C test measures your average blood sugar levels for the last 60-90 days, in particular, how much of your hemoglobin is covered in sugar.  That is right, unless you have been “cheating” for the last 60-90 days, the A1C is going to be the determining factor of being or pre-disposition to, diabetes.  As stated above the picture, my number was 8.9.

Of course, as soon as my doctor informed me that I was now being diagnosed with diabetes, out came the excuses… the grille, my daughters visiting…  The test measures 60-90 days average.  My daughters were with me for 49 days.  Fortunately I was not at the point where I need insulin (which I would never be able to afford), but my local grocery store sells a very affordable 90 days supply of the medicine I was prescribed to force my A1C down to a safe level, and get back to being “non-diabetic.”

I have other factors that play into a possible diabetic diagnosis, but the sugar was a definite.  But after a year on the medicine, my A1C is back down to “pre-diabetes” level, my weight is down.  Stress also plays a major role affecting the A1C as well.  And as a long term survivor of Hodgkin’s Lymphoma, exposed to an extreme amount of radiation for treatment therapy thirty years ago, radiation can impact the pancreas which can affect the production of insulin.  Great, just what I needed, yet another health issue from surviving my cancer.

Some of my fellow survivors are in the same situation as me.  There are those that had huge spikes in their A1C once they stopped taking their medicine, having to return to taking the medicine, or worse, taking insulin.  Since many of us have heart issues because of our treatments, we really do not need the complications of diabetes added to our lists.

A recent study by Springer states that there is a 16% increase in childhood cancer survivors who received radiation of 10Gy (units of radiation) to the pancreas.  To put that into perspective, myself, and many of my fellow survivors decades ago received nearly 4000Gy.

If you are currently a normally healthy person, just keep doing what you are doing, but keep an eye on your health.  Follow up annually.  Get your blood levels checked.  For me, and others, it is just another thing we have to add to our list.  Once diagnosed with diabetes, and I know many who are, the complications only get worse.  If you are lucky to be able to prevent diabetes, do it.

A Promise I Cannot Make


There are many events in a parent’s life, there is not training for, only “on the job” experience.  I recall telling the story recently to my daughters that prior to their adoption, I was confident that I was “ready” to be a Dad.  I mean really confident.  Changing diapers.  No problem.  First date.  Um… okay, thought about it, eventually was okay.  There would even come a time eventually, when my daughters would learn about my experience with cancer, many years before their birth, and the many medical crisis they would actually witness in their youth.  But it was one particular moment in the Emergency Room, that I found out, just how difficult it was going to be, to be a parent.

There was a small child in the room next to me.  I could tell it was a small child, because of her screams of terror.  She was obviously the patient.  I could not tell why she was there because her words never mentioned what was traumatizing her body to be in the emergency room.  She definitely did not want to be there.  The little girl wanted only one thing, and was depending on the one person she should have been able to count on to protect her.

“DADDY!!!  THEY’RE HURTING ME!!!!  MAKE THEM STOP!!!!  DADDY!!!

This went on for several minutes.  Probably a lifetime for not only the little girl, but as a future Dad myself, it hit me as all of a sudden, I now realized one of the aspects of being a father I was not prepared for, but a lifetime for the father of that little girl.  No parent EVER wants to hear their child scream in such anguish, pleading for comfort, all the while as a parent, all we can do is our best to assure our child, “it will be over soon.”

Luckily, the times that there have been medical emergencies for either of my daughters, the doctors were blessed with calmly demeanored or all-too-willing patients.  So having my role as support was locked up pretty good, providing a sense of security for them when it was needed.

If not dealing with their physical pain would be bad enough, emotional pain was something that would be felt some day, probably in the form of loss either in a relationship, divorce, or even death of a loved one.  Every parent always grapples with how to handle death with a child, because most likely, depending on the age of the child, that child will never really understand what has happened, or be able to comprehend the loss.

I can only think of two situations that my children were at funerals, one as toddlers for a distant relative, definitely having no clue what was going on, the other, a much closer relative, their uncle, who had passed away from ALS (Lou Gehrig’s Disease) just a couple years after this photo was taken.  Again, my daughters were fairly young at the time, and in the moment, they knew death was not a good thing, at the same time, not realizing it was also permanent.  They would never see their uncle again.

I make sure that my daughters know stories about my late brother-in-law.  He was a good man, a good friend, a good Dad.

My daughters are much older now, still youth, but now have a different reaction when it comes to death.

Yesterday, my daughters were notified by their mother, that someone close to us had passed away suddenly.  He was a family friend.  And also had a major connection to our family.  We both adopted our daughters (my youngest) together.  This was a bond with someone, that they have known their entire lives so far.  Of course, their thoughts are with his wife, and as importantly, their daughter, who just like their cousin of the uncle that passed away, no longer has her father.

Here is where it gets more complicated for my daughters.  If children are lucky, they never have to go through their days wondering about their parent’s mortality.  Hopefully Mom or Dad takes care of themselves, and other than an unexpected event, there is nothing to worry about.  My daughters do not have that chance.  They have witnessed three times, when my body challenged me too hard (not including my cancer), once being taken out of my house on an ambulance stretcher.  They know my health will always be challenged because of the treatments for Hodgkin’s Lymphoma thirty years ago.  And as hard as I try not to let my fear show, as hard as I try to get past my limitations, I cannot keep them from knowing that my body is not well.

This is why it is hard for them to understand what happened to our friend.  The cause of his passing is unknown at this time.  But the comments from my daughters was how well he was doing, and looked, a bit of a contrast from a time when he may not have been in the best of condition.  But they know something happened to him, to cause his passing.  Oh, and he was around the same age as me.  You can see where this conversation was going with my daughters, what their concerns are.

I know my daughters worry about me.  They know about the many health issues I have related to late effects from my treatments, and they know how serious they are.  They know how close they have been to losing me, several times.  I am lucky to have had the doctors and nurses that have cared for me, to get me through each event.  And I can assure my daughters that I am doing all I can to take as good care of myself, to increase my chances of a longer life.  Especially eating healthier when they visit me, something I need to learn to do on my own when they are not with me.  And I know my doctors are doing all they can to stay on top of things as they develop.

But my daughters know I cannot make that promise to them, that it will not happen to me.  And that is what scares them.

My daughters do not remember this time, when they learned “Daddy’s body” was no longer perfect.  I still have the heart pillow (pressed between my daughter’s head and my week old open heart surgery incision).  I still have my daughters.  And they still have me, something I know they do not take for granted.

Jessica, The Mermaid That Beat Cancer 4 Times


The one thing that someone battling cancer worries about just as much as beating cancer itself, is the chances of that cancer coming back.  But as many of us who were diagnosed and treated for Hodgkin’s Lymphoma decades ago, we were given an extra concern, courtesy of our treatments.  An increased risk of a second cancer.  Of course, we are all at risk of developing a cancer in our lifetime, and there are those why may develop more than one cancer.  What I am talking about is an increased risk.

I remember the conversation very clearly.  “Mr. Edelman, we just need you to understand that there is an increased risk of developing a secondary cancer, especially Leukemia.”  My doctor was even specific about that.  As I mentioned recently in my 30th anniversary series, I did develop new Hodgkin’s (actually never really determined if it was a relapse).  But I am lucky.  Though I have had my scares with skin cancer, and have spots on my lungs, and nodules on my thyroid, nothing has turned up cancerous yet.

Others have not been as lucky as me.  I know too many who have relapsed, once, twice, three times, or even more.  Each time I would hear their new course of treatment to try to knock out their cancer, again, once and for all, I often found myself shaking my head, wondering “why” and “how much more can they take?”

And then there are those who do develop the secondary cancers, or combinations of relapse and other cancers.  As I am always honored to do, I would like to share one of those stories with you, about one of my fellow Hodgkin’s Lymphoma survivors who has done just that.

Jessica is a 4-time cancer survivor.  That’s right.  A 4-time cancer survivor.  Diagnosed with Hodgkin’s Lymphoma at age 11, she is one of many that have a longer longevity than me.  Jessica has two main things in her life, her sons, and her love of water.  And it is her love of water that has her refer to herself as a mermaid.  She is an aquatics specialist for Duke Diet & Fitness Center and has recently kicked off her own water fitness project.

If you are looking for motivation, Jessica will give it to you.  We are talking about someone who has beaten cancer 4 times!  And not only that, as many Hodgkin’s Lymphoma patients are worried about having children because of sterility issues from the chemotherapy, she had two sons after her chemo.  Originally from New York, you can soon tell it is not just her motivational skills that she has, she is also very tough.

Jessica’s love of water, since childhood, is what often has her proclaim herself as a “mermaid.”  As she leads her fitness classes she is known to have themes.  Themes that have her dressed in appropriate swimwear for that particular class, like Rocky, Wonder Woman, or even Harry Potter.

But no matter what I can write about what she does, or what she has gone through, it is her own words that I want you to read, and be inspired by.  The following is by Jessica herself, and the website “Womenlite,” and an article on Jessica, in recognition of World Cancer Day.

Jessica

“I’ve approached most of my 45 years of life with the same competitive spirit I bring to the sport and passion I love; swimming.

I was 11 years old and racing with my local swim team, The Eastern Queens Blue Devils when I had my first awakening to the fragility of life. It was the same year that I was going through the awkward changes that accompany puberty and being an aloof pre-teen, I was also quite pretentious and downright obnoxious around other children. Cancer was about to humble me. While at one of my many swim meets I had found a lump in my right collarbone area. Not exhibiting any symptoms it was dismissed by my pediatrician as part of my body changing and left until a walk-in urgent care doctor noted it after I was treated for an ear infection and I was subsequently taken to a general surgeon.

I come from a family of athletic Italian hardheads. Stubborn, proud, loving but full of insecurities and at a time when Cancer had such a taboo stigma when the results came in that a tumor in my neck was Hodgkin’s lymphoma there was an immediate retreat into secrecy. No one should know. Of course, there was the worry that people would look at me and think negative thoughts ( I still carry this paranoia and sometimes find it hard to say the word CANCER) but also the fear that I would be treated differently. Since my cancer was early stage I was treated initially with 3900 cobalt rays of radiation to the mantle region (chest and neck area) as well as the abdominal area. I had a staging lap prior to this where I was cut from sternum to pelvic region and my spleen was removed. That surgery would forever change my body and abdominal wall and leave me with a long scar that is still apparent today 34 years later.

During that surgery, a part of the bone marrow was scooped off my left hip also leaving a marked difference in my side. The radiation caused oral issues in my mouth including sores and bleeding, scoliosis in my spine, burning on my skin and degenerated muscles in my neck ( called pencil neck syndrome). What it didn’t do is kill a tumor in my chest and I was diagnosed with a relapse 3 months after initial treatment. It’s a strange feeling to have the epiphany of your mortality at the age of 12. I reacted to my parents crying and talking about sending me to other doctors for experimental treatments like I was watching a tearjerker Hallmark movie. Was this me? Were they crying over the fact that they thought I was going to die?

I was taken to two well-known doctors at a Long Island hospital and I credit them with saving my life. Dr. Kochen and Dr. Weinblatt were a power team that had decided to treat me with high blast chemotherapy known as ABVD. As the meds were administered and the doctors shared how well they were knocking out a tumor in my chest, I was feeling like my body was being battered to the point of near death. Five-hour infusions every 2 weeks with hours of vomiting and not being able to pick my head up, the loss of all my hair and the pains in my bones and the gastrointestinal system made me feel like I was wasting away. And that’s how I appeared as well shrinking to 90 lbs with a wig on my head that looked like a coconut and trying to maintain some semblance of normalcy while still attending middle school and getting made fun of on a daily basis by children who are naive or sensitive to another child’s issues but would rather just see them aesthetically and enjoy targeting them in jest for their amusement.

I walked away from that second relapse with a cure. I was grateful, blessed and invigorated. I had my second chance and I wanted to LIVE. I went on to high school and became a bit rebellious wanting to reclaim my beauty and feel loved ( my insecurities were now tremendous with a scarred body and having been bald for a good part of the middle school). I continued to swim. I continued to teach it and love it. That beautiful elixir of water. It was my Linus blanket that I have my mother to thank for. She was the initiator and introduced me to it while working her job at the local YMCA years before. My sister and I followed her to work and were assistants in her classes.

I became a fish and as I grew and walked away from my 2 battles with Hodgkin’s lymphoma I felt I was growing that mermaid tale. Fast forward in time 12 years after my Hodgkins diagnoses. I had graduated college and was working in NYC at an advertising firm. A random self-body check on my right breast uncovered a hard spot near my right armpit. After two misdiagnoses and a biopsy later the determination was invasive right ductal carcinoma, stage 1. This would mark my third cancer diagnosis and my second chemotherapy protocol for cancer coupled with a mastectomy at 25 of the right breast. And I was more determined than ever to help others and to LIVE.

When I was on the swim blocks during my competitions I would always assess the competition. The girls who would engage in “smack” talk would just empower me more. I wanted to WIN. I knew I could WIN. I only saw the WIN. Id visualize it. I realized I brought that same passion to my health battles. I was in that zone. Only positive. I saw that finish line. I was getting there. First.

I went on to get married and have two children after the right breast cancer and was counselling at the Adelphi breast cancer hotline on Long Island and doing PR work for cable stations, a spot on Montel Williams, and channel 7 news. Anything I could do to help empower others and get the word out on breast cancer and how it was affecting not just older women but women of younger age brackets, empowered me. And still, I swam. I had gotten a job managing a swim program in Bayside for children ages 5 to 18 as well as received my certification as a NYS swim referee. The water was still my comfort. I bathed in its healing qualities on my emotions and my physical body..

Eight years after my right breast cancer diagnosis and after having my second son, I was diagnosed left breast invasive carcinoma. The year was 2006. I was now 33 and had two young sons and a dissolving marriage with an abusive, alcoholic husband. I knew it was time once again to ascend that swim block and visualize my win. I was treated for the third time in my life with a chemotherapy regimen. My hair fell out, my body was bloated and achy. I had now had another surgery to remove my left breast followed by reconstruction. And I swam. I kept my mind in that WIN zone. My father would remind me all the time to focus only on the good and that my thoughts translate into things. I was going to get through this and I believed it. (the word is now etched on my lower back with my father’s name running through it).

Here I am in 2019. I’m 45 and my sons are 16 and 17. I started my own business at jetwaterfitness.com to share my passion for water fitness and swimming and the element that carried me through it all, beautiful water. I am AFAA certified as a group fitness instructor, a WATERART certified water fitness instructor, a lifeguard, and a certified pool operator. I live every day with gratitude for this wonderful gift we call life and know that every drop of it is precious.”

Jessica, one of the thousands of cancer survivors I know, and one of the many with a longevity longer than me, like all of my fellow survivors, is an inspiration.  As someone who has beaten cancer, we often get nicknamed “survivor” or “warrior,” and to be honest, many do not like having that description, mainly because it was something that we had no choice about.  But Jessica proudly refers to herself as a “mermaid.”  And if you do your research, you will see that not all mermaids are like “Ariel” from Disney, but rather are quite tough and strong.

Jessica ends each of her classes with her trademark phrase, “Go Get This Day!”

As always, I do enjoy sharing stories of my fellow cancer survivors on “Paul’s Heart.”  Would you be willing to share your story, in your own words?  All you have to do is send me your story via email to pedelmanjr@yahoo.com, and in the subject, put “In My Own Words” and I am happy to share your story.  If there is one thing I have learned in nearly 30 years of survivorship, we can never hear too many other inspirational stories and you never know if it is yours that might just make the difference for someone else.

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