Paul's Heart

Life As A Dad, And A Survivor

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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Dentists And This Particular Cancer Survivor


After everything that I have been through from the cancer to the many surgeries I have faced, there still lies one caregiver that stresses me out more than anyone, the dentist.  I cannot say when this irrational fear ever began.  To my memory, I had a good pediatric dentist who never hurt me, even when it came to fillings, making sure my head was spinning with plenty of nitrous oxide (laughing gas).

As an young adult, the only thing negative I can recall was the frequent desire of my dentist at the time to want to do “crown work” because of the wonderful dental benefits I carried at work because “you have the benefits, you should use them.”  It did not matter that I still had to shell out half of the payment that the insurance did not cover.

But I am going to skip ahead for a second.  Because it was my last dentist that actually helped me to get over this anxiety that I had, not just because it was normal and irrational, but this dentist knew that with the complicated health history following my treatment for Hodgkin’s Lymphoma, dental work was as much an important part of my life as much as the follow up appointments with my doctors.

But it was a simple but determined act on her part, which turned things around for me, especially with my anxiety.  As I found myself cancelling multiple appointments in a row.  Not even my any of my doctors went to the extent that my dentist had gone, actually calling me, repeatedly, encouraging me to get in for an appointment.  Coincidentally,  she had convinced me to come in, just before I unknowingly would undergo my emergency bypass, caused by my radiation therapy treatments.

My dentist understood, that with me being asplenic (not having a spleen), hygiene and gum maintenance were important to maintain.  An odd fact that I learned was that many heart disease cases are discovered during or following dental appointments when bacteria from the gums ends up traveling through the bloodstream leading to cardiac episodes.  But at the moment, that was not even the main concern to her, it was dealing with my anxiety.  Three separate phone calls later, she had convinced me to come in, and together we talked about the anxiety issue.

A lot of that conversation would not have been forgotten following my heart surgery.  You see, it was at that time, it was discovered that my body had been progressively developing late issues from my cancer treatments.  Along with my heart, lungs, spine, muscles, esophagus, thyroid, and more, my teeth would also need to be taken care of more properly and thoroughly.  And my dentist understood this.  She understood the need for prophylactic care, like antibiotics that I would need to take before having any kind of work done to prevent infections.  And of course there was the structure of the teeth.  She was aware of these concerns because she continually learns of latest advances in care and patient needs.

Less than a week after my heart surgery, I broke a tooth.  And for the first time, a filling or crown would not take care of it.  My dentist immediately referred me to an oral surgeon, and the tooth was pulled.  It seemed no big deal to me as it was one of my back molars.  In less than a year, a second tooth would develop a problem, an abscess.  As a cardiac patient, this was the worst thing that could happen to me.  Under normal circumstances, a root canal is done, followed by placement of a crown.  Unfortunately, this was going to carry quite a price tag on it, and I was left with the decision to have my second tooth pulled.  It was no big deal… or so I thought it would be.  As the oral surgeon attempted to pull the tooth, it literally crumbled in his tool.  I could feel it, and hear it.

When I returned to my dentist, we had a detailed conversation that now included prevention, or at least an attempt to prevent any more lost teeth.  It seems the radiation therapy that I had received, the excessive amount of it, had spread from the area intended (no duh, like my heart as well), so not only did my jaw get exposed, so did my teeth.

Meanwhile, on social media pages for cancer survivors, this seemed to be an all-too-common issue for many.  One thing became obvious, prevention did not seem like a likely possibility.  Instead, the concentration needs to be on the corrective action, especially if the tooth must be pulled.

Unfortunately for me, I have no options available as far as root canals and crowns.  If a tooth cannot be fixed, it will be lost.  And it is how it is done that makes a difference.

For the average healthy patient, or the unknowing cancer survivor, dentists and oral surgeons are likely to recommend or require “hyperbaric oxygen treatments” to help heal the jaw bone.

To be honest, I know nothing about this part of a tooth extraction, other than I cannot go through this.  Forget the cost involved, because of another cancer treatment related issue, exposing myself to this option could cause even greater complications.  You see, one particular chemo drug I got, called Bleomyacin, even years and decades following, evidently plays a negative role in hyperbaric treatments in what has been described to me as sort of a “reactivation of the drug”, causing damage to the alveoli of the lungs, you know the little sacs, causing an issue with fluid, called pulmonary edema.  As a patient with as many health issues that I have from my treatments, I really do not need to add any more complications.

And as I faced yet another extraction, luckily all have been in the rear of my mouth, it was only after multiple attempts to find an oral surgeon who would either not force me to undergo the treatment, or have a different option.

Platelet-Rich Plasma therapy (PRP) is a process where blood is drawn from you, the plasma processed to be used, by injecting into the hole left from the vacant tooth, to help the bone heal.  It is an inexpensive process, and not only not time consumptive, but done in minutes following the extraction.  The tooth pulled, the PRP administered, and the healing begins.

The only other issue to consider, is whether to replace the space.  Again, having radiation damage, I do not have the option of either an implant, and well… a bridge would just be too expensive.  The implant is not an option, because of the risk of osteonecrosis.  This simply put, is an increased risk of the jaw bone breaking, as in placing an implant would likely cause this.  To be honest, I can put up with some lost teeth in the back of my mouth, but not really willing to risk any damage to my jaw.

I had originally planned a different post tonight, but on my social media pages, there was a lot of buzz about this issue, so I have put out what my experiences have been.  It is what it is as far as I am concerned.  It is all about managing what I have to deal with, and cosmetically, it means doing all I can to keep what teeth I have left (although I have been told there are likely three more that eventually will face the fate of the others that have come out).  But because I have learned to manage the anxiety I had about going to the dentist, I am able to face this particular late effect issue, unfortunately on as seemingly a regular basis as my check-ups.

And just like my other health issues I deal from the late effects of my cancer treatments, unless I tell you, or, at least as long as my smile does not show any differently, you will never know that I am dealing with this.

“Paul’s Heart” – 50,000 Views Strong!!!


Typically, people dread Mondays.  While I do not dread them, Mondays are not my favorite day of the week.  HOWEVER, today is a great Monday!  As the counter states, “Paul’s Heart” has had over 50,000 views officially this past weekend.  Among some of the other stats that I have completely not remembered, I have published 764 posts (765 including this one).  There are 252 more posts in draft form, and hundreds that are just prompts.  And then there are more than a dozen published stories and articles that I have share on this site.  So many readers have either commented or written me with questions, situations, seeking advice, or simply just to say, “yeah, I totally get that.”

Just some of the topics that I cover regularly:

  • cancer and survivorship
  • adoption
  • parenting
  • healthcare
  • discrimination
  • parental alienation
  • education
  • bullying

I am driven by the expression, “those who cannot do, teach.”  Because I am a cancer survivor, I cannot donate blood or organs.  Because of cancer treatments, I discovered the world of adoption.  I have taken on discrimination and won.  I do not tolerate bullying at all.

But my one goal with “Paul’s Heart” has not been met yet.  Actually writing a book.  I have begun the process many times, each with a different concept or approach.  The only conclusion that I can reach as to why, is that I have not experienced yet, that one key moment that will either be the beginning, the focus, or the conclusion of such an endeavor.

In the meantime, I will keep writing about things I cannot do, but can help.  I will continue to be a voice for those that do not have the ability or confidence.  I will research and find answers, point in directions where to find answers.

I will also keep looking for, and printing guest stories from you, the readers.

From the bottom of my most grateful heart, thank you to all of you who have read, shared, and appreciated “Paul’s Heart” over the years.

Paul

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