Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

03 Mar 2017

A 27 Year Fight


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Today marks the 27th anniversary that I heard the words, “you are in remission.  Go enjoy your life.”  Some cancer survivors recognize their anniversary date as the day they were diagnosed at which point, would put me then at nearly 30 years since I was diagnosed with Hodgkin’s Lymphoma.

I have made this bitter-sweet announcement every year.  I do not celebrate this day.  It is not a day I wish to celebrate, because there are so many that I personally know, or have known, who have never even gotten to hear the word “remission” or continue to struggle.

I continue to struggle with Survivor’s Guilt as I have right from the beginning… why am I still here, and other’s not?  Hodgkin’s has a survival rate of over 90%, which in spite of being a rare cancer, is still a very good cure rate.  And thanks to survivors like me, with similar longevity of survival or even greater, yes, there are many who have survived Hodgkin’s longer than me, patients today are treated with a much finer tuned treatment, with similar success rates.  But for those same survivors with the same longevity as me, we have been left with so many late developing side effects from the treatments that saved our lives, and medicine was not prepared for our health issues.  Imagine being exposed to four times the lifetime maximum exposure of ionized radiation, chemicals that destroy the heart, chemicals that are actually used to poison in warfare.  That is what I and so many others have been exposed to (or more).  For many of us, these late effects have been worse than the cancer.

Yes, like I said, I do not celebrate this day, I continue to fight for this day.  In 2008, I suffered the first of three near fatal episodes caused by the late effects from treatments (heart, pulmonary, sepsis).  From day 1, I have had to fight for my rights as a patient.  Every day, I fight against discrimination for reasons such as employment, insurance, or just someone who feels that I get favorable treatment just because I had cancer.  There have always been emotional issues to deal with, as clearly, my life that I had planned as an adult would never be the same.  I am the only survivor of six in my family to be living after cancer.  Cancer has taken three grandparents, my sister, and nearly three years ago, my father.  I have said “goodbye” to so many, of all ages, either from the disease itself, or complications of the late effects from the treatments.    Last year was one of the worst in terms of fellow survivors that passed away.  I am so fucking tired of dealing with cancer.

But what is it that was the deciding factor that I would beat a disease that as a child, all I had ever known about, was everybody died who got cancer?  Ok, clearly, there is no end to how far I will go to fight for my survival.  I may lose battles, but I will never give up fighting.  Those who truly know me, know this fact about me.  My daughters were not around when I fought my battle, but they have witnessed what the late effects have done to me.  And they know how much they mean to me.

So what else could have contributed to my longevity?  Luck?  I am sure a part of that played some sort of role.  But I am driven today by my children.  I am hopeful that someday they will learn that cancer can be prevented.  They have personally witnessed my support of other cancer patients and survivors and know what it means to even just be an ear for someone to talk to.  My primary care doctor has learned about long term cancer survival from me, as well as the specialists responsible for my care.  In fact, one doctor has made it his mission, to make sure I get called “grandpa” some day.  I am not rushing that day either.

I have support from people near and far, old friends and new friends, fellow survivors, and many, just good-hearted empathetic people.  I have met hundreds of other survivors in person, and have befriended thousands more on-line that I may never even physically meet.  And my closest friends, do a great job, of making sure that I take care of myself.  The fact is, there are probably many reasons why I am still here.

And for that reason, I am going to continue to fight everyone and everything.  I am going to fight for patients’s rights.  I am going to fight to educate medicine to learn there is a whole society of people who have survived a horrible disease, and has left them battling side effects that for many, just do not make any sense.  I am going to continue to fight discrimination in all its forms.  I am going to continue to fight for not only affordable health care, but the care necessary for survival.  I am going to continue to fight our government to make sure that myself, and others are not only not forgotten, but that we get the care we need and not dismissed because, well… our “bodies have been through too much so we’re not going to go to any extra lengths to treat” me.  I did not ask for these late effects, or the negative ways that I have been treated because of them.  And I will fight against anyone who says it is not fair to them that my burden of health should be placed on society.

You can see on my counter, I am approaching another huge milestone in just a few years.  Clearly I am counting on a lot more fight left in me.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
04 Feb 2017
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World Cancer Day 2017


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I am certain that I am not the only one who has dealt with cancer.  I know that I am not the only one who has lost a family member or friend to this awful disease.  I am not the only one who has survived cancer just to suffer with late effects from the treatments that put me into remission decades ago.

Cancer has taken so many from my family, both of my grandmothers, my grandfather, my father, and my sister.

Cancer has taken so many of my friends.  Michael.  Dolly.  Davina.  And so many more.

There are many who get to live on with their lives following their treatments, waiting to hear the words, “You are in remission.”  I know too many who deal with late side effects that were unknown could develop when we were treated, several of those side effects life threatening.  And I know too many that have passed away from complications of those side effects.

On this day, I remember each and every one of you.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart
07 Jan 2017
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Chemo Cat


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*** author’s note***  Each year, I compose two stories to be submitted to Visible Ink, a writing program through Memorial Sloan Kettering.  The stories are published in an annual anthology consisting of other stories as told by other cancer patients and survivors from MSKCC.  Each other in general gets one story published per year.  I will post the other story when the book is published, but for now, here is the story that was 2nd place for me.

Emotional support comes in all forms when faced with a serious illness like cancer. When it comes to humans, that support has its flaws. People can be moody. Some can be “two-faced”. Co-workers often express jealousy as if the cancer patient is receiving favors for their battle with life. Family members may find themselves distancing from their loved one.

Animals on the other hand, offer unconditional support. Many times, fur friends may be aware that you are not feeling well, long before you do. It is this type of companionship that led to the concept of “therapy pets.”

Even on our worst days, when we come home from a long day, a dog more likely than not, will approach you excitedly with tail wagging, not even an accusational glare as to where you had been that entire time. And cats also, will snuggle up to you if they so choose.

Shortly after I had been diagnosed with Hodgkin’s Lymphoma, besides selecting my medical care and direction, I made the decision that “pet therapy” would be a part of my cure. I lived in an apartment. Dogs were not allowed, but for a $25 fee, I could have a cat. I went to the local animal shelter, adopted “Pebbles,” a white female calico.

During the initial days of my diagnosis, she spent a lot of time on my lap, as I tried to gather my thoughts about the next days.

But it was not until I returned from my honeymoon, that new disease had been discovered, I would have to undergo chemotherapy. My wife went with me for the first chemo appointment. It was a 25 minute ride, which ended up being a critical detail to keep in mind. This was the amount of time that I had, to get home, get up three flights of stairs, race to the toilet, when nausea would finally make its presence known. That first day, I did not make it. My wife had driven too slow. There were too many traffic lights.

For the next fifteen treatments, I would be on my own. Knowing that nausea would hit me while driving, I ignored speed limit signs, accelerated at yellow traffic signals. Each appointment, I was consistent in getting to my apartment building, racing up the stairs, opening my apartment door, zoom past Pebbles, flip the seat of the toilet up, my body did the rest. After the first wretch, each time, I would glance over to the left, and there was Pebbles, just sitting in the doorway, watching me. She did not greet me as she normally would have on any other day, rubbing against my legs as I stood in the doorway. Pebbles knew my current situation was not normal.

Approximately a half an hour later, after I was certain that my nausea had ended, I had definitely hoped so because I was exhausted, I stood up, closed the toilet lid, washed my hands, my face, and brushed my teeth. I crawled into my bed, and passed out. I would wake up several hours later, upon my wife entering the apartment. Each time that I awoke, I looked over to my wife’s pillow, there was Pebbles, curled up and asleep also, clearly had been watching me when I crawled up into bed. My “chemo cat”, as I often referred to her from that point on, had actually been watching over me, keeping me company until my wife had come home from work.

Decades later, I would have several more pets, as I was challenged once again with severe health issues, pets were there for me every time. My biggest fear however was following heart surgery, with a freshly repaired breast bone, being greeted by my 100-pound Golden Retriever. It was not uncommon for him to stand up on his hind legs to greet me. This time, as if he sensed my fragility, simply sat right by my side, waiting for me to pet him. That is where he would stay as I recovered at home.

Today it is very common to see pets in chemotherapy suites and hospitals. The emotional healing power of pet therapy has been proven to lift the spirits of people who are ill or hospitalized. In two recent hospitalizations that I experienced, I had numerous visits from furry friends. After missing my own fur friend at home, my spirits were definitely lifted.

When my father went through his own battle with lung cancer, the very first day of treatment, he was greeted by a Goldendoodle, who simply rested his head on my dad’s lap. This was just one of the new changes in the atmosphere of a chemotherapy suite, which definitely has an impact on the psyche when dealing with such a difficult time period.

Posted in Animals, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart

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