Paul's Heart

Life As A Dad, And A Survivor

Rethinking A Turning Point

As children, there came a time for all of us that we could not wait for that moment when our parents handed us a key to “the castle”, our house.  At age 11 or 13, there were very few milestones that we were ultimately aware of that were nearly in our grasp.  But getting to stay at home, alone, was the first taste of a much different world to come.

I do not recall the exact moment I was handed my key.  All I remember was that I was tired of having to tell friends that I went to “the babysitter” after school.   It was only briefly, the downtime between the time I arrived home from school, and my grandmother would get home from work.  My parents were divorced when I was three, and my mother had full custody of my sister and I.  But she worked second shift (early evening to early morning hours).  My mother had already left for work by the time school let out.  The routine went, school dismissed, I went to the neighbor’s house and waited until my grandmother got home.  Then I got my freedom.

Something switched once I got the key.  Sure, I got to go straight into my house, but other things changed too.  Most noticeably I became more aware of my surroundings.  I had previously learned about being prepared for emergencies from school and scouts.  But,  I also found that I could get away with things, even if it were just for a half hour.


The first new freedom that I discovered was via the television.  For a half hour, I could watch anything that I wanted, which included a cable channel that showed movies that were rated R (today, the movies would be rated PG).  But one day, I stumbled across something else.


I was a “latch key kid.”  On the television, the personality was talking about children who came home from school to an empty house, referred to as “latch key children.”  It carried a negative connotation only because it concentrated on the fact, that a child was going to be home alone, regardless of the amount of time.  I can understand, parenting in the 1970’s was not like the 1950’s where mothers got to stay at home.  And if you were a single parent, your income was limited to household expenses and unless you had a friend you could rely on, it was going to cost you additionally for a babysitter.

I took the term a bit harder.  Being referred to as a “latch key” kid, was a negative term.  While most of my friends went home to a house with an adult to greet them, going home to no greeting often left me feeling alone, unwanted, uncared for.  Of course today, I do not see it that way because as an adult I can understand the situation more clearly.  But as a child, I did not have the capacity to understand that.  All I was able to understand was what I knew… my friends went home to someone waiting for them, I went home to be alone.

This has an impact on a child’s life not just in the short term, but in the long term as well.  Because, once there is the taste of that independence, not just from the brief time home from school, then both the child and the parent look to longer periods of “latch key” status, with both having their reasons to eliminate the need for babysitters.  Of course, as children grow, they do not want to hear the word “babysitter” any longer, and parents want to eliminate the cost.

But the next phase or transition needs to be handled delicately.  Because the effects of being alone, and the circumstances of the home, can have huge consequences for the children especially, and quite possibly tragic for the family.


Sure, the concept of the movie “Home Alone” had a lot of comical moments.  But the reality of the movie was that a child was left behind for an extended period of time because the family left on vacation without him.  The premise of the movie was not that far fetched, though the boy’s survival tactics while providing many laughs, were not likely to be successful in fending off intruders inside the house while he was alone.

So, how old should a child be to be left alone?  How long should a child be left alone?  These are subjective questions because it all depends on the maturity of the child.  There are many states who have taken this judgment call away from the parents, because clearly, many have made the wrong call.  But another factor to consider is how prepared is the child to be alone.  Does the child know who to contact in an emergency even beyond 911?  If a warning for a weather emergency came on the television (like a tornado warning), would the child know what to do?  Of course, how to handle telephone calls and knocks on doors are critical so as not to alert anyone that a child is home alone.  Then there are rules that need to be established so as not to be alone outside of the home, like roaming the neighborhood, leaving a child susceptible to predators.

Then there are emotional considerations.  Is the child going through any difficult time in school or at home?  A child spending time alone, isolated, when faced with emotional issues is indeed a sad situation.  A child with no distractions or support, will look to alternative means to deal with the issues they are struggling with.  It is during this time that a child will be more likely to give in to peer pressure, to begin smoking, drinking, experiment with drugs, and explore sex.  It must be admitted, the opportunity presented by being alone, means the less likelihood of being caught.  And once a child begins to feel distracted enough, they will believe that these alternatives are the solutions to dealing with their emotional pain.

No, a babysitter for an 11 or 15 year old is not the answer.  That only undermines the emotional growth of a child.  But there are other much more subtle means of providing supervision while giving the appearance of supplying independence.  Encouraging a child to visit with friends, a family aunt or uncle asking for a visit from the child, or even finding a way to include the child in what you, the parent is doing, are all reasonable alternatives to leaving a child alone before they are emotionally and intellectually prepared to be left alone.


“Hello Dolly… Well, Hello, Dolly”

“Hello Dolly,……well, hello, Dolly
It’s so nice to have you back where you belong
You’re lookin’ swell, Dolly…….I can tell, Dolly
You’re still glowin’…you’re still crowin’…you’re still goin’ strong”

– Louis Armstrong, from the musical, “Hello Dolly”


There is no doubt this is how Dolly was being greeted this morning.  This is how I knew Dolly… well, for most of the time anyway.  Like me, Dolly was a long term cancer survivor of Lymphoma.  Like me, she suffered late side effects, and eventually another battle with cancer, as if the first time around was not enough for one person to go through.

I never met Dolly, whose actual picture would eventually appear on her Facebook page, because of the droves of other survivors who would have to physically meet, the wonderful spirit, who, when faced with one challenge after another, would always manage to muster a smile, offer encouragement, all the while, maintaining order in her life.  And there were plenty who would get to meet this gem of a spirit.  Unfortunately, I would never get the chance to actually meet Dolly, but we exchanged emails and texts, to discuss certain admin issues with the support pages that she created on Facebook for those of us who struggle emotionally and physically with the late effects from the treatments that cured us of our cancer.

Dolly had a “travelling companion” besides her husband Dave, a doll named “Nelly”.  Kind of like “Flat Stanley” in schools, Nelly was eventually adopted by another survivor, after it became clear, Dolly would no longer be able to travel, and so, pictures of Nelly’s adventures would appear, giving many of us, Dolly included, even a slight smile, because each picture would remind us of Dolly.

I am sure that I am not the only one, but Dolly also took time to help others with other issues or struggles in their lives besides survival.  That is just who she was.  Even up until days ago, she did all she could to keep in touch with us.

I have met hundreds, if not over a thousand cancer survivors over my survivorship.  And I can tell you, the rush that comes over us, when we meet someone who “gets it”.  But when we choose to meet someone in our situations, it also sets us up for the possibility of heartbreak.  Because as a survivor of cancer, with late effects to deal with, things can change just like that.  But those who got the opportunity to meet Dolly in person, neither was disappointed.  I know many of the faces she got to meet, and that meeting always meant something so special to each and every one of you, and especially Dolly.

I have known, and still know many people I draw inspiration from in my survival, but Dolly has been the second person, who I consider very influencial in my survivorship, that I have never personally met.  The other, was a woman names Linda, who urged me to not only advocated for cancer patients, but to become aware of the world of late effects for cancer patients who would go on to live long lives, and need help.  It is just at one point, I never thought I would be one of them.

I am sad for the passing of my friend.  I am certain it is even harder for those who knew her best.  The testimonies being given on her Facebook page, and replies to the post by her husband speak volumes.  For those reading this that are on those Facebook pages, that is what this group is for, to help us deal with the grief and sorrow, and help each other to survive.

The photo below is the cover from Dolly’s Facebook page.  This was definitely Dolly.


Life Saving Bling


I suffered a wrist injury at work in 2003.  From that point on, I never wore anything on my wrists.  In fact, I cannot tell you the last time I ever saw a watch.  But as you can tell from the picture, I do wear something on my wrist today.  In fact, I have done so since 2008, when I had my life saving emergency open heart surgery.  And you can tell that it looks quite worn as it is over eight years old now.  And like the wear on the med alert bracelet, the irony is that it does not reflect the wear and tear on my body that late effects from treatments of radiation and chemotherapy have done.  I will get back to that bracelet in just a moment.

Once it was discovered that I was suffering late developing side effects from extremely harsh and toxic treatments for cancer decades ago, I had the daunting task of finding someone who could not only diagnose the issues, treat the issues, but also help me manage those issues, for the rest of my life.

I found such a doctor at Memorial Sloan Kettering Cancer Center in Manhattan.  Dr. O had not only studied Hodgkin’s Lymphoma for more than three decades, he had also been studying the late effects from the toxicity of chemotherapy and the never-ending destruction caused by high levels of radiation (in my case, 4 times the lifetime maximum of exposure).  Though it is not a joke, the inside comments made by patients like me, “radiation… the gift that keeps on giving.”  This was also what caused the need for my heart surgery.

Anyway, you can find out about the heart surgery by going to the page, “CABG – Not Just A Green Leafy Vegetable.”

The first thing that I had to do as a patient, was gather all of my health records from my oncology team.  This proved to be a daunting task as I was more than 18 years out from treatment.  My chemo records were incinerated.  Probably only due to regulations by the NRC, I was able to recover my radiation records which is the only reason I know my exposure levels.  They also had copies of my surgical records.

Through medical history of treatment back in the late eighties, my general health records as well as knowing the drugs used in my chemo cocktail, all Dr. O could do, was estimate what dosages of chemo I was given.  The paperwork that I now had in my possession was enough to fill an entire school backpack.  And that backpack travelled with me all the way to New York City.  In fact, that backpack travels everywhere with me, because any kind of emergency medical care I may need, my backpack provides crucial information that will be critical to me surviving any kind of trauma or illness.  Because of having Lymphoma, and being asplenic (having no spleen) courtesy of my diagnostic procedures, I cannot be treated as a normal healthy human being.  I have a higher risk of infection, bleeding out, and more dangers.

As you can tell, it is not really practical carrying this backpack around with me everywhere.  Technology in doctor offices across the country now make it possible for doctors anywhere to see your records, no matter where you are.  But just because they are available does not mean that the doctors will use it.  As a long term cancer survivor, I have learned that I have to advocate for myself.  That means not settling for a doctor blowing me off, because the “symptoms just don’t make sense for someone my age.”

In the event of an emergency, before I even get to an emergency room, I have had to deal with paramedics.  Any paramedic caring for me, needs to know immediately what kind of patient they are dealing with.  Which is why, not just me, but patients with special needs wear these med alert bracelets.

In my case however, my bracelet does not list just one disease.  With more than a dozen different health issues that I deal with, there simply is no room on the bracelet.  So I had to adapt.  I had to use what little space I had available to give as much information.  On the front side of the bracelet, lists my name, that I am a Hodgkin’s Survivor from 1988 as well as a 2x CABG Survivor from 2008.  Immediately under that it says, “see reverse side”.

The first line instructs whoever is reading the bracelet, to immediately pull my wallet out, and locate two miniaturized cards that have all my medical diagnosis on them, and how to treat me prophylactically to prevent infection.  The next line instructs them to call my primary care doctor and her phone number, and my specialist at MSKCC and his phone number.  Any medical personnel following these instructions, increase my chances of survival.

Though I have  yet been able to do so, there are many other survivors who have been able to “save” their medical records on a “zip drive” or CD to give the information to any doctor treating them.  But the other night, while visiting with a friend, I noticed he had a different kind of med alert bracelet on his wrist.

1469284722250 1469284750225

It took both the alert, and the information, and put them into one item.  Most paramedics now use laptops and by simply plugging in the bracelet (important if a patient is unconscious and cannot alert the paramedic that they have important medical information on a USB drive).  And these are not expensive either.

For my long term cancer survivor friends, for cancer patients going through treatment right now, in fact, anyone dealing with a serious illness or condition, my blog has always been about information, and hope.  I hope you take this introduction of new technology, and take care of yourself.  Having your health history literally at your fingertips, can make all the difference in saving your life.

Post Navigation