Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Caregivers Come In All Forms


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When we think of the word “caregiver”, there is a tendency to associate it with the staff of a nursing home, or perhaps doctors and nurses.  But there are many more examples of caregivers.  Each caregiver has their own specific role.  In fact, it is possible that you may not even recognize some of the caregivers that exist.  As long as you are involved in the direct care of a sick patient, you are a caregiver.  Even pets can be caregivers.

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This was “Goldie”, a Goldendoodle.  She was also a “therapy dog” who was visiting my father during his first chemotherapy treatment for lung cancer.  I had my first experience with a therapy dog during an episode of aspiration pneumonia and had been hospitalized for several days.  When faced with a serious illness, it is very important to take care of yourself emotionally during your health crisis.

I had my first experience with pet therapy, when I went through my cancer treatment for Hodgkin’s Lymphoma.  I was living in an apartment, which unfortunately did not allow dogs, but for a $25 fee, would allow a cat.  And so I wasted no time in adopting a kitten, who because of her colors, I called her “Pebbles.”  Pebbles would always greet me when I rushed home from my chemo appointments, with the same procedure every day.  Barge in through the front door, rush right past Pebbles, straight for the bathroom, collapse on the floor and begin to vomit.  Cats being curious, Pebbles placed herself in her seated pose, right at the doorway, just staring at me, kneeling beside the toilet, occasionally lifting my head from the bowl to see her staring at me.  About a half hour later, I would drag myself from the bathroom to my bedroom across the hall, crawl into my bed.  Pebbles would follow me, jump up onto the bed, and lay down next to me on my ex-wife’s pillow (first ex-wife).  She would stay there, as if protecting me, comforting me, until my ex-wife would come home.

Years later, when I would adopt my Golden Retriever “Pollo,” I would have the same hopes of having Pollo certified as a “therapy dog.”

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I would not trade the fourteen years I had with my fur friend.  For those fourteen years, he was healthy.  There was only one drawback, he was happy staying a puppy his entire life.  As far as providing therapy, it was going to be his demeanor and joy with each visitor that was going to have to be enough therapy for anyone, sick or healthy.

But later in my cancer survival, he would provide that pet therapy to me when faced with my heart surgery, and other emergency situations that required recovery, he was there for me every step of the way.  Gentle at the right moments, and letting me know when it was time to get back on my feet and get back to being his friend again.

Needless to say, it is an amazing feeling to see those wagging tails in your darkest hours.  These caregivers rarely get recognized.

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The next obvious caregivers are the doctors, nurses, technicians, and therapists.  I will do a post on their importance of caregiving later on, though their value goes without saying.

But the next caregivers that I want to talk about, are the ones who simply get thrown into that role.  Years ago, when I completed my treatments, I made the decision that I wanted to “give back” in some way, for all the support I got going through my cancer journey.  I got certified as a peer to peer counselor with the American Cancer Society in a program called “Cansurmount.”  This program matched counselors to patients, cancer to cancer.  Unfortunately, it was a program that struggled to survive itself, falling short of volunteers, and I would end up counseling patients with many other cancers.

But you do not have to be “certified” to be a caregiver.  Simply being there with a ride to transport for treatment, accompanying to a doctor visit, or just sitting and keeping the patient company classifies you as a caregiver.  Anything that makes the patient feel better, giving them comfort, shows that you care.  You are giving care.  And you make a difference.  You do not have to be an immediate family member.  You can be a parent, a sibling, a cousin, spouse, friend, a neighbor, or even just a stranger.

Depending on the need, the caregiver level has the potential to get quite involved.  And it is here, that the caregiver themselves need to make sure that they are taking care of themselves.  It is very easy to get overwhelmed with their own emotions and physical being depending on the level of commitment.

Hospice workers are one example of the importance of caregiving.  In a patient’s end of days, hospice plays a major role in making sure that not only is the patient comfortable, but also, the family is having their emotional needs met.  I had my first personal experience with hospice as my father passed away from lung cancer earlier this year.  Months later after his passing, they still call me to see how I am doing.  I tell them that I miss my dad very much, but I am doing okay.  I have had over twenty years as a counselor, and feel that I have a fairly good grip on my emotional needs.

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My most challenging role as a caregiver, was as his health proxy.  For this, I would go beyond just driving him to his appointments, sitting with him and explaining to him everything the doctors were telling him to make sure he understood all of his options and decisions.  My dad looked up to me for support, to help him get through his battle with cancer.  His one wish, “to be a survivor like my son.”

I could not do that for my dad.  I was powerless to stop and cure the cancer that would take his life.  But what I could do for him, as the cancer spread, was make sure that his wishes were followed to the letter.  It was difficult for me to make a decision, that selfishly I might not have agreed with, but was what my dad wanted.  And as the cancer cells spread to his brain, and took away his decision-making ability, my decisions made were even more critical.  I had to make sure my dad was comfortable, all the while making sure that his wishes of no extraordinary measures to keep him alive, suffering.  My dad trusted me that I would be able to separate my emotions from the task that he asked of me.

Caregivers come in all forms, and carry out all kinds of functions.  But without them, professional or familial, a patient’s journey would be even more difficult to get through.

Here I Am, A Man Against The World


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I want to offer a bit of a disclaimer with this post, because the title makes it look like this is going to be a super negative and depressing post.  Quite the contrary, it is going to be a post that is truly inspirational.  So please, read this post for what it is truly meant to represent… determination, hope, perseverance, survival.

I am a musician by nature, and most of my internal strength I draw comes from every note that I sing, every tune that I hear, every beat that I feel.  I listen to most kinds of music depending on the kind of mood I am in, or the mood I need to be put in.

When it comes to inspirational songs, many find strength through church hymns, and there are plenty.  Contemporary songs have such inspirational lyrics by the likes of Josh Groban, Bette Middler, and the late Whitney Houston.  But for me, no song sums up my life, no song lifts me up higher, than a song that never really got any kind of airplay, and was pretty much hidden in the Karate Kid 2 soundtrack.  But being a true fan of music, I listen to a lot of music that does not make mainstream radio.

I came across this song ironically, during the days when I was diagnosed with cancer.  But nearly 25 years later, I still find myself facing struggle after struggle, never giving up.  And while I do have loved ones close to me who stand by me, and friends who support me, ultimately, it still falls upon me, to get through my trials.  It is a beautiful and powerful song written and recorded by the late Jimi Jamison of Survivor, and recorded by the band of the same name.  It is called “A Man Against The World.”  You can listen to the song, and view the powerful video at this link:

The music is beautiful.  The words… well… read on, and you be the judge if it sums me up and you will see, why I will never give up.  It is not in me.

“A Man Against The World”

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“Have you ever walked alone at night like a man against the world.  No one takes your side, a boat against the tide.”

A small child, I was an easy target of bullies.  Not just one-on-one, but more often than not, gangs of bullies.  People who I thought were friends, stood by and only watched the daily beatings I took.  My days in school were not spent learning, but studying how to evade those waiting in ambush for me on school property, and beyond, on my way home.  No father around to teach me to defend myself.  My family telling me to turn the other cheek or worse, calling the school to report the incidents which I soon learned to no longer speak of them.  And of course, school officials telling me to “start standing up for myself.”

“When your faith is shaken you start to break, and you heart can’t find the words, tossed upon the sand I give you a man against the world.”

The first Edelman to graduate from high school, I enrolled in a local college.  While studying, I held a full time job and a part time job.  A management opportunity was offered to me, leading to me withdrawing from college with less than a semester to go.  But it was a career move that was expected to set me up for life.  It did not.

“All the people cheer ’til the end is near and the hero takes a fall.  Then they’ll drag you through the mud, you’re only flesh and blood.”

I would now officially begin my life simply surviving working in the “working world” with college no longer a consideration.  But my work skills instead of being seen as a benefit by my employers, were seen as threats by my co-workers.  There were never intentions of replacing anyone’s position by me, but my work ethics were always seen as “getting in their way” or “showing them up.”  My reputation became more about my “inability to get along with others.”

“I have walked the path from dark to light and they’ve yet to come to terms.  Alone I take my stand, I’m only a man against the world.”

And just when I finally seem to get my world to be what everyone else wants it to be, and all should be good and perfect, I am diagnosed with Hodgkin’s Lymphoma, cancer.

“And love, like a distant reminder it tugs at my shoulder, it calls me home.  I shout, can a single voice carry, will I find sanctuary within your arms?”

Following a failed marriage, based on false hopes of a family, I move on to another relationship.  Get married.  Adopt two beautiful girls.  Again, life going great, and another major health issue strikes.  Only now it appears far worse news, because it became apparent that the treatments used to save my life, now almost resulted in costing me my life, and from that point on, would discover many other health challenges that I would face.

“Someday when the answer’s clearer, someday when I even the score.  You’ll reach and you’ll find me near you, right beside you, forevermore.”

I would much rather forget the last twelve months.  Having filed for my second divorce.  Having to put my best fur friend Pollo to sleep, after his fourteen years of a healthy and fun life, left him unable to see, hear, and smell, most importantly the loss of his never-ending wagging tail.  The loss of a close friend from the same cancer that I had, coincidently at the same age as I was when I dealt with it.  The loss of my father after battling lung cancer as defiantly as he possibly could.  The loss of my job after 17 years due to corporate downsizing and complications of my health.  And because of the violent reactions of certain family members through my marriage, I relocated a great distance away from my daughters, just so that they would not be a witness to the aggression and harassment from those family members towards their father.

“But for now I’ll walk the night alone like a man against the world.  A brand new day will shine through the avalanche of time.”

Now in the process of my second divorce, facing all kinds of consequences as a result of domestic court, still searching for employment, and most importantly, anticipating the next time I will ever see my daughters if these situations are not resolved, I am still fighting.  I am not giving up.

“Now the road’s grown long, but the spirit’s strong, and the fire within still burns.  Alone I take my stand, I give you a man against the world.”

I have the strongest support of my friends both far and near, in physical presence or on-line.  I have the love of my family, and my daughters to give me strength.  And I have the love of one of the strongest women I will ever know to keep pushing me forward, looking forward to the day that this will all be behind me.

I am typing this, because I truly believe that day will finally come.  If I did not believe that, I would have given up a long time ago.  Some may see me as an “angry” person.  Though really, could you blame me given everything I have been through (there is actually a lot more than I have written, but what I did write is bad enough by itself)?  But I have never given up.  I fight not because I like to, but because I have to.  When I have finally dealt with everything, and corrected everything, and the way that does not sacrifice who I am, those who have stood by me, and most importantly, my daughters will know that I stood tall and survived.

I give you, a man against the world.

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Too Big To Fail = Too Big To Care


Geezer alert!  I am going to show my age by being able to recall days gone by, when local mattered.  And times were good.  I do not normally do stories like this, but an incident this morning kind of struck me just how far things have gone.  And honestly, I do not know if it has been worth it.  I will let that up to you.

I was helping a friend with their stove this morning.  I used to do that kind of work years ago, and this particular task was easy, and not very physical to do.  So I made the call to the local supplier to see if they had the part, which they did.

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Simple enough, “how much?”  “A little bit over $50 and we have it in stock.”

My next question threw him for a loop.

“Do you have any aftermarket replacements?”  I asked this because at one point, the aftermarket company “Chromalox” actually used to make the element for the name brands.  Yes, you then paid the much higher price just to have the name brand logo on the part.  Years ago, being able to buy “generic” from local parts places saved you considerable money.  But if you went to an “authorized” wholesaler, per the manufacturer, they were not allowed to sell the generic equivalent.  The truth is, at one time, if you needed a belt for your washer, a lint screen for your dryer, a door gasket for your refrigerator, or an element for your stove, generics were always available.

“No, we only carry OEM (original equipment manufacturer) parts.”  So of course I looked around to find someone who was not authorized to sell those parts thinking surely, I would be able to get the original part with the original manufacturer’s name, Chromalox, not the manufacturer of the stove.  It was then that I found out that the manufacturer had bought out the generic replacement line I was looking for.  And yes, now my friend must pay the higher price.  But as I reflect on the past, for decades we have seen that mergers, though originally sold to us as “good for the consumer because it would increase competition which of course would bring lower costs,” I now call bull officially.

Here are some other examples:

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Do you remember when nearly every town had their own telephone company?  Do you remember the customer service we had when there were issues with the lines?  Sure, the costs we thought were high, but look at the times now with just a couple of major players?  Customer service now means talking to someone outside of the US if you are lucky, and with all the hidden extra fees, we are now paying WAAAAYYY more than the days when it was just “Ma Bell”.

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Banks?  I do not even have to go there because we all know that all the mergers produced one of the biggest collapses in our economy.

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Cable TV?  We are on the verge of a monopoly with this one, and our rates have never been higher.  Sure, their defense is “look at everything we are now offering your though… 1000’s of channels of programming.”  I only want four or five of those channels.  And if you try to break down your “package” by eliminating the services, amazingly, it will only drop your $150+ bill by five or ten dollars.  Come on, cable, phone, and internet for $150?  But if I want to drop the phone line, my bill will still be $145?  And anyone who has tried calling “customer service” for at least one of the major providers knows that company only provides “disservice.”

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Big Pharm… wow.  The motto used to be “everyone needs prescription drugs” which of course should have translated to job security.  But as mergers occurred, jobs were eliminated.  And as drugs came off patents, generics soon crept in making the medications affordable.  But then Big Pharm started gobbling up generic manufacturers, and now look at today.  The costs of generics are beginning to climb to where many patients are in the same situation as trying to afford the original drug… they cannot!

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And here in Florida, as in many other states, doctors are being swallowed up by “health networks”.  This is resulting in the elimination of the general practitioner.  The numbers of general practitioners in the state of Florida are down nearly 50% as their practices are swallowed up by these networks.  Gone will be the times that you could see a doctor, for your life, who knew you, and cared for you.  You will now become just a number, and will get a “standard” level of care set by the network, not necessarily what you need, and perhaps might not need.

Of course, there is the big target, Wal-Mart.  How many local businesses have been put out of business by this company?

Too big to fail?  Too big to care.

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