Paul's Heart

There Is More Than Meets The Eye

“There is more than meets the eye.”

“Don’t judge a book by its cover.”

“Looks can be deceiving.”

“Things are not what they seem.”

There are any number of expressions that teach us, that what we see in front of us, might just be an illusion.  Sometimes it can set us up for failure.  There are times when it gives people a false sense of security.  Add in ignorance, and appearances may just have an opportunity to be fatal with consequences.

I have never been comfortable with my photo being taken.  But if you see my pictures, you will only see me as I am right now, healthy.  I never allowed pictures to be taken of me when I was battling my Hodgkin’s Lymphoma.  I did not want any reminders of when I was sick.  I never wanted anyone to see me in that condition.  What you see of me in photos is exactly how you see me if you passed me on the street.  That by first glance, I am a healthy looking twenty-nine year-old.  Okay, I am forty-seven.  But with my goatee shaven, I can pass for twenty-nine.  I really could.

But the truth is, my body has betrayed me.  It did not betray me with my cancer diagnosis.  That could not be helped.  But the reaction my body had to the various things that had been done to me, from surgeries and treatments (both radiation and chemotherapy), like so many other people, caught everyone off guard.  In fact, other than the initial stereotypical side effects, and the lack of a follow up protocol for someone to survive cancer longer than five years, there was no reason to suspect the time bomb that was ticking inside of me.  Or how many time bombs and booby traps there were.

And up until this point, or rather five years ago when the shit hit the fan, no one had any idea what to keep an eye open for.  Cancer patients by society’s measure were only hoped at best to live five years.  Every cancer patient and survivor strives for that “magical” five year mark.  During those first five years of survival, I was followed closely, but only for my Hodgkin’s to return.  Follow up exams went from once every three months for the first year, to once every four months for the next year, then it was every six months for two more years, and then, for the big five year mark, I was put on annual visits.  But again, my oncologist only examined me for my Hodgkin’s.

Everything had gone well.  No relapse.  In my seventh year, I moved from my current residence, and though I notified the oncologist, for some reason, I no longer got my “reminder” post card telling me I was due for my annual follow up.  Yes, the obvious, I should have made the call myself because it is my body.  But that was just it, my body was great.  No lumps or miscolored shapes.  No fevers or night sweats.  All the things he looked for.  Surely I did not need to pay him for that which I could do for myself.

And so I muddled through the next ten years and more.  No problems.  I gained some weight I had not planned on but nothing I was concerned about.

If you have read through my blog, you can see that this “blind” living of mine could have cost me my life.  But was it really my fault?  The doctors used toxic chemicals and deadly radiation to cure me of one deadly issue, only to face another.  Was there anything to really be concerned about?  I looked in good shape.  No one could ever tell I had cancer.  Looking at me, there was no way to know I was about to drop dead of a major heart attack.  I was only 42 years old.  I had a full head of dark brown hair (no gray).  I was fairly fit, and generally walked around with a smile.  My attendance record at work was pretty much spotless.  That is why it came as a complete shock when my co-workers had heard the news that I had just had an emergency double bypass heart surgery.  This goes beyond not having had a protocol for following patients up long term, as in for the rest of their life for all the possible side effects that could develop.  But unlike today, back then, cancer patients were not studied for long term survival as they are today.  Now doctors follow up patients forever.  Or rather as long as the patient is compliant, which personally, I am proof of why you need to follow up forever.

So, we now know to follow up cancer patients for the rest of their life.  The NIH (National Institute Of Health) just published a study, that perhaps cancer patients need to be followed up a lot more frequently for severe issues like cardiac and pulmonary.  Face it, my left main artery had grown scarred to the point of being blocked 90% until I finally dealt with the main and obvious symptom.  But guidelines known today, had I gone through annual echocardiograms twenty three years ago and every year after, this condition would have been caught years ago.

But is it enough to follow up patients once the treatments are done?  As any cancer patient will tell you, prior to each treatment, our blood counts are checked.  Following the treatment, our blood counts are checked.  For some chemo drugs, the main concern is about the heart, so you undergo tests to make sure your heart can take the drug, and then after treatments are over, your heart is checked annually for any developments.

I have a young friend who had just completed his chemotherapy for Hodgkin’s Lymphoma, and he was given half of the chemotherapy drugs and dosages that I was given.  He did not go through radiation, nor any of the diagnostic surgeries I went through.  He got through his treatments in textbook fashion.  So imagine the shock of his parents, when barely two months later, his mother would take him to the emergency room for a chronic cough that was getting worse.  Later that evening he would code blue.  They revived him and then medivaced him to a heart that specializes in heart transplants and other surgeries.

Doctors had discovered that the one chemo drug, an anthracyclene, which effects the heart, had done just that.  The drug had destroyed the muscles of the left side of his heart and it was no longer pumping at a sustainable level.  Doctors had to put in a pump to assist with this, and for now, this is how my young friend will live the rest of his life.

I cannot help but wonder, had the doctors followed up his heart, like they did his bloodwork, the doctors would have seen the developing damage being done to his heart.  While the chances of this severe a side effect are rare, my argument is that if it could have been discovered earlier, his treatment could have been modified to lesson or even eliminate this particular side effect.  But instead two parents were forced to hear the words “code blue” and know it was their son being talked about, and then forty eight hours later be told by a heart surgeon, “we did everything we could, but your son is very sick.  We just don’t know if he will make it.  It is not good enough to follow up us long term, it is not good enough to schedule for an annual follow up after the last treatment ends.

I know what I am stating, there will be critics who complain, “but this is going to drive up health costs.”  I am sorry, but explain health costs to parents whose son has face three life and death situations.  Who are we to determine who gets the right to live or die, let alone the life of someone so young.  The last picture I had seen of him, he looked great.  His hair had begun to grow back, his energy had begun to recover, appetite was back to normal.  To look at him, no one had any idea that my young friend would have to fight for his life for a second time in less than one year.  The first fight from betrayal of his body, the second fight from the treatment that saved his life from that first fight.

Caregivers… Where Would We Be Without Them?

November is National Caregiver Month.

There are two main participants in a battle with cancer (or any serious illness really – but for my experience and this post, I am referring to cancer), patient and caregiver.  The patient is the obvious.  But when we think of caregiver, we often gravitate to the definition as either the doctor or the nurse.  But there are so many others who willingly, and unwillingly take on the role of providing care and comfort for someone battling an awful disease.

It takes a special person to take on the role of caregiver, no matter what the capacity, especially when it comes to a loved one fighting one of the major killers.  When I battled my own cancer, Hodgkin’s Disease, I chose my oncologist simply on the fact that he treated and cured my grandmother of her breast cancer.  That was good enough for me until I got to learn his bedside manner, or should I say lack of any.  He was a good doctor, do not get me wrong.  But I just could not feel that he cared about me.

It was my social worker who pointed out something that I had not taken into consideration.  Stop and think, this man has to deal with death every day.  Some of his patience survive, and some do not.  He has to “disconnect” emotionally from each patient because he cannot afford to be emotionally distracted or crushed when something goes wrong.  From that day on, I developed a totally different appreciation for his care.

My oncology nurse Brenda, there was no better caregiver.  She took care of me as if I were her son, with the care, comfort, and consolation.  My social workers, Ilona and John provided the emotional support I needed.  Yes, I was surrounded by caregivers.  That was their job.

I will be the first to admit, I am a horrible caregiver.  I am a much better patient because as a patient, I can guarantee that I am going to take charge and get through whatever crisis I am dealing with.  But as a caregiver, I must push the patient to do what I feel that they can do, what I need them to do.  And if they cannot, I feel as much pain as they do, and then take on the guilt as if I have let them down.

When I completed my treatments, I made the decision to give back, by counseling cancer patients and their families.  I definitely did not plan for my first patient to be a child, who had a fatal diagnosis of the cancer that I had beaten.  While I had been trained for that situation, for it to have been my first patient, was the most difficult loss I had ever faced.  I soon realized how my oncologist must have felt with each of his patients.  You can see this whole story on the page “Jennifer’s Story”.

My first caregiver was my first ex-wife.  She was there right from the beginning, when I told her I had cancer.  That is right, when I told her.  She could not bear to be with me, when I faced the diagnosis.  Nor could she handle being with me for my treatments and when I got so sick from the side effects.  Please understand, I could not hold her reactions against her.  She clearly was not able to handle the role that she had been thrown into.  That does not make her an awful person.

But decades later, I would be the one thrown into the caregiver role, along with my brother.  Again, neither of us had volunteered for it, but it was something that we both knew we had to accept.  We each had responsibilities, my brother the financial aspects, and me, medical support.  Together, we had to get our dad through his diagnosis with lung cancer.  What we did not expect was the nightmare that followed his surgery, two strokes that left his cognitive ability in question.  Were it not for both my brother and I being in his hospital room with him, the doctors would never have known that he had suffered those two strokes.  A simple mozzarella cheese stick mistaken as a carrot led my brother and I to realize something was wrong.  My dad swore that “the carrot” was so soft, yet chewy, and there was no convincing him any different.  My dad likes to laugh and has a pretty good sense of humor, but not that type to mess around with his care, especially after having half of his lung removed.

There were a lot of difficult decisions that my brother and I had to make.  My father would not be able to take care of himself as he often had dillusions.  He also could not care for his wife who he had cared for, for the last several decades as the result of an auto accident.  We had to care for both of them.  We had to figure out, who was going to watch them, where they would live.  And in my dad’s case, what about the cancer treatments yet.

The hard part for my dad to accept, being a proud man, was having to rely on someone else.  Especially when it came to driving.  He was not going to be able to drive for a long time, until his eyesight and judgment could be confirmed.  This would result in us seeing his temper and frustration, because anything we offered to the doctor impeded his progress and eventually regaining his driving privileges.  So as you can guess, in spite of my brother and my efforts to get him through and recovered, there would definitely be times that we felt what we were doing was thankless.  We knew that it was not, but it did not spare our feelings knowing that.

And that is the price that comes with being a caregiver.  Being a caregiver often means having to make the difficult decisions when the patient cannot.  Caregivers often have to be the driving force encouraging their loved one to fight harder.  Caregivers are the first ones to shed the tears when the doctor comes out of the operating room, “we did everything we could…”

None of us want to ever have to be a patient or a caregiver, but when we have no choice, the majority of us will rise to the occasion.  Parents of a three year old boy will leave no stone unturned to find a cure for their son’s cancer.  A collection by co-workers to let their “friend” know that they have not been forgotten.  A mother having to ride a roller coaster celebrating the defeat of cancer, just to face another major setback, leaving her entire world turned upside down, but all of her thoughts are put into getting her son to come home.

The role of caregiver is performed by many, in any capacity, meeting any need.  It is important that we realize and recognize the valuable role that these special people play in our lives.  We do not ask for the illness, and they do not ask to have to deal with the illness.  But we take on our roles, hopefully with minimal negative feelings, and we get the job done.  We recover, not just the patient, but the caregiver as well.

So tonight, I raise a glass and thank everyone who has taken on the role of caregiver, the most selfless and thankless, but most important aspect of getting us through our toughest ordeals.