Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Happy Mother’s Day


I sure am glad I did not forget today.  But it was apparent this morning, while at the grocery store to get some breakfast items, there were many who definitely did not remember today.  And to say it was a gender issue, with the majority of customers being men (probably 95%), is an understatement.  Yep, so many just remembered this morning in fact, today is Mother’s Day.  Fortunately, Publix was prepared to bail out the absent-minded gentlemen.  Their reputations for being the most thoughtful would be saved.

I live quite a distance from my mother, so I was reliant on the United States Postal Service to get my gift to my mother in time.  That required me to remember at least a week in advance.

I have written about the relationship between my mother and I over the years.  While not the typical “Norman Rockwell” portrait of a family, our relationship is what we have made it today.  And that is what counts.

Yes, we rely on Moms to take care of our bumps and bruises, help us with homework, and cook some of the greatest Macaroni and Cheese, but it is in adulthood that we really get the chance to see the true value of “mom.”  And then “mom” realizes her role changes as well.

My mother has gone through a lot with me as her son.  And though really I cannot take all the blame for it, because of the many health issues I have, it kind of does make it my fault.  Unlike as a child though, the care of my “bumps and bruises” as an adult are now handled by me.  For the most part, I make her sit on the sidelines, watching, trying to coach from the bench, cheering me on.  And I know she wants to do more.

I feel she has more important things to do now as my mother, at least more important to me.  At some point in a mother’s life, there is a good chance she is going to take on a new role, grandmother.  Now, while today is Mother’s Day, my mother’s role as a grandmother is important to me.

During my early childhood days, my mother had to work second shift jobs.  Which meant after I came home from school, my grandmother took care me during the week.  The majority of my childhood years spent with my grandmother, was probably the most critical period of my life as there was so much that I learned from her, not just the every day stuff, but lessons in life.  But I also grew very close to my grandmother.

Not only would my grandmother become my moral compass in life, she was the most important inspiration to me when I was diagnosed with Hodgkin’s Lymphoma.  She was the first cancer survivor I had ever known.  And I knew that if she could do it, I would follow in her footstep, even using the same oncologist.  Of course we know how this story has played out.  I am currently a 27 year survivor.

When she passed away, it really hit me, what I had lost.  I realized just how important a role she played in my life.

But as an adult, I witnessed other grandparents in action.  So many were just so proud to show off their grandkids and all the memories that they were making.  And the pictures all showed the same thing, huge smiles from the grandchild looking up at either “poppop” or playing with grandma.

As a parent, I witnessed this new bond and its importance first hand.  My children loved my father, and love my mother.  Right from the beginning, I made it a point to make sure that both of my parents, even though divorced, would each play an important role in my daughters’ lives.  When it came time for visits, both of my daughters were eager to make the hour long drive to visit both of my parents in each of their homes.  They greeted my parents with excited hugs and kisses, and lots of giggles.  And when it came time to leave, my daughters left with the biggest hugs and “can’t wait to see you again” kisses goodbye.  My daughters valued my parents as much as I valued my mother’s mother.

In recent times, the role of grandmother and mother have combined in a huge way, and what I once thought was impossible.  Two years ago, my mother gave me the surprise of a lifetime.  Not only was she going to get on a plane and fly to visit me, she was bringing two very important co-passengers… her granddaughters, my daughters.

It was the first time my mother had flown.  It also gave my mother some very special time with her granddaughters and vise versa.  This trip has been repeated, and will continue.  This is a special thing between my daughters and my mother, their grandmother, something all will always remember, especially me.

The best gift I could give my mother is the appreciation I have, for all the love and kindness she gives and shares with my daughters every chance she gets.  To know how much she means to my daughters, and my daughters to her, is what means the most to me at this point in my life.

I know today is supposed to be a happy one, lots of flowers, making breakfast for mom, taking mom to dinner.  And of course, flowers and cake.

But my heart goes out to so many too, who grieve on this day.  Because of my circumstances and age, I know so many today who grieve for their mothers.  And a totally different sorrow, mothers who grieve the loss of their child.  If there is any solace, it is seeing the memories that they have been sharing today, that clearly show how much each other meant in their lives, and there are happy memories to remember them by.  And it is my hope, that they can still find the ability to celebrate that love today.  Because at one time, this day meant something special in the physical sense, it should mean just as much in the spiritual sense and memories.

Happy Mother’s Day.

In Defense Of Jimmy


Four years after this photo was taken, I was diagnosed with Hodgkin’s Lymphoma back in November of 1988.  Decades later, Hodgkin’s is still considered a rare cancer, and in spite of many figures of celebrity status, gets very little attention, especially compared to the big cancers such as breast, lung, and colon cancers.  Of course, social media was also not much of a communication tool to reach others with the intent to advocate for Hodgkin’s awareness.

I was a nobody.  And as I mentioned, there were many actors and athletes who had dealt with Hodgkin’s Lympoma, yet not even many doctors are aware how to look for and diagnose this rare cancer.  Needless to say, none of those other Hodgkin’s survivors used their celebrity status to either draw attention to themselves or to advocate.  There were plenty of other famous people stepping up and out for the other big cancers, but not for Hodgkin’s.

Then perhaps the most famous person to be diagnosed and survive Hodgkin’s Lymphoma, Pittsburgh Penguins player and owner, Mario Lemieux, announced that he had Hodgkin’s Lymphoma.  I do not recall his staging, or treatments.  But to be honest, I was only hoping selfishly, that he would use his notoriety to bring attention to the same cancer I and many others had dealt with.  We would finally have a “spokesperson” or “face” to get us the help and care we needed.  Yes, selfish I know, but dealing with something that can kill you, can make you selfish when you need help.

Lemieux took leave for treatments, and came back to play.  Of course there was “by the way” conversation of his health issue, but to my knowledge, nothing near the attention I had hoped would be given.  Even today, as I write this, I have no idea of Lemieux”s health or if he participates in any kind of advocacy for lymphoma.

This was our (lymphoma survivors) opportunity.  I was a nobody.  And attention to Hodgkin’s would go back into obscurity.

So, on Monday, after a lengthy absence, late night TV host Jimmy Kimmel returned to the air, with clearly a heavy heart for what should have been a celebratory event.

Kimmel’s wife had given birth to their second child, a son.  He had been born with a critical heart condition.  You can see the seventeen minute monologue anywhere on the internet.  But Kimmel, clearly shaken, had chosen to take the opportunity to bring awareness to several issues, as well as publicly thank those, that saved his son’s life.

I have had my own health issues to deal with my children and hospitals.  And of course, and this is why I am mentioning this, because I understand all too well about heart issues, as I had open heart surgery to treat a late effect caused by treatments for a pre existing condition, my lymphoma.

So, I understand heart surgery very well.  I know the efforts that are taken to save the life of someone about to die.  What I do not know, is what it is like to go from just seeing your son being  born, to rushing to save his life.

I was 42 years older than this poor child.  But I recall the image myself, as well as the confusion of what had just happened to me, and dealing with the pain.

From the moment that Kimmel started his monologue, I was in tears, as is often the case, when I hear stories of others who have gone through similar situations that I can clearly relate to.

Kimmel spent most of the monologue explaining what happened, and even let the audience know that there was a happy ending.  But that did not stop us from seeing how very upsetting and concerning this was, even for a funny man.  He also took the opportunity to thank as many as he could, for saving his sons life, and to encourage awareness to situations like this.

His monologue lasted about 17 minutes.  And clearly he was speaking from his heart.  There is not doubt.  And the thing about speaking from your heart, you speak with your emotions.  And emotions can often be more powerful than the words themselves.  Often times, I find myself not publishing any “raw” or unedited posts, because I do not want to take away from what I am trying to do.  But I am also very well known for speaking or writing unfiltered, blazing with emotion.  And when you do that, you can make some people upset.  And usually, the ones that you upset, are those that just want something to disagree with.

After singing the praises of those that treated his son, Kimmel began talking about the importance of the health care that his son had, and would need.  Today, this is a huge deal as health care dominates our headlines.  Kimmel spoke against our president’s efforts to reduce the NIH budget which clearly has an impact on research and medicine.  He also spoke about the issue of pre existing conditions which now his son had.

As someone who deals with more than a dozen pre existing conditions myself, as a blogger, I can only reach so many to make aware of the needs we have, and the protections we need to have.  But still, I consider myself a nobody.  So count me as one of those, who applaud Jimmy Kimmel, for taking that difficult moment, not only to put his personal life on display in heartbreaking fashion, for using his celebrity to bring awareness of what we need as far as health care.

And for those with a certain political lean who complained that Kimmel used his status to bring evidence to the needs of the American people, too bad.  The House Republicans should be ashamed of themselves for what they are trying to accomplish.  I have written before about the consequences of repealing the Affordable Care Act for me and others.  I know what is at stake because my life depends on it.  Fortunately, I do not believe this bill will be approved, because it is inhumane, and definitely does not lead to America being great.

Mr. Kimmel, I give you a lot of credit for what you did.  I know what it took for you to do that.  And I am thankful that you were able to bring awareness to the issue and needs of health care in the United States.  Ignore Joe Walsh, Michele Malkin, and others.  They are nobody and should be ashamed of themselves for ridiculing you in one of your family’s darkest hours, saved by heroic efforts by great medical personnel.

I wish your son a complete recovery.  Thank you for showing the happy ending.

 

How To Save A Life


Okay, forget Grey’s Anatomy.  Let me tell you how a life is really saved… mine.  Well at least one of the times.

First, how did I get to this particular moment?  To treat my Hodgkin’s Lymphoma (the original life saving event), I was treated with both chemotherapy, and radiation therapy.  It is the radiation therapy that  caused life saving event number two.  Unlike what patients today would be exposed to, I had been exposed to 4000 grays of ionized radiation.  To put that in perspective, that is more than 4 times the lifetime maximum exposure limit.  Mention this to any radiation tech or nuclear power plant worker today and they would cringe.  The fact is, it did save my life.  Unfortunately, it was unknown back in 1989, what doing that much radiation to me would lead to long term.  Even when I was going through my treatments, I barely knew any long term survivors who actually were exposed to worse levels than I was exposed to.

So, anyway, the radiation has had a cumulative effect on me, still does to this day.  But nine years ago, I was diagnosed with a “widow maker”, a blockage of the LAD (the main artery going to the heart).  Radiation had so badly scarred that artery, it was blocked nearly 90%.  So, for the rest of the story, you can go to the page on “Paul’s Heart” called “CABG – Not Just A Green Leafy Vegetable.”  The purpose of this post, is to summarize the extraordinary efforts that were used to save this life.

I was wheeled into the operating room, around 6:30am.  That is the last place that I remember until waking up in the Intensive Care Unit, alone, just my nurse trying to keep me calm.  I had just had a procedure the day before, and though I knew I was going to have a bypass, I was in no way prepared for what condition I was going to be in.  Seeing that I was extremely emotional upon waking up, and going into a full blown panic attack not seeing anyone familiar, I was re-sedated.

Fast forward, as I am known to do, I obtained the records of this experience.  I had to.  The doctor had no one to explain what was done, so that it could be explained to me.  The operative report is three pages long, but clearly, does adequately the skills that were used to save my life.

Once in the operating room, the only thing I had been wearing, the gown, had been removed.  I was covered only by a blanket.  At that point, everything was connected to me, tubes connected or inserted, all to prepare for the surgery.  Prophylactic antibiotics were administered, not just because this was a risky procedure, but because I had not spleen, which puts me at a higher risk for infections.

Then they opened me up.  Because they could not harvest a sufficient vein from my leg, they actually used my mammary artery.  Once they were done prepping this graft, I was put on a bypass machine.  For the first time in 42 years, I was no longer going to be breathing on my own, nor having my own heartbeat.  A machine was going to be doing that for me.  And here is where it got surreal for me reading this report.  “The patient was placed on bypass, cooled, and emptied.”  Emptied?  Yes, my heart was emptied blood, and in its place would be an antegrade solution.  This was all done to keep my body cold, keep my heart safe, so that when I was put back together, the heart would be back to its preoperative condition.

There is a whole bunch of stuff that was done, and when it was, my heart “was allowed to fill with blood”, and after 45 minutes on the heart/lung machine, my heart was jumpstarted.

Of course, there were other things that had to be completed before finally closing me up.  And there was a lot to be done.  But the surgery had been successful.

Why do I bring this story up?  Because I am someone who can appreciate just how expensive medicine can be.  I am extra critical of the insurance industry and their greed.  I am definitely opposed to the efforts of our current government to deal with health care.  If the government had enacted the American Health Care Act, and I had to have this done, I would be dead.  I already have the pre-existing condition of cancer which would put me in the high risk pool, a pool that I would never be able to afford for the care that I need.

And without insurance, I do not have the faith in medicine to put any kind of effort to save my life, knowing that they will never get paid for their work because I would have no insurance.

You want to save a life?  Many lives?  Our government needs to go back to the drawing board.  Perhaps it is time to go with the single payer health insurance.  But the current direction that our government is going to result in people dying.  I have many more pre-existing conditions all created by my original cancer diagnosis.  I would hate to think that my 27 years of survivorship will have been for nothing, having been put at risk for the benefit of politics, lobbying, and corporate greed.

Post Navigation