Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

04 Oct 2018
1 Comment

I Am Glad I Did, Or Glad I Did Not


This year marked my 35th year high school graduation.  To be honest, I never thought I would be around to say that.  To be honest, I never thought I would see it.  Sadly, I will not be able to attend the reunion for several reasons, but not because of what you are about to read.

As I said, I am not travelling back home for the reunion of my graduating class, but that has not stopped me from reading and participating in the chatter as my former classmates prepare for what will be a memorable and fun gathering, and for those fortunate enough, a great weekend.

A classmate who admittedly though I recall, yet never knew, provided me with something I often need here, to get me to write when I have writer’s block, a prompt.  And she has prompted quite a few entertaining conversations.  But this one really struck me.  She wrote about an event in her life, that could have ended very tragically, had she not done things differently.  She was also thankful for those who had chosen their paths, because they made a difference in saving her life.  So with that, here is my post.

I am glad I…

went for six second opinions when I was told I had cancer, Hodgkin’s Lymphoma.  Talk about major denial.  I was convinced I had a sports injury and only until I saw that 7th doctor, was I convinced that I needed to deal with cancer, head on.  Why was I glad?  Because up until that moment, I was a healthy twenty-two year old, who refused to accept and believe what I was faced with.  I would have died.

I am glad I did not…

go through with more radiation treatments.  As far back as the mid 90’s, very little was known by medicine as to the true damage done by radiation therapy, or should I say, the extreme amount of radiation therapy patients were exposed to.  Even today, it is not taken completely seriously by everyone except for those who work in radiation-related fields, or long term survivors like myself.

Originally I was treated with 4000 grays of ionized radiation, followed by chemo therapy.  By the 4th cycle, I was pronounced in remission, but necessary to go through with the full 6 cycles.  After, I was to choose between an extra 2 cycles of chemo, or another round of radiation as preventative therapy.  I figured that as I was already going through chemo, what the hell was 2 more months of it?  Little did I know what would happen to me, or rather, not happen to me because of that decision.

I am glad I…

reached out to my primary doctor in April of 2008 about a nagging “chest tightness” that  I had been experiencing four months already.  And I am really glad she made the decision and call herself, to order a nuclear stress test, not something done on a health 42 year old.  Had she left it up to me to make the appointment, instead of being seen just days later, I probably would have been scheduled weeks later.  And I most likely would be dead.

I am glad I did not…

walk out of the cardiologist office, never to return.  He had given me news that I was not prepared for, and honestly, made as much sense as telling me I had cancer.  It could not be.  Having that appointment scheduled as soon as it was, got me put on a table to undergo emergency life saving open heart surgery for a “widow maker” bypass.  And the name is not a joke.  You die when you have this type of blockage.  As my cardiologist told me, I am the “luckiest man alive to have prevented his fatal heart attack from happening, not if, but when.” (see my page “CABG – Not Just A Green Leafy Vegetable.”

It was discovered that the radiation therapy that I was exposed to, was the cause of this damage to the main artery, blocking it 90%.  As I mentioned earlier, I opted for more chemo instead of radiation.  If you mention the amount of radiation I was exposed to, like many of my fellow survivors, to radiation techs, nuclear power plant operators, or anyone with knowledge, they will tell you this amount of exposure is horrific.  And yet, I know people who were exposed to more, even double what I was exposed to.  I can only imagine what I would be dealing with had I opted for more radiation as my health issues from both my chemo and radiation treatments are bad enough.

I am glad I…

reached out for support, not just from doctors who at the time did not know about us long term survivors and all the complications we face, but from other survivors.  It is these other survivors, who steered myself, and others to get the help we need.  It was this support that took me to Memorial Sloan Kettering Cancer Center where I met the doctor that would make a promise to me, to help me manage (these issues cannot be reversed) all the complications that I faced today.  Today, the things I have learned have been passed on to my doctor who now has more knowledge to help me survive hopefully for decades to come.

I am glad I did not…

walk away from what I faced, 30 years ago next month.  Not only is it my 35th year graduating from high school, but I am approaching 30 years since my diagnosis.

I am glad I…

made the decisions that I did during my life as a cancer survivor.  It has made me the fighter that I am today.  I had to.  I faced three more life threatening events related to my treatments since my cancer days, emotionally and physically, my decisions, intuition, and determination I believe is why I am still here today.  The hard part for me though, is even as I can express my appreciation for surviving this long, my heart aches for everyone that I have met throughout my life, fellow cancer patients and survivors who have not been as fortunate.  It is a guilt that I carry every day.  Why them?  Why not me?  What was so different?  Why could not they be given the chance I was?

Ultimately though, and thank you to my high school classmate,

I am glad I…

got this chance…

 

Posted in Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart
15 Sep 2018

After Florence – Been There Done That


It is hard to fathom having to deal with such a severe weather event for as long of a period of time, even when it is scattered across many states as it progresses.  But Hurricane Florence has proven to be even more extreme than that, practically hovering over the states of North and South Carolinas for over three days already.  The media footage as well as photos posted on social media are nothing less than powerful to see.  And if you have ever gone through an initial impact of a hurricane, within the path of the eye of the hurricane or not, it is not an experience you will ever forget.

“Paul’s Heart” crosses over many ways between my world of cancer, adoption, medical rights, family, and such.  And right now, many of my fellow cancer survivors, as well as long time friends, are dealing with Florence right now, and will for some time.  But if there is one thing my fellow cancer survivors rely on me for, it is for my encouragement that I can provide based on what I have been through, and to believe, that things will get better.  More importantly, it will take time.  There is no such thing as an “overnight” cure.

By now, the preparation for the storm is long over, from evacuations to just hunkering down.  People are now in the “enduring” stage.  This is a frightening enough stage because most likely, many are without power.  And without any kind of “cell” coverage, may not know the timeline of when this storm will eventually be done.

My hopes, are that everyone who remained, are surrounded by friends and family, supporting each other.  It is during this time that we really appreciate the conveniences of home, because for us, we no longer have those conveniences.  During the storm, you rely on your resources that you gathered to get through the storm.  No cooking.  No watching TV.  No light once darkness comes.

The hardest part will be yet to come however, and that is when the storm has passed.  The city or town you have always known has been decimated.  You now truly know what it is like to start from the beginning.  The good part about this, is that you can see the daily progress being made in recovery efforts.  Patience will be tested as you wait for electricity, shelves to be stocked in grocery stores for even the most necessary items such as ice, water, and bread, but remember, perishable items in stores will have to be replaced and it will take time to restore that normalcy.  And of course, the clean up will be immense.

But safety must still remain your focus.  Water will not be safe as it is likely water treatment facilities have been compromised with bacteria laden sewage from the immense flooding.  Power lines will still be submerged.  With the ground so saturated, it will take nothing for more trees to fall with even the slightest breeze.  Of course there will be that curiosity to get out and look at the destruction.  But it is completely different once the sun has set, and there is no lighting from buildings and streets to guide you.  And forget about being able to see water on the roadway as you approach a flooded situation.

There will also be those who evacuated.  It may be days, or even weeks before you can return, or even be allowed to return.  But you need to understand, just as I warned many of my friends last year, though their homes may have been spared, or had minor damage, there was nothing here in the immediate aftermath for them.  We no longer had luxuries.  Hardly anything was open for business and anything that was able to open, was mobbed as soon as word got out.

Just as those of us got the gradual improvements being made from nothing, it is a different story for those who return some time after the storm has passed.  The shock of the damage seen can be overwhelming.

The important thing following an event like this, whether you stayed or evacuated, is to have patience with each other.  First responders will do all they can.  Local governments will do everything they possibly can to establish some sort of normalcy.  Clean up will take a long time, months, many months.  And damage, that will take a long time to repair, as my building itself is only now having its roof repaired from Irma last year.  Life will return to a sense of normal activity.  But going through a storm like this one, or others, will always leave you with an appreciation for what you have, and what is important to you.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects | Leave a comment
07 Sep 2018
2 Comments

Talking To Children About Cancer


My children were long from even being thought of when I was diagnosed with Hodgkin’s Lymphoma.  But once I had to begin dealing with the late developing side effects from the treatments that I received for my cancer, actually forced to deal with these side effects, even though my daughters were quite young, I had a decision to make.

It was over 10 years ago, my daughters, then aged 3 and 5, had no choice.  They were now aware that their Dad, had at one time, faced cancer.  Though their immediate attention was the fact that I just had open heart surgery to repair long term damage from excessive radiation to my heart as part of my cancer treatments.

Later on in elementary school, my daughters would take up causes for “Hodgkin’s Lymphoma” because their dad had it.  It was cute.  Though they really did not have a concept of just how serious my situation was, they knew Hodgkin’s was a cancer, and I had beaten it.  And up until that time, that is all that I had told them.

As a counselor, I have often been asked, “when is the right time to tell a child?”  The truth is, there never is a right time.  No matter what the issues, a child should always be left to be a child.  There will be plenty of time for a child to act and talk like a grown-up.  Unfortunately, not when it comes to cancer, or any other serious diagnosis.  Which is why, it is so important that you remember, they are children, even if faced with the fact that their parent (or other loved one is facing such a horrible disease).  Keep the information on a level that they can understand, and without the somber tone of drama often associated with talking about cancer.

Kids will get it.  They understand a lot more than we give them credit for.  And let’s face it, times are a lot different from decades ago, when a cancer diagnosis was a definite death sentence.  With social media, survivors are available to give hope, where once there was none.

As I mentioned, my daughters are all too aware how I got to this point of survivorship in my life.  They are not aware of all the details of my health issues that I face.  Over the summer, we began the discussion that I did not know how to begin, that I had Hodgkin’s Lymphoma.

Again, keeping it at a level of understanding for young teens, they learned that it lasted a period of time of over a year and a half.  They learned that I went through chemotherapy and radiation.  And now they have learned that it was those treatments that caused the many health issues I face today.

So, in summary so far, they have learned that I have been around a long time having faced a deadly disease.  Hodgkin’s Lymphoma is considered a “rare” cancer, and thus, often hard to diagnose.  How rare?  According to the American Cancer Society, just over 5,000 new cases get diagnosed every year.  Compared to over 320,000 breast cancer diagnosis every year in women (according to breastcancer.org).  And there are over 140,000 cases of colon and rectal cancer diagnosed every year according to the ACS.

Oddly, the survival rate for Hodgkin’s is one of the higher rates, at around 86%.  One would think that a cure rate would be higher for a more prevalent cancer, but in the case of Hodgkin’s, it is not.  The unfortunate thing about the survival rate for Hodgkin’s, is that it has stayed around this number since 1988, when I was diagnosed.  There are still 14% that do not survive.  How is it possible, to be so close to a 100% curable cancer, things have not improved?  Sure, newer treatments have been discovered, and some may be safer to use, but yet, the survival rate has remained the same.

In a year and a half, I will hit my 30 year mark of survivorship.  My daughters are very aware of how far I have come now.  As one of my daughters has put it, “you are a fighter.  You always have been to me.  You don’t give up.  You will always be one of the strongest people I will ever know.”

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

Post Navigation

← Older Entries
Newer Entries →