Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

The Waiting


Christmas Eve = the longest night in the world for me as a child, waiting for Santa Claus to come.

The night before Easter = the second longest night for me as a child, same reason as above, just for the Easter Bunny with my basket of chocolate.

The first day of school… ever.

Getting a drivers license… forever.

The end of school… forever.

Freedom to do what I want to do, whenever I want to do it.  I am still waiting.

Having to wait around the doctor’s office, just to be told that you have cancer.

Waiting to hear the words, “Your cancer is in remission.”

Waiting to reach the one year anniversary of your remission of cancer, and second year, fifth year, tenth year, twentieth year.

Now I am waiting to reach twenty-five years cured of my cancer.

Waiting for the paint to dry and the pot to boil.

Waiting to be approved to be adoptive parents.

Waiting for the sixteen hour non-stop flight to be over.

We can hear the children down the hallway.  What is taking so long to bring them to the conference room to be placed in our arms.

Waiting for daughter’s first steps.

Waiting in a dazed state to go to surgery for my first ever open heart surgery.

I hate sitting at home doing nothing.  I want to go back to work.  I still need time to heal.

Waiting for the new season of Newsroom on HBO.

My DVR has a pause button.  I can make the television wait for me.

Phone calls.  Can you hold please?

I have to wait several months to see a specialist.  They know what is wrong and time is of importance for best chance of survival.  A three month wait.

Waiting in the waiting room.  Then I wait so more in the exam room.

Scans and scopes, scans and scopes, scans and scopes.  Results pending.  More waiting.

I do not mind waiting for my daughters to grow up, graduate, get married, have children.

Bravery


Bravery is defined in Merriam-Webster as courage.

I decided to look this up today.  A co-worker was having a conversation with me, coming to find out everything that I had been going through in just the last several weeks.  And his comment to me was, “You’re really brave.”  And I looked at him like I was almost hoping for a hint of sarcasm or even some foolery.  But for once, he meant it.  And then he repeated it, “You are brave.”

The first time I heard it, I was uneasy.  I was hoping the conversation would end, but when he said it the second time, I knew that I had to deal with it.

In my life, I am hard pressed to find even one instance in my life where I could be defined as brave.  I have never fought in any armed service.  I have never broke up an attempted bank robbery.

But when people find out that I have beaten cancer, had open heart surgery, two cases of pneumonia (one with sepsis and the other double pneumonia), kidney stones, all kinds of late issues from my treatments, I get, “You are brave.”

When I think of “bravery”, I think of men and women who run into a burning building, police officers who put themselves in harm’s way every day, an airline pilot flying a human missile loaded with hundreds of lives, a teacher shielding her students from a lunatic’s bullets.

No, I am not brave at all.  I simply did what I had to do.  I have two beautiful daughters who I know love me so much, it would devastate them to lose me.  I have no choice but endure if my body and mind are capable of doing so.  In the second half of my life, I have met so many people who have faced relapses of their cancer, multiple cancers, those who struggle with their survivorship from the treatments that saved their lives, and sadly, those who lost their battles.

I have always said that I would not go through anymore treatments if my Hodgkin’s Disease came back, that is, until my daughters came along.  One of my dearest friends has faced nearly 50 surgeries all having to do with her surviving her cancer treatments, this along with a battle with a secondary cancer.  With so many close calls, not just near death, or in some cases, flat lines, she continues to trudge on to this day, not only a proud mother, but the happiest grandmother, something that she never thought she would ever see.

I do not know how she would react if I told her that she was brave.  I know on occasions when I have talked with her on the telephone, I have told her that I was speechless for words to how I felt with her continued struggles and survival.  It would be easy for her to give up I think.  She has been through so much.  But the fact is, she has not given up.  It is with her example that I can never make that decision either.

And so, I am watched periodically, whether month to month, quarterly, or annually.  There are things that have been identified and can be dealt with.  I go to my appointments not afraid, but confident in my caregivers that things will be dealt with sooner than later.  That is not bravery, that is trust.  As for the all-of-a-sudden stuff like the pneumonias, the cardiac issue, some kidney activity… a little luck does not hurt either.

A Relay Of Life


There is one thing that drives my doctors bat-crap crazy, is the schedule that I keep.  My friends and family enjoy it because it personally affects them without any regard for me, unless for some reason, I am not able to make it.  An entire weekend on four to five hours of sleep is not unheard of.  You see?  I am a guy who does not like to say “no” to people, and then, when I do say “yes”, I am a man of my word.  I will be there.

There has only been one exception in my life, when I had to have my open heart surgery.  I had a wedding that I was supposed to disc jockey for just three days later which clearly I was never going to make.  I actually recalled all of the bride’s information from my bed in the ICU.  With tubes down my throat assisting me breathing so verbally unable to communicate, I spelled out everything about my client to my wife, and she was able to help the bride locate another source of entertainment.  For the record, that story had two happy endings, my survival, and her wedding went off without a hitch and a new disc jockey.

But from that moment on, and learning that my lifestyle was going to go through a major change, recognizing myself as a long term cancer survivor clearly living with severe side effects, common sense should have told me that I need to slow down.  But instead, I found the opposite effect.  I developed a need to prove that I was even more reliable.  It was one thing to refer to myself as a cancer survivor.  It is another thing to be called a heart patient survivor.  Each thing by itself results in survivorship.  But together, it is called living, not just surviving.

A relay race is a competition with several legs in it, usually consisting of several runners, swimmers, or whatever they type of competition it may be.  In the case of my life, my relay has become about stages of life:  a battle with cancer, survival, issues with late effects, survival, and hope.  These things make up my relay of life.

Many years ago, the American Cancer Society developed a fundraising program called, The Relay For Life.  This Relay over the years has become one of the biggest fundraisers in the world of cancer, helping to raise millions of dollars toward research for new cures, support services, and other life needs of cancer patients and survivors.  This event typically runs for 24 hours consisting of teams who take turns, in relay fashion, walking a track (typically a school running track) during that 24 hours.  Throughout the event, there are vendors, and the teams themselves have “themes” for their teams, and may have miniature fundraisers at their location to help raise funds for their teams.

The other outstanding events of this evening are in honor of cancer patients and survivors, and in memory of loved ones lost.  Luminaries, lit candles inside of white paper bags light the entire track with the names written in tribute to those who are battling cancer, have battled cancer and won, and those who have lost their battle to cancer.  These two ceremonial laps are the most overwhelming, meaningful, memorable activities of the night, as everyone is reminded why they are participating, and the importance.

In preparation for the Relay For Life, many teams hold other fundraisers prior to the big event itself.  I have long since retired from disc jockeying, but I am known to dust off my equipment for those holding fundraisers to help with this event as it of course holds very special meaning to me.  Some may hold carwashes, colored bracelet sales, or “beef and beer” gatherings which are just a fancy way of saying “party”.  When it comes to most charities, I have always donated my time because to me, fundraisers are all about raising funds, not spending them.  And while some businesses may get “fundraised” out, at the worst, I will offer at least an extreme discount to absorb any cost I may have, but in general, most of my charity gigs are done as that, charity.

Of course, things have not changed since my heart surgery as far as issues that have arisen with my long term survival.  Physically, I no longer consider my body reliable as I have had so many issues come up, several without warning, that have incapacited me for a decent period of time.  But because I no longer physically push myself, over time, I have lost a major part of my physical strength, leaving me unable to lift my equipment anymore, without assistance anyway.    I have to laugh, when my doctors remark about how strong I am compared to other Hodgkin’s survivors.  And I can recognize that, except I am nowhere near as strong as I used to be.  Emotionally, I am slowly coming to the realization of what is important, what I can do, and what I cannot.

So I have cut back on requiring activities that expect me to push my limits of strength as fatigue just wipes me out.  Endurance is becoming an issue as I can no longer try to squeeze in 85 hours of activity into a 96 hour weekend, just so that I can keep everyone happy who have come to depend on me, and know me for getting everything done.  The last two times that I pushed myself like that, I ran myself so down, that I made myself susceptible to two bouts of serious cases of pneumonia.  You would think I would learn from that.

However, my altruistic personality being what it is, and my strong support of the Relay For Life, I did agree to disc jockey this fundraiser for a team that will be participating in our local Relay, just two days after undergoing some internal testing.  The day before the event, my body was telling me that it was tired.  And clearly, the next night would require a lot of me physically.  But instead of telling the organizer that as feared, I was not up to it, I sucked it up and did it anyway.  When I got home, as happens often, I just collapsed with fatigue.

And so my own personal relay continues, passing the baton from one event to the next.

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