Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2016”

Needing Inspiration


When we are diagnosed with cancer, besides wanting to hear the words remission, the next thing we often look for is, well, not really a “thing”, but rather others who have faced our similar cancer, and have survived not just initially, but long term.  And if you are lucky enough, you might just actually meet others.  I cannot say I was lucky that way.  We did not have the internet back in 1989, and though I was aware of 3 others who were being treated for Hodgkin’s Lymphoma like me, I never was able to meet them.  Unlike today’s chemo suites, our chemos were given individually, isolated from each other.

As time went on, and my discovery of the internet, I soon learned that I would meet others who had survived not only Hodgkin’s, but other cancers.  Soon, as we discovered each other, many of us would arrange to meet up in small, unofficial reunions or gatherings.  For many of us, these meetings meant a lot more to us than what we could have ever imagined.

A lot of us long term survivors deal with a lot of late side effects courtesy of our radiation and chemotherapy treatments.  But when we often feel alone, isolated because either doctors, our families, or our friends, are unable to understand how we are feeling, or what we are dealing with, meeting another survivor, we know that we are having a conversation with someone who “gets” us.

Over my 26 years of survivorship, I have met many, many other survivors.  Some are in their first decade, many are in their second and third decades, and there are even some that are well into their fifth decade or more of survivorship.  But each and every one that I have met, has had their own unique history of side effects, health events, and if that were not enough, normal expected and unexpected mortality challenges.

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To be honest, I have no idea the actual number of patients and survivors that I have met over the years.  This past weekend I officially met another one though.  I got to meet her family, husband and children.  And one of the few times I noticed this, a reaction from her husband, who seemed to appreciate the fact, that his wife was meeting someone who “got” not only what she has had to deal with, but as a caregiver, challenges for him as well.

It took longer for me to drive to meet them, than we got to visit and talk.  But I believe, that she would feel the same as I do, that our society of survivors exist, support, and survive because of our need to know we are not alone, that others do understand what we have been through.

I expect to be around a long time yet, and I imagine I will meet many more.  I look forward to it.  If you are ever in southwest Florida, look me up.

Got Any Raisins?


Listening to a local radio station the other day, the conversation was about “pickup lines” that one of the co-horts of the radio show used to introduce himself to women:

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“Do you have any raisins?”  The unsuspecting female responds, “no.”  He fires back, “then how about a date?”  There were many more lines that were far worse than that.  It did not matter how much the jerk, I mean jock, protested to his peers that the lines actually worked for him.

I have also watched many “on the prowl” and the methods they use to meet someone special in social situations.  It is almost like a game, observing whether someone is accepted or goes down in flames.

But for the cancer patient, survivor, or anyone dealing with a chronic and/or severe illness or physical issue, the desire to be with someone who will accept them for what they truly have to offer, their heart, companionship, there is no place for games or tacky lines.  We have something much more of a concern when it comes to dating, telling someone that we had (or have) cancer, or some other serious health issue.

Two years ago, I had a story published in the Memorial Sloan Kettering Visible Ink book, about when is the right time to tell someone that may have romantic or relationship intentions with, that you are dealing with illness or permanent injuries.  You can find it under “pages” on this site titled, “What’s Your Sign?  Mine Is Cancer.”  But before you even get to the actual conversation, you have to be able to find that someone.

Look at that last sentence, “have to be able to find…”.  I honestly believe that is where the main problem arises.  As a patient, I believe we put too much pressure on trying to find someone, instead of just letting it happen.  We often feel a need to force ourselves into a social setting that we are not comfortable with, or allow ourselves to be set up blind dates, or even searching on the internet on the various dating websites (and I am not saying there is anything wrong with that, if that is what you choose to do).

I will admit, I have not been single for any lengthy period of time following my cancer diagnosis.  I married following my treatments.  My fiancé was aware of my cancer, but the marriage did not work out.  Shortly after my divorce, I met who would be wife #2, who was familiar to me, as we were co-workers and friends.  We were able to get the awkward “familiarity” phase out of the way, more importantly, dealing with permanent relating to my cancer history (being unable to have biological children).

But during that second marriage, my health took a much more complicated turn, as late developing side effects from my cancer treatments began to surface leading to multiple hospitalizations and major surgeries.  And of course, later on, the end of my second marriage.

We want to give benefit to the doubt, that when we meet someone, in spite of what we have been through, that a person can look past our health issues.  And it does not make that potential suitor a horrible person if they cannot handle what we live with on a daily basis.  My first wife wanted me to just “move on.”  I really cannot explain what happened the second time around.  But both times, it was my hopes to settle down, get married, and have a family.  I was willing to just look and accept what their interests were as my own, putting my own world behind me.  In reality, my world was going nowhere, and several times reminded me that I still needed to pay attention to my health issues.

Admittedly, for the first time in my life, I was not looking for any relationships, in fact, I was not even interested in dating.  But over time, following the filing of my divorce, instead of me looking, someone found me.  Okay, we found each other.

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We met under very abnormal circumstances.  But when it comes down to it, and I should not have been surprised by it, if I were going to meet someone, have to explain to someone my extreme health issues, and then more importantly, not only allow my heart to be open again but to be accepted and allow myself to be cared about, it was going to come from what my world has become.

Now there are a lot of cancer patients and survivors who say that they do not want their life defined by their cancer.  But in reality, who better to understand your needs than someone who has been in similar situations.

So after I filed for my second divorce, I did not set out to date.  But what I did do, was continue to build friendships, renew old ones, from a very familiar world to me, one that I felt comfortable.  And yes, it was my world of Hodgkin’s.  Far from the likes of “Plenty of Fish” or “Match.com”, in time, what started out as support for each other, bloomed into a friendship, and then unexpectedly blossomed into something that neither of us will give a name to because we do not know what to call it.

I do know this, I have found someone, and she has found me.  And we both agree, before anything else, we are truly best friends.  We respond to each other’s needs.  We treat each other with respect.  We understand when one is not feeling well.  We know there are things that need to be paid attention to.  But we also care about each other.  We are also not afraid to advocate for each other.  And when it comes to dealing with my health issues from my cancer past, no one understands me more than she does.  And she supports my need for the medical care I must have.  She also is there to force me to remember my limits and does not allow me to go beyond them.  I know that if when I wake from either a surgery or procedure, her face will be right in front of my glossy eyes.

This was not something that I planned.  It just happened.  Neither of us were looking.  Both of us could have been looking, but we were not.  And as the friendship grew, I did not have to worry about the next step, telling her that I had cancer, and all these other late health issues.

And about living my life defined by cancer, we do not do that.  No matter what label we give the relationship we now have, it is truly about two special people who came together, and both of us are there for each other to deal with each of our own cancer experiences.  But we are not defined by them.  We take each day, one at a time, and what that day gives us.

26 Years And Counting


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Today has been an emotional day for me, a humbling day, an inspirational day.

On March 3, 1990, I received my final chemotherapy treatment for Hodgkin’s Lymphoma.

But unlike that day, which was shared only with my oncology nurse, today, as I announced the 26th anniversary of my remission date on my personal Facebook page, I heard from so many who offered me congratulations on my survivorship.

It was not just friends and family that I heard from either.  Because of my involvement across the internet with cancer support, many of those who I have counseled and even more, just other observing survivors offered me congratulations and well wishes.  And as humbling to share this day with so many, it was even more inspiring to hear from other survivors who have beaten Hodgkin’s even longer than I have.  I heard from people thirty years out, forty years out.  And I am even aware of survivors well into their sixth decade.

Surviving cancer is a big deal.  Surviving decades is an even bigger deal.  I realize what my survival means to me, to my daughters, to my family, and to my friends  I know what my survivorship means to other survivors who look at me and say, “I want to live a long time, just as Paul has.”  The truth be told, with my survivorship has come a lot of loss as well.  I have said goodbye to many who have been long term survivors who have succumbed due to issues created by their treatments, just as I deal with.  And I have said goodbye to those who have been unable even make it through remission.

So as it goes, I recognize today.  I do not celebrate it.

As always, I will always advocate for better and safer treatments.  I will always push for protection from discrimination because now that people do survive cancer, they deserve to be treated no differently than those who have not heard the word cancer personally.  I will continue to share information and help to educate patients and doctors because I truly believe that it is survivors who have pioneered the long term protocol we  currently have today.

Yes, today is a big day for me.  I know that.  But there is so much to do yet.

Thank you all for your support, and see you next year (for the anniversary that is).

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