Paul's Heart

You Could Say “The Honeymoon Was Over”

The following is a continuation of my series on my 30th anniversary of remission from Hodgkin’s Lymphoma.

Considering the major detour in our plans for getting married, my battle with Hodgkin’s Lymphoma, everything went as it needed to go.  The plans for the wedding.  Thirty radiation treatments.  And the all clear from the oncologist.  I was given a follow up appointment for when we got back from our honeymoon.  I got married (my first time), and we had a fun time on our honeymoon.

A common fear that nearly all of us survivors have once completed with our treatments, is the fear of recurrence, or relapse.  In other words, “it came back.”  The hint of a symptom we had during our diagnosis can send us off of a cliff of uncontrollable worry.  We barely get to celebrate our remission before that twisted concern already attacks us emotionally.  For me, and I do not know why, I did not have this feeling.  I felt the follow up was just a pain in the ass, taking up my time.

I had gone through a CT scan before, so this was not going to be a big deal.  And I had no reason to expect any news differently than my last appointment.  Except for some sunburn on my trip, I had no issues with my body as far as any symptoms or changes.

But the phone call I got a week later with the results sent a feeling of paranoia through me like I had never felt before.  “Mr. Edelman, we have the results of your CT scan.  Dr. M would like to discuss those results with you.”  Yep, if it was nothing, I would have been told so right at that moment.  I was not going to be made to come in just to be told “all is good.”

Dr. M:  Paul, the CT scan picked up new disease below your abdomen.

(It needs to be noted that with my original diagnosis, any evidence of Hodgkin’s had been limited above my abdomen)

Dr. M:  I cannot determine if this is actually a new onset, or if your Hodgkin’s has recurred, because of how soon, but we are considering this a recurrence.

I had relapsed.  FUCK CANCER!

I have been counseling cancer patients for nearly three decades and one thing that I always tell my patients is that you either need to have an extra set of ears at the appointments (we did not have phones to record conversations back then).  There is no doubt that I missed some very important discussion after Dr. M had told me about the relapse because my mind had taken me in a totally different direction.  It would have been normal for me to once again revisit the “denial”stage, but I did not.

Self:  It was your choice.  This is your fault.

Of course, these two sentences are totally irrational, but at the time, it was appropriate, and earned.

Under normal circumstances, oncologists will treat with chemotherapy and likely followed up with radiation.  Historically, Hodgkin’s had been treated with radiation alone, and with success.  But vanity played a role, as I was going to get married in less than four months from my diagnosis and staging.  Radiation would show the least amount of effect and I would be done before my wedding, and well, I would be in the middle of my chemotherapy at the time of my wedding, delays were not possible in the treatments.

Now I would begin my second guessing.  While I would never know if I would have relapsed with just chemo, at that time, I would have still be going through chemo.  But clearly, the decision was mine, and it was made.  It was my fault.

Who knows how much conversation I had missed at that point, my mind wandering.  But when Dr. M finally regained my attention, I heard the words that I had feared all along.

Dr. M:  We want you to start on chemotherapy as soon as possible.

So, back on the treadmill I went.  There were things that needed to be done to prepare for this next phase.

My 30th National Cancer Survivors Day

Today marks my 30th celebration of National Cancer Survivors Day.  A cancer survivor is recognized by most agencies, not just someone who has beaten cancer, rather, no matter what stage a person is in, from diagnosis to treatment as well.  From the moment you hear the shocking words, “you have cancer,” you are immediately put into a survivor mode, to take on this horrible beast.

From the moment I was diagnosed, I needed more than just to hear, “we can treat this” or even “we can cure this.”  I wanted proof that I could live the life I was expecting to live before cancer, at that immediate point, I had only been thinking of longevity, not quality.

Almost every cancer patient hears two different statistics.  The first, the percentage of survival rates and succession of remission.  The other, a 5-year milestone that nearly all of us are told, this is when we are considered “in remission,” or many of us might even consider ourselves “cured,” though doctors really do not like to ever use the word “cured.”  And though discrimination is illegal, at one time, just decades ago, that 5-year mark was often used as a factor in approving for employment, insurance, and many other needs and events in life.

But I needed more than just hearing that Hodgkin’s Lymphoma carried one of the better success rates of survival, at that time, thirty years ago, 85%, today, well over 90%.  I wanted to know or meet others who had survived a long time.  An uncle told me of a friend he had that had survived, and was still living more than three decades.  Carl Nelson, a football player for the New York Giants was also a survivor of Hodgkin’s.  But this was not good enough.  I was never going to meet these people.  I needed to see with my own eyes.

Over the years, I would get the opportunity to do that and more.  With the help of the internet, and various support groups, I would eventually meet survivors of all lengths of longevity, FROM ALL OVER THE WORLD!

This snapshot above, was just posted yesterday on my Facebook feed.  One of my fellow survivors just hit his fifty year mark.  As the years have gone by, I have not gotten to see many posts like that.  Most of them are all patients either freshly completing treatment, or within their first or second decade of survivorship.  I was aware of many who had survived longer than me, even one as long as 70 years (his screen name was “stillkickin”).

But my friend who posted this great announcement, has gotten so many replies from others who are well into their 30’s and 40’s as far as survivors, more than I had ever seen before.  So, yes, even someone like me, almost thirty years out, can still be inspired by someone else’s survivorship.  I could only wish that others had the ability to see this amazing post.

But this day is always bittersweet for us, just as our anniversaries.  While I cannot speak for other cancers, for those of us who were treated for Hodgkin’s Lymphoma, especially decades ago, many of deal with late effects caused from the treatments that saved our lives, treatments that had never been studied for long term effects, because we were not expected to live longer than five years according to that marker.

And then of course, there are those, that we said goodbye to, having either passed away directly to their cancer, or the side effects of the treatments.  In my family, I am the only survivor out of six in my family still alive from their cancer.  And I have said goodbye to too many friends, young and old, cancer does not discriminate.

But if there is one thing I do believe, even those that have passed on, would not want us to be sad on this day, a day to celebrate surviving cancer.  And no matter how long from the diagnosis, every day after that, is a day you have survived, and lived your life.

So, let the people in your life that you know have faced cancer, that you are glad to be able to wish them, “Happy National Cancer Survivors Day.”