Paul's Heart

Life As A Dad, And A Survivor

An Observation On Long Term Cancer Survivorship

As soon as I had completed my treatments on March 3, 1990, 30 YEARS AGO this upcoming March, I was prepared to close the chapter on my life that dealt with cancer.  It was done.  All I had to do was get through some follow up appointments for the next several years, and that would be it.

It was not joke what I went through between the chemotherapy and the radiation, but I did get through it.  And I was grateful for that.  It was all that I ever wanted.  The reality however, my body was damaged goods, not being able to do something as simple as donate blood or body organs due to the toxicities.  But still, I wanted to help.

I discovered a new pilot program called “Cansurmount” starting with the American Cancer Society.  The concept was simple.  Match a cancer survivor with a current cancer patient, and give peer-to-peer support.  As a cancer patient and survivor, an opportunity to meet or talk to someone else who has gone through what you have gone through is often more beneficial than common psychotherapy, because you are being helped by personal experience, not just someone in a suit and degree.

The program was slow to develop, so along with seeing other Hodgkin’s patients, I was also soon seeing patients with other types of cancers.  The program no longer exists, but I continue my efforts to help as many as I can to get through their cancer fights with guidance and emotional support.

It was during my initial year of remission, that I was approached by a woman, another survivor of Hodgkin’s Lymphoma.  Her name was Linda Zame.  And she was not just a survivor of Hodgkin’s, she was a long term survivor.  She had told me about a “listserve” of long term cancer survivors that she felt would be good for me to join.  I was touched.  But really, I was only months just having finished my chemo, hardly a “long term” survivor by definition.  She argued that my length of survivorship did not matter, I needed to be put on that list.

I went to the ACOR web page (American Cancer Online Resources) and signed up for the email list of long term survivorship of cancer.  It did not take long before I was shaking my head, “what the hell am I doing on here?”

Yes, this list was filled with long term cancer survivors.  But it was not a “happily ever after” web site.  These people had health issues caused by their treatments, and many, had nowhere to turn.  Medicine was not prepared for people who would live long enough after cancer, so studies were never done to see health issues that would develop (late side effects), and worse, how to treat them.  I was done with my cancer.  This site had nothing to do with me.  And off I went.

And then I got back on, around my anniversary, just to announce I had gotten through my first anniversary, and was clearly lucky not to have any of these issues.  But the site had not changed.  And again, off I went.  This cycle went on for several years.  And then I read about someone, treated around the same time as me, and was around the same age as me.  This was exactly the criteria I had been looking for to gauge my survivability.  But “Tammy” was not just like the others on the site, her issues were so extreme.  And worse, no one seemed to be able to help her medically.

I stayed on this site every since.  And during that time, Linda, would constantly be on me about “following up”, especially getting a colonoscopy, which to me seemed ridiculous because I was not even twenty-five years old.  But Linda knew what she was talking about.  She had Hodgkin’s Lymphoma, but was also dealing with colon cancer, most likely related to her exposure to the treatments for Hodgkin’s, known to have the potential to cause a secondary cancer.  Of course, I scoffed off the recommendation as unnecessary.  I was healthy.  I stayed healthy with no issues, year after year.

My fifth year in remission, also brought me the unofficial release from my oncologist.  I stopped getting reminders for my now annual follow ups, so I took that as my release.  I was done.  No more cancer for me.

I continued my efforts to reach out to those dealing with cancer.  Hoping to be that inspiration to others, “you can do this.  Look at me.”

Then in April of 2008, reality hit me, in a huge way.  I was dying.  I just did not know it.  My treatment history caught up to me with a “widow maker” scarring of my main artery to my heart creating a 90% blockage.  It was not a question of “if”, but when.  But clearly, could have happened anytime.  I had symptoms for over four months, just did not realize what was going on.

And with that, I became one of “those” from that web site, dealing with the sever issues also.  I was now “all in.”

Now I was going to experience the many frustrations of these other survivors as well.  Where do you turn to for care?  If doctors were not educated about us, how do we find out who can treat us?  Or is it a crap shoot?  At the time, there were only three or four known facilities, Memorial Sloan Kettering Cancer Center, Duke University, and Stanford University I know of for sure.  But there was no way for me to get there.

Again, Linda chimed in.  “Don’t let economics determine your care.  If you have the insurance, find a way to get that care.”  And I made my first appointment with Sloan Kettering.  You can see my many experiences there on this blog, so I want to keep moving forward on this particular story.

This was a game changer for me, not just in my care, but also in the support that I offered to other patients, and now, survivors.  Progress had been made in treating cancers, especially Hodgkin’s Lymphoma, but medicine was so far behind in caring for the long term survivors.

This ACOR list serve became a critical communication tool to teach and inform other survivors that there was help out there, if they were able to find it, and get to it.

But just like progress, one of the main problems in dealing with our late effects, was not in diagnosing the problems, but the care for them.  Many of us would go in for corrective surgeries that were diagnosed, but would shockingly die following the procedures.  We were able to get properly diagnosed, but the after care lacked because again, medicine was ill prepared to deal with our complicated bodies, especially when it came to immunity issues.

In the late 1990’s and early 2000’s, I said good bye to so many long term survivors, not because of procedures to correct a late developing side effect, but rather complications.  Linda was one of those that passed from complications of what otherwise should have been routine for a “normal and healthy” person.

Progress is being made.  There are more survivorship medical clinics, now all across the United States.  And medicine is slowly catching up.  But us survivors know that we still have to rely on each other, communicate our experiences to each other, so that when we are faced with an emergency pertaining to our complicated health, so that we can “teach” our doctors what needs to be done.

And that is having an impact.  I have noticed on various forums that I participate in, that although there may be complications, survivors are not only getting through their corrective surgeries, but surviving events and issues related to that.

Which leaves one more thing… awareness.  Of the various forums that I belong to, it is not an understatement, that it is likely, out of over a 1/2 million long term survivors of Hodgkin’s lymphoma, less than five thousand know what is happening to their bodies, leaving their doctors frustrated, scratching their heads, trying to match up symptoms to a patient with a particular age or health history, that just do not make sense.

Up until eleven years ago, I thought I just felt like shit.  I did not see anyone who could tell me different.  It is a different story today.  So now, while we have people finally getting treated for their late effects, and the necessary precautions now being taken, there are still too many that need to be seen, and just have no idea.

There is life after cancer.  And it can be a great life.  We just still need to take care.

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