Paul's Heart

Life As A Dad, And A Survivor

What Happens When You Outlive Statistics?

There are three bench marks that a cancer patient looks to set – all clear, 1 year and still clear, and five years clear.  Statistics are set with statements such as 85% survive to 5 years,  or 62% relapse.  While a five year anniversary mark gives us something to look forward to, it is the unknown that determines the rest of your life.  While I look at each anniversary of another year down, and recognize the big milestones (like 20 years), in reality, I stopped living my life with cancer at my five year mark.  I never looked back.  No more follow ups.  No more tests.  On with my life.

But if you were treated in the 80′s and earlier (perhaps the early to mid 90′s), there were no follow up protocol to deal with the toxic and damaging treatments and decisions that were made for cancer patients.  All we had to hear was that there was a chance that we could be cured.  Then one day, we get tired of the fatigue or unexplained pain or other maladies.  But this could be years after last seeing an oncologist, or even a family practitioner.  An easy analogy to understand is the thread pull from your favorite shirt.  You can either take care of it when it happens, or you can just let the pull get worse until the shirt is completely ruined.  All that mattered to me was that I could “wear that shirt”.  I got through the treatments and side effects, and surgeries, now it was my turn to get my life back.

If your doctor is relatively young in experience, then there is a good chance that some of his schooling has taught tim to triage cancer survivors, to study them.  However, if you have one of the older doctors like I do, well, I am actually teaching her the care that I am going to need.  Oh, I have a lot of help in my training as I am blessed to be seen by Dr. O at Memorial Sloane Kettering Cancer Center who actually studies long term cancer survivors.  Our team consists of more than a dozen other specialists to deal with all the different areas of my body, that decades later, now suffer from the treatment that cured me of my cancer,  but now have come back to collect.

Most physicians lack the training and diagnostic skills needed to differentiate what are signs of getting older, and symptoms of late effects from excessive and dangerous treatments.  Many doctors still refuse to accept these late effects, yet are unable to offer any other possible suggestions.

There are 11-12 million cancer survivors in the world, yet only a few thousand may have a clear idea that they are dealing with late term effects courtesy of the internet.  Support groups that share information on symptoms and events so that doctors can have the knowledge to treat us.  As patients we have a tendency to tell our doctors everything because we worry it would be too much for the doctor to handle.  The doctor might fall into disbelief, frustrated, and just give up by recommending us to psychotherapy or physical therapy or unnecessary medications.

If a patient is lucky like me, they meet the right person, at the right place, at the right time, and help can be had.  That is the good news.  The bad news is it cannot be reversed.  Progression can be slowed down.  All that is left is to accept your future.  Or would you simply fold up?  I have friends who have gone through acceptance and battled through their side effects living for decades on to suffer one last challenge that would be too much to endure.

Me, I am still chugging on.  I have a wonderful wife, Wendy, and two beautiful daughters, Madison and Emmalie.  Stay tuned.  A fellow cancer survivor once told me, “Cancer is easy.  It’s life that is hard.”  I have come to accept that I will never be done with my battle with cancer.

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