Paul's Heart

Life As A Dad, And A Survivor

Michael – One Year Later

I have learned a lot about Michael in over a year.  Actually it has been more than a year.

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I already knew that Michael had an older sister.  Her name was Alyssa.  Together they shared a very unique thing between them.  Their birthdays were not only in the same month, but they were also less than a year apart.  Alyssa and Michael grew up very close to each other.

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The closeness between these two siblings is a full credit to their mother Josephine.  Josephine did everything with her children, early in their childhood and also into their young adulthood.  She supported them both in every venture they undertook.  In recent years, Alyssa pursued fiction and poetry writing.

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But their love for each other, and support for each other would be put to the test when Michael was diagnosed with Hodgkin’s Lymphoma at the age of 23.  But with such a strong foundation between them, Josephine and Alyssa would make sure that Michael got through his treatments, and Michael would make sure that his mother would get through his treatments.

I learned of Michael through an internet support page for lymphoma patients.  I followed his journey from his second treatment on through his last.  I would meet Michael for the first time, through internet technology, Facetime, during one of his final chemotherapy treatments.

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It was actually Michael who helped me prepare for dealing with my father’s cancer journey.  It had been over two decades since I had set foot in a chemo suite, but by Michael “taking me along” to his treatment, I saw that the chemo suite is nowhere near the dungeon-like room I underwent with my treatments.  And it would prepare me for when I would accompany my dad for his treatments.  Even more critical, Michael offered me a suggestion for my father to deal with bone pain associated with Neupogen shots, something my father’s oncologist failed to mention, taking the allergy medicine Claritin, unofficially used to treat bone pain, other pain meds unsuccessful.

I had been arranging to travel to Florida to pursue public speaking opportunities in regard to my upcoming 25th anniversary in remission from cancer.  But as Michael had just finished his treatments, and had been officially told he was in remission, I also decided to pay a surprise visit to someone I had admired.  I had never witnessed such bravery and courage for such a young man going through such an ordeal.

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He was as thrilled to meet me, as I was to meet him.  We talked quite a bit about similarities between us, as if the more we found in common with each other, the more likely he was going to experience the same success and longevity.  Our birthdays were just a day apart.  We were both diagnosed with Hodgkin’s Lymphoma at the age of 23.  And we both enjoyed root beer and chocolate chip mint ice cream.

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More importantly, we both beat Hodgkin’s Lymphoma.  And this is where I wish this post would end.

Whereas it would be decades before I would develop severe late side effects from my treatments, Michael’s severe side effects would be discovered just a couple months following his treatments.  A drug used for decades in the successful treatment of Hodgkin’s Lymphoma, Adriamyacin, also carried its risk, affecting the heart.  Unbeknownst to Michael, his family, and his oncologist, Michael was one of the few to actually develop congestive heart failure because of the drug.  Of course, as most “average” local hospitals go, they are not prepared to deal with side effects that occur with cancer patients.

Michael had to be flown by helicopter, two hours away from his home, to undergo emergency heart surgery to place a pump into his chest to assist the heart in its pumping action.  Many weeks later, he would finally go home, just before Thanksgiving.  Michael was on the road to recovery.  Again, this is where I wish the story ended.

Two days before his 24th birthday, the pump failed, sending Michael back by helicopter to the hospital that treated the original problem.  A blood clot had stopped the pump from working, and needed to be replaced.  And from there, it only got worse.  Everything went wrong, and Michael could not endure anything more.

Michael passed away January 6th, last year.

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There are so many questions we all have.  No mother ever thinks one day she would have to care for her child dealing with cancer, but never in her worst nightmare did she ever think she would bury her son.

As a survivor, I am struggling with Michael’s death as well.  I have been involved with the cancer world for over two decades.  I have seen the progress being made in less intrusive diagnostics, better and safer treatments, and many more people surviving cancer.  But one glaring thing that does not seem to have made any progress, is the protocol for following patients and survivors.

Okay, to be fair, survivors of cancer are now being followed.  Now that medicine realizes that cancer survivors are living longer than the magical five year mark, and since research has never concentrated on late effects, we, as survivors are teaching medicine what to do.  But in Michael’s case, though I do not know the exact details of Michael’s passing, one thing I do know, the lack of a protocol to follow patients undergoing treatments with drugs known to have the potential of harm to a body’s organ, contributed to Michael’s death.  Adriamyacin is known to destroy the heart in some cases in as early as the first dose.  But protocol only calls for a base-line before the treatment begins, and then several months after treatment ends.  But the drug, if it does any damage, is done early in the treatment schedule, but there is no protocol to catch this deadly situation.  Doctors simply rely on a patient complaining of not feeling well.  And in Michael’s situation, he never complained about anything he was going through with his Hodgkin’s treatment.

I have asked many doctors why a simple echocardiogram would not be ordered to monitor this deadly side effect, and the answer is always the same.  It is too rare a side effect, and therefore, not cost effective to order an echocardiogram.  Now I do not know about other cancer treatments, but there are roughly 50,000 new Hodgkin’s cases each year, that is how rare Hodgkin’s is compared to breast, lung, colon, and skin cancers.  So, according to medicine, it is not worth spending $2.5 million dollars to make something protocol to follow up a patient for this deadly side effect, but it is worth spending millions saving his life.  To medicine, it was not worth spending the money on an echocardiogram, but a young man lost his life, a mother buried her son, because medicine decided he was not worth it.

There has been some things that have come, bittersweet of course since Michael’s passing.  Florida Gulf Coast University awarded Michael his Bachelor’s Degree in Political Science posthumously as he was nearly through with his degree program when he was diagnosed with his Hodgkin’s, and had actually enrolled for classes to complete his degree when his heart issues developed.  His degree was accepted by his older sister in his memory.

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Michael was also given an award from a local charity dealing with the visually impaired where he volunteered teaching visually impaired people how to use computers, as Michael was born with impaired vision, which never stood in his way of his many accomplishments in his young lifetime.

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And the latest, was the creation of a college scholarship in Michael’s name to be given to a fellow FGCU student in need.  The first scholarship was offered this Fall.

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Tonight, Josephine, Alyssa, friends and family gathered this evening to remember Michael, and pay tribute to his memory.

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But there is one thing if I can do for Michael and his family, it is to make the reality of creating and mandating a protocol that anytime a drug is used, that has been proven to have even one incident of a fatal result of organ failure, to follow up closely for such a side effect.

No, it will not bring Michael back, but we have learned  a very sorrowful and unnecessary lesson having lost a young man, who had so much life ahead of him.  And for the brief time that I got to know you Michael, I miss you.

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