Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2013”

$.04 – Two Cents For Each Opinion


We do it when we look for auto loan rates.  When we go shopping, we compare prices and quality.  Even if there is a movie that we want to see so badly, but the critics said it stinks, we seek out and value the opinion of someone else, because they might feel differently.

Then why would we not do it for a medical opinion?  Two of the most common reasons are passivity and the belief that our lack of knowledge does not qualify us to question the doctors and technicians who clearly should know, right?

When the decision is more radical than simply selecting a medication, you have the right, check that, you have the obligation to ask questions, to get a second opinion.  When time allows you, and in most cases it probably will, you need to ask the question, what else can be done.

A pregnant woman who is five months into her term is recently diagnosed with Lymphoma.  This particular situation occurs quite often (not to be confused with “because of the pregnancy she developed Lymphoma).  The mother is faced with so many decisions,  can treatment wait until after the birth or  what effects will occur to the unborn child?  The mother will not be concerned with hurting the doctor’s feelings by requesting or demanding a second opinion.  She needs to know and understand all of her options, and the possible outcomes of those decisions.

One of the first young men that I counseled had been diagnosed with a cancer that would have left him with a urine bag, not to mention affect the possibility of fatherhood.  Clearly upset, shaken, and defeated, he was surprised when I had asked him, “what did the second doctor say?”  A second opinion took him out of state, but to another research institution that gave him an option of remaining completely intact, functional, and cured.

I have to stress, sometimes you do not have this luxury.  My heart surgery was one of those moments.  A stress test had discovered a blockage.  Its severity had not been known, but the cardiologist was certain it could be taken care of with simple catherterization and stinting.  Only when they got in there, did they realize the opposite, and far worse.  It was a common condition for this hospital to see, but not the cause.  The doctors felt that they could save my life, and while I was coming out of the anesthesia from the earlier procedure, my wife gave the authorization to schedule the emergency bypass surgery for early the next morning.  In that case, time was not an option.

But when you have the time, and face it, other than your heart beat stopping you will have the time, consider a second opinion, especially when it comes to something radical like a mastectomy or the removal of a lung.  You have to understand, if you go to see a surgeon for a diagnosis, their specialty is going to be surgery.  If you go to a radiation oncologist for a cancer diagnosis, chances are likely, the doctor will push radiation.

I am not a doctor, nor do I play one on television.  But when it came to my Hodgin’s Disease diagnosis and treatments, there were a total of eight doctors involved.  For my late effect issues, I have more than a dozen.  I am certain that my insurance carrier is not happywith all of the bills, but I am alive, and my quality of life is as best as it can be, and would have been far worse had I closed the door on the other options made available to me.

I honestly believe, that even 23 years later, if my radiation oncologist were to bump into me on the street, he would probably still swear that he wants me to undergo preventive radiation therapy.  I believe this because he chased me for the first five years of my remission.

There is the chance that a doctor may get annoyed with a delay for a second opinion, but if the doctor is worth anything, they will welcome a second opinion, a chance to discover something that might have been overlooked, some newer option available.  Just as it only took a decade to come up with a better and safer treatment for Hodgkin’s, unless my oncologist was kept well-informed of the progress, I would not have had the options. 

I am blessed to have a great team of doctors who work with each other, in spite of the geographical distance.  Time is rarely wasted as they consult with each other, which has become my second opinion.  They know that if they did not do it themselves, then I would do it for them.   Doctors know time is important, but so is the sanity of a patient that all efforts to minimize the effect to quality of life have been exhausted.

Thank You So Much


When I got to my computer tonight, I expected the usual 40-50 hits, but instead, I have seen over 450 to see the post on my anniversary, and the other stories beyond.  This means so much to me, and hopefully, you know someone who might get help needed by reading my writings.  Again thank you.  Tonight, I am speechless, over 2,000 in a little over 2 months.

 

Paul

12,088,800


The opening song in one of the greatest musicals, Rent, is called “Seasons Of Love.”  I am paraphrasing, but the song asks “how do you measure a year?  In daylights, midnights, sunsets, coffees, inches…”  It is a beautiful song.

I have titled this post “12,088,800” with special accounting in mind.  March 3rd is the 23rd anniversary of completing my chemotherapy for Hodgkin’s Disease.  23 Years – 12,088,800 minutes.  Compared to the 10,400 minutes that I was given the chemotherapy, or the 30,600 minutes from the beginning of my Hodgkin’s Journey to the completion, 12.1 million minutes is a long time.

12 million not big enough number?  14 million.  There are over 14 million survivors of cancer.

I am often accused of under-appreciating what I have gone through from my first counselor to the long term caregivers I see today.  I was treated with four times the lifetime maximum exposure to ionized radiation.  I was injected with a chemical that Sadaam Hussein used to gas his own people with.  I was battling a disease that has killed over 600,000 Americans a year, over 1500 per month.  Chances are, this paragraph has your attention.  It should have mine, and it does to a degree, but not what it should.

March 3rd, 1990, I completed 30 treatments of radiation to the upper half of my body, and 8 cycles (fancy term in my case, for months) of a chemotherapy regimen referred to as MOPP-ABV.  I had five surgical scars to show the lengths travelled for my diagnosis and staging.  Statistics of survival were only referred to with a five year mark.  Up until March 3rd, 1995, I had never heard of anyone surviving cancer, let alone more than a year.

Fast forward twenty-three years, as I enjoy destroying odds and statistics, I once again have the world by the tails.  I officially have my longest monogamous relationship with the mother of the two most beautiful girls.  I have a nice house and a great job that I not only enjoy, but take great pride that it is a career that allows me to “pay back” the industry that has saved my life on numerous occasions.  My daughters are now old enough and curious about my “cancer” history.  I am mindful of the time when I was a child, and the only thing I knew about cancer was “people died.”  They are reminded with each conversation that people can survive cancer.  As if this were not enough, brief as it is, I am continuing a local political journey for our local school board that began three years ago.  There is so much for me to be proud of, appreciate, and celebrate.

But yet, on this date, March 3rd, I afford myself only the opportunity to recognize the importance of this anniversary.  I cannot celebrate it, which most people cannot understand.  Wife, kids, career, surviving cancer for decades, I have every reason in the world to celebrate.  But I do not, I cannot.  My survivorship comes with an extremely burdensome feeling, guilt.  Survivor’s guilt.  I live, while others have not.  I am in remission for decades, yet many deal with their third, fourth, fifth recurrence.  Hundreds of patients and survivors have come into my life.  Regardless the distance, I held each of their hands emotionally at the least, to offer comfort, confidence, solace.  But I have also shed so many tears, some of joy, too many of pain.

This is a great day, make no mistake.  I recognize the importance, the value of my survival.  In twenty three years, just two decades, I have personally witnessed the great things that have come in the progress of safer and more accurate diagnostics, safer and more effective treatments.  Because of research from institutions such as Memorial Sloan Kettering Cancer Hospital, the University Of Pennsylvania, and so many other institutions who have made cancer research a top priority, and without the support of organizations such as the Relay For Life, Livestrong, StandUp2Cancer, and so many more, that progress would not be possible.

Here’s to another year.  Thank you.  From the bottom of my heart, for those that took the journey of cancer before me, with me, and after me, I truly mean that.

“As I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.  And if you are not on that road just yet, you’ll catch up to me.”

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