Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “January 6, 2013”

Hodgkin’s Disease – My Treament In 1989


The following are the treatments that were used during my first diagnosis of Hodgkin’s Disease, and the development of new disease.  The treatment plan used on me, is rarely used any more as safer and less toxic methods have been found.

Radiation Therapy – 6 weeks

Gamma radiation was beamed into the upper mantle of my body (ear line to mid-abdomen), scatterred field.  Scattered field is like spilling boiling water:  as the water spreads out over the surface, it is still hot enough to burn or damage the surrounding areas.  The idea is to radiate the lymph nodes in my chest, arm pits, and upper abdomen.  There is a lead block placed over my breast bone to “protect” my heart – 30 treatments with the linear accelorator over six weeks.  I would have time over the weekend to recover physically and physiologically what I could.

A unit of radiation is referred to as a “gray” or Gy.  Living on earth, we are exposed to about 3 Gy per year in natural occurences.  Exposure from x-rays and CAT scans can range from .1 to 20 Gy.  The lifetime maximum listed by the NIH is 400 Gy.  By the time all of my 30 treatments finished, in just treatments alone, I had been exposed to 4000 Gy.  In the original plan, I was supposed to get more and without knowing what I know today, I am glad I said “no” then.

The radiation destroys the cancer cell’s DNA and the remnants go through the natural body’s processes.  Unfortunately, good cells are also destroyed.  Risks varied but include cardiac.  Dry mouth, upset stomach, bone pain, and strong fatigue.

Chemotherapy – 8 months

Mustargen = one IV treatment per cycle (cycle = month), 8 cycles completed

     note of interest = highly toxic, kills cancer cells, will reduce white and red blood cells, high risk of blood loss, high risk of infection, used in chemical warfare during World War II and more current wars (Saddam Hussein used it on his people), horrible metalic taste in mouth during the injection, hair loss

Oncovin = one IV treatment per cycle, 8 cycles completed, kills cancer cells, will reduce white blood cells and create a high risk of infections, hair loss

Procarbazine = taken orally during the first week of the cycle, kills cancer cells, will reduce white blood cells, platelets, and red blood cells leading to a high risk of infections and blood loss up to a month after treatment, hair loss

Prednisone = taken orally during the first half of the cycle, will kill some cancer cells, and help to prevent brain swelling, but will also reduce body’s natural ability to defend itself (compromise immunity)

Adriamycin = one IV treatment given in second week of cycle, 8 cycles completed, kills cancer cells,  increased risk of infections and bleeding, also pulmonary and fatigue issues, hair loss

Bleomycin = one IV treatment given in second week of cycle, 8 cycles completed, kills cancer cells, but increased risk of pulmonary issues

Vinblastine = one IV treatment given in second week of cycle, 8 cycles completed, kills cancer cells, high risk of infections, and sensativity of skin to sunlight

How Many Fingers Am I Holding Up?


          The truth is that you do not know.  You will not know.  I will not show you.  And chances are very good, I will not tell you.

          Edgar Allen Poe is one of my favorite authors.  And not because of his literary works but because I, all too often, can relate to how tortured he felt in life.  The list of events between the two of us are different.  Probably only Job of biblical stories experienced more tragedy and trauma in both severity and frequency.  [According to the Hebrew Bible, Job is a man who is warned by Satan that he has only what he does, because his God gives it to him.  To test Job, Satan takes Job’s family and possessions, until the day he can take no more and curses the day he was born.] 

          From the moment of my birth, I had dealt with neonatal health issues.  My parents went through a very bitter divorce by the time I was three years old– most details of which I still do not know today.  Due to my small physical size during school and lack of a male role model, I was the frequent target of literally dozens of bullies–often times several attackers at once, multiple times in a day.

          In my early teens, the Christmas season had become less the story of Christ or Santa, and more about death.  At thirteen, I lost four relatives in four consecutive days, between Christmas and New Year’s Day.  I attended four straight days of funerals.  Alcoholism became a prominent issue with my mother and stepfather by the time I was fourteen.  One incident  occurred, oddly enough, on Friday the 13th, 1981. My stepfather took the car, with my mother in the passenger seat–and several empty beer bottles rolling around under the front seats–and crashed into a median strip on the highway.  I began to drink shortly after that incident.  During the next four years, I buried five friends all due to different circumstances.  To make matters worse, I dealt with all of this alone.

          Our family did not discuss our emotions.  We did not reveal our feelings.  We did not express our needs.  I was raised more hardened than my arteries after three helpings of Fetuccini alfredo with a side Caesar salad.  There are plenty more examples, but you get the point.

          The “good” thing about the first quarter of my life, is that these events prepared me for the even more difficult times that would lie ahead: a battle with cancer (Hodgkin’s Disease), a head-on car collision with my ex-wife, the divorce that followed the accident, the passing of the most influential  person in my life–my grandmother–and then most recently, finding out that I could have died at any moment from a major heart attack.

          For any number of factors, lack of money, support, self esteem, I had developed an extremely high tolerance for pain, both physically and emotionally, as most times I could do nothing about it.  There is an inside joke with the staff at my family physician’s office, an “emergency button” that is to be pushed under the front desk if they see me walk through their door.  They expect only the most critical of conditions when I arrive.

          Before I was diagnosed, it took four months and five different disciplines of doctors to convince me that the original doctor might just be right and I did, in fact, have cancer.  I ignored chest discomfort for several months to the point of risking a fatal heart attack.  Stress and sinus headaches will last a month or more simply because I will not take anything for them.  Painful side effects from my cancer days?  I have been told that I wear them like a badge of honor.

          The thought process that goes into how I handle my pain is seriously flawed, not to mention arrogant.  I compare my pain to what others are experiencing and assume that theirs is worse than mine, no matter what, and therefore, my pain becomes irrelevant.  And because everyone else’s pains are more serious than mine, then they deserve the medical attention first.

          Because it was so infrequent that I saw doctors, there actually was a benefit.  When I actually made it into a doctor’s office, I was taken seriously.  Did this mean I actually have a limit to pain?  Yes, it turned out I do but I do not actually reach that limit often.  But when I come in to a medical facility screaming in pain, people do listen. 

          No testing that I had ever gone through for my cancer, all the treatments, not even having open heart surgery could compare to the pain of having a kidney stone (note: many mothers who have given birth to children and have kidney stones will agree that the stones are worse).  There it is, my kryptonite: A pain level like that results in me passing out as I do not remember half of the car ride to the hospital, and only vaguely remember walking into the emergency room in only my socks.  It turns out that my pain was so severe that I tried to kick out the windshield of that car.  My wife had to take my shoes off.  So, I found out, that even though my mind may not have a pain limit, my body definitely does.

          But then the question is why do I let things get to that point?  I have always seen myself as a burden in both childhood and adulthood to those around me.  Anything that knocks me down in regards to my health becomes a burden to someone else:  a co-worker who complains about my absence or feels that I am receiving special treatment, an inconvenienced family member, an absence for open heart surgery that would create such a hardship for my employer that the only option would be termination, or even a burden to myself.  So I just struggle through it.

          And because I can withstand and hide my pain, it has resulted in an uncanny ability to listen, to empathize.  Someone else’s pain is always going to be worse than mine.  I do not let people see my pain.  So I assume that others do not necessarily reveal all of their pain either.  And because I know what both emotional and physical pains feels like, I know or at least have the understanding of what someone must be going through.

          In the grand scheme of things, no one can get rid of my pain that I have lived with and dealt with over the years. It will be there tomorrow and the days after.  I live with these feelings every time I hear someone has been diagnosed with cancer, gone through heart surgery, dealth with addiction, experienced divorce, or any other painful situation.  When someone tells me that they are about to undergo radiation therapy or open heart surgery, I actually suffer flashbacks to the point of breakdowns as I have been there.

          My empathy for others has grown throughout these years, and that is what has made me happy.  So, that is my trade off–my misery results in the ability to help others–and that gives me a sense of worth and value.  To quote Paul Edelman, “ever more.”

A Special Story About Cancer Survivors And Late Effects


When news personality was diagnosed with cancer years ago, it made the news.  Though in remission, years later, she is faced by yet another form of cancer, secondary to treatments that were used to cure her the first time.  This article provides stunning situations that millions of people face and have little support avaiable.

http://well.blogs.nytimes.com/2012/07/16/new-cancer-threat-lurks-long-after-cure/?ref=science

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