Paul's Heart

Hodgkin’s Disease – My Side Effects

The following are the side effects that I personally experienced during and after my battle with Hodgkin’s Disease.  The categories are summaries as details would make each issue their own post.

Hair Loss (radiation and chemotherapy) = The hair loss from the radiation therapy is permanent.  Annoying that I lost arm pit hair, and hair along my jaw line, but nose hair grew back!  The hair loss from chemo came around 4 weeks into it.  It was very quick and a lot at a time.  I wish I had gotten my head at least buzzed because it was really kind of nasty to have clumps of hair in the shower, on my pillow, or in my comb.  Though the follically challenged may be used to precipitation hitting their bald scalps, I was not crazy about it one bit.  So, I stuck to hats.

Hypothyroidism(radiation therapy) = My thyroid is almost competely useless.  I take levothyroxine to help out.  According to medical reports, I now possess a small thyroid.  My guess it is compared to a “Shrinky Dink” (do you remember those?).  I gained quite a bit of weight by the meds have not helped losing it.  My thyroid at this point only serves to freak me out when I have scans leading to other scans or biopsies (just to rule out).

Immuno-compromised (surgical and chemo) = The main cause of this condition was the removal of my spleen.  Some decades ago, splenectomies were done routinely, especially during any particular trauma.  The good Lord created us with all of our parts for a reason right?  But supposedly we could live without the spleen.  Today, the medical society knows this was not a wise concept.  While removing the spleen was critical in the staging process of my diagnosis, it has been determined how important a role that the spleen plays in fighting infections, diseases, and even heart attacks.  Each time I am taking to the ER or undergo a procedure, it may seem as if I am being paranoid or afraid to the level of Chicken Little.  This behavior has a tendency to cause medical personnel to drown me out.  All I have to do is say “I’m asplenic” and all kinds of precautions are taken.  Annual flu shots, multiple annual pneumococcal and meningicoccal vaccines, avoidance of severely ill friends and co-workers, and definitely use asceptic procedures to clean up wounds.  Any fever over 100 degrees and all kinds of bells and whistles go off as I must be treated with multiple antibiotics while blood cultures must be done to determine what is causing the fever.  The possibility of developing sepsis is multiplied and the mortality rate if untreated within 24 hours is well over 80%.

Infertility (chemotherapy) = Just one of the side effects of the drug Mustargen.  There were concerns that infertility could be determined by the number of treatments of Mustargen.  But the protocol back then was definite.  I received 8 cycles.  Just years later, it was figured that less than six treatments would leave a male the possibility of recovery.

Radiation Fibrosis Syndrome (radiation) = You get radiation exposure from the sun, a microwave, dental x-rays and more.  At no point is someone really at any opportunity to reach their maximum lifetime exposure.  Even those living near nuclear power plants.  But until recent years, radiation therapy was the sure thing to throw Hodgkin’s Lymphoma into remission, lots of radiation.  And so, in just 30 treatments equaling 30 minutes over 6 weeks, I received four times the lifetime exposure to radiation.  Obviously I survived that treatment, but they call raditation therapy “the gift that keeps on giving” for a reason.  The “half life” of radiation is the amount of time it takes for the radiation to dissipate from your body.  When you go for a scan, you may be given an isotope that may last for hours or maybe a day or two.  I will never see the day that they radiation will be gone.

The damage created from my radiation therapy has only recently been discovered in the last few years, and several things are definitely impacted.  I have lost muscle mass in my neck and shoulders, pretty much in fact.  I am in the beginning stage of “drooping head syndrome” because the muscles in the back of the neck have been destroyed leaving the muscles in the front left with no resistance pulling my head forward.  It gives the appearance that I am often sulking and mostly I am not.  I have an increased risk of tearing my rotator cuffs or any other damage to my shoulders.

Restrictive Lung Disease (radiation and chemo) = I am pretty sure that the crux of damage was done by the radiation more than the bleo of chemo.  Defined by a number, my lung capacity has been reduced to 76%.  It was also confirmed that the lower left lobe is pretty much useless.  There is a spot on the left lung which is being scanned annually (no clue what it is).

Cardiac Issues (radiation and chemo) = It is an even draw what has caused various cardiac issues.  Most notably, the LAD (main artery going to the heart) had been destroyed to a 90% blockage requiring emergency life saving bypass surgery.  There are also valve issues which will some day have to be dealt with, along with the fact that the walls of my heart move in the opposite direction than they are supposed to.  Both carotids are not in good shape with the left side more than 50% narrowed.  Again, due to high risks, this is something that they will watch and do something when something HAS to be done.

Gastrointestinal (radiation) = Around five years ago, I developed issues with swallowing.  Last year, it finally developed to where I was not able to even swallow water.  Mulitple testing would reveal Esophagitis and severe reflux.  High acid content was noted in my stomach.

Spinal/Skeletal (chemo) = Prednisone is a great drug and it is a bad drug.  When in doubt, knock it out with this super steroid.  Unfortunately, high doses for long periods of time have consequences.  Besides messing with the immune system, it can cause osteo related concerns.  I have been diagnosed with osteopenia in L1-L4 and recently arthritis has been noted through the next vertebrae as well.  Result, pain in my back which can extend into my legs.

Urinary (radiation and chemo) = This kind of gets an asterisk because my issues did not develop as a direct result of the treatment, but because of the treatments for the other effects.  Two years ago I got hit with my first kidney stone, and it was huge.  It was believed to be calcium based, and several of the prescriptions I was taking increased risks of kidney issues.  A complication of this was hematospermia (hema means blood and guess what the “spermia” refers to?)  That will be another blog story.

Emotional(everything) = Eight of the ten issues have been discovered over the last four years.  Have I earned the right to be moody, sometimes down, scared, stressed, misunderstood?  Was the battle with cancer not enough?  If you personally know me, you may have heard of these things, but I have done more than I am able not to expose you to them because I know how scare people can get when they hear bad things.  Right now, I need everyone in my life, not running from it.

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 13^th, 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.”

What Makes My Heart Beat

Edgar Allen Poe is one of my favorite authors.  And not because of  his obvious literary works.  It’s just that, too often, I can relate to how tortured he felt in life.  My childhood was quite painful.  And then into adulthood, I was forced to deal with adult things.

 For any number of factors, lack of money, support, self esteem, I had to develop a high tolerance for pain as most often times I could do nothing about it.  The joke at my physician’s office, is that there is an “emergency button” under the desk if they see me walk through their door. They expect only the most critical of conditions when I arrive.

 Before I was diagnosed with Hodgkin’s Disease, it took four months for me to convince myself that a doctor might just be right and I would have cancer.  I ignored chest discomfort for months to the point of risking a fatal heart attack.  Common headaches will last a month because I won’t do anything for them.  Painful side effects from my cancer days?  I have been told that I wear them like a badge of honor.

 While my thinking is obviously flawed in the health risks that I take, it does assure one thing.  When I do actually make the decision to see a doctor, I am taken seriously.  Does that mean I have no limit to pain?  Absolutely not.  But again, when I scream, people listen.  No testing that I had gone through for my cancer, not even open heart surgery could compare to the pain of having a kidney stone.  So there it is, my kryptonite.  Unfortunately, a pain level like that results in me passing out as I don’t remember half of the car ride to the hospital but vaguely remember walking into the emergency room in my socks.  It turns out I tried to kick the windshield that I was in so much pain, my wife took my shoes off.  So I do have limits.

 But then the question is why do I let things get to that point?  I see myself as a burden and always have been.  Anything that knocks me down health wise becomes a burden to someone else, my family, my employer, or even me.  So I just struggle through it.  And because I can withstand and hide my pain, it has resulted in an uncanny ability to listen.  My empathy has grown throughout these years, and that actually makes me happy.  So that is my trade off – my misery to help others – that makes me feel worth and value.