Paul's Heart

Life As A Dad, And A Survivor

My Doctor, My Friend


“Health care costs are out of control!”

“Doctors need to stop ordering wasteful tests and pushing prescriptions!”

“They are all in ‘bed’ with big pharmaceuticals and insurance!”

Nearly everywhere I turn there is a constant assault on the medical profession due to neverending cost increases.  This assault unfortunately discredits a field many of us are not qualified to do, and many owe our lives to.  Society wants to have someone to blame.  And in order to blame something, you have to be able to see it to judge it.  We do not really get opportunities to see big pharm and insurance companies in action to see the millions in profits that they take from risky bets on our health.  But doctors are located everywhere, and we know where ours our located.

I have had exactly three doctors in my short life of 46 years.  My first doctor died still practicing medicine at the age of 86.  His hands were quite shaky so it was as good thing that I only needed care for common colds.  But he was the perfect example of the old “house call” physicians.  No matter time of day or night, day of the week, or holidays, if he had been treating your for some ailment, you could expect follow up calls no matter what.  There was an artifact in his office that I will always remember him for, an uncancelled ticket for the Hindenburg.  Yes, he was that old.

My next doctor only saw me for a couple of years before he retired.  But it was he that made one of the biggest discoveries in my life, my diagnosis of cancer.  Well, not exactly.  Based on the symptoms that I had, he treated me for a common cold.  Go ahead, rapidly shake your head back and forth and go WHAT!?!?  Confuse cancer with a cold?!?!  What kind of doctor…

My answer, he was a great doctor.  Medical history would show, that diagnosis of Hodgkin’s Disease was difficult, and rare.  It was his persistance with me, when I did not respond to low level treatments that led him to press me to see my first of several oncologists where I would be introduced informally to cancer.  Then several doctors later, formally introduced with Stage 3b Hodgkin’s Disease, nodular sclerosing, very serious.

But my third and as far as I am concerned, final family doctor took over my last doctor’s practice.  I have been her patient for over twenty years.  Our age is similar, so I have warned her that when she chooses to retire, I will retire from seeing doctors.  Her husband practices with her, yet it is she that I insist on seeing (though to be quite fair, he is just as good a doctor – I have never asked if they have ever wondered who was better).

Up until the 1980′s, you went to “a” doctor, one.  To help ease overhead costs, doctors took on partners.  Eventually the term “clinic” would be included in the name with the doctor’s practice.  Doctors would be able to extend hours, take certain days off each week, and probably much more conveniences.  But it would also mean that doctors could see more patients.

Currently, I live an hour away from my family doctor.  Admittedly, I have tried to find someone I could be comfortable with locally, but gave up trying a long time ago.  I will even put off an appointment with her husband or the other partner, and wait for her first opening perhaps three days later.

My stubbornness is quite easy to understand.  Dr. J is more than just a doctor to me.  She is an advocate for me.  Her knowledge of me, makes her more valuable than the latest diagnostic machinery.  Her persistence and commitment with my health is never questioned.  And though we have never hung out with each other, I consider her one of my closest friends.  She is loyal, honest, and definitely cares.  Dr. J knows me well enough, if I complain about something, even if it does not show up on an MRI, she will find the cause, not just throw a prescription at me to see if it will do the trick.

Unfortunately, critics state, in general terms, doctors order too many nonsense tests and prescribe way too many drugs.  This statement is shouted so loud from disgruntled patients to politicians.  And because of its generality, it unfairly characterizes the great doctors such as Dr. J (and her husband too!).

I would like to give an example of just how good she is as my doctor.  I was hurt at work, and going through the Worker’s Comp program, there could be no firm diagnosis of the injury so I had been treated with cortico steroids.  Still in pain, the WC doctor told me there was nothing more that could be done.  After the time limit expired, releasing me to see the doctor of my choice, I went immediately to Dr. J who ordered an MRI.  I ended up being referred back to the orthopedist that told me he could do nothing more for me.  He scoffed at the idea of doing a second MRI on me and refused.  When I explained to him that this order came from my physician outside of WC, he complied.  And guess what?  A small tear in a minor piece of cartilege in my wrist was the cause.  The cartilege itself was not a big piece, but the tear was enough to cause the pain.

But I will give you a better example of just how good my doctor is, and that as far as I am concerned, I am worth every test that she orders.  A few years ago, after dealing with chest discomfort for nearly four months, I placed a call to Dr. J’s practice.  There were no other obvious symptoms, yet she ordered a test that is not normally given to a 40 year old man.  Immediately following that scan, I was discouraged from even leaving the office and was advised to check in immediately to the hospital next door.  I would have emergency life-saving heart bypass surgery.  They call the type of damage to my artery a “widowmaker” because people do not normally survive this situation.  It typically leads to a fatal heart attack as EMT’s are not prepared to do open heart surgery in the field which is what would be needed.  Her being able to judge me, and know me, led to her preventing my fatal heart attack.  As I was warned by the cardiologist, “it was not a question if I was going to die, but when”.

Dr. J will be my doctor for the rest of my life.  I trust her not to presribe anything that I do not need.  In fact, she goes as far as to research any meds that I do take, to make sure that they do not interact or interfere with each other.  She does not see me often, perhaps once or twice a year at most, so she does not make hand over fist from me.

That does not mean that I am naive as to billing practices of pharmaceutical companies and insurance companies.  I have seen my bills.  But when it comes to the rising costs of health care, Dr. J (and her husband) are off limits!  And I am certain there are other doctors in the world just as good who are unfairly lumped into the administrative crisis of health costs.

This Day Had To Come


I was raised in a house with four women, all at different stages of their life.  There was my younger sister, my mother, my grandmother and her sister.  Only in an all-girl’s school would I have to deal with such a high percentage of estrogen.  It is ironic that decades later, I would be repeating that similar lifestyle.  Only now instead of being a pre teenager, I am a father with a wife, and two daughters.  The thing is, I definitely was not prepared for a discovery from my oldest daughter, at nine years old.

From the time that Wendy and I decided to be parents, and knew our first child would be a girl, we had begun to strategize and plan for “her” future.  How old would she have to be to date?  What curfew would she have?  How about what she would wear?  And what about experimentation?

And so, over the next several years, I would rehearse in my head what I would subject my daughter to when it came to dating.  Ah yes, grilling the unsuspecting boy who will clearly be convinced of returning my daughter in the same condition as when he took her out.  I know my daughter is not a car, but if her date treats his car with care and respect, I am certain he will get my drift.  And for my suggestion to be honored, he would have to know that there would be consequences for failing to honor my suggestions.  I play it out in my mind, he rings the door bell as he should (if he honks the horn instead of coming up to the door he already has lost his opportunity).  Then as my daughter comes down in excitement, tells the boy that she is just about ready, returns back upstairs, and then I go into action.  My daughter comes downstairs, ready to go, and I “have such a proud, yet sad look on my face as my little girl goes out on a date”.  She would be totally unsuspecting of the riot act that had just been read to her date.

There are plenty of different versions of how this played out.  It seems as I will never get the chance.  Recently, while cleaning off a countertop, I came across a piece of artwork done by my oldest daughter, then eight years old.  It was drawn in great detail.  Under each character sketched was the name of each person.  There was Madison laying in a hospital bed, her sister standing next to the bed, and her “boyfriend” or as she once informed me, her husband.  In the door walks a nurse wearing a cap that has not been worn by nurses in over four decades.  In her arm was a baby.

Cue the sounds of a multi-car wreck.

Too many details.  Too many easily identifiable characters.  Did I say too many details?  I called Wendy on the phone as she had been out with her sister for a girl’s night out, and she could not believe it.  Then I called the “boyfriend’s” mother, a great friend of ours, but now, evidently unknowingly to each of us, a potential in-law and grandparent.

I know, it was just a drawing.  But why couldn’t she have drawn a butterfly, a princess, a dog?  Everything I had hoped to some day play out, now would face a different strategy.  Being raised in a house with all women was supposed to give me an advantage, prepare me, have the upper hand.  Instead, I am still learning.

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.

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