Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “January 6, 2013”

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.

Wills And Living Directives


It is the most unpleasant thing to think of, your own death.  We all know it is inevitable, yet so many of us do not want to think about it, let alone plan for it.  For many like myself, with several serious health issues, it should be a no-brainer.  To make the point even stronger, I have two young children who would need to be taken care of in the event of a premature passing of both my wife and I.

Over 22 years ago, I beat cancer.  Though companies refused to deal with me, because of the risk.  Four years ago, I underwent emergency life saving open heart surgery.  This past March, I battled sepsis and pneumonia.  Three major events in my life which could have ended much differently with consequences from family to adminstration.

So two days ago, Wendy and I met with our attorney to finally draw up a will, and a living directive.  I have seen all five “Final Destination” movies so I know when it is my time, it is my time, and it could happen just like that.  And there needs to be a paper trail to tell others what you want done.  Word of mouth, “knowledge” of me, political offiliation, even statements from my children would mean nothing in a court of law.

The first thing that Wendy and I had to decide was an Executor, the person for making sure the will is followed to the letter.  As our children are far from age to do this task, we decided on Wendy’s sister.  Easy enough.

Next, a trustee was needed.  Who is going to make sure that the money is used as it is directed by us?  Again, Wendy’s sister would be able to handle this, and she is quite good with money.  So no doubtedly, our daughters would be taken care of financially.

Finally, and it is a doozy, guardian.  Who would be placed in charge of the girls in the event of anything happening to Wendy or I?  This was not an easy thing for us to agree on, though for Wendy, her answer was quick and immediate, her sister Robin.

We had a conversation years ago, pre-kids about this very issue who would get our children?  Wendy was adamant, her sister and husband.  Mike had a great job with great income.  The conversation had been pre-children,  and only recently into the marriage.  But I had felt differently as I had a friend whom I looked at as a brother.  He was part of a very nice family, wife and two children as well.  But that discussion was a long time ago.

With time seemingly not on my side, especially as spontaneous as events have become, here we were sitting in front of our attorney having only a slight difference in opionion from those years ago.  Wendy was still strongly choosing her sister, while I still chose to rely on friends who showed strong family support, friends that we have kept relationships with since the day before we met our oldest daughter in China.

The difference?  I was concerned for her sister and current circumstances that would put impossible stress on an already stressful situation.  I am purely thinking of effects on our daughters.  They have already been exposed to health crisis one after another with me, which has not been fair to them.  They are small children and all I want is for them to live a child’s life during their child years.  There is no doubt that Robin and Mike would take them in as their guardians.

As in the past, I had been considering friends who had adopted with us.  Over time, we have become more like family than friends, and we have a large amount of trust in them.  But Wendy was firm, only family.  The only downside to one of our adoption families, is that most live a fair distance from us and that would mean less accessability during holidays and family get-togethers, though I am certain, that any family chosen would do their best to make sure our daughters saw our family members.  And then our attorney brought up a point that I had not even considered, even though I claim of doing what is best for them.  If our daughters end up without us, due to an unfortunate accident, their lives will be upset enough.  How unfair and upsetting would it be to them, if they were uprooted and forced to move away from their family and friends.

And so, in preparing for a situation that we never hope occurs, all the discussion over a hypothetical situation, we, we have decided on Aunt Robin and Uncle Mike.

The Living Directive… that is another post.

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