Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2013”

The Easter Bunny?

I do not really do well with the holidays.  If it were not for my daughters and the childhood traditions that they look forward to each year, I would probably never know which holiday is being celebrated and if it has come and gone.  I am not proud of this, now does Wendy like it.  After twelve years, she still cannot understand the bell that tolls for me seemingly every time a holiday approaches.

I do not begrudge anyone celebrating the holidays either.  I have hoped for a long time, that I would stop feeling the way that I do about Christmas, Easter, Thanksgiving, and so on.  But each time ground is gained, it happens again, and again, and again.

I was diagnosed with my Hodgkin’s Disease, just days before Thanksgiving in 1988.  I am coming up on the five year anniversary of my emergency heart bypass surgery.  While married to my ex-wife, she was involved in a horrific head-on collision just after New Year’s Day.  There was a horrific time period between Christmas and New Year’s Day that three of my relatives passed away.  The list of sadness goes on with several more incidents, all around the major holidays.  I can get just so close to finally opening my heart and beliefs to receiving the holidays for the gifts that they can truly be, and then again, I am leveled.  I am literally petrified of approaching holidays, afraid of the doom and gloom that I believe without a doubt that is going to accompany it.

Just a couple of weeks ago, it has happened again.

My father was diagnosed with lung cancer.  I am encouraged at the staging of the disease that he has a good chance to beat it.  While I do not believe at all that holidays cause bad things to happen, I have grown tired of the coincidence of the timing, seemingly every time.  I know my father feels the same way.  More than a decade ago, my father’s life changed forever just days before Christmas.  Following an unresolved argument, my father went out to his car, started it, and looked for my stepmother who finally walked out of the house.  Both angry from the argument, the moment in time can never be taken back, nor, according to my father, can the guilt that he has lived with since that night, ever be resolved.  As my stepmother crossed the street, my dad watched her get hit by the car she did not see, fly through the air, severely injured.

For the same reason I still do, my father will celebrate the holidays, because he knows they are important to my daughters, his grandchildren.  There is an innocence that both of us will not take away from the girls whether it be Christmas  or Easter.  For at least the day, we forget all of the negative things that have happened in the past, and do our best not to wonder what will happen next.

My parents divorced nearly forty-five years ago and in stereotypical history, the common custodial issue of siding with one parent, the parent with the custody, I grew up with skewed feelings of my father (I am obviously putting this nicely).  Half way through my life, my father and I made amends.  And in recent years, he has asked only one thing.

My dad wanted to host a family dinner for Easter.  My dad has taken the back seat with every holiday during my childhood, and during adulthood, the holidays at best, were split between he, the rest of my family, and my in-laws (both sets).  But a few years ago, Wendy agreed with me, to let Easter be my father’s holiday.

He enjoys having my sister and stepbrother, all of the grandchildren and now great-grandchildren.  It is only for two or three hours, but it is the one time that he can truly enjoy a holiday.  Just as we have done with other years, following dinner, my stepbrother and I will go out, toss Easter eggs throughout my yard, which I just cleared out of “dog bombs” that had been revealed from the melted snow.

But once again, there is a specter hanging over this holiday.  It is weighing heavily on his mind.  I do not think he shares my confidence in the prognosis as last week, when discussing who would come visit tomorrow, he stated “I just want one more Easter with everyone.”

I am a cancer survivor.  Years ago, my dad revealed to me why he could not be more involved with me during my battle with cancer.  And it is something that I am going to keep within for the time being because I need him to concentrate on “now”, not then.  In a couple of weeks, I will return to the “public speaking circuit” to talk about my life as a cancer survivor.  It is my hope to reach as many survivors and inspire them with my longevity, that hopefully they too will see decades of future days with newer and better treatments being used today.  Never before has one of my speeches been so important for inspiration, as it is right now.

And my dad knows this.  He has me in his corner as an advocate.  I have heard the conversations with the doctors, and my knowledge and experience of cancers and treatments, I believe that he can beat this cancer.  But I respect his fear.  I have been there.  There are no guarantees and I know that.  But I also respect his wishes, that we get together today.

My daughters, one now ten years old, still both believe in the Easter Bunny (as well as Santa Claus and leperachauns – well at least our older daughter does not let on as if to protect her younger sibling).  Early in the morning, they will come downstairs looking for the basket of goodies that the Easter Bunny traditionally hides in our home (and has done so since I was a young boy).  We will have dinner, and then they will gather eggs scattered in our yard.  My dad will hear so much laughter.  And at least for a little while, my dad and I will forget what is looming.

Be Careful What You Ask For…

Sleep is over-rated.  At least, it would never be the same after March 12th, 2004.  I cannot even say that I got normal sleep that evening as Wendy and I were too excited.  The next day we were going to fly half-way around the world to adopt our oldest daughter, Madison.

The key factor in this equation is that the part of China we were travelling to was thirteen hours ahead of our time zone.  Wendy and I had travelled to Seattle a long time ago, and screwed up our sleep schedule that we laid down for a nap, and woke up sixteen hours later.  Our mistake was closing the drapes and making it completely dark.

We made the transition to Chinese time, immediately.  When we landed, we were informed that our schedule for actual adoption had been moved up.  We would fly to the capital city of Nanchang (Jiangxi Province) ten hours after we landed in Hong Kong.  Neither of us slept during the sixteen hour flight to China, and we were so keyed up, especially knowing in less than twelve hours, Madison would be in our arms.

Madison was nearly a year old when we adopted her, so she had already established a sleeping habit, and she definitely enjoyed her sleep.  With all the hustle and bustle that she had been thrown into, she still managed two and three hour naps, AND slept through the entire night.

We had received plenty of advice about our return home, and returning to our normal schedule and getting Madison adjusted.  We were fortunate.  There was no jetlag.  Madison continued her long siestas, and with her routine now returning to an inactive pace, to our wonderful surprise, Madison’s normal sleep length was anywhere from twelve to thirteen hours each night.  It did not matter where, a step, in the car, in the warmth of her own bed, she slept when she wanted it.

We cannot say the same with our younger daughter.  Emmalie has been with us over seven years, and she has NEVER slept through an entire night.  She did not like naps, and when she took them, it was never longer than a half hour.  Her nightly “naps” as we called them lasted three or four hours.  And she did not let us know through unhappy cries and screams.  Em would just flat out wake us up.  And if we would not stir, she would pull the old Tom & Jerry cartoon move, and actually lift up our eyelid to see if anyone was home.

Yes, on February 6th, 2006, we no longer had any opportunity to sleep throughout a night.  The chain of coherence began with Emmalie waking either myself, Wendy, or Madison.  Even the poor animals in the house were not safe from an arousing “WAKE UP DOGGIE!!!!”  No naps, waking up at six in the morning-ish, and if she had her way, she would stay up well past eleven in the evening.  Em wakes up first, then wakes up Madison.

Currently, on an average day, I do not mind the girls waking up early.  I get them ready for school while I get ready to go to work.  By the time that they wake up, I have enough time to spend a few moments with them.  I appreciate that.  But since days off from work, and other interests are rare, I make no secret.  I WANT TO SLEEP IN which translates to “I would like to sleep at least until seven in the morning.”  An impossible task.

Which makes what happened recently more than ironic, quite comedic in fact.  As an employee, I have a reputation for being on time, always.  No matter the weather, no matter of my physical well-being, in spite of efforts by Wendy, I have always been on time.

But a couple of weeks ago, Thursday morning to be exact, the girls woke up to a special treat, something to offer them hope.  All Winter long, we have not received any decent amount of white precipitation.  In fact, the girls would get the chance to peek outside, catch a few snowflakes on their tongues, then get off to bed hoping that even without a delay in the opening of school, they would get to partake in some chilly activities, at the least, making a snow angel.  Cruelly, the snow has not been enough and melted by the time they have gotten home from school.

But whereas any other morning that I have gone to work, they either wake up on their own or I need to jostle them.  On my days off from work, they can be relied on to rile me out of bed around six in the morning.  But on this particular Thursday, as if convinced the snow now covering the ground will not only prevent them from going to school, may also prevent me from getting to work.  Or so I thought.

I woke up at 7:12am.  My travel alarm clock set for 5:20am.  The first alarm on my cell phone set for 5:50am and the second set for 6:10am.  My clock has an annoying chirp to it, clearly loud enough to wake the entire house.  My cell phone alarm is the ring tone from Ozzy Osbourne’s Crazy Train”.  There is no doubt that by the second alarm, and Wendy has fallen from the ceiling of the bedroom, I would be clearly on my way to beginning my day.

Not on this day.  The first alarm had been turned off, as was the first alarm of my cell phone.  I never heard the second alarm go off because I had rolled over onto it, my belly muffling the laughing and terrifying scream “All aboard, ah ha ha ha ha ha ha, aye aye aye aye , duh duh duh duh, duh duh… and the ringtone went on, repeatedly.

At 7:12am, my eyes opened, and I look over at another clock in the bedroom.  SON OF B$&%%$!!!tch!  I am late for work.  I am supposed to punch in at 7:10, 7:20 at the latest.  I quickly throw on some clothes and clear most of my steps to the downstairs.  Fortunately, I have hair care and teeth hygiene products at work.  I race into the kitchen to grab my car keys from the counter.

Over the kitchen counter, I can see the tops of the heads of my two darling daughters who are deeply entrenched in one of their early morning Disney channel shows.  But not to wrapped up in the entertainment to inform me… “Daddy, you’re late for work.”

Later that evening, as I explained to them the importance that if they should notice that I am not awake by the time they get up from bed and I need them to wake me.  Perhaps I should have been more clear, on days that I need to go into work.  In their defense, “but Daddy, you always tell us to let you sleep.”  Day of all days, I got what I asked for.

Role Reversal – Taking Care Of A Parent

A parent’s worst nightmare, having to care for a child for whatever tragic situation, cancer, accident, illness.  And then the ultimate, the loss of life because of the complications.  At funerals you will hear a phrase “a child is supposed to outlive his parents.

Last week, my father was officially told that he has lung cancer.  Over the last week, he has had several tests done to determine staging (how bad the cancer is and where located).  Emotionally, he is worried about two main things, one, care for his invalid wife – my dad is her caregiver.  And then of course, there is the fear of dying.

It is an early morning appointment, 7am.  My employer already tolerates me with frequent absences for my own health issues, to attend appointments in the care for my wife, and now will add for this.  Up until now, both of have held it together.  My defense mechanism is doing what it always has, switched to auto-pilot.  My dad, is almost in an acceptance mode.  There was one moment when he almost seemed to look for a deal, if he successfully quit smoking, which he is still dealing with.

My dad does not have any desire in technology, so other than his cell phone, that is as far as he will go.  But during this crisis, he probably wished that he would have access and the ability to use a computer.  So when the doctor’s office gave him information to receive notices via email, and be able to check on some of his records via the internet, he simply had everything referred to me.  On Friday, he had asked me if I had looked into his record, which I answered honestly that I had not.  That was actually kind of a hint that he wanted me to check if his scans were in that would tell how what stage his cancer was.  With several days until his appointment, I encouraged him to wait until then.

Then was today.  My dad and my stepbrother were waiting at the hospital by the time I had arrived.  We walked into the atrium waiting for my dad to be called in to be registered.  We entertained ourselves with small talk as anything medical made my step-brother nervous.  We were called into an exam room which was fairly small, definitely not large enough for the three of us, and five doctors to be in.  But the purpose for being put in here, was to put my dad, and my step-brother and I at ease.  Sure, the nurse took my dad’s vitals, but she also offered him some coffee, asked if there was anything else she could get him.

The hospital social worker came into the room then.  She explained the resources available to her, and that she would be available or how to reach her, should my dad, or any of his family have any emotional needs that needed to be met.  I expressed to my dad, while he is a fairly reserved and self-sufficient person, meeting this counselor was going to be one of the most important people he will meet during this process.  Most importantly, she was going to be another advocate for him.  If my dad was feeling uncomfortable about bringing up a topic with the doctor, having an issue with a hospital bill, pretty much any issue, she would be willing to help and guide him through whatever steps would be necessary.

Just then a nurse opened the door and said that the doctor was ready for us.  We were escorted down the hall into a conference room.  Wow.  It was not just the five doctors, but a total of nine staff members, all to make sure that my father understood all of his options.  The group had been meeting while we were waiting, discussing all of the options available to my dad, and what would be best.  I remember my diagnostic and prognostic stages and nothing even came close to the efforts for my dad.  It was so impressive.

My dad’s pulmonologist began the meeting, by informing us of good news.  The tumor was isolated to just the one particular spot.  There were no cells anywhere else, the cancer had not spread, this meant Stage 1, the best case scenario.  The bad news was that the best recommendation was not what my dad wanted to hear, surgery would be the best opportunity.  The concept of radiation therapy, or a combination of radiation and chemotherapy were explained as possibilities, but surgery would present the best opportunity for a cure.  He would end up losing half of his lung.

We did hear from the head surgeon who had address my father’s needs as far as dislike for the original surgeon that he had met, which basically came down to bedside manner.  But the chief assured my dad that another very qualified surgeon would be able to do the surgery.  We were introduced to the radiation oncologist, just in the event, further down the road, radiation therapy would need to be considered.  And then we met the oncologist that will be dad’s for the rest of the journey.  But what was more important to my father, was that the pulmonologist would stay involved.

I assured my dad, that Dr. K would remain inolved, that he was only a phone call away if he had any concerns or questions.  But for all purposes and plans, he was being turned over to the oncologist and the surgeon.  Dr. K would see him again in the near future as follow up, but of course would make himself available if my dad requested him.  This part was huge for my dad to hear, as he expressed extreme trust for this doctor.  And that is a crucial thing to have in your arsenal against cancer.

So now that the diagnosis, stage, and treatment plan had been decided, there were preliminary things that needed to be checked out before the surgery could be done.  Most importantly, confirming that his heart would be able to take the procedure of losing part of his lung.  A visit with his cardiologist has confirmed that something is of concern with his heart at this point.  Future testing is being done to see exactly what it is, and then it will need to be determined  if it needs to be taken care of before, during, or after the lung surgery.  What is not the ideal situation however, is delaying a procedure that right now is confined and has not spread.  Timing is definitely a critical factor.

Fortunately, my father’s head is in the right place.  He understands what has to be done.  He has faith in those that will be responsible for saving his life.  He is going through some normal reflections that all cancer patients go through, “what if’s” or “what went wrong”.  Another holiday is coming up, and as I have written before, I have really grown to dislike holidays for this very reason.  But my dad started a tradition years ago, by wanting to get his children and grandchildren together on Easter.  It is the one holiday that I promise him.  This year will be no different, but definitely as important if not more so.

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