Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

31 Mar 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.

Posted in Cancer, Family and Friends | Leave a comment
26 Mar 2013

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.

Posted in Cancer, Family and Friends, Inspired By... | Leave a comment
25 Mar 2013
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Madison’s Top Ten


 

The first half of my oldest daughter’s childhood will be gone.  She has turned ten which I expect to bring in all kinds of changes to deal with the second half of her childhood term, the teenage years.  My mind often switches to memories of Madison, as many of her homework assignments often have to do with places she has visited, things that she has done.  There are things that stand out in my mind and take no time to recall.  They are Madison’s Top Ten memories.

1.  “Family #7!!”

This is what our guide in China yelled out as the caregivers who had escorted our soon-to-be children, began said goodbye to the babies they had taken care of until this great day.  There were ten of us families, and we were number “seven”.  All of us were strangers when we left Newark, New Jersey and in an instant, we all became family, sharing a special moment that will last forever.  We becamse what many in the adoption community call a “Forever Family.”

Madison had been dressed in three layers of clothing, sweating profusely inside.  She was approaching a year of age so she had some teeth, her four front teeth which allowed her to place her fingers around the teeth and create the perfect seal while sucking her thumb and finger.  She did not cry often, and when she did, it was for food.  Cheerios made her very happy.

2.  Wildwood, New Jersey

While every child loves the beach as well as the ocean, Madison associates the beach with something else, amusement piers.  We have several dozen pictures of Madison riding different carousels all over the country which by her third birthday, meant different rides.  And by her sixth birthday, kiddie rides just were not cutting it.

Unfortunately, I do not recall the name of it, but Madison had gone on her first “adult” level roller coaster at age seven.  The coaster was one of those momentum driven rides filled with hills and fast, winding curves.  It was not a large coast like you would see at a Six Flags park or Disney, but it was not a miniature coaster either.  Her smile had smoke coming from it and she rode the ride three more times before we headed home.

3.  “Do Not Cross This Point”

One of my roles as a parent, is to teach my children to follow rules.  After all, rules exist for a reason right?  But what happens when your daughter just looks up at you with the “Daddy you will make me the happiest daughter in the whole wide world”-eyes, and is asking you to be a non-conformist, which I do not have a problem with anyway.

And so, while visiting Seattle, Washington a few years ago, we went sight seeing to Snoqualmie Falls (not sure of the spelling).  It took quite a hike to get to, but the view from the platform was breathtaking.  Madison imagined out loud what it would have looked like up close.  Of course, I tried to explain to her that the warning sign “Do Not Cross This Point” was there for a reason, as in “the dam could be released at any time, the water could rise at any time, the rocks were difficult to climb, etc.” but Madison would have nothing of it.  Once she saw the throngs of people disobeying the warning, including with children, there was no convincing her that we could not go.

We dropped down from the platform and began our hike across the rock bed, and just a coupld of hundred feet, there were were at the bottom of the falls.  It was fantastic.  It was also a sign of things to come that Madison was going to be an adventuresome little girl.

4.  Madison’s Husband

I know.  Madison is only ten, but she has evidently been married for at least three years.  I am not sure if the boy knew it or not, but he did by the end of his birthday party.  His party was being held at his karate class studio by his instructor.  The Sensei (teacher) was quite good at handling the throngs of six and seven year olds, much better than I could.  Now the boy is quite a character, a bit on the goofy side, but what he did next would play right into Madison’s reaction.

Sensei was trying to teach a particular move.  It involved striking the boy (not physically), but the boy decided to take a dive anyway for emphasis.  To which Madison jumped up from her spot on the mat screaming “don’t you hurt my husband!”  All at once, the entire studio got silent as Madison attacked Sensei’s leg with a ferocity.  I do not know who was in more shock, me discovering that I had a son-in-law already or the second-degree blackbelt who clearly was not ready for this particular attack.  Three years later, they are still “married”.

5.  Madison The Headbanger (Part 1)

It is a longer story that I will cover in another blog, but Madison has always loved music.  She loves to sing it, play it, dance to it.  The first song that she ever heard back on United States soil that I can recall is ACDC’s “Back In Black.”  I have a wide variety of taste in music, and in general, just keep my Ipod on “shuffle”.  So you never know what you are going to hear.  But the ACDC song had just come on, and at that particular moment, I had looked back through the rear view mirror, and there I saw it.  Madison “head banging” to the beat of the song.  It was a beautiful moment.  There would be plenty of other memorable music moments, such as the first song she ever sang – “Since You’ve Been Gone” from Kelly Clarkson at the age of fifteen months.  We couldn’t understand the words that she was singing, but she got the chorus spot on!

Her knack for picking up music by ear has been remarkable.  So remarkable that she can usually pick up the music notes by the middle of the song.  And if there is a catchy lyric…  She got a lot of attention at the age of four when she began to sing “Girlfriend” by Avril Lavigne which of course drops a couple of bad word bombs at daycare.  Fortunately, she was singing the edited version of the song.

6.  Madison The Headbanger (Part 2) and These Are Real Tears (Part 1)

As parents, Wendy and I have done a pretty good job differentiating our girls’ cries, between the “this really hurts” and “I want attention”.  Madison is quite a tough little girl when it comes to crying.

But as she began to realize that there was an entire world waiting for her once she became vertical, it was not soon after that she also learned that she needed to learn about depth perception and height.  Her first and most difficult lesson came as she got stuck under our kitchen table.  I say “stuck” because instead of crawling out from under it, she was determined to walk out.   And with that, came the first thud.  We now realized how much Madison had grown in the year or so that she has been with us.  But there was no cry, so we left her to discovering her world.  Not worried, here came the second thud.

Okay, clearly she was determined, and Wendy and I just looked at each other.  “You don’t think…” and just like that, came the third thud.  Still no cry, she finally appeared out from under the table, but on her two legs, ducking under the edge of the table.  There were tears, but not from pain as she was not holding her head.  They were tears of frustration as she wanted to accomplish this goal on her own, and was having a hard time.  If there is one thing that I will say about Madison to this day, she is a determined little girl.

7.  These Are Real Tears (Part 2)

We are sitting at the dinner table one evening a couple of years ago, when Madison decides that she would like me to consider buying a reptile for her, in particular, an iguana.  Now I already maintained in our house, all at one time a dog, three cats, two guinea pigs, and two frogs which as far as I was concerned was more than my maximum that I had desired in my house, let alone, my lack of appreciation for reptiles.

So it was only natural, as I am known to do, I responded “no”.  Sensing it was the “iguana thing”, Madison turned on her bargaining powers and decided to rattle off all kinds of other reptiles as if that was the issue.  My answer was still “no”.  Realizing that I was firm on this, Madison decided to show her manipulation hand way too early in her life by proceeding further with this argument.  First came the frustration.  Next came the anger.  Then came the sadness and it was not just sadness, but it was accompanied with tears.

I looked over at Wendy who under normal circumstances would have caved long ago, worried that she would do so now.  I was trying to telepathically send her signals “be strong, do not cave”, and just then it happened.  Madison burst out laughing with the tears pouring out of her.  I let her know just how good her skills were at trying to mold her parents which is when she warned me, “you think that’s all I can do?’

8.  Attention To Detail

We had just gotten done vaccuuming the carpet when Madison had found some little particle in the carpet that had not been picked up.  It was the backing of one of Wendy’s earrings.  This is just one example of Madison’s sharp eyesight.  But when it comes to things that interest her, she has amazing recall to details, such as certain areas that we have visited, specific exhibits, even vacation memories.  Now if only we could get her to remember where her sneakers are.

9.  Snow White Has Nothing On Madison

Madison will save every living creature if she has it within her ability.  It is one thing for your child to bring home a stray animal, or yell “watch out” as you swerve and total your car to avoid a squirrel lollygagging across the street, but Madison has such love and respect for all living creatures that even those lacking intelligence can count on her, repeatedly.  Such as the bugs that keep falling into our pool.  She scoops them back out, puts them down on the ground, and then back in they go.

10.  Daddy’s Little Girl

The moment when I realized that Madison was one of the most caring little girls, was when I had to have my heart surgery.  It had been three days since Madison had last seen me, the first time ever that we had been apart from each other.  Wendy walked her into the hospital room, where I was still connected to all kinds of tubes and wires and a huge white patch covering my chest.  She gently climbed up on my bed, said she missed me, that she loved me.  She only asked a few questions about what had happened, and then asked if she could watch my television.

Madison, you are so special to me.  I love you always.

Daddy

Posted in Adoption, Cancer, Education, Family and Friends, Recreation, Side Effects, The Heart

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