Watching A Parent Battle Cancer Is Hell On Earth Torture

IMG_6745You have not felt a broken heart until you have heard your larger than life heroic father scream in pain.  

Watching a parent die is excruciating, watching a parent die who is also your best friend is hell on earth. For four years we searched for someone to help my father.  Someone with a miracle, someone to give him some sort of quality of life. I spoke to my father several times a day, visited at least once a week.  With each visit I witnessed him slowly dying.  As my dad’s sickness stole pieces of him, pieces of me were dying as well.

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Through My Father’s Eyes

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 Rehab February 2015

If I stare at myself long enough in the mirror I can see my father’s eyes.  In the four months that my Dad has passed, I find myself doing this quite a bit, it’s almost become a ritual.  Staring in the mirror searching for my father’s eyes.  I caught myself doing this at a red light the other day, I can only imagine what the driver next to me was thinking.  “No Officer, I’m not drunk,  I’m just searching for my dead father in my reflection.”

 

Through my father’s eyes I can see happiness and hope.  I can remember the good times, the times when he was healthy and we laughed.  The times when I danced on the top of his feet to doo wop music in the living room.  The times when he was enjoying his favorite meal and was cancer free.  Through my father’s eyes I can see my biggest fan cheering me from the sidelines, always encouraging me to better myself.

I share my father’s DNA and much of his personality.  I want to be happy again, but grieving is so complicated.  My grief has morphed me into a real life Dr. Jekyll and Hyde.  My heart hurts and my shoulders ache from the pressures of grieving.  The agonizing pain of grief has ripped a hole in my heart and left a massive void.

This blog, this community of readers are an incredible resource.  I find solace with each and every one of you.  Strangers connected by our own tremendous loss. Each of us desperately trying to find our way.

Friends have said, “You’re still upset???” I lost my father, the man who raised me, my best friend, he was a significant part of my life.  I’m starting to think that some individuals  mourn the loss of their iPhone more than the loss of a loved one.

Death and grief are taboo despite the fact that we all die. A simple act of acknowledging someone’s loss provides incredible comfort to the griever.  If you don’t acknowledge our pain you are slamming the door in our face and putting us on mute, you are sending us a message that our loss is insignificant to you.

“In the end we will remember not the words of our enemies, but the silence of our friends.” Martin Luther King Jr.

It’s been four months since my father has been given his angel wings.  How can four months seem so endless, yet go by so quickly?  I still feel like I’m waiting, waiting for him to come home from the hospital.  Waiting for him to answer the phone and announce, “It’s my Lisa Mia!” Eventually I will realize that he’s not coming home from the hospital and he won’t be answering the phone anymore.  I hope I’m strong enough to handle that moment.  Right now I’m ok with living in denial because the pain is unbearable.

Countless individuals have shown my family the power of true, unconditional love. Friends near and far have moved heaven and earth for one purpose.  To help memorialize their great friend and provide comfort and support to his family.  I am forever indebted to these folks.  There are not enough thank you’s for the love you continue to show my family.

Grief rips you apart.

Grief changes you.

It’s difficult to imagine I will never see my father’s face again or hear his voice again. Even in death he is showing me that he’s by my side.   I see my father in my dreams, a few nights ago I was hugging him so tight, knowing when I let go he would vanish.  He was glowing, he was smiling again, he was healthy again.  I felt a grandiose sensation of peace and love, I didn’t want to let go.  He smiled and told me to “Be happy.”  I believe that was a visitation dream.  I struggle to find the words to describe the feeling of love and comfort that dream gave me.  My wish is for anyone reading this and is grieving to have the same experience.  It was a monumental moment during my grieving process.  I am constantly finding fluffy white feathers, I even felt him brush my hair back the other day.  I am never alone, my father is always with me, and I’m beyond grateful.  But I’m selfish, I want my father here like it used to be.

I wanted a miracle.

I wanted my father healthy again.

I wasn’t ready to say goodbye.

I miss my father’s guidance and wisdom.  I miss my father’s friendship.  I miss the beautiful rapport I had with my father, his ability to be my father yet speak to me like I was his equal.

I miss my father!

I return to the mirror and search for my father’s eyes.  Through my father’s eyes I can see my journey, my future.  It’s blurry, but he is urging me to continue, to find happiness as I memorialize him.  I don’t want to lose sight  of my journey, so with a heavy heart I will carry on.  Through my father’s eyes I can see a reflection of who I am meant to be.

“The pain you feel today will be the strength you feel tomorrow.” –  Unknown

 

My First Father’s Day without my Dad

IMG_3376One of my father’s greatest gifts was his ability to love others unconditionally, flaws and all.  When I would complain to him about my perception of one’s ignorance he would always smile and say, “Lisa honey ignore them.  Be happy.” 

If you Google “First Father’s Day without Dad” you will instantly become inundated with post after post.  It’s only May and I’m feeling the anxiety building up for my very own first father’s day without my Dad.  I’ve been living on Advil and feeling sick to my stomach at the thought of it.  There are no words to describe the heartache I’m feeling and how much I miss my father.

As a little girl I would rush into my parents bedroom Father’s Day morning with my best attempt at serving breakfast in bed screaming, “Happy Father’s Day Daddy!  My Dad is so rad!!!”  Maybe not the best poem, but hey I was a kid.  One particular Father’s Day I tripped onto their bed, spilled the entire bowl of Cheerios on both my parents, milk and all.  I can still hear my father laughing and thanking me for thinking of him.

You simply cannot escape the Father’s Day madness.  The other day I took a massive detour in the grocery store to avoid walking past the overwhelming, obnoxious Father’s Day display of greeting cards. Bad enough the music they play now makes me cry at the drop of a hat.  I refuse to walk past the greeting card aisle until Father’s Day is long gone.  As if all that isn’t bad enough there’s the never ending Father’s Day advertising.

Buy Dad a grill set this Father’s Day!  

Bring home a delicious ice cream cake for Dad this Father’s Day!

Take Dad out for a big juicy steak this Father’s Day!

Pretty much every single Father’s Day advertisement revolves around food.  Way before I began grieving the death of my father, I was grieving the loss of his ability to eat. Our family became quite creative each holiday.  We proudly pounded our chests and exclaimed, “We do not need to revolve our holidays around food!”  Despite all this, a small piece of me was envious of the endless social media posts proudly displaying other families enjoying a mouth watering Father’s Day meal.  I wanted so badly to take my father to a restaurant for his favorite meal and raise my glass to my father on his special day.

My normal routine leading up to Father’s Day would start with me asking my father the following, “Dad what do you want this year?” Like many Dads he would respond, “You, your sister and your mother are my gifts, just be happy.”   I would then drive myself crazy finding him the perfect set of pajamas, perhaps something personalized for him, something to remind him just how much I adored him.  I would mail him at least 3 cards.  A funny card, a mushy sentimental card and another card because I could never make my mind up. 

This year the will be no searching for the perfect gift, no quest for the perfect card, no beating myself up thinking of something non food related to make my father smile.  My father died after a long, valiant battle with Stage IV base of the tongue cancer.  My only purchase will be some nice flowers and candles to put on his grave.

Just four months ago, I watched my father, the most wonderful man I know die.  First, cancer stole his ability to eat.  Slowly he lost so much weight that you could count his ribs.  Then he could no longer use the restroom on his own or get out of bed on his own.  During the final days of his life he was so weak he couldn’t even lift his hand to press the button on the remote control for the television.   Eventually my father’s voice became so gurgly it was a challenge to understand what he was trying to tell us.  Bit by bit cancer was ripping my father apart and I had a front row seat. 

Now all I’m left with are a lifetime of beautiful memories that send me into a tailspin of anxiety, depression, endless tears and a broken heart.   If you’re reading this and your father is alive promise me you will hug your father this Father’s Day and take him out to dinner.  Promise me you if you were blessed like me you will thank your father for a wonderful life.

If you’re like me, and you have lost a father whom you love and adore let’s embrace Father’s Day with gratitude and courage.  Let’s celebrate the our father’s memory and courage.  Countless individuals walk through life never experiencing unconditional fatherly love, to them Father’s Day represents a massive void.   There are many who will never know the love of a father.  When I think of this, I realize that I have been blessed with a magnificent man for a father.  

My father has always been my hero, the man who loved me unconditionally and made everything better. Even in death, he continues to show me he is always there for me.  This Father’s Day I will do something to honor my father.  Maybe I’ll release balloons, plant a tree, pay it forward.  I haven’t decided yet, but I will do something to make my new guardian angel proud and smile.

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Happy Father’s Day in heaven Daddy, I love you more.

Be Thankful For Your Ability To Eat

 

 I think about my father every single day.  I think about the pain and suffering he endured. I think about my father every single time I enter a restaurant or roam the food court in the mall.  I think about him every time my senses are overwhelmed by the robust smells of food.  I think about my Dad every single time I take a bite of food.

When I enter my favorite Italian restaurant the exquisite smell of food is so powerful I am moved to tears.  I am reminded of the life my father lived for 7 years.  A life without a morsel of food or an ounce of liquid.  Choking on what little saliva remained in his mouth. Yearning to eat again, fighting with every fiber of his being to stay alive.  Putting on his brave face and trying his best to sit at the table with us while we ate and he fumbled with his feeding tube.  Listening to our guests complain that their food had too much salt, too many peppers (yeah that really happened!) as he quietly inserted the syringe in his feeding tube and administered his feeding via a peg tube.  Quietly wishing that his biggest complaint was not enough peppers but also quietly forgiving our village idiot, I mean our guest for his ignorance.

The majority of our social lives revolves around food.  We are constantly “breaking bread” with others.  Holidays, special events, everything revolves around food.  My goodness just count how many television commercials have food in it!  Food is everywhere we turn!

My father died unable to eat a morsel of food or drink an ounce of liquid because his cancer prevented him from enjoying something so many of us take for granted.  My father died choking to death on what little saliva remained in his mouth after aggressive radiation treatments.  I’m haunted by the memories of suctioning giant clumps of phlegm from my father’s mouth during the final days of his life.  My hands trembling as I stuck a massive tube in my father’s mouth, tears brimming my eyes as I pleaded with God to help us.  Quietly praying, begging and pleading with God to make my father comfortable during the final days of his life.  My father watching me with tears in his eyes apologizing to me that he was too weak to do this himself.  Both of us emotionally exhausted and heartbroken from this trauma.  When I finished with this medieval contraption I kiss my father on his forehead and remind him he’s still my superhero and a little suction machine wasn’t going to change that.  I’m certain the sounds of my heart breaking were deafening that night.

I proudly wear the scars from my father’s battle.  I helplessly watched my father bravely fight to regain his ability to eat again.  Years of endless swallowing therapy, having his esophagus stretched.  All sorts of crazy things just to enjoy one last bite of food.  I become enraged at the cruel, out of line jokes when you mention swallowing therapy to someone unaffected by a swallowing disorder.  Therapy that in the end only gave my father unnecessary anguish and was never enough to jumpstart his muscles allowing him to eat again.  I see no humor in my father’s dysphagia.  I see no humor in anyone that suffers endlessly and dies longing to eat.  Even a criminal on death row gets a final meal before dying.

I choose to live my life and embrace it.  If I choose to indulge today and have a big greasy cheeseburger washed down by an ice cold beer I will enjoy every last bite.  I will not go complain to my Facebook friends how I “cheated” on my “diet”because I know better.  I will not fall victim to the latest and greatest fad diet.  I will thank God that I’m able to enjoy my meals.

On the days when my life becomes overwhelming I will take a deep breath and be thankful because I know it could be so much worse.

When Cancer Forces You to Say Goodbye

 

Papa & Kayla 2015

Losing someone you love is a very painful experience.  Watching someone you love valiantly battle cancer is a life changing experience.  I watched my father fight Stage IV base of the tongue cancer for 7 years.   There are no words to describe how helpless I felt as I watched my father slowly die before my eyes.  Something outside of my control was slowly taking my father from me.

One thing that is for sure, no matter how difficult circumstances became throughout  my father’s illness I always found a way to express my love for my father.  I always entered my father’s room full of hope ready to embrace the day.  During each telephone conversation, each visit, I was wearing my battle gear right along side my Dad.  We were going to try our best to beat this together, as a family.  I made sure to show my deep admiration for my father’s strength and courage with each visit.  I was thankful for each moment we shared together, and the possibility of just one more day with my Dad.

My father died knowing how much I loved and adored him, and for that I’m eternally grateful.

Saying goodbye is never easy.  Perhaps the fact that my father was sick for so long forced me to open my eyes and realize how precious life is.  No one is guaranteed tomorrow. My father’s illness and death are now a part of me.  Below are some valuable lessons I learned from my father’s journey.

  1. Never miss an opportunity to say “I love you” – as cliche as this sounds this should be your number one priority.  Not a day went by that I didn’t speak to my Dad and tell him I loved him.
  2. Share photos and memories – During the last few days of my father’s life I vividly remember sitting next to him browsing old photos, sharing fond memories.  We laughed, cried and laughed some more.  I had a great childhood and I made sure my Dad knew how grateful I was.
  3. Respect the dying person’s wishes – My Dad had all his senses, HE was in charge.
  4. Keep the peace – Listen it’s flat out obnoxious to walk into a dying person’s room and shoot your mouth off.  If the immediate family invites you in at the request of the dying person walk in, pay your respects and keep your comments to yourself.  Any discord in the environment will add to the load of the dying person.  Bickering causes unnecessary distress to the dying person and the immediate family.
  5. Your actions speak volumes – My Dad and I were the chatterboxes in our family.  The night my father was dying I lost my voice.  I just sat there holding his hand, praying.  For me, at that moment words were not needed.

In honor of my Dad, and countless patients like him it is imperative we take full advantage of the time we have for them and never take it for granted.

Life is a precious gift. Never miss an opportunity to embrace it and express your love.

 

 

Anticipatory Grief is Real

My father was my biggest fan in life.  I spent 40 years with this man cheering me from the sidelines.  He taught me how to throw a baseball, how to drive, how to dance standing on top of his feet.  He introduced me to doo wop music.  He wiped my tears and gave me butterfly kisses.  But most importantly he taught me how to appreciate life and the importance of family.

At the young age of 61 my father was diagnosed with Stage IV base of the tongue cancer. Although he was cancer free for 7 years his body slowly deteriorated from the intense radiation damage.  The radiation damage so fierce it was like watching Superman receive a dose of kryptonite.  He was still my father but became a man who was dependent on my mother and could no longer take care of himself.

When hospice started coming around the first thing they do is bombard you with brochures.  I was so deep in denial I convinced myself those brochures were for “other families.” In my head hospice was just there to “help out.”  Along with a gigantic binder that discusses pretty much everything you need to know about death we received a brochure on “Anticipatory Grief.”  I took one look at it and decided to save it for those “other families”.  I remember handing it to my father’s nurse and saying, “Thanks but no one is dying here.”  Thank goodness hospice employs the most compassionate human beings on the planet because she smiled and said, “Ok, but let’s leave it here if you decide to read it.” 

My father tried his best to prepare us for his death.  The week before he died we sat in his hospital room and he told me, “Lisa honey, I can’t do this anymore.”  I knew what that meant and I begged him to not go.  In between gut wrenching sobs I managed to remind him, “But I need you to balance my checkbook.” Nothing like some good old fashioned Italian guilt to keep someone alive.  My father laughed and reminded me that I did my checking online. He then held my hand and told me, “You’re going to be fine, be strong and stay kind.  You will always be my baby and I will always be with you.”

A week later my father died surrounded by family.  

Days after my father’s death I was rummaging through papers on my parent’s kitchen counter and next to my father’s extensive collection of medications was the gigantic binder from hospice.  Feeling extremely anxious, I decided to take a peek at all the handouts hospice gave us.  I know what you’re thinking, but please understand for me accepting my father’s mortality was something I struggled with.  It’s something I’m STILL struggling with.  Right in the middle of what seemed like hundreds of papers was an explanation of “Anticipatory Grief” and how to handle it.  I read it and it hit me like a ton of bricks.

Defining Anticipatory Grief:  Anticipatory grief is the name given to the tumultuous set of feelings and reactions that occur in some people who are expecting death in a loved one.

What?  You mean hospice was right? 

Anticipatory grief also has some symptoms that are distinct from normal grief.  These signs include getting ready for what life will be like after the loved one is gone.  As my father’s health grew more and more dismal I tried my best to prepare myself for his death.  On one particular occasion I became so upset I had to pull over from driving because my tears and emotions so overwhelming.  I remember feeling like I was drowning, I was sobbing so much I could barely catch my breath.

Below are the types of anticipatory grief I experienced:

  1. Sadnessthere is no way around it, watching my father fight with every ounce of his being to survive made my heart heavy.  I had no shortage on tears.
  2. Anger I was enraged that my father was given this uncharted path in life.  Towards the end of my father’s life I had to tune out anyone partaking in a fad diet.  In my eyes, my father’s ability to eat was stolen and I could not understand fad diets. Food became the symbol of my father’s struggle.  In so many ways it still is.
  3. Fear I lived in constant fear of losing my father.  Could I survive this?  Was I strong enough? 
  4. FatigueI tried to disguise my fatigue, but I was mentally exhausted. On numerous occasions I would see someone’s lips moving and I knew they were speaking to me, but I was too tired to listen.  Think Charlie Brown teacher speaking. 
  5. AnxietyEach time my phone would ring my heart would race.  I was petrified that my father would die and my mother would not be able to reach me.  I began to sleep with my phone next to my pillow.  My phone became an extension of my body.   If I misplaced my phone for just a minute panic would set in. 

As I reflect back, anticpatory grief makes sense.  How could I not grieve in anticipation for the loss of the man who gave me life, the man who was my hero and my best friend?  Throughout my father’s illness I would sit in a restaurant and mourn the man who could no longer enjoy a slice of pizza or toast a special occassion with our family.  I would stare outside my parents window to the golf course and watch men my father’s age golfing and think to myself, “why my father?”

Many times tears would fill my eyes thinking of my Dad from back when he was strong and healthy. 

My advice to you is if someone you love is terminally ill do NOT do what I did.  I should have listened to the experts, or at the very least given them a chance.  Accepting my anticipatory grief may have allowed me to prepare emotionally for my father’s death.

 

 

 

Please Visit My Dad

img_9722My Dad lived on a peg tube for the last 4 years of his life.  The last year of his life he was housebound.  The last 4 months of his life he was on hospice unable to perform basic tasks.  I wrote the below journal entry in September 2015 with the exception of the last three paragraphs that I recently added

Please visit my Dad.  

You remember my Dad, he was the life of the party, he could make anyone laugh.  When I was 5 years old he told me chocolate sprinkles were chocolate covered ants.  I haven’t had chocolate sprinkles since.  He was the tall, good looking guy that all of my dates were afraid of.  He had a zest for life.

Dad isn’t doing well these days.  With each visit I say good bye to a little piece of him.  A few days ago his hospice nurse told us he is showing signs of sundowning.  Sundowning is symptom of Alzheimer’s disease and other forms of dementia.  How can life be so cruel?  He hasn’t eaten in 4 years, he is housebound and now this?

Please God don’t let my father die unable to eat and remember his loved ones.

Our heart to heart conversations are a thing of the past.  I sit next to him on the couch and watch him stare at the television and shake in pain.  We sit in silence holding hands with tears building up in our eyes.  My father ends each visit apologizing to me for not having the energy to talk.  I don’t care, I just want my father in my life.

He screams in pain, his body is so frail and skinny.  He no longer looks like the athlete you remember.  He lives on a peg tube that is connected to a feeding pump.  His feeding pump runs 16 hours a day.

He stays in touch with his friends and family through emails, although typing is becoming a struggle for him these days.  Close friends and family visit and stay in contact.

When he’s feeling up to it, I catch him watching the Ranger games texting furiously.  Whoever you are THANK YOU!  You made him smile today.

Please don’t wait for my father’s funeral to visit.  

Please don’t let your fear of what if’s hold you back from visiting.  Please don’t tell us you would visit but you are uncomfortable eating in front of a man who cannot eat.  Please don’t tell you would visit but you know things are hectic.

This is Al, the guy who would walk 500 miles barefoot to visit you.

So please before it’s too late visit my Dad.

My father passed away surrounded by family January 17, 2016.   Immediately following his death a very small group of people offered excuses rather than condolences.  Perhaps the most unforgettable excuse was just a few days after my father passed we were told, “I’m sorry for your loss.  We would have visited but seeing Al so sick was really upsetting.” 

We simply smiled and ignored the comment mainly because our grief is consuming us.  But what I WANTED to say is, if it’s too much to handle for YOU imagine his wife who shares a lifetime of memories with him or his children share his DNA and pride themselves on being “Daddy’s girls.”  Don’t you think my father’s immediate family would have appreciated your support?

Right up until my father’s last breath he treasured his friendships and family.  There is no script on how to act when a loved one is terminally ill.  But one thing is for sure the calls, the texts and the visits not only make the patient smile it makes the family smile and realize their loved one is a legend.  And my Dad was a legend.

 

Once the storm is over

Anyone that has lost a loved one knows all too well that the grieving begins after the funeral is over.  The immediate family returns home to significant void.  The night my father passed we walked into the house to find his coat hanging in the closet and his slippers next to the couch glaring at us.  Golf clubs still in the garage waiting for my Dad to get better for just one more round of golf.  We still awkwardly make our way around my father’s chair.  Many times we think, do we sit there or not?  Constant reminders of my father are scattered throughout the house.  If I close my eyes and concentrate sometimes I can still hear his laugh.

Good intentions of well wishers vanish into thin air.  The immediate family is left with a broken heart, a massive void in the family and a few hefty bags of the deceased loved ones belongings.

Every single relationship in your life is reevaluated.  Friendships are now ranked by who offered condolences, who texted you, who picked up the phone and maybe even who “liked” your latest photo of your deceased loved one on social media.  Did they read between the lines today and “get it?”  Do they know that today is the day your grief is so overwhelming that you feel like Rose on the Titanic desperately searching for Jack or some sort of life support?  Is their crystal ball working today????  

Since my Dad passed my entire life has evolved into a combination of countdowns and firsts.  It’s been 3 and a half months since my Dad passed.  Meaning it’s been three and a half months since I heard my father’s voice, held his hand, kissed and hugged him.  It’s been countless phone calls without hearing my father’s voice say, “It’s my Lisa Mia!” Other than my grandfather who is also passed, no one calls me Lisa Mia.  It’s been my first Valentines Day, first Easter, now my first Mother’s Day the first of many dreaded firsts in 2106.  Saturday was the first time I saw my father’s name etched in stone at his grave.  After some gut wrenching sobs I blew kisses to his name, looked up at the sky and whispered, “I love you Dad.”  

 

Slowly, you begin to rank relationships based on who reached out to you on those firsts because you begin to realize this is your life support when the tidal waves of grief come crashing down.

One thing grief does is it opens your eyes to one’s true colors.  You quickly learn the meaning of actions speak louder than words.  You find yourself silently observing what a person does because it tells you who they really are.

I’m sure there are some that find this blog too sobering and are one click away from the block button.  I’m ok with that!  But before you do, I urge you to take a peek.  Lately I find myself saying, “If only I knew what I know now then.”  

Often times I find myself thinking of my friends who lost loved ones prior to my Dad’s passing.   I hope that I was as supportive to them as they have been to me.  Did I send a card, basket or express condolences like countless others have done for me.  Or did I just pretend that their loved one never died like some have done to me?  Did I pass someone by shortly after the death of their beloved loved one and not offer condolences?  Gosh, I hope not because I now know how agonizing this pain is, and I now understand that as time passes you WANT to remember your loved one.

Losing someone you love is painful.  Grieving is a personal and individual experience.  But sadly, we will all grieve at one point in life.  Why not be that person that picks up the phone or sends a text?

Why not be the person who is there after the storm passes?