Monday, June 21, 2010

Mom's Side: The Final Voice

I cannot express what an incredible experience writing my story and reading my sibling's narratives has been.  Today my mom shares her perspective.  Here is the final voice from my family's encounter with cancer and the loss of my father.

To read my children’s comments on their father’s death has been a very painful experience for me, yet I know at the time all this was happening I probably could have changed nothing. I cannot explain to anyone how devastating a cancer diagnosis one January day so many years ago was for me. I was forty years old and my oldest child had just gone to college, years of working to make a marriage the best it could be had finally reach the point of having a little time for ourselves and seeing our children begin to progress to delightful self sufficient individuals. In within a few moments my whole world changed forever. The fear and anger I felt that day are something I will always remember. I remember calling my friend on the phone and just bursting into tears. I cried off and on for the following three years. How could this be happening to my husband and our family?

From the beginning of his diagnosis we had always felt my husband’s illness would be terminal, having a sense of this does not make it any easier to realize it is true. It is a path which changes over time and as it becomes more prominent it is harder and harder to have a normal life. My heart aches as my children write about not being able to talk to me as their father’s illness progresses. Towards the end of his life my life was in complete disarray for many months before. I was not only watching my husband become extremely ill day by day, I was also dealing with the knowledge my father was very ill and I could not be with him, because of Lyn’s illness. I was so torn between the two most important men in my life each one so very ill and I couldn’t leave one to be with the other.

By September of 1993, my husband’s illness had progressed to the point where he had tumors on his brain stem and in his lungs. He had tried chemo the April before, but the results we had hoped for did not continue. The doctors were quite frank and told us not to expect anything beyond the first of the year. After dealing with an illness for such a long time, I was torn emotionally; there was a part of me wishing my sweet husband could be out of his pain and this nightmare could be over and the other part of me who wanted to cling to him as long as I could.

One morning eleven days before Lyn died we received a 5:00 a phone call telling us my father was dying and to come quickly. Sitting with my father for his last few hours was probably the most therapeutic experience my husband could have had. When my father died it was as though he realized it was okay to let go, that the world around him would survive and he could move on.

I can’t even recall the next eleven days very well. We attended my father’s funeral, relatives on my side of the family came from Utah and my very social husband was not even well enough to socialize during the evenings or at the family gathering after the funeral. All of the sudden his life seemed to be drifting away. As the days progressed, his breathing became more labored and he needed a breathing machine for oxygen and he could hardly function. More and more he used his narcotics to control his pain and he was growing weaker every day. We spent many hours just holding one another and talking of little or nothing, but enjoying quiet moments together.

On the day he died we started at the doctor’s office to have his lung checked and ended up at the hospital so they could help him breathe, our few months turned into a few hours. When I called Meredith we both expected him to make it for at least a couple of days from our discussions with the doctor. I never thought it would be a couple hours later I’d be calling her to tell her that her father had died.

Close friends came to see Lyn for the last time, by the time they arrived he was unconscious, the wife sat down next to his bed and held his hand, she was holding his hand when he drew his last breath. I rarely admit how sad I was not to be the person close to him during his final moments or how hard it was to have to call my children and tell them their father had died or to greet my two youngest who were bringing dinner with the knowledge their father had just died.

When I returned home there was a group of people waiting to offer comfort and help, yet my greatest wish was to be alone, to cry and grieve for my losses of the last two weeks. Unfortunately life doesn’t allow this process and it was a few months before I could face my personal pain and loss.
I often tell people how much I miss my husband and my children wish they could share their life moments with him, but I will always be grateful for the sweet experiences we shared during his illness and the precious life lessons learned.

Friday, June 18, 2010

Mindy's Story

When I think of my father, the strongest memories I have are of the way he smelled of Old Spice and the outdoors, the dark mustache he always wore, the warmth of his generous smile, and the deep, soothing timbre of his voice. I once had a substitute teacher in high school who distinctly reminded me of my father. I felt a dual reaction to this realization. A part of me wanted to sit and stare at him forever, soak in the familiarity of him. Another part wanted to curl up in a corner alone and cry because I realized the sharp memory of my father's face was fading and would continue to dull over time. 


I was ten years old when my father started experiencing mysterious pain in his legs. Looking back, I am not certain which is worse: watching someone endure pain without answers  or knowing for certain that they have a rare form of cancer. His diagnoses came somewhere around my eleventh birthday and it seems that I should be able to recollect the exact moment my parents broke the news. When it comes to my father's illness, however, my memory seems to be broken in some way, shattered into disconnected fragments.

The way I remember things, dad endured multiple surgeries over the four years he was ill, as well as chemotherapy and radiation. In some ways, cancer treatment became a regular part of our lives, bringing with it both despair and moments of hope. When I think of those days, I can distinctly hear Dad in the bathroom, retching violently, clearly in agonizing pain. I recall watching him grow pale and frail,  confused as I witnessed someone I saw as so spiritually and intellectually strong become so physically weak. I often try to replace memories of him lying on the floor or curled up on the futon in pain with healthy, vibrant images of my father.

As I've discussed Dad's illness with my family over the years, it's become clear to me that everyone expected dad's death but me. My parents never made empty promises to us. They walked a fine line between helping us to understand the reality of dad's illness without unnecessarily burdening us. I cannot imagine how difficult this must have been for them. To this day, I hate those moments in films when a parent promises their child they'll never leave because I know this is a promise they simply can not keep. 

My father was sick for four years, with frightening news of new tumors, difficult treatments, and times of recovery. His illness became my reality and, while I did not want him to suffer, I was not prepared for his death. I lived from day to day and did not want to imagine life without him. What others recognized as signs of a terminal illness, I must have internalized as another difficult part of the cycle with hope of recovery again. My father suffered a great deal, but we had wonderful, cherished times together as well. I recall watching Dad lose every bit of hair on his body, down to his eyelashes. But then hair started to grow anew, returning to his head soft as a newborn baby's. Hopeful in it's own way.

I, frankly, don't remember a sudden turn in Dad's death, meetings with Hospice, or recognizing that he was letting go. This gap in my memory disturbs me, but I feel helpless in recovering it. Perhaps reality simply became too much to internalize, so I protected myself. This Pollyanna strategy worked in its own way over the next few years, as I tried to comfort myself with platitudes of faith, reassure others that everything was okay, and take on other's happiness as my responsibility, whether they asked me to or not. It eventually failed me in college, when the weight of my feelings became too great of a burden and I struggled through debilitating depression.


I carried guilt over the day of Dad's death for years. I was 14 and hanging out at home when my mom called from a routine check up to tell me that they'd found new tumors on Dad's lungs. To my shock and dismay, they checked him into the hospital and gave him only the weekend to live. Devastated and overwhelmed, I asked my mom if I should tell my sister, McKinzie, this news or wait to let Mom and Dad explain things to her. Mom, in her kind way, relieved me of that burden and told me I could wait. 


McKinzie came home from work and I told her Dad was in the hospital, but nothing else. We didn't rush to the hospital, but actually stopped to grab Taco Bell for lunch on our way. When we arrived laughing at some silliness, Dad was gone. I felt for years that I'd robbed McKinzie, my fellow traveler of those years, of the small bit of preparation she deserved for that moment. Years later, I revealed this regret to her and felt both shocked and relieved to hear that his death did not come as a surprise for her. I, alone, seemed woefully unprepared for Dad's death.

While I wish I could have spoken to my father one last time before he died, I am grateful that I saw his body on that hospital bed. It may sound odd, but I understood in that moment that our spirits and bodies are separate. I kissed his cheek, but knew that his spirit was no longer there. This knowledge confirmed what I believed about life after death, as have sacred, quiet moments when I've known he is not permanently gone. As I've struggled with grief, longed to know him as an adult, and wrestled with the loss of him, this knowledge has sustained me.

Thursday, June 17, 2010

McKinzie's Story

Dad dying was like a dark grey gloom that never seemed to end rather than a flash lightning that comes and goes quickly.   It started mid eighth grade where I thought my biggest concern would be how I’d do on the girls basketball team unfolding into the fall of my junior year when I wished the only thing I had to worry about were my grades in geometry.  Life became a bipolar cycle of treatments, surgery, fear, stress, loneliness, disappointment, happiness, relief, and back to treatments.  Though the cancer never left, life became an effort to  make the most of the times when Dad wasn’t home sick in bed, not working, unable to sit and build his planes, or join us for things like dinner.  I hated all these treatments and surgeries and the ups and downs that it created. 

His chemo best illustrates what made his cancer treatments and surgeries so hard.  I don’t remember exactly where his cancer was at this time (I think either his stomach or lungs) but this treatment created six of the most miserable months of his illness.  It involved one week of intensive chemo, administered in the hospital.  This meant Mom had to yo-yo between us kids at home and Dad in the hospital.  It meant short visits with Dad that week and missing my parents at home.  This was followed by two weeks of recovering from the chemo treatment at home.  During this time Dad would progress from being gravely ill, susceptible to any bug/virus,  and not really accessible, to slowly getting better.  The next week he would finally be able to work, eat dinner with us, do “normal” things.  Then it would start all over again.  For six months we functioned on this four week cycle.  This general cycle, however, permeated throughout his illness, manifesting when he would have a surgery, or whatever the doctors recommended in an attempt to fight the cancer. 

While I hated these treatments, I knew that each one  gave us more time, extending Dad’s life a little longer and making his death something that would happen later rather than sooner.  Each time he got “better” I had more time to sit and talk, learn how to drive, laugh with him, and watch him build his planes.  That was true until the two weeks following the death of Grandpa Beckstead.  In the weeks following his death something changed in Dad’s health from “relatively good” to “horribly bad” .

Grandpa had been fighting his own battle against cancer for about 2 years.  We new that by the beginning of October Grandpa didn’t have long to live.  On Thursday Oct. 11 our family got a call that Grandpa was dying.  Merilee and I chose to go with my parents to Tacoma to join other family members to be with my Grandpa as he died.  At this point Grandpa said very little but we new he could hear us as we talked to him and each other.  It was not long after we arrived that he passed away.  While there was a feeling of sadness there was also a sense of peace, comfort, and relief in his death. 

In the days following Grandpa’s death and funeral it seemed that Dad turned a switch, not to off,  but to dim.  Where Dad seemed to be doing o.k. he began to struggle.  Walking, talking, and breathing became difficult.  A distinct wheeziness to his breathing developed and the doctors starting telling us we had till Christmas.  This changed to a month, and then to weeks.  The gravity of the situation really sank in for me when Mom meat with the hospice worker to set up home care. 
The details of the day Dad died and the events following alternate between being fuzzy and crystal clear.  I know that Thursday I went to school, probably went to work, and finally home where Mom called (or I called her) and was told to pick up fast food before Mindy and I headed into the hospital.  I don’t remember feeling rushed to get there as Mindy and I swung by Taco Bell and then to the hospital.  We were a bit jovial as we headed into Dad’s hospital room where I remember knowing instantly that something was wrong.  Mom was there with family friends, the Rollins, who had stopped into see Dad.  In the time it took us to get there, Dad had died.  He went from dying sometime, to months, weeks, days, to hours.  In that instant the thing I was able to focus on was my mom’s reassurance that my Dad’s death had been very similar to my Grandfathers.  My Dad’s death carried that sense of peace, comfort and relief. 

Prior to Dad’s funeral we had a brief viewing.  I went in to look because others had encouraged me to do so.  I only stayed briefly.  For me that was not my dad, and I wanted to remember him not necessarily in perfect health but as a living person.  As his funeral progressed kind words were shared,  beautiful music sung, and giggles resulted.  The giggles came from Mindy and I as we suddenly felt a consistent vibrating pew below us and noticed Mike (my brother-in-law) attempt to still Meredith’s bouncing knee.  I remember thinking that Dad would have chuckled too.

Cancer is devastating, causing grief, sadness, and immense stress.  In my experience it also brings out the best in people.  I am grateful for those who supported, prayed and helped out my family and myself.  My family was blessed by the gentleman from church who knew a couple of pizza’s would help relieve the stress of feeding two hungry kids at home.  He did not do this just once but many times. The elderly friend of Dad’s who popped over to do yard work without a word of his presence.  The big sister away at college who sent thoughtful letters of encouragement and love to a sad younger sister.  They were looked forward to and appreciated.  The friends and family who  took the time to plan and come to my surprise 17th birthday party in the few days following Dad’s death.  While I remember the sadness of those times, I remember those that eased the daily stresses and helped bring some joy to myself and my family more. 

Wednesday, June 16, 2010

Merilee's Story

 Here is my sister Merilee's story.  I am the oldest and she comes next out of four May girls.

I cried.  It was nothing new.  If I had to count, I’d probably done it nearly a thousand times in the last three years.  But this time, it felt different; I knew that tides had changed and it was now “the beginning of the end.”
It had already been about three years since Dad was diagnosed with a soft tissue sarcoma cancer.  He had undergone radiation, 2 surgeries, and chemotherapy.  I shouldn’t have been surprised by the call from my mother saying they’d found more tumors.  But I was; I was surprised and devastated, and I told her my premonition.
She denied it of course, as did my Dad.  It wasn’t the beginning of the end as I claimed, it was just some tumors they found in his lungs.   Just like the other tumors they’d found over the last few years.  We’d have plenty of time left to enjoy our father.
Perhaps they thought I was just being dramatic, as I suppose I was sometimes during my teenage years.  But as I sat in my one bedroom apartment, alone, I felt the emptiness close in around me.  I was nineteen, I lived alone and feared that everyone I loved would eventually leave me.  I wrote of emptiness, loneliness and despair in my journal, because I had no one I could talk to about my heartache except myself.  My sister and childhood friend had moved to Utah and married by this time; it was difficult to explain the agony of watching our Dad die when she was so far away.  My boyfriend had left on a mission and shouldn’t be bothered with trivial things like death.  My roommate had moved out, probably because I was depressed and consumed by the fear of losing my father.  No doubt I was an effective mood dampener.  Who wants to deal with death when life and love await?  I hadn’t yet developed a relationship with my two younger sisters to confide and call upon them for comfort and strength.  In fact, my parents frequently asked me to spend time with them, help them take their mind off the stress at home.  And I felt it would be a burden to talk to my mother or father; they had enough to deal with without having to deal with me.  It was my job to make everyone happy, not depressed with my problems – even if they were very much the same as everyone else’s.   I didn’t believe I would ever feel more alone than I did then.
On March 25th, 1993, they operated on Dad to remove the tumors in his lungs.  It was then everyone learned what I already knew; it was the beginning of the end.  And while it would usually feel good to be right; it felt awful and I was without the skills or life experience to truly grasp the pain of death.  I didn’t fear what lied ahead for my dad on the other side, I didn’t even fear that I may never see him again.  I simply ached inside, knowing I would never be ready to let go.
When they operated, they found tumors along the lining of his heart that they were unable to remove at that time.  They would wait, and do it later.  He spent nearly a month in the hospital following that surgery; and I visited at least once every day.  What else could I have possibly done?  I was consumed by the fear of his death, of not being there for him, not being ready, and not understanding how I would survive.
He called me crying one day from the hospital, afraid and unable to reach my mom.  The middle class certainly didn’t have cell phones back then and she wasn’t at home.  I dropped everything I was doing to rush to the hospital.  I would have done anything to stop the pain, but I was helpless. 
They never got do perform the surgery to remove the remaining tumors.  Dad died six months later, almost a month after his 47th birthday.  For all the effort I had put into being there for him when he was in the hospital for a month, I missed him the day that he died.  I missed him by mere moments.  My mother had called shortly before my shift began and called every hour thereafter with an update.  He was progressively getting worse.  Every time I insisted that I would leave work right then and be there, I was assured he would be there when I left.  Five minutes before the office closed, Mom called.  He had just died.
It wasn’t supposed to happen so fast, although the reality was he’d been sick for nearly four years.  He only went for a doctor’s appointment.  He was supposed to be home when I got off work.  But he was dead.  He was gone; and I knew instantly that it would be too long before I would ever see him again.  I crumbled into pieces that thereafter took me years to put back together.  Years before I would ever even learn to talk to my own family about the pain that I felt when he left.

Tuesday, June 15, 2010

Mommy Needs Hockey: Our Ride: Loss From Five Perspectives

Mommy Needs Hockey: Our Ride: Loss From Five Perspectives

Our Ride: Loss From Five Perspectives

     I have often been fascinated by the different perspectives dad’s cancer and death had on each of my family members.  Periodically I’ve pondered a collaborative book called “The Cancer Roller Coaster: A Different Ride for Each Passenger,” or “My Side of the Story: One Family’s Perspective on Cancer and Death.”  Except for dad we are a family of females. Led by mom we are strong, independent, opinionated, and emotional women.  We have five very different, uniquely individual, and deeply personal experiences to share.  Thanks to my sister, Mindy, we have all written about our point of view and agreed to share them.  She asked us each to write for her blog and has agreed to let me post them on my blog too.

                                    My Ride: A View From My Seat

    I’ve always felt like the odd man out in this event.  Dad was diagnosed with cancer my freshman year at college.   I was gleefully enjoying and majorly screwing up being independent for the first time. My family was in Washington State while I was miles away in Utah.  I don’t remember any build up or warning to the phone call from my parents telling me dad had cancer.  I thought it was just a routine call until they started explaining that a tumor had been found and that surgery and chemo were options.  I remember feeling shocked, numb and alone.  Throughout dad’s illness, I felt like I never knew what was going on.  A friend from home passed me on campus and asked me if my dad was going to lose his leg.  I had no idea what she was talking about.  I hadn’t heard anything of the sort.  I rushed to my apartment and called home.  It was a small possibility my mom assured me.  They hadn’t told me because it was so unlikely.  I was devastated and always worried that I was missing information.  I felt fearful and alone.
    It was difficult to go home that summer.  In a normal situation it would be tricky to return home after being on your own.  There are too many observers, too many expectations, too many people.  I wanted to go home and be with my family. I wanted to know what was going on and to be helpful.  However, I wasn’t prepared for the awkwardness.  I felt a little resentment from my siblings. I sensed they thought it wasn’t fair that I had missed out on watching dad get sick or that I’d “gotten” to be away during much of the hard work.  Also, my family had been in crisis mode.  They’d had to adjust, sacrifice and help out.  I hadn’t been there.  I couldn’t be there.  This meant new roles had been taken on.  Even though technically I was the oldest, I hadn’t been around to fulfill my responsibilities.  The next oldest sister, Merilee, had taken on much responsibility and my role.  I got home and felt like I’d lost my place in the family. 
    I eventually returned to college, got married and went home for vacations and visits only.  I dreaded the phone ringing those years.  I always worried what a phone call would bring.  My memory is that in the fall of 1993 we got news that dad would probably be around through the holidays, but not much longer.  We planned a big Thanksgiving reunion with dad’s family after we got the news.  On October 11,1993 I received a phone call from my mother telling me that her father, Grandpa Beckstead, had passed away.  She told me that he had been at home and that everyone had got to be there as he died fairly peacefully.  I have to admit I was jealous.  Being a bit selfish I was a little comforted when my mom told me grandpa had mistakenly called people by my name at times in the end.  I know that sounds awful, but once again I felt so alone.  Since, I was a poor college student and my parents were paying medical bills, I didn’t fly home to attend my grandfather’s funeral.
    It was mid afternoon and between classes when my mom called me ten days later.  My dad was at the hospital and the doctors said he only had days to live.  I needed to arrange a flight home so I could say goodbye.  Shocked, I got off the phone, called the airlines and booked a flight home first thing in the morning.  I had a late afternoon class to attend, but I couldn’t do it.  My husband decided to take me to a movie to distract me.  We picked the comedy, “So I Married an Axe Murder.”  It was the perfect distraction. 
    After the movie we drove to my in-laws for dinner.  As we walked in the door my mother-in-law told me my mom had called and to call her back.  Relaxed from the movie and thinking she was double checking my flight information, I quickly returned her call.  Her news was not what I’d expected.  While I had been enjoying the movie my dad had died.  First, I felt guilty for going to the movie.  Second, I was mad.  He’d died!  Why the hell did he do that?  I was coming tomorrow.  He couldn’t have waited one more day?  I wept.  I cried until my nose ran and my head hurt.  My husband held me, then made arranged for both of us to fly to Washington.
    I was surprised, and I’m ashamed to admit it, a tiny bit pleased, to discover, dad had robbed us all.  He died before anyone, but mom could be at the hospital.  It’s awful to admit, but I’m just being honest, for once in this experience I wasn’t alone.
    I remember the viewing before dad’s funeral and everyone telling me I had to go see him that one last time.  Many people told me if I didn’t see him I’d miss out on an important part of saying goodbye.  I hated the viewing.  That wasn’t my dad there in the coffin.  It was a body.  My sister kissed his forehead.  I thought I should try that.  It was cold and just reminded me he was gone.  Don’t let anyone tell you how to mourn.  I say the viewing is awful, but some people find it helpful.  Listen to yourself.
    I gave the eulogy at dad’s funeral.  Mom asked me to.  I said yes only if everyone helped me write it.  I was so nervous I bounced my right knee uncontrollably the whole time I waited to do my part.  At one point my husband reached over and tried to still me with his hand. 
    “You’re shaking the whole bench.” He whispered.
    I shoved his hand away saying, “So.” and bounced until I had to speak. 
    I’ve often described cancer as a roller coaster.  It’s bad, then better, then the tumor is not shrinking or spreading, but not growing.  It’s years, then months, then weeks, then days.  It’s devastating, then hopeful, then unpredictable.  You scream, you smile, you wave your arms excitedly, you get dizzy and sometimes you almost throw up.  There’s little of the fun of a carnival ride with cancer, but there’s the ups, downs, tight turns, jerky stops and relief when it’s over.  The relief doesn’t come right away, but time, family and sharing like this are my best medicine.