Wednesday, November 11, 2015

The Dictatorship of Cancer ~ From a care-givers perspective.

Written by Jane Coley.

The uninvited entity takes up residence in your body.  The reality of how long it has been with you eludes us all. The attention this dictator demands is endless, and your body is no longer yours.  You become the ruled, and your every thought is controlled by it’s demands.  We helplessly watch as you are forced into acknowledging this unwelcome entity and as your life begins it’s journey of being forever changed.

“I hate you, cancer!”  Are the words you often repeat, as you look in the mirror and stare at the image of the stranger you are becoming.  Skin hangs from your once toned body... hair is gone... your stamina dwindles as you try to focus your thoughts.  You lie down for a nap, and while you slept a new day began... or is it still yesterday.  You silently look for the clues that will tell you when you are, as soon as you have detected where you are.  “I hate you, cancer!” you  mutter again, and your thoughts darken with hopelessness.

Normal...if things could just be normal again...and you mourn for your normal as if a friend had passed away.  There is no normal when cancer has you in it’s grip.  You wonder what it was you ever did to deserve this life-changing crisis.  But there are no answers, just endless questions.

Decades ago people used to ask, “What is this thing called cancer?”  But, with the passing of time, this elusive stranger has become a dictator of many lives.  We can recite the names of family and friends, as though reading from a written list, of those we know who have been forever changed by this pitiless intruder called cancer.

My Brother’s Cancer Story
With his permission.

His toned body had been forged by determination and grit.  He had kept a record of his running statistics, and the year-end results had totaled almost a thousand miles.  All his weight-lifting endeavors had also payed off, and his muscular body was the “trophy” any 30 year old would be proud of.  But my brother had just celebrated his 59th birthday!  It was February 2014 and Johnny’s age-defying efforts had kept him incredibly fit, for a man of any age.
Johnny before Multiple Myeloma.

In the beginning, the changes were slight...a little ache here...feeling a little extra tired and just not resting well.  His running statistics began to decrease.  To compensate, he exerted greater efforts, but the lessening results were frustrating to him.  The pain in his back was also becoming unbearable, and Johnny decided to see a doctor to help resolve these disturbing issues.

After weeks of waiting for the results of multiple lab tests, an assortment of full-body scans, with speculations of heart disease and kidney problems, the results were finally determined.  You have cancer...

When my brother’s cancer was first diagnosed, we were told things we didn’t understand... Multiple Myeloma... stage 3... lesions from head to toe.  Literally every bone in his body showed signs of the deteriorating effects of this rare blood cancer.

  • “Multiple myeloma is a type of blood cancer.  It starts in your bone marrow, the spongy tissue inside bones.  This is where your body makes blood cells, including a certain type called plasma cells.  These cells can grow out of control and crowd out the normal, healthy ones in your bone marrow.  When they build up, they form a tumor called a myeloma.  The name “multiple myeloma” means there is more than one tumor.  

  • Multiple myeloma can affect your body in different ways.  It can make your bones weak and easy to break.  Because your bone marrow makes blood, multiple myeloma can affect how many healthy blood cells you have.  Too few red blood cells (called anemia) can make you feel weak, short of breath, or dizzy.  Too few white blood cells (called leukopenia) can make it easy to get infections like pneumonia.  It can take longer to recover from them, too.  Too few platelets (called thrombocytopenia) makes it harder for wounds to heal.  Even minor cuts can bleed too much.” 
(Information from: )

Johnny before his cancer.
What termites do to a tree is what this cancer, multiple myeloma, does to the bones of its captives.

Multiple myeloma is considered to be incurable but treatable. Studies have shown that survival for myeloma patients has improved substantially over the last few decades.

My brother’s diagnosis, and the stem-cell transplant he was going to have, were part of the reason the decision was made for me to leave Kenya, for a short time, and fly to Arkansas.  Our mother was the other reason.  Mom had been struggling with other unrelated issues, and her emotional state was too stressed to bear another difficulty.

Johnny after the harvesting of his stem cells.
My brother, Johnny, and I have lived very different lives.  To start with, my husband and I are Independent Baptist missionaries, and, believing it was God’s calling on our lives, we have served as missionaries to Kenya, East Africa since 1995. We have lived in Kenya since March of 1998. Johnny, by his own definition, is an agnostic.  He summed up his philosophy of life to me with the lyrics of an old song:

I don't know where we come from
Don't know where we're goin' to
But if all this should have a reason
We would be the last to know
So let's just hope there is a promised land
Hang on 'til then as best as you can

I have always prayed for my family, and the urgency of this particular crisis had me reaching out to as many people as I possibly could, without invading my brother’s privacy.  “No public postings on facebook!” was his request, and I didn’t blame him one bit.  Cancer is a personal journey.

I had privately reached out to trusted friends and fellow believers, pastors I knew and my BMW group (Baptist Missionary Women) for prayer.  The BMW is a universal group of women living all around the world serving as missionaries.  Enlisting their prayer help meant it was possible for my brother’s name to be called out to God every hour, of every day, and I knew many of these amazing ladies would pray for Johnny as if he were their own brother.

Fighting for His Life

It was May 8, 2014, and I had just arrived from Kenya.  Johnny was still in the hospital at UAMS (University of Arkansas for Medical Sciences) waiting for his stem-cell transplant.  He had already undergone the harvesting process, which required a 24/7 treatment plan.  Twenty-four hours, for seven days, of chemo-drugs being continually pumped into his body, and then the harvesting of his stem-cells would take place.  Later, his own stem-cells would be transplanted back into his body on June 5, 2014.   During this time period, Johnny remained hospitalized and was unable to walk without assistance.  He used a walker and had to put on a back brace before he could take the short walk from his hospital room to the sun-room halfway down the corridor.  My brother was in the fight of his life, and we thought the cure was going to kill him before the cancer had done it’s unmerciful deed.
Johnny needing help to walk.

The cancer treatment itself had made Johnny’s body more sensitive to his environment.  In the middle of summer, he struggled to stay drink liquids of any tolerate smells and seemed sounds were also heighten as he complained about how loud I was when I stirred my morning cup of tea.  Almost weekly he would say to me, “I don’t think I’m going to make it.”  Everything had changed so quickly and drastically for him that it was as if his entire body and mind were in a continual state of shock.  Everyday was different, but nothing was better, and it seemed there was no end to these debilitating changes.

Johnny didn’t mask or hide his emotions, and he was in a fragile state.  You could see it in his eyes: there was no hope, and there was no desire to fight.  He had contemplated what he would do to end his life, and I think his greatest fear was that he would become too weak to balance thought with action, and he would be forced to live.  Thoughts of his adult son and daughter, who would be left to deal with the heartbreak of his decision, kept him from taking his life.  Years earlier his ex-wife, and mother of his children, had committed suicide; and Johnny knew he couldn’t put them through it again.

A few weeks after his stem cell transplant, Johnny was discharged from the hospital.  He still had almost daily labs to report back for, and I was his chauffeur.  Not only did I drive him back and forth from the hospital, but, in his weakened condition, I also wheeled him around the hospital in a wheelchair.  There were multiple destinations to go to for the different scans and blood work needed to re-evaluate his progress and response to his recent stem-cell transplant.

Not only was Johnny fighting the physical and emotional repercussions of this cancer, but he was also fighting to hold on to his independence.  I realized I needed to become more to my brother than just his chauffeur, and I waited for those moments when he would exhaustively relinquish his control and let me help him.

Mounds of information were coming at him, and I started taking written notes while we sat together with the multiple myeloma oncology specialist.  There were medication changes to make notations about and appointments to keep track of.  Johnny and I would talk about the things he wanted to ask the doctor and the things he didn’t want brought up in the conversation.  I would make the notes to help him remember for his next oncologist evaluation.

I also daily helped him by wrapping the port in his neck to keep it dry when he showered.  I learned the detailed process of how to change the sterile dressing on his port, too.  I learned the process of how to give him his home infusion of antibiotics, when he was fighting off another infection. Because Johnny was needing help with his wheelchair, I had also been in the room when the bone marrow biopsy of his spine was preformed.  Though I chose not to watch as the doctor tapped the instrument into his vertebrae, I couldn’t escape the sounds of the tapping and scraping as the doctor removed a portion of his bone for testing.  Thankfully Johnny was sufficiently sedated and didn’t feel anything but a slight pressure on his back.

Johnny would need to repeat the bone marrow biopsy multiple times.  There were also other exams and scans that would be repeated before his next oncologist evaluation.  There was the MUGA scan of the heart and an EKG, a full body MRI with contrast (which often lasted for 2 hours), a PET scan, CT, and lots of blood work and labs.  All of this was necessary to evaluate how successful the transplant had been and how to proceed further.  But Johnny wasn’t bouncing back as expected.  It was as if he was taking one step forward and two steps back.  He continued to lose weight.  He began to run a fever and it wasn’t long before another infection had him back in the hospital. This same scenario would repeat and continued far beyond the doctor’s expectations, and Johnny was struggling.

We watched as he seemingly melted before our eyes.  His once toned body had dropped a total of 56 lbs. and most of that was during the 16 weeks I was with him. I watched as his friends would visit him: it was all they could do not to respond with shock when they saw how drastically different he looked.  With his bald head and skeleton face the only thing that assured them they were in the right room was when Johnny greeted them by name.

Johnny wearing a funny cap of hair.
I remember the day his height was rechecked, and inches had also been stolen from him.  One of the RN’s attempted to offer a little encouragement by telling us she knew a patient who had lost 8 inches in height to this form of cancer.  But there was nothing reassuring in her words especially when you feel so helpless to stop the effects of this cancer.  We were left wondering how much more this monster would take before it was stopped.

A Glimpse of Hope

It was July, and Johnny was starting to show some signs of improvement.  With a rented hospital bed in his living room, Johnny was home, and we were again making the almost daily trips back to the hospital for blood work and labs, as well as infusions of blood, or platelets, or other needed fluids. He was still struggling to put on weight but he was getting around a little better, and he had started using a walker instead of the wheelchair.

While I was in Arkansas, I was enjoying as many opportunities as I could to be with my daughter, Kimberly.  Of our five adult children, Kimberly was the only one still living in Arkansas, though she was planning on moving to Oklahoma the following summer.  My other four children were all living in different states and time zones.  Billy was in Washington.  Jennifer lived in Florida.  Stephanie and her family lived in Oklahoma, while Abigail and her husband were then stationed in California.  While I was back, Billy had made plans to visit, but it was a surprise to Kimberly and to me when Jennifer and Abigail also came to spend a vacation week in Arkansas.  Stephanie and her family were only able to come for the weekend; but, for those few days, we were together; and it was great!  It had been 7 years since we were all in the same place at the same time, and we were making the very best of every moment together!
Far left, me holding my grandson, Kacey, Mom, Abigail, Billy,
Jennifer, Kimberly with the sun shining in her face, Chad and Stephanie with Kayin.

By August, Johnny was starting to get around better.  He was now only occasionally using a cane and didn’t need the walker or wheelchair any more.  His routine blood work and labs were down to 3 days a week, instead of daily, so we felt a release from that, too.  He was beginning to drive again, and he had started lifting weights.  Johnny would often talk about, and mourn for, what he used to be able to do, in his pre-myeloma days.  But his focus had to be on the daily gains, not the losses of days gone by.  He had to mentally bury the old Johnny who could run 7 miles a day and bench press 150 lbs. and purposely celebrate each new accomplishment of his post-myeloma returning strength.  I would be returning to Kenya soon, and it was a blessing to see that Johnny was doing so much better.  If he couldn’t manage on his own, it would have been very difficult for me to leave him.

Johnny with his good friend, Randy.
They used to be almost equal in height.

The day I left to go to the airport, my brother tried to tell me how much he appreciated me being with him, but the words caught in his throat, and all he could do was cry.  We hugged each other, and I gave him a cross-stitch I had been working on while we spent our many hours together at the hospital.  I told him that every stitch represented a prayer that I had prayed for him.  Kimberly and my sister had arrived, and it was time for me to go.  Johnny would be going to the hospital for his routine blood work and labs: making his first trip without me.

The Spiral of Despair

It was September, and the news I was getting from my mom and sister was that Johnny wasn’t doing well.  Since I was back in Kenya, it was difficult to know what was going on.

The love of his life, whom he had been with for the last 7 years, didn’t want him in her house any more.  I could understand how it was difficult for her to come home from work not knowing what condition she might find Johnny in.  I could understand how she would want him to be where others could keep an eye on him, but what I couldn’t understand is why she changed all the locks on the doors of her house.  The cruelty of that action and the finality of her decision spoke volumes: the relationship was over.

Johnny, having sold his house and all his furnishings, had no where else to go but to move in with our mother.  His heart was broken, and he began to spiral into a deep depression.  He quit taking his medications, and Mom was at her wits-end as to what she could do to help him.  I would talk to him over the phone, and I could hear the despair in his voice.  He cried and wondered why she had thrown him out, and I struggled to find words of encouragement for him.

My Darkest Days

It was December...and the worst news of my life shattered me forever...Kimberly was dead!  My beautiful 28 year old daughter had died of the flu.  She had gone to see a doctor on December 13th and died on December 17th, 2014, alone in her apartment.  Kimberly’s dad and I both had spoken with the police officers who had found her.  They were compassionate and gave us the information we were wanting.  Bill then called our travel agent and arranged for us to be on a plane the very same evening flying from Kenya to Arkansas.

We knew Kimberly was in heaven.  She had trusted the Lord as her Savior.  Knowing she had made her salvation decision years ago was a great comfort to our hearts.  But we were still in shock.  How could our young healthy daughter die of the flu?  We were comforted in knowing that her death had not taken our Lord God by surprise: He would walk with us through this unimaginable tragedy and help us bear our deepest sorrow.

Kimberly excited to see her brother, Billy.
God is omniscient, which means He is all knowing: He knows the timing of our birth, as well as the timing of our death.  But He does not create the events that makes these things happen.  I believe in accidents.  I believe in free-will; freedom of personal choice with consequences and repercussions of our choices.  I believe “that all things work together for good to them that love God, to them who are the called according to his purpose” as Romans 8:28 promises.  I do not believe that all things are good, or right, but I do believe that even the worst events and happenings of my life are brought together for good by my sovereign Lord God.

My brother's cancer had brought me to Arkansas for the summer, which in turn brought all my adult children together.  Had it not been for my brother’s cancer, and my decision to help him, those moments and memories with all of my children together would never have happened. With that in mind, I asked my brother not to be too angry or bitter with his cancer.  It was the event that gave me 16 weeks with Kimberly and a weekend with all my children together that otherwise never would have happened.  I cannot tell you how comforting those memories are to me now.

(More about Kimberly:
"Growing In Grief"
"The Most Unnatural Thing"
"Too Young to Die"
 "Embracing Grief"
"The Proving Ground"
"What You Don't Know About the Flu can Kill You" )

His Darkest Days

My daughter’s death had brought me back to Arkansas during my brother’s darkest days.  I was engulfed with grief, but my brother needed help.  When I arrived, Johnny was sick, weak, depressed, mourning the loss of Kimberly with me and in a drug stupor.  He was keeping his medications in a box, and when the mood struck him, he would look through the bottles of pills, read the label, and take a few.  I asked him if I could help him and he said “No! I have my system, and I’m doing fine with it.”

On the day of Kimberly’s funeral (December 23, 2014), I’m not sure if Johnny has any memory of what happened.  He was at the funeral, but Mom struggled to keep him quiet.  He kept lifting his hand, as if picking fruit off of a tree, and she couldn’t figure out what he was doing or trying to say.  Later that evening, Kimberly’s church family (New Horizon Baptist Church) and her pastor (Bro. Kevin Bernard) hosted a meal for all of us.  During that mealtime, my son Billy received a phone call from his friend telling us that an ambulance was at Mom’s house.  My husband and I immediately left the dinner and went to the UAMS emergency room to find Johnny.  He would spend the next 10 days in the hospital, and other than regulating his medications, they couldn’t find anything else to treat.

It was after the New Year, 2015, when Johnny was discharged from the hospital.  He was still weak and needed to use a wheelchair, but he was willing to have me find out all I could about his medications and more willing for me to help him again.  I began taking him to his routine blood work and labs, which were now down to twice a week.

My husband and I had taken a few days to visit our daughter and her family in Oklahoma.  When we got back, Mom called me to come and see Johnny.  Mom was doing all she could to get him to eat and take in fluids, but each time she checked on him he would tell her to leave him alone.  In the short time that I was gone he had started having intestinal issues and was growing weaker every day.

When I got to Mom’s house, Johnny was sleeping.  He had been sleeping all day.  The bedroom was dark.  I put my hand on his shoulder to let him know I was there; he was cold to the touch and slow to respond to me.  I asked if I could take him to the hospital, but Johnny was adamant that he was never going to be admitted to the hospital again.  It was Saturday, and it would be Tuesday before he was scheduled for blood work and labs, and I couldn’t talk him into going to the hospital any sooner.

On Tuesday, he was at his weakest point: too weak to even dress himself, so I helped.  His eyes were sunken into his head, and I knew things were looking very bad for him.  While we were waiting for him to be called back for his labs, Johnny grabbed at his chest and began to struggle with his breathing.  I got the attention of the RN, and after a short conversation, he was being taken to the emergency room.  After his blood work, labs, and CT were read the results showed that Johnny was in renal failure.  The next 24 hours were crucial to his future health.  If they could not get his body back on track soon, it was likely the damage to his kidneys would be irreversible, and he would need dialysis for the remainder of his life.  They began the process of admitting Johnny to the hospital, but he stopped them.  He wasn’t going to be admitted again. He had convinced himself that he could fight this on an outpatient bases.

Since Johnny had refused to be hospitalized, we were now in Infusion 4 where they were trying to give him fluids before letting him go home.  His body was ice cold, and he wasn’t even shivering.  Four nurses had tried ten times to get a vein to start a line, and he never flinched at any of their attempts.  I was asked if I had legal documentation giving me the right to make medical decisions on his behalf, but Johnny was never incompetent -  just stubborn.

I begged him to be admitted to the hospital.  I told him, “I can’t take you home like this!  Don’t do this to Mom.  Don’t make her watch you die!  Mom has already buried one son, her husband, and a granddaughter; and now you are going to make her bury you!”  But all he would say to me was, “I’m sorry! I just can’t stay in the hospital again.  Take me home.”

For the next few hours I watched as doctor after doctor came into his room trying to talk Johnny into changing his mind about staying in the hospital for treatment.  I was sure if he forced me into taking him home that we would soon be planning his funeral.  I talked to him about being saved and ready for heaven, but he was settled on his own philosophy of death.  So I started talking to him about having his affairs in order; did he have a will? who would get his money? his car? his collection of guns and knives?...anything that would force him to realize his decision on this day, at this moment, would either lengthen or shorten his life in a very real way.

Nine hours after arriving at the hospital and with the gentle encouragement from one of the doctors, Johnny finally agreed to give them two days in hospital to treat him and then he would leave.  It was four days into his hospital stay when Johnny finally submitted to staying until they got his body back on track.  His resolve to be patient until he was well was the surrender his body needed to win this battle.  It would be almost three weeks before Johnny would finally be discharged.

This particular time in the hospital had settled some medical issues for him.  For one, he was continually fighting the gut infection know as Clostridim difficile (C-Diff). One infectious disease doctor finally said, “It seems you have gotten better, but you have never quite gotten over this infection.”  Johnny was put on vancomycin for 10 weeks.  Less than a week after finishing this round of antibiotics, the C-Diff was back.  It would take another 8 weeks of antibiotics before the infection was finally under control.

The Incredible Difference

It was the end of March, and it was time for my husband and I to return to Kenya.  Johnny was feeling well enough to start looking for a house to buy, and by May, he was moving into his new home.  He was regaining his strength everyday and was back to lifting weights and taking long walks. Johnny had also reconnected with a girlfriend from his past.  This lovely lady makes him smile everyday.

It is now, at my brother’s request, that I have written this his cancer story.  Johnny wrote to me,  “If you want to you can take credit for all the people that were praying for me feel free. It's an incredible [thing] to me. Never have I went from being so sick to how I feel today. How getting kicked out to having a house I can call my own.”  I know the Lord responded to the many prayers that were prayed for my brother, and I know he attributes this brighter-side of his life to “all the people that were praying for me [him]”.

Through all this, Johnny recognizes that prayer made the difference, “It’s an incredible [thing] to me.”

Johnny at our memorial balloon launch for Kimberly.
March 2015.
My brother, Johnny.
November 2015