Cancer Gaps

                                        Shannon's Story

                                            August 2016

 

My mom, Carol, was diagnosed with breast cancer in 1996.  At the time of her diagnosis, she was 52 years old.  She lived to be 69, and went to Heaven in 2013. I still miss her. 

 

I’ve recently applied for a job which requires that I list all of my professional experiences and civic contributions for the past 20 years.  It was a fairly tedious and somewhat frustrating exercise.  When I finished the list, I went back over it to make sure I’d not inadvertently left something out, when I realized there were gaps of time in which it appears I did nothing at all.  I wracked my brain, angry with myself that I was unable to piece together a completed picture of my life.  It puzzled me and took a little thinking to recognize the missing pieces were colored pink and labeled cancer. 

 

My family is really tight.  I don’t mean the 'call your parents every week or so’ and ‘see your siblings during the holidays’ and ‘birthday phone calls’ tight.  My family, both nuclear and extended, is full of strong personalities.  Running a small country wouldn’t bring much of a challenge--except to exercise patience. Though we’re all different, there are some similarities:  no one sits when there is work to be done; no job is beneath any one of us; no one stays in a hospital without a watchman; and a crisis is never faced alone.   We still pray together across states and countries using faith in Jesus and lines by Ma Bell.  We’ve prayed each other through college, graduate school, trade school, new businesses, new family members, floods, tornados, and bad relationships.  We tease and tussle and snark and encourage and celebrate.  We are our own brand of ‘different,’ and we’re okay with it.  Each of us can name the gifts and the failings of the others with uncanny, pointed accuracy.  My brother and I still share our toys--though they’re bigger and require titles and insurance.   We completely baffle our ‘only child’ spouses.   These are the people from whom I’ve come and to whom I belong.   I am so blessed.

 

When mom was first diagnosed, we circled the wagons, and those wagons remained so until she died.   There were times the circle was tighter as we worked together to handle problems like diabetes complications, treatment-related heart damage, and weeks when she just hurt to move.  Other times, we could step back a bit without the compulsion to prepare for the next round of battle.  When Mom hit her five year mark, I started doing more things which took me out of town.  I went on trips, got a horse, and spent time doing new things which I loved.   When mom hit her 10 year mark, I learned to play drums and got involved with the church praise team as I wasn’t needed at home so often.  We then bought a camper and planned vacations and family trips.  See, mom was supposed to be clear after that 10 year mark--no longer in the statistical red zone.  It was possible to relax back into life and ignore that nagging fear which inevitably follows the word cancer.

 

My mom never did anything by the numbers.  Her cancer came back and settled into her bones at the 12 year mark.  The circle tightened some more, and we fought back as we knew how to fight--on our knees and all the time.  Our faith sustained us.  My brother and I started taking turns going with Dad to Mom’s appointments.  We called every day.  We visited as often as we could.  At that time, we were not encouraged to expect more than a couple years.  My mom survived as a stage four cancer patient for six years.  She never did anything by the numbers. 

 

When the chemo started harming her body and taking her strength more than it was fighting off the cancer cells, it seemed everything ground to a stop.  No more monthly trips for chemo which made her sick for at least a week to 10 days of the month.  Hospice came to the house to help.  My brother and I alternated weekends to go home and visit and give our parents some help, support and relief.  Everything else just had to wait.  Cancer was the immediate and forefront crisis – again.  It’s absolutely impossible to name or explain the feelings processed when the chemo was stopped, but an overwhelming emotional onslaught is the point of beginning.

 

We were told to expect three to six months when hospice was instituted.  It was actually nine.  Those nine months were tough, but the year after Mom died was worse.  We were hurting, so we fussed a little more than necessary.  We had been so busy fighting together, we were no longer able to clearly identify the opponent.  I don’t want to lessen another person’s pain or experiences, but it was almost as if we were still in survival mode --relieved from battle-duty but still needing the war to feel normal.   We over-reacted to things which affected our dad.  We got a little more selfish.  We lost a little patience with each other.  Our first Thanksgiving after mama died was an epic nightmare with short fuses, temper tantrums, and confusion.  We weren’t even able to agree upon whether to keep traditions out of love or try new things out of celebration. We survived this, too.  Love overcomes even big personalities and big obstacles.

 

Mom’s oncologist once told us that when one person in a family gets cancer, the entire family is sick.  I thought he was crazy.   I have the constitution of the Missouri mule I’m sometimes accused of emulating.  My Aunt Mary had gone to Heaven, and though I knew the hurt was deep, faith was sustaining my Uncle Bill and my cousins.  They were staying strong.  I discounted the idea we were ‘sick.’  We’d faced everything cancer had to throw at us for years, and with God’s help, we continued to beat it back.  My mindset was that cancer loses out to a family of believers, and when you take on one of us, you’re going to have to take us all down.  I didn’t see his point.

 

Please understand, I had weak moments.  See, faith doesn’t really deny present reality.   Faith is believing the blood of Jesus overcomes present reality – sometimes miraculously.   So, when mom received her last chemo treatment, and hospice was set up, I got a little scared.  I was scared I would let her down.  I didn’t want to show fear.  I didn’t want to falter in my faith.  I didn’t want to embarrass God.  It’s really easy to say you trust the Lord.  It’s sometimes harder to actually do it.

 

If no one has told you, it is sometimes hard to trust God - even when you know Jesus wins that final battle.  The Sunday after the news there would be no more chemo, I went down front at church for prayer.  I spilled my guts to God.  It wasn’t eloquent.  It wasn’t pretty.  I’m certain that the Psalmist David was properly appalled that with all my smarts and education, I was somehow unable to pray prettily.  There was no cadence or structure to that prayer.  It was harsh and stark and wrenching.  My cousin describes it as ‘ugly crying.’   After a bit, my pastor prayed for me.  I was startled when he asked me if I trusted God.  I responded yes, but then he asked me if I trusted God to care for my mom.  I hesitated.  I’m ashamed to say it, but I hesitated.  It was probably only a second, but I hesitated on God. 

 

In the middle of that storm and hesitation, things started rolling through my head:  God gave His Son for me.  Jesus gave His life for me.  Jesus gave His mother’s care to John.  Jesus knew what it was like to be separated from a parent.  After all, on Earth He was somewhat separated from His Father, and in Heaven He would be somewhat separated from His mother.  With these things running through my brain, I took a deep breath and lifted my hands up – telling the Lord I trusted Him with my mom.  I don’t know what I expected by doing this, but it wasn’t joy.  I felt joy.  I believe, and always will believe, that Jesus showed me what was waiting for my mama, and there was no way I would deny that to her.  Yes, I had to sacrifice.  Yes, it would hurt, but my mom was going to have that JOY, and I knew with everything in me that she needed it like air in her lungs.

 

Only a cancer family understands the deeper meanings of ‘five year mark,’ ‘ten year mark,’ ‘cancer markers,’ and ‘chemo brain.’  Only a cancer family has stories (some funny, others not so amusing), about shaving heads, naming prosthetic devices to avoid questions/detection, or ringing bells at the doctor’s office.  Only a cancer family knows by holding a complete stranger’s hand and whispering, ‘I hate cancer,’ that you’ve instantaneously become a part of that person’s life.  Only a cancer daughter has threatened bodily harm when a thoughtless individual calls her overly self-conscious mom a filthy name the first day she leaves the house with no wig and very short, baby-fine hair.  In this sense, yes, the family, individuals and the group, are sick.  Those left behind are also cancer survivors.  I have the ‘cancer gaps’ in my resume to prove it, but I do not regret the choices I made to be a survivor.  I have victory in Jesus. 

 

I have gone back and forth writing about fighting as a family and my individual feelings.  It has been deliberate, but I hope not confusing.  See, you can’t fight cancer alone.  You think and feel how you think and feel, but this is a battle which must be waged with others.  Gather your wagons and circle your family/friendJoin a cancer support groupShare your experiences in a blog.   Work with a counselor or therapist to help work through all the negativity and fear.  Draw strength and courage from whichever person has some to spare the instant it’s needed.  Give your courage to another who’s faltering.  The Apostle Paul says to pray without ceasing.  Prayers don’t have to be long or fancy or offered up in a church service.  I’ve found ‘Oh, Jesus, help me’ while driving down the road works just fine.  Help and support are available to you – take it.

 

 

CARLA’S STORY

An interview by Debbie Edge

August 2016

 

DE:  Tell me your story about your mom

                                                                                                                                               Hallmark Card

Everybody liked her.  She was easy going and slow to anger, and gave everybody the benefit of the doubt.  Her career was nursing, and she was at the top of her class.  Growing up, we had a park three doors down from our house; so when someone got hurt, they would be at our house.  I would say “Mom, someone’s bleeding on the porch again.”  She didn’t let them in the house but would go out with this huge first aid kit and patch them up.  If they showed up again with the same injury, they would get a sermonette. That’s how our Sundays went. 

She was also the school nurse when I was in elementary school.  If I got in trouble, they would always say, “Do I need to talk to mom?” 

Everybody was mom’s friend.  We had a neighborhood watch, without the signs.  If they saw you in the office, that person would call mom, and then she would know.  You felt like you were being watched because they were everywhere!  Our neighbors said if you spit on the concrete 20 miles away, someone already called and told your mom.  I see it as a good thing now, but did not as I was growing up.

Mom always wanted us to help other people. When I was in jr. high, the doctor’s dad across the street lost his vision.  I went over every day to read the paper to him.  We were always supposed to help people.

I was so connected to her that when I got married, our cleaning lady said, “I just don’t know how this is going to work.  Your mom is going to have to go with you, because you have always been her shadow.” 

She sent cards from the church every Sunday.  After my divorce, she wrote letters and sent cards to my son each week.   That was her gift, and she inspired the card ministry that I do.  She loved angels, and I have a lot of angels around me.  There are times when I can feel her near me.

DE:  Tell me about when she got sick.

It was a real slow onset with dementia.  Her mom had dementia, but we didn’t get it when mom started having problems.  Like one Sunday at Christmas I came down stairs and mom had seen in the paper that it was Christmas Day. She seemed panicked about it and said, “I didn’t know it was Christmas Day!”  I blew it off, but I think that was the beginning.  The only times I saw it was when I came home, since I wasn’t around her all the time.  On Thanksgiving, she would always fix a big elaborate dinner, and dad’s family would come and eat with us.  One time everything was in the oven, and she started making gravy and said, “I don’t remember how to make it.”  My sister and I finished it.  It was things like this that happened more and more. 

When I was growing up, I just followed her around and was her shadow.  When I went to visit her, I could tell she didn’t know who I was. For her not to know me and my son, that was extremely difficult.  I bawled all the way home.  Once she got the dementia, I was working in Bolivar, so I was gone too much to keep that connection.

 

DE:  How long was it until you decided to place her in a nursing home?

She probably had dementia ten years, but it was so slow going, so we didn’t do the nursing home until probably the last two years of her life.  Dad had at some point told her that he would never take her to a nursing home, so she didn’t go there until he passed in 2007. 

  

Dad ended up getting lung cancer; he was diagnosed and gone in three months.  He wore himself sick because between the cancer treatments and taking care of her, he quit eating and lost weight.

When he passed, we tried to keep it from her.  He was the only one she consistently knew, and she would continue looking for him in that house.  We knew in order for her to survive we had to get her out of that house.   She went to a nursing home the day of dad’s funeral. She quit talking about two years earlier; so when she went to a nursing home, she had stopped talking, and eating.  We had to do all the physical work that we were not able to do.  That’s when we needed additional help.  She died in 2009 and there is still a huge void.

DE:  What things did you learn about dealing with dementia patients?

Because her dementia was a slow progression, we were in denial.  We didn’t want her to have dementia, so she didn’t have it.  If we had accepted it earlier, maybe her quality of life could have been better.  It was a steady decline for 10 years.

When she first went to the nursing home and it was time to eat, I was feeding her because I thought she had forgotten how and was worried about her choking.  In the middle of it, she took the fork and ate the whole meal, foods she liked (I think that was God’s provision).  She gained 10 pounds.  They kicked her off of hospice, and they were encouraged. We know she liked it there because she had such a sweet tooth she would steal everybody’s pudding.  Everything I have read since then is that they need to smell the food and be around it in order to want it.  She flourished when she first went there and participated in everything, even though she wasn’t talking.  Eventually, she was included but not participating.

 

That was my hometown, so all the people in the nursing home knew her.  She had worked at school, the clinic, and the doctor’s office, and dad had the funeral home, so they all knew her as the nurse on the hill.  She was in a room with my kindergarten teacher, and the supervisor went to school with my brother.  We felt better that those taking care of her knew her.

My brother said the secret to a nursing home is you can check on people, but you never let them know when you are coming.  He always went in the morning but different days, and we only had one issue in two years.  

    

I made a point of never speaking to her until I’d been there about an hour.  She would look around to see who reacted, because she didn’t know who I was.  She needed to get used to me being there.  She was better with my brother, because she saw him all the time.

I just followed her and was her shadow.  I was convinced she would know my son and I, so it was very difficult when I could tell she didn’t know who we were.  I told her, “I love you,” and I bawled all the way home.  I was working in Bolivar, and I was gone too much to keep that connection.    That was the last time I saw her.

 

What things did I learn?

  • If you want to keep a connection with them, you have to see them often, weekly would be best.

  • Socialization is very important and needs to continue, so keep getting out as long as possible.  It is important for the patient but particularly for the caregiver, who needs to get away and take respite time.

  • Go visit them when you know it is their best time of the day, AM or PM.

  • Talk slower and in shorter sentences.

  • She loved flowers, so my sister sent her a new arrangement each month, something she was familiar with.

  • Don’t be intrusive

  • Look for physical signals that indicate they are tired or nervous.

  • Sometimes just sitting with them and spending time is what they need.

  • When making doctor visits, take someone knowledgeable with you to interpret and take notes.

 

DE:  Tell me, after she passed away, what kinds of things were helpful to you that would be helpful to others?

The things that have helped me are doing things that she did (like the cards), being thoughtful, mentoring others, and doing things that I was brought up to do that are honoring her.  She encouraged confidence, to fly on your own, to be a good mom, to keep things clean, and to be responsible.

  • I have continued her card ministry for the church and friends and have sent about 80 each month for probably 10 years.  That is comforting to me.

  • I’m collecting angels because she liked them.

  • I worked for an eye doctor, and then as a paraprofessional for kids with disabilities. She encouraged me to go back to school after my divorce.  I am in a helping career (ECSE) that I began in 1988 due to her influence.

  • I try to do things for others like buying lunches for others, picking up drinks every week for staff, buying supplies, and looking for chores to help others.

  • You can’t judge others and where they have come from.  Kill them with kindness was the way she wanted it to be.  She was always caring for others!

 

 

 

 

Grief and the loss of my Dad

An Interview With Tessa Hull

by Andie Conn

AC:  You guys, I’m so excited to share the words and wisdom of the amazing Tessa Hull with you today. She is truly a delight to everyone around her, and I know that I am not the only one who has admired her courage, joy, and creativity from afar.

 

Tessa is a junior at Missouri State University studying public relations and graphic design. With her degree, she hopes to work with businesses and nonprofits to help them create campaigns that make a positive difference. Some of her favorite things include people, coffee, and creating. On her days off, Tessa enjoys riding her 1960’s blue Schwinn bicycle around town and listening to the sounds of an Andrew Bird record spinning.

 

Tessa has a beautiful story to share today. She let me know that, having lost someone very close to her, one of her passions is helping others through the grieving process. Let’s fall in step and tread with her for a little while as she shares her journey.

 

AC:  Tell me more about your personal experience with loss.

 

Losing my dad was the worst experience in my life, yet I am working through it. My dad was an example of the type of person that I strive to be. He was selfless, often going without to make sure our family had what we needed. Over the years, I watched his health deteriorate, as severe rheumatoid arthritis spread to nearly every part of his body.  Due to his poor health, he got pneumonia the day before Thanksgiving of 2013 and passed away from it on July 9, 2014, but he fought so hard to stay with us.    

   

AC:  How would you explain what grief feels like to someone who has never experienced it?

 

Since everyone grieves differently, it is hard to explain how it feels in general. However, for me, grief was a series of stages, each consisting of different emotions.  At first, grief didn’t feel real. I felt like I was in a bad dream or watching a movie about someone else’s life. Then grief felt crushing and crippling–I felt torn and broken. This was followed by a numbness, and as a result, I distanced myself from everyone, including God. One of the last stages of grief for me was anger, and when the anger subsided, the final stage of healing began.

 

You can read the full interview of Tessa’s story at andieconn.com please follow the link below.

 

http://www.andieconn.com/tessa-hull-on-grief/

See Kerry's article:   "From Defeat to Victory"

                                         Grieving the Loss of my Dad

                                                                                                                    By Debbie Edge

                                                                                      

How do you prepare yourself for a loss when it is eminent?  Whether it is expected in a week, a month, a year or several years, there is a grief that clouds your emotions through that time.  My dad became very ill three years ago.  Over that period, his illnesses and dementia became progressively worse.

Who was this kind, gentle, quiet man? He was a man who grew up with very little — except a huge family that he loved (13 siblings!).   He walked to elementary school, enjoyed cotton picking (because it would earn him some new shoes), rode a bus — not a conventional bus, but a pickup with a home-made bed for students, played basketball and baseball in High School,  graduated and moved to St. Louis the day after graduation, was drafted and served two years in the army at La Rochelle, France, married the love of his life a month after he returned home, raised cattle, enjoyed  traveling and taking his family to new places, loved his girls and his grand-kids, and always went to church — even on vacations.

He was a man I consider an entrepreneur.  He went to trade school and began a business with his brother, selling and repairing TVs and radios.  He didn’t think it was big deal, but when you consider the fact that “only 9% of the American households had a TV in 1950, more than half had one in 1954, and 86% would own one by the end of the decade,” (Montgomery, page 50), it was quite an accomplishment to begin this kind of business in 1956. 

 

What are the things he taught me, or rather tried to teach me, that might be valuable to others?  He taught honesty, to not look back, to not discuss politics and religion, that sometimes it’s more important to be quiet than to argue — even if you are right, and to be careful what you say because someday you might regret it.   He led by example, not by words.  You never heard him criticize and he showed respect for others and for his elders.  He worked hard and, in his quiet way, showed us his love.  He taught us to love God and our country, to forgive, to never give up, and to love unconditionally.   I share some of his personality, his interests, and his gifts because they are not only important characteristics to have, but are characteristics that made our recovery somewhat easier.

 

The last three years have been difficult, especially for mom, who was his bride for 64 years.  This journey would have been impossible without the support of family, friends, and great caregivers.  It was a hard road because we knew that his time was limited, but we had no idea exactly how much.  In June, dad passed away and as my son says, “He moved to Heaven.” 

As we walked through the next few days, sharing time and special memories with family and friends was very helpful.  Taking the time to appreciate his life and share in some of the humorous times, we could give ourselves permission to enjoy his “Celebration of Life.”  I’m thankful that we had many good conversations, and I began taking notes so we could share many of his milestones and special memories.  Like most families, we heard stories that were new to us also!

How do we get through difficult times even when they are expected?  Here are just some ideas that we found helpful: 

  • Accept help, have some ideas in mind that others could do when they offer.

  • Eat, walk, sleep when you can.

  • Get a physical to review health needs and medications. (Including dental, vision, hearing)

  • Re-evaluate your priorities and interests.

  • Remember what was important and enjoyable before the loss as ideas to consider in the future.

  • Accept invitations when you feel like it, but sometimes, don’t be afraid to turn some down.

  • Don’t wait for others to call and invite you to do something – set up a regular get-together.

  • Attend church when you are ready and get involved.

  • Try some new activities.

  • Join an exercise group.

  • Try out some old and new hobbies.

  • Travel, and explore some new places.

  • Try a personality test and spiritual gifts assessments to give you some direction.

  • Get involved with a Bible study or book study.

  • Attend a grief share class.

  • Read books/devotionals/websites that are specific to grief/loss and are encouraging to you.

  • Connect with someone or a group of individuals who have been through a similar loss.

  • Keep connected!

 

Even though you don’t want your life to change, it will.  Gradually you will stop looking backward and make steps to move in a forward direction. When you are struggling, keep focusing on Jesus’s face because that’s where you will find encouragement, direction, and peace. 

Life is different now, but God still has a purpose for you!

 

References:

Montgomery, Ben (2014). Grandma Gatewood’s Walk. Chicago, Illinois:  Chicago Review Press

 

 

 

Dealing with Grief

And the loss of my Dad

 

 

I always think it is a good idea to be honest with ourselves, particularly in the area of dealing with grief.  I think if most people are honest with themselves, a question typically comes up pretty quickly when dealing with the loss of a loved one.  That question being, where is God in all of this?  I have an answer to that question which may help you as you deal with grief.  The answer being that God is on His throne and in control of all that He surveys.  You may be saying to yourself, that is easy for that guy to say.  He must have never lost a loved one.  That would actually not be the case.  I have actually lost my biological father, my step-father, and all four of my grandparents.  I pray that my experiences in dealing with loss may help you in some small way and show you that He truly is on His throne and in control of all that He survey.

 

I want to give you some background on my family situation.  I pray that it is not disparaging to my family in any way, but you need to know some background in order to see how I have dealt with situations.  If my tone is disparaging in any way, I have not gotten my point across in the way that I want to.

 

My parents divorced while I was very young.  I lived with my biological mother for much of each month but my biological father had visitation rights one weekend of each month.  Each of my parents remarried.  Without getting into a lot of family dynamics, my biological father made a choice when I was in junior high.  As a result of that choice, I very rarely saw him for much of my high school years as well as my time in college.  This continued on for much of the early years of my own marriage.  For a young male growing up, that was a very difficult thing to handle.  Some in that situation might turn to drugs, alcohol, or sex to fill the void that was left behind.  I chose a different path.  I chose to attack life in such a way (whether it be academics or extra-curricular activities) with the attitude of “I will show him.”  I had to be the absolute best at anything I did.  I wanted to show my dad all that he was missing by choosing not to be a part of my life.  There were positive aspects to this approach, but I developed an attitude of trying to please man instead of my Heavenly Father. 

My step-mother married my biological father late in his life.  She brought about a reconciliation between us, and I was able to spend some time with my dad during the last two years of his life before he died of cancer.  It was very tough dealing with his loss.  Whether you want to call it a defense mechanism or an unhealthy coping mechanism, I had dealt with his loss for much of my young life since he refused to see me.  Now after re-entering my life, I had to deal with that loss all over again.

 

To say that I went into a state of depression probably doesn’t do it justice.  Looking back, I probably fit the clinical definition of depression, and I just didn’t realize it at the time.  After going through months of dealing with his loss, God spoke to me one day as He asked this simple question.  Who are you going to try and impress now?  That question hit me like a ton of bricks.  During the next several weeks, my Heavenly Father showed me that I should live my life not for man but for an audience of One.  That One being Him, my Heavenly Father.

During those difficult years of junior high when my earthly father had turned from me, my Heavenly Father was calling to me.  On October 31, 1980, I bent my knee in a United Methodist Church in Warsaw, Missouri.  I admitted to myself as well as to God that I was a sinner in need of a Lord and Savior.  Jesus Christ was and is that Lord and Savior.  He came to this earth and lived a perfect, sinless life.  Through His death on the cross, the world’s sin was placed upon him.  Justice and mercy met that day.  Jesus took my sin and faced the penalty of that sin because of His love for me.  On that Halloween day those many years ago, I was justified in His sight.  God saved me on that day.  Positionally, I am holy in His sight by the work of Christ on the cross.  God is also saving me each and every day.  This is a process called sanctification.  God uses each and every circumstance in life (even grief) to conform me to the image of His Son, Jesus.  I am practically being made holy each and every day.  God will also save me in the future.  This is a process called glorification when my mortal body will put on immortality and I pass from death to eternal life.  God did save me, is saving me, and will save me.

I hope my story that I have shared with you today has shown you that God is on His throne and in control of all that He surveys.  If you don’t have a personal relationship with the One who is on His throne, I would love to help with that.  (You can email me at www.grieflosshope.com.)  As you deal with your grief, the One who loved you enough to die for you is calling to you.  Lean on Him and let Him love you as you heal from whatever loss you are dealing with.  I have one final request.  If you would, take a moment and go to the link listed below:

 

  https://youtu.be/rYQ5yXCc_CA

 

This is a song by Elevation Worship called “O Come to the Altar.”  I believe it will minister to you whether you need to respond to His calling or if you already have.

 

In His love,

 

Jeff