Chapter 3–Thankful For Cancer

 

I remember when we adopted Vika and Veronika.  For those of you who don't know our family well, we adopted them when they were 4 and 5 years old from Kaliningrad, Russia.  Both girls had been in a house fire and while Vika was saved and suffered no injury, Veronika was burned.  She was burned over 30% of her body surface--the most severe burns were on her legs but also her stomach and her right arm.  When she became a Brinkley, the scar tissue on her right leg was very tight and would not allow her to straighten her leg, she could barely walk and she needed surgery right away.  She had 5 surgeries that first year.

     Here is this little kid who can't understand a single word we said to her and we have to put her through surgeries, bandage changes (so painful), rigorous PT, and so many things she did not understand---and she clung to us.  She needed someone to depend on to get her through and we were there and we forged a parent/child bond in a time when she had no other option but to lean in and hold on tightly.  In adoption language, we call this attaching.  It is a critical point in the parent/child relationship when we really connect--we get each other--we begin to more than just fall in love, we form a deep bond that will last a life time.  You hear of attachment disorders in the media and it is a real thing.  A child that is unable to attach because of childhood trauma has a difficult time through life attaching and forming deep relationships that are critical for their well-being.  Veronika needed us, we were here and we met every need she had and she felt safe and it felt like we simply melted into each other. And we attached,
     Vika was another story.  Vika was loving and she was affectionate but when she hugged us, it was almost like there was a rod in her back—never really being “all in”.  We were good, she liked us but her attachment came over a very long period of time.  We had to earn her trust slowly and methodically.  It took years but eventually she firmly attached into our family.  Norm and I often joked during this time that we wished Vika would break a leg or something so we could prove ourselves to her and she would let us fully into her world.
     Some of you may be wondering where I am going with all of this.  My 'burns' are Norm's cancer.  See I was walking along through life pretty ok.  I had some struggles and some joys and I knew God was there and prayed and went to church.  Kind of like Vika-I was good-- but the full dependence was a place I knew I could go to but I didn't NEED to.  Kind of like having a foot in two worlds but never fully in either.
    Then Cancer.
I cant stand on my own anymore.  Half the time I cant breath.  Every moment of everyday I constantly talk to God and ask Him to heal my husband, comfort my children, and give me strength to take the very next step.  God has become so real, so relevant, so essential to every moment of every day--that I simply cannot go on without Him.

God has met every single need since this began except one--healing Norm.  Insurance? best we have every had. Bills due? there is always just enough to make it through each day.  Kids need things? A bag of like-new hand me downs shows up at the door.  Grocery issues--yep, He's got that covered.  Worried about Norm taking time off work?  God took care of that one too.  Norm's chair falling apart, leaking the stuffing?  New one appeared in our living room.  Even things I don't think I need until I find out I do are there.

I love Norm with all my heart.  I love and cherish my children.  I never want to be without any of them.  But I cannot exist without being attached to God.  He is my Rock, my salvation, my Creator, my steadfast love.  He hears my cries and shows me His tender mercies.  And like Veronika, when every part of my security has been striped away, I am left with only myself and God.
And for that, I am actually thankful for cancer. Weird right?  Thankful for cancer.
It is the furnace, the thorn in my side, the reminder that whatever good I do, it will never be enough because Jesus is the only good I will ever need.

 

Chapter 2--Questions, New Vocabulary, and Faith

Diagnosis: Stage 3 Pancreatic Cancer
I would love to say that everything went smoothly and we found doctors and got answers quickly.  But we did not.  We knew it was pancreatic cancer but we did not know stage or have a treatment plan and mostly--we had no idea how to navigate this world we now lived in!

But I got ahead of myself.  The next steps after the doctor left the room was to figure our how to tell our kids, our parents, our siblings, our loved ones, our friends the little bit we did know and much of what we didn't. Every phone call broke our hearts and broke the hearts of our family and loved ones. I would never want to relive those early days again.  And pray.  Oh did I pray.
I prayed the doctor would walk back in and say, "Oops, wrong room!".  But he didn't.

Don't google pancreatic cancer.  It is the cancer that is lagging way behind all others in research and treatment efficacy.  And the numbers and statistics are startling.

And we felt left out on the cold.  The hospital discharged him.  Our gastro doctor said he would call to tell us what to do next but he never did.  I searched and pounded the web for information.  I got Norms medical records and uploaded them and all of his information to MD Anderson.  Within a few days we had an appointment and he was referred for surgery.  The tumor had blocked his bile duct and he was turning yellow so they put a stent in to open it.  While in there placing the stent, they biopsied the tumor.  We thought "Great, we should know more soon!".  But we didn't.  We were told it would be the end of February before a doctor could see us.  So we decided to get a second opinion--after scouring the internet and finally getting solid advice from pancan.org.  The second opinion gave us the news were dreading.  Norm had stage 3 pancreatic cancer.  We finally got our appointment moved up at MD Anderson and after another CT scan, we were told on February 7th that the tumor was inoperable because it had surrounded the splenic artery and hepatic artery and a vein.  Our hopes were raised when we were told of a very promising clinical trial only to have them dashed the following day by the news that Norm's liver function had not returned to normal and that bumped him our of the study.

And so he began chemo. Folfirinox standing for:

FOL

= Leucovorin Calcium (FolinicAcid)

F

= Fluorouracil

IRIN

= Irinotecan Hydrochloride

OX

= Oxaliplatin

The drug combination is not without side effects (but what chemo treatment isn't?)  Here are a few and how Norm is doing with them:

• Fatigue--This is probably the worst one for him.
• Weight-loss--He is taking digestive enzymes to help with this
• Nausea--Meds seem to be controlling this
• Digestive issues--meds seem to be able to help with this
• Sore mouth and ulcers--not a problem for Norm
• Gritty or watery eyes, blurred vision--he has experienced some vision changes
• Cold sensitivity on hands, feet, and throat--this is the most irritating for him, he misses cold water....
•  Hearing loss and ringing in his ears--Yes, this is affecting him
• Hair loss--not too bad

It takes about 6 hours each round to infuse the chemo into him.  And then he wears a pump for an additional 46 hours for the last drug.  And we repeat the cycle every two weeks.  I have called this period of time the 'doldrums'--it reminds me of stories of the pioneers crossing the Atlantic and the winds disappear and they just drift without air to fill he sails and it feels never-ending. We are poisoning Norm every two weeks and waiting.  And waiting.  Analyzing every symptom, blood test, wondering if it is working or not.  After 4-6 treatments, we will have completed 'standard of care' and then we have another CT to see if the chemo is working.  At this point, depending on how it is working, he may qualify for another clinical trial IF one is open and IF he meets the criteria. 

There are other side effects.  Norm is cold all of the time so he has a new appreciation for warm blankets and sunshine.  He loves to hear his kids playing and laughing.  He calls family and friends more often.  He eyes seem to leak more--when holding his grandchildren, singing in church, or petting his old beagles ears.
There are side effects for me as well.  In the beginning, my head was reeling. Today, I notice more.  I can read my husband better.  I wake up in the middle of the night and check on him and make sure he is still ok. I am ashamed to admit but in the early days I had a hard time looking into my children's eyes.  I felt like I could not control my fear and I couldn't bear to see my fear reflected in their young eyes .I still do not have this figured out.  I have realized how many little things Norm does for me all of the time---fill my car up with gas, fix things, or change light bulbs.  He can still do some of these things but I hate asking him--his exhaustion is so evident.

All of the sudden our life was not going according to plan.  For most of my adult life, I was pretty certain of what God wanted from me.  There have been many times that both Norm and I have followed a path that we believed God chose for us rather than the 'traditional' path.  And we have found great blessing in that even if it was lonely or scary at the time because we knew who was in control and it was easy to have faith then.

Faith is more difficult now.  I try not to worry about tomorrow or the next day and keep telling myself fear has an author and it is not my God.  My prayers and prayers from all over the world may be answered in a miracle when we look at a scan and see no tumor.  I believe God can do that.  But I also know that sometimes God says no and He can bring beauty and blessing in the midst of great sorrow.  He already has.  Relationships have been restored. Forgiveness has been given and requested.  Profound generosity has come from places we could never have imagined.  Cancer has put us places where we can no longer stand on our own and letting go and giving it all to God is a great relief.  And it has brought people into our world that we can talk to about deep and spiritual things that would never have happened before.

Another huge blessing we are thankful for is Norm's job.  The medical insurance we have today is the best we have ever had in our life.  And his bosses have been more than understanding-- when Norm does not feel well or has to take time off for treatment, they have allowed him to work from home.  The flip side to that is that Norm loves his job and when he feels well enough, it is truly a gift to do work you love and be appreciated.

And the love and support from our church and our family--I could go on for days telling of how people have stepped in and loved us and helped us.  The cards from all over the country from people we didn't even know, the food, the help with our kids, the plane tickets, the hugs and the tears we have shed together.  I have never felt peoples prayers holding me up like I do now--and I know Norm feels the same way.

There are days that it still feels like the 'doldrums' but if I am really honest, God is moving and shaping and I will hope and together, Norm and I and those around us will have faith.

These words from a 10th Avenue North Song drift through my mind constantly:

"I don't want to live in fear
I want to trust that You are near
Trust Your grace can be seen
In both triumph and tragedy."

                                                Facetiming with some of his favorite girls!

Chapter One--How It All Began--Sort of.....

My story is not really my story—it is the story of myself and the lives that God continues to weave through my life. Norm and I have been married 32 years,  which is weird to say because it has gone by so quickly! When and where we met and our early years of marriage are a story for another time and day.  We are not perfect and we have certainly had our ups and downs!  I think our faith in God is what has really sustained our marriage.
And then came the children.  I don’t think I ever remember having a conversation about how many kids we wanted to have.  I was so happy to have our first daughter, that having another never really dawned on me until one night at dinner, Norm suggested a second child.  He was working on his degree, I was a working mom—which I did not enjoy!  But once the thought was there, we decided to have another and God gave as a second daughter.  Our two girls were as different as night and day so I think I had to relearn how to parent.  Norm worked hard at school and after he graduated, we moved back to Alaska. He found a job and we settled in and had our third child—another girl! We hovered there at three daughters each born about two years apart—not really sure if we were done having kids.  Money was tight, we bought our first home and we debated for months before trying one more time!  And along came daughter number four—born 3 1/2 years after number three!  Life was busy and Norm worked hard for our family.  I ran a home daycare to make ends meet but life was pretty good.  We had friends that blessed us, a good  and loving church, and we cherished our  little family!

The next step in our journey was a job offer for Norm to move to the Seattle area.  We were up for the adventure but following came  a series of layoffs and job offers.  In the Pacific Northwest years, we found ourselves managing a summer camp and living on Puget Sound.  Delano was beautiful and fulfilling and although Norm still worked a full time job in Seattle, living at Delano exposed us to numerous families that had adopted internationally. We felt God tugging our hearts towards adoption.  Our adoption story was filled with ups and downs and miracles and obstacles but in the end, we come home with Brinkley girls; numbers five and six from Kaliningrad, Russia in November of 2004.  Life was busy, the little girls had so much to learn and our older girls were growing up.  The demand of Norm working 2 hours away in Seattle and camp becoming more and more time consuming was difficult —God opened the door for us to move to Houston.  Everyone said we would hate it.  I even doubted that I could love this hot and humid city that sprawls on forever like a flood of concrete ever seeping outward!  But I did love it.  Norm was happy in his work, the girls were thriving in our homeschool and church community.  We bought a house and settled in.  Pretty soon our older girls met their husbands and within a few years, the older ones married.

And then we felt that familiar tugging.  We had a six bedroom house and several of our rooms were empty.  So God led us to foster-care.  We fell in love with each child but not all were meant to be ours. Fostering and adopting is not for the faint of heart.  We had our share of sorrow and heartbreak interlaced with abundant joy.  Every child that came to us had already established themselves in previous families.  They had broken hearts, holes in their education, and deep fears when it came to trust.  There were struggles but there were blessings.  And with that journey, we adopted a sibling group—one more daughter and our first two sons.  These kids rooted deeply in our hearts despite challenges and uncertainties that we tried to face together.  But alas, boys ARE very different but having sons of our own, Norm gained two shadows that watch and imitate every move he makes.
And we thought we were done!  But then a spunky little preteen dropped into our world.  It felt like she was ours from day one and after a lengthy adoption process, she became the 10th Brinkley child.

I have questioned God many time since then.  I question Him because 47 days later our world fell apart.  Thanksgiving didn’t feel right—Norm was not his normal jovial self.  He was losing weight and quite tired much of the time. When Christmas came  and Norm slept his days away in his chair while our kids and grandchildren ran circles around him screaming and laughing, I knew something was not right. He made a couple of appointments with his primary care doctor and we even went to the urgent care but had no answers.  Finally, after seeing a gastro doctor in early January, he sent us to the ER with elevated liver numbers.
 The ER room had a picture on the wall of a peaceful, flowery field seemingly out of place among the myriad  of the machines and tubes, and medical devices that filled the room.  He had 3 medical tests done in less than an hour.  The doctor entered and softly, matter of factly, and stumbling through his words-- mass, pancreas, cancer. These words fell from his lips as his fists jammed into his lab coat pockets and his eyes darted back and forth, never really looking at either of us.  He quickly exited the tiny room.  I couldn’t breath.  Tears streamed down Norms face for several minutes.  We hugged.  We cried.  We prayed.  And true to his nature, not able to live in an unhappy place, Norm found the humor, cracked the jokes and settled in for a fight.

One Year

                                               





                                               

I started writing this several days ago and planned to post it yesterday.  But life, as we all know happens around us and the best laid plans are sometimes waylaid by the demands of the moment right in front of you.  

On August 5^th, 2015, 2 little boys walked through our door and joined their sister who had already been in our home for almost 2 weeks.  You see, the day we got Virginia, we witnessed a scene that we now know was very familiar to our kids—familiar but painful beyond measure.  They were being separated from each other.  Taken to different homes, and not knowing when or if they would see each other again.  Sadly, there were two more sisters that had gone to a different home and contact had been lost.  The tears that July day were sharp and painful.  They begged for the adults in this situation to not put them through this again. Separate them again.  Tear them apart from each other.  Nothing is in their control and they knew that better than anyone.

Norm and I had plans.  Those plans did not include adopting 3 more kids.  But God, in His wisdom redirected our path, tugged at our hearts, and took us to the deepest of oceans, the barren place in the desert, a place where we realized our life was not in our control but in Gods.  I would be lying to say it was easy.  It was not.  We had already adopted 2 children and raised the 4 born to us, so some would say we should have been prepared, wise, and confident.  The exact opposite is the truth.  Any parent of more than one child will attest to the fact that all children are different—so much so that sometimes it feels like with each new one we get totally different creatures!

So today I reflect back on the last year.  We have had times of triumph, days of agony, moments of doubt, seasons of success, pain, hurt, heartache, compassion, trust, fun, tears, joy, laughter, and finally love.  That love birthed a family—there was already a family in this place but with each child, we entered a deeper dimension, a fortified faith, and a powerful promise.

For me, anniversaries are the perfect time to take a step out of the whirlwind of life that I am living and really reflect and evaluate progress and growth.  What a year!  The change in all of the children in our home is remarkable—drastic even.  What have we done in the last year?

Worked hard

Played harder

Built trust

Introduced them to God

Taken multiple family trips

Attended camps

Watched old movies

Tried new foods

Established routines, boundaries, and rules

Experienced failures that spurred us to success

We adopted them and they adopted us.

                                                         

We have had 365 days together.  They had 2434 in in the foster care system.  We can never erase those first years of their life.  But working together, we can change the story.  Their story started sad and got worse and worse over the years—but today, their story is changing.  We can never go back and erase any of our stories but there is something about adoption mirrors our relationship with God.  With every birth, there is promise but at some point someone’s sin enters our story—it may be our own or that of others and it takes us away from the promise.  With adoption, the promise is restored, hope returns, and relationship is transformed.  Change is rarely easy—even the good ones. For me, fear of change is the paralyzing factor that keeps me from the finest rewards that God may have for me. 

Ephesians says:

“For this reason I kneel before the Father, from whom every family in heaven and on earth derives its name. I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.  Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! “

Each one of us on our own or even together cannot accomplish the full measure of what God can accomplish when we turn it all over to him.  He has given me immeasurably more than I can ask or imagine—when I walk by faith, step into promise, and seek to do His will.  I never imagined that I would parent 9 kids but God had it planned and He has ordered my steps.  So when I struggle and feel overwhelmed and without the energy to keep up with my life, I hope I can look back on this year and recognize the hand of God and remember it is not me that brought me to this place, but Him.  And I will continue to step by faith into deep waters and unknown forests without a map or a lifeboat and resolutely grasp how wide, long, high, and deep is His love for me and it is all for His glory!  Because I see it in the faces of my children.

                                          

Changes, Caring, Love, and Luxeries

 

Transitions are hard.  Even ones that are good.  Changing takes faith and hope and there is always a little bit of fear.  Our sweet preteen has been with us just over 5 months and adoption is around the corner.  She is excelling in school, is student council president, and has really grown and matured in so many ways.  We still have hard days, not so good days, and some days that we all wish we could rewind the clock and do over.

Every foster home has different rules.  New bedtimes.  New neighborhood.  New church.  New foods.  Stay at home parent or going to daycare.  Help with homework or not.  Computer, TV, Video games all have new and different rules. 

‘I wasn’t raised like that!’  Is a phrase we have heard over and over again.  So we have tried to be patient with behaviors, not make consequences too harsh but still teach the lesson that needs to be taught and overlook things we can so we can demonstrate the bigger picture of love and acceptance. 

But today I heard something that cut me to my heart.   We have had a repeated behavior that we have been patient with but tonight we sat our sweet girl down and told her that although in the past we have not given consequences for this behavior, it is time to change that.  So we told her if it happened again, we would have to enforce some consequences that we have not yet done.  She was visibly upset, sobbing.  We tried to explain to her that we have been patient but she knew better and in the best interest of the whole family, we would take these steps in the future.  She continued to sob.  We asked her if she thought we were being unfair.  Or if she acted the same way at school, what would the consequences be?  She agreed that at school, she would have had severe repercussions.  But she continued to cry and sob.  We began to defend our stance that it was time for this behavior to stop.  

She answered ‘I am not upset that you are going to punish me.  I just don’t know what to do with all this caring and love.’ 

What do you mean?

‘You still love me even though I did this bad thing.  I don’t know how to feel about you guys waiting this long to give me consequences.  I can’t believe that you still love me.  Why do you care what happens to me?’

Oh sweet girl, we love you.

Aren’t we like this with God sometimes?  He gave His Son.  For me.  I don’t deserve that.  But He gives it anyway.  And I don’t feel worthy of that kind of love.  And my sweet girl doesn’t either.  But it is there for us both and we both need to decide to be loved.  I have always taken for granted that my parents love me.  What a luxury that really is…to know you are loved and part of the family.

My Mess

My life is messy.  And by messy, I mean really messy.  

Before the mess I had two pretty normal teenage kids and comfortable, quiet house.  My husband and I could go out for a lunch or a dinner and be alone anytime we wanted.   We were in a good place.  Life was predictable.  I could go to lunch with my friends.  Have a pedicure now and then.  Exercise by myself every morning.  And I gave it all up and invited mess into my life.

In the past 6 months, the police have been to my house 4 times because a child ran away.  I have had to leave a public place more than once because a child was about to have a meltdown.  I have counted to 100 over and over to remain calm.  I have held a child sobbing the words “Why is this my life?  What did I do to deserve this?”.  And I had no answer.  I have had things thrown at me.  I have been snotted on, cried on, spit on held on, and hugged on.  I have sat with a child in a Bible class when none of the other children would sit next to her.  I have read stories, said prayers, answered hard questions and probably did it all wrong.  I have been exhausted emotionally, physically, and lost the ability to string words together.  

 I have questioned over and over again if this is really where God wants me.  Because this is messy.  I am not good at it.  I feel inadequate. 

 And that is where God meets me.  That is when a calm I have never had finds me.  I realize I am not enough but God is.  Somehow words inexplicably come and I have no idea where from.  And answers to the tough questions show up from nowhere.

Parenting is a tough job—ask any parent.  Parenting a child that has lost the ability to trust, has been hurt beyond what you can imagine, has gone days without food, has fought to maintain a human dignity because everything has been stolen from them is a special kind of tough.  Parenting that child is messy.  

But that makes the rewards so much more significant.  The little things.  She called me mom. He climbs in my husband’s lap and asks him to read a book.  A spontaneous hug.  Whispered words of hope—making a plan for tomorrow or even beyond tomorrow because a sense of a future is creeping in.  

The heartbreaks are real.  But the healing is profound.  The doubt is overwhelming.  But the steps towards trust are exciting.  Parenting a hurt child is messy.  But God can take a mess and turn it into a beautiful life.  And as a foster parent, you get to be the tool God uses to redeem His child.  Jesus specializes in cleaning up messes.  And he can use you to do it.

 

‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’  Matthew 25:40