Getting Knocked Down, Only to get back up, again, and again, and again.

“Come to me, all who are weary, and I will give you rest.”

- Matthew 11:28

“Don’t give up, don’t ever give up.” The words came through the car speakers late one night on my way home, piercing my soul in a way I can never describe.  I had just finished surgery, and these words were the furthest away from what I actually wanted to do.  All I wanted to do was give up, and give in. It seemed the easiest, and in that moment, I was tired of fighting. 

Since I’ve last written, we’ve been through a roller coaster of events.  The chemo that wasn’t supposed to work, miraculously shrunk my 11 tumors down to 1.  But just as soon as we began to hope again, that hope seemed to be stripped away.  I can almost pinpoint the exact date I knew the chemo stopped working.  I don’t know how to describe it, but I just knew.  I lived in denial, after all I had been wrong before, but deep down, I knew the truth.  We waited until after the holidays for my next scan, and my fears came to fruition.  The cancer indeed was growing again.  

When I heard the news, I was devastated.  I had told myself I wasn’t going to start hoping again, hoping for a future, for the potential to start a family, but it’s impossible not to let some of that hope sneak back in. I mourned this news, hated it, resented the thought of the hope I had.  If I’m honest, I was mad at God. He had clearly told me to start praying with Charlie every night, to boldly come before Him asking Him to do great things in His name.  We had three random individuals confirm this to us, that we needed to continue to pray, and that the cancer was going to be gone.  We had told no one about our prayers, or the changes we had made.  These random affirmations cemented our belief that we would indeed become cancer-free.  It all seemed so clear.  Then why, WHY, did that not happen? 

My logical brain began to accept that He just didn’t exist.  The facts just weren’t adding up.  I stared blankly at my husband with tears in my eyes and asked him how he still believed.  His response was easy, and without hesitation.  How could we not with all of the blessings we had in our life?  More tears.  Because I knew he was right. The blessings we have are overflowing.  Unseen at times, but without a doubt, overflowing. And if nothing else, God’s provision of the husband He knew I would need, a man who wouldn’t waiver when times became breakable, difficult, and discouraging is surely enough to hold on, just a little longer. I got knocked down, but got back up again.

What to do next?  We struggled with the decision, weighed our options, and prayed.  Should we pursue a clinical trial? If so, which one?  Getting accepted into clinical trials is daunting, hard, and extremely time consuming.  You often have to travel to the location offering the trial, which usually means seeking care out-of-network, and time away from home.  If you’re one of the lucky ones, you meet all of the extremely specific criteria needed to be accepted into the trial.  We looked into a CAR-T cell clinical trial in NY.  It seemed extremely promising, and potentially a long-term treatment option, or maybe, just maybe, a cure.    Months of work, emails, blood work, and biopsies were put into motion, only to find out I didn’t have the correct gene expression needed to be accepted.  All of the work and time, wasted.  And when you’re in this position, time is your most valuable asset.  I’m quickly learning that searching for clinical trials is almost like a full-time job, and like playing chess, blindfolded.  

Because we had spent so much time pursuing this one clinical trial, we didn’t focus on any others.  We were running out of time to make a decision about or next treatment decision. So, weighing all of our options, we decided surgery was the next best step.  During our trip to NY, while venturing into the option of a new clinical trial, the oncologist out there recommended surgery if we ever got to a point the chemo stopped working.  The surgery would be a massive one, with a long road of recovery, but it had the potential for 2-5 years of remission.  That in my mind, made the surgery worth it.

The date was set, surgeon secured.  We went into surgery on Friday, February 8th, planning to remove two, maybe three tumors from my liver.  Once the surgery was complete, I would continue on a hormonal treatment, that included two shots in my hips, once a month.  I eagerly looked forward to a time off chemo, a time of no side effects, and a time of rest.  Surely, this was God’s hand working again in our life.  Sadly though, once the surgery was complete, the news awaiting us on the other side, broke me.  

Not only were there more than 3 tumors in my liver, but there was cancer in my lymph nodes, and outside of the liver as well.  Eighteen tumors in total.  What!?!?  Excuse me?!?!  EIGHTEEN?  The surgery seemed like a bust. What did I just put myself through? And for what?   I didn’t tell anyone the news for a long time.  No one.  Only those there the day of surgery knew.  And only recently have I began to share with others.  Just saying the words caused me to cry immediately.  I couldn’t bear the thought of asking others to pray for me, when I didn’t even think it worked.  I was done.  I didn’t want to fight anymore.  No more surgeries.  No more chemo.  No more drugs that didn’t work.  My body was tired.  I am tired.  My faith hanging on by a thread. What was the point?  I intentionally stopped praying.  I intentionally stopped reading. He wasn’t there.  And if He was, He wasn’t listening, and didn’t care.  

He’s my best friend.  Truly.  He is.  And He not only was letting me down, He was abandoning me as well.  It hurt so bad.  He hurt me, and I wanted to hurt Him, too.  The fear was quietly growing inside of my husband.  He never said anything, but I knew he knew I wasn’t sure anymore.  I could see it in his eyes. His once strong wife, who promised to never abandon her faith, was on the brink of walking away.  He was scared I may give in, and he was right to be scared.

Depression washed over me, and the thought of suicide almost seemed welcoming.  But, the dog was whining, and needed a walk.  So, we walked.  And I cried.  And cried.  And broke down.  By now you may have noticed a theme.   When I’m alone, in the quiet, He comes near.  

I told Him about all of the things He had done wrong.  About all of the things he wasn’t.  About the heart-break, brokenness, pain, disappointment, and fear.  I told Him all of these things as if He didn’t already know.  As if His life had been perfect and He didn’t experience anything but bliss. I told Him I was done, that I was one less soul He got to claim.  And I wept some more.  

But something happened in the quietness.  Something I can’t explain.  No matter what happens, no matter what changes, or how hard it gets, I just can’t walk away. I can’t. No matter how much I wanted to, I couldn’t.  I don’t know how to describe it, but He is too much of who I am.  And I am too much of who He has created me to be.   I am created in His image, we are all created in His image, and I see it, and feel it all the time.  It’s the core of who I am.  The defining marks of what excites, saddens, brings joy, anger, creativity, and love in me.  As much as all of this breaks my heart, it breaks His even more.  This was never His plan for His people.  We weren’t designed to go through these types of things.  

There’s a movie called, Silence.  The plot follows two 17th-century Jesuit priests who travel from Portugal to Edo-era Japan to locate their missing mentor and spread Catholic Christianity.  However, while they’re searching for their lost comrade, you see the two priests face hardship after hardship, causing their faith to be tested to unthinkable limits.  One of the priest is forced to endure sufferings beyond his body’s ability to survive.  He dies, but his faith is still strong and intact.  The other priest sees his fellow friends, and brothers and sisters in Christ suffer and die because he refuses to renounce his faith.  However, he eventually gives in, and converts from Christianity to Buddhism.  

At the end of this movie, I was full of all kinds of thoughts and emotions.  But the one thing that has stuck with me, is how sad I felt that the one priest walked away from his faith.  He had a lush, easy life after he denounced his faith, but, he lost in the end.  Even though I don’t necessarily make the difficult decision that either of the priests faced, I can’t help but want the life of the priest who died, more than the one who walked away.  

      

A dear friend of mine lost her mom a while ago to cancer. Before she passed, she wrote down the following statement: 

“When I stand before God at the end of my life, I would hope that I would not have left a single bit of talent left, and I could say that I used EVERYTHING you gave me.”

I don’t know if there is an answer to the “why” questions. Why did this happen? Why did this change? Why did it all go wrong?  Why did it all go right?  Why did you forsake me?  But, I do think there is a purpose and a greater good that can come out of ANY situation.  I know times are going to more than likely get worse, but, I think the only way one can endure is to focus on the greater purpose, and the positive things in all situations.  Helping those in similar positions, or reaching out to others in need, makes your life, and your experiences meaningful.  

And while this life is not one I would have chosen, I wouldn’t change it either.  I’ll do my best, along with all of my support, to continue to get back up, when I get knocked back down.  So at the end of my life, I hope I can stand before the Lord, and let him know I gave it my all.   

“While we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.”  2 Corinthians 4:18

How you can be praying: 

·     Because of the amount of cancer we found during the surgery, I did not feel comfortable staying off chemo after surgery.  I have started taking Verzenio, and would appreciate prayers for it to work for years.

·     Prayers that the surgery worked and will provide a few years of remission.  

·     Prayers for my faith and mental state.  That it would stay strong and clear of depression. 

·     Prayers for my husband and family. I know it’s just as much of a battle for them as it is for me.  

 After a biopsy.

 Leaving the hospital after surgery.

Garth Brooks concert in St. Louis after surgery.