IT'S NOT GOING TO GET "BETTER"

...BUT IT IS GOING TO BE VICTORIOUS.

So I commended the enjoyment of life, because there is nothing better for a person under              
the sun than to eat and drink and be glad.  Then joy will accompany them in their toil all the                                                days of the life God has given them under the sun.  

-Ecclesiastes 8:15

I’m entering the point in this process where good news is more than likely no longer coming.  

When the hope that this disease ruining my body will be gone one day, that this or that drug 

will be the “miracle” we’ve been waiting for, and we can go back to living a glorious “normal” 

life.  I’m at the point where opioids are my best friend, and without them my mind can’t focus 

on anything but the pain surging throughout my body.  Am I still fighting? Hell yes.  But, the 

reality of the end is lurking around the corner.  And while death is a friend I’m not ready to 

embrace just yet, I know she is waiting for me, when the time is right.  

A friend recently sent me a book, and while I’m normally not a fan of reading, the title sucked 

me in.  And after reading the introduction, I knew God put the words on this page to help me, 

and so many others, with the disappointments we all face while on this earth.  

In my heart of hearts, I know it would be wrong of me not to share a few chapters from 

it with all of you: 

"Humans are very attached to outcomes.  We say we trust God, but behind the scenes we work

our fingers to the bone and our emotions into a tangled fray trying to control our outcomes. 

We praise God when our normal looks like what we thought it would.  We question God when

it doesn't.  And walk away from Him when we have a sinking suspicion the God is the one who

set fire to the hope that was holding us together.  

We motivate ourselves to get through the bad of today by playing a mental movie of the good 

that will surely come tomorrow.  And if not tomorrow.  Soon.  Very soon. 

And this good that comes will be such a glorious outcome that we will exhale all the anxiety

and finally say, 'Whew, I can honestly say it was worth it.' Cue the redemption song and a 

small ticker tape parade.  This is the acceptable outcome.  This is how the formula should 

calculate: hard time plus healing time, plus staying faithful to God should equal the exact good 

outcome we were counting on.  

But if you are a human who has been doing the adult thing for more than twenty-four hours, 

you've probably come to the same stunning revelation as I have.  We cannot control our

outcomes. 

I make such big assumptions of what a good God should do and then find myself epically

disappointed when the winds change, the struggle bus takes a sharp turn left, and nothing 

at all feels right.  

This isn't how I pictured my life right now.  And this probably isn't exactly how you thought things

would look in your life right now either. 

But here's the hope.  

Though we can't predict or control or demand the outcome of our circumstances, we can know

with great certainty we will be okay.  Better than okay.  Better than normal.  We will be 

victorious because Jesus is victorious (1 Corinthians 15:57).  And victorious people were 

never meant to settle for normal."

-Lysa Terkeusrst: "It's not Supposed to be This Way" 

I do not know the “whys” of all of the disappointments we face while we are here on this earth.  

I don’t know the “good” that will come out of each circumstance.  However, throughout this 

process, I know that He is faithful, and so good.  So so so good.  The more I choose to lean 

into God, the more I choose to trust Him and not me, the more He reveals to me about Himself, 

and I’m telling you, I’m promising you, He will not fail in providing you with what you need to 

get through whatever you’re dealing with. No matter how dark, or how bleak.  Even when 

facing death.  

I don’t know how to exactly describe how He's providing for me, continuing to provide for me,

and I wish I could accurately put it into words, so please bear with me as I try.  

Here are a few truths that He has graciously shown me, that now known, change everything 

about my outlook on the future.  They have provided a peace I haven't had, and while I still 

mourn at times, I am fully wrapped around God's loving embrace.   

1. The Lord can never, NEVER, answer any of our prayers in the way that we think He should, 

and He is still GOOD.  So very good.  And you know why? Because he died on the cross and 

we get to inherit eternity when we don’t deserve it.  All we have to do is to accept Him as Lord 

and Savior in our lives.  I know I’ve heard this a million times growing up in the church, but I 

didn’t fully grasp the weight and extraordinary truth about this until recently.  And once you 

fully understand it, once you truly and fully grasp this truth, all you can feel towards the Lord 

is gratuity and thankfulness.    

2.  We weren’t meant for this world. We were originally designed as perfect beings, and then 

we messed up.  But our souls still long for perfection, in every way.  Jobs, spouses, friends, 

how we look online, how we present ourselves to others, how we spend/save our money.  

We constantly strive for perfection.  And because of God’s love, He forgives us, and for those 

of us who choose Him, we get to experience that perfection again.  Forever.  And honestly, I 

can’t wait.  

3.  The power of choice.  I, like almost everyone else in this world, love to have control in 

my life.  However, this disease is great about stripping every element of control out of my 

hands.  Think this drug is going to work for six months? Wrong.  How about two.  Think 

you’re going to get out of bed today? Wrong.  Sleep for the next 48 hours.  Plans? Don’t 

bother making them because the next 24 hours of your life are about as certain as the 

weather predictions. (Sorry meteorologists.). BUT, we do have the power to choose Jesus.  

To trust Him, to cling to God when our world is uncertain.  And you know what that does?  

That strips the devil of all of his power.  ALL of it.  God has already won the war, and you have 

the power through Jesus to win the battle against Satan who is fighting to take you away.  

He has no power in my life because of Jesus, and that power, that freeing feeling, is all 

I need when control is something I can no longer attain.  I AM THE DAUGHTER OF A KING, 

AND SATAN WILL NOT HAVE THE FINAL SAY IN MY LIFE.  He doesn't get to claim me, 

I won't let him.  I will be victorious in Christ.  

I'm not sure where you're at in your life right now.  Maybe you're life is "normal" in every way 

you dreamed it would be.  But, I doubt it will stay like that forever.  My hope with this post is 

that it can shed some light on the glory of our Savior, and how merciful and good He truly is.  

Now, for some technicalities. What is actually going on physically/medically in my life?  

At the moment, I'm taking an IV chemo called Eribulin.  It's a nasty chemo, and honestly the

first one that's caused some horrible side effects for me. (THANK YOU JESUS for getting me 

this far without many issues.)  While on this drug, I've developed a very rare type of pneumonia

that has hospitalized me, and caused me a lot of breathing issues.  I'm now on steroids hoping

these will help with some of issues.  It's also rare, but some days, this specific chemo strips me 

of all of my energy, and I sleep, literally for almost 24-48 hours.  Other than that, it's not too bad, 

and the majority of the time, I'm functioning like a regular adult.  Fingers crossed it's working.

The cancer has spread to a spot in my spine (in addition to more tumors in my liver and 

peritoneum), and I will begin radiation next week to hopefully get rid of the spot located in the 

upper portion of my shoulder area of my spine. I have a scan on Wednesday, October 16th 

to see if the chemo is working.  Prayers for this day and hopefully good outcome would be 

welcomed. 

If we find out next week the chemo is not working, I will begin a brand new drug (not on the 

market yet) known as an FGFR inhibitor.  It's an oral pill with some promising results for those 

who have an FGFR amplification (and guess what, I have it!).  Fun fact if you're also living in the

cancer world: President Trump passed the Right to Try law a few years ago that states any 

terminally ill patient has the right to try any new medical drug even if it's not on the market yet. 

Companies producing the drug also cannot charge that patient for the drug either.  You need 

your doctor to appeal to the company for those drugs, but you have a right to those drugs.

Without this law, I wouldn't have been able to get access to this drug as it's only available

in clinical trials right now, none of which I'm eligible for.  Prayers that this drug would work

would be welcomed as well. 

I am still trying to get into the Car-T cell clinical trial in Virginia.  It was put on hold, but will

hopefully be opening up again soon.  This process has been over a year in the making, and 

I'm starting to lose hope that it will actually come to fruition.  Sigh.  Clinical trials.  I could write 

a book on how messed up and wrong these are.  Designed to "help" patients, and yet it would 

be easier for me to get into Harvard Law than into some of these trials.    

I'm losing weight, without trying.  So if I look a little thinner, I am.  Eating for some reason is

extremely difficult for me.  Exhausting.  I'm relearning how to eat smaller meals more frequently

and this is helping.  But at the moment, I'm not worried about any extra calories I may be 

consuming. 

However, even amongst all of this craziness, there have been so MANY good things I've gotten

to do.  I've been able to see a lot of good/close friends throughout the country, I was able to 

travel back to Banff National Park in Alberta, CA (one of the prettiest places I've ever been to), 

I'm still able to work on making wreaths, hang out with my family, celebrate so many new babies

in my friends lives, and I am continued to be blessed with one of the best husbands in the world. 

I literally have so many blessings in my life, they usually outweigh the negatives, and I get to 

enjoy so much.  I would still choose this life, because even amongst the pain, it's still so rich and

beautiful.  

Here are a few photos/updates: 

 Photo at Lake Moraine in Banff National Park

 Photo at Lake Louise with my friends who traveled with me. :)

 No One Fights Alone in Banff National Park.

 Apple orchard we got to visit on a girl's getaway.

 Celebrating my friend Emma and her upcoming baby.

 Emma and I.  And of course Ruger.

 Charlie shaved his head with me.  He's the best husband in the world and I am a very lucky lady.

How you can help:

1. Still reach out/hang out with me.  I may not be the fastest at responding at times, but I 

want to see you, and hang out, hear about your life, be involved.

2. Prayers for strength to finish the things I want to before the end comes. 

3. Prayers for a miracle.  I'm not giving up hope, and I'm not done fighting for a longer life. 

Thank you all for continuing to walk with us.  It's been a long road, and we aren't done yet. 

#noonefightsalone 

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.