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 ParkPhoto 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