Another day, another blog post

Hello there.

I haven’t written in a while because of this problem that I have where I feel terrible and really depressed and I think that I’ll just wait it out and write when I feel better. And then there comes a point when I remember that I never really feel better, and the Holy Spirit nudges me in the ribs and tells me to write anyway. Ironically that seems to happen often on bad days, such as today. So here we are.

The old double whammy of anxiety and depression continues to make life difficult in cancertown. See, it’s really hard for me to deal with the fact that I’m failing at the things I need to do. Like paying off debt and saving money and building a grown-up career and being a compliant patient and la di da.

And I’m not doing any of those things. No matter how much I try it still seems like I’m juggling five hundred limes and I only have one hand and the limes are on fire. I’m always living crisis to crisis. One weekend I try to get work done on my car and the next weekend I try to deal with health stuff and I think next weekend will be different and I can breathe, but it never is.

 

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Everything in me has been feeling so weird and empty and dead. I literally bought this little rose because I saw it in the store and I was moved by how alive it is in the middle of winter.

So I’m really tired. I’m exhausted.

I keep telling myself that it’s going to get better, but I think that’s a lie. It’s probably always going to be hard and exhausting. There’s always going to be crises and debt and panic attacks and cancer.

But that’s a lie, too. One day there won’t be any of those things. There will just be us and Jesus. And even now, before and after and all throughout the crises and debt and panic attacks and cancer, Jesus is here. It’s hard to explain the difference that makes, because I’m still depressed and I’m still in pain and I’m still just a wreck 99.9% of the time.

I know I keep saying this, but Jesus is literally the only reason I can get out of bed in the morning (or sometimes afternoon, because some days are worse than others). Even though I’m a mess, He still loves me. Extravagantly and abundantly and faithfully. Let’s be real, His love is the only reason I have even a glimmer of what those words mean.

Anne Steele knows what’s up:

Yet gracious God, where shall I flee?
Thou art my only trust,
And still my soul would cleave to Thee
Though prostrate in the dust.

“Prostrate in the dust” is a good description of how I feel a fair amount of the time. But God is faithful. And I don’t deserve it and I don’t understand, but I pray that His strength would continue to enable me to arise each day and cleave for all I am worth.

He is my only trust.

 

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Advent

I’m experiencing a season of weariness and heaviness. Things have been really hard. I know that is hardly news. I’m always hoping that things will get easier and simpler – or that I’ll be stronger, more capable. And it never does. I never do.

So my heart is heavy. I’m tired of being in pain and being this person who can’t handle life. it’s hard to remember that it won’t be this way forever. That joy will come in the morning.

But it’s Advent once again. And it’s been encouraging that the only prayer I have the strength to pray right now is so in keeping with the season.

Come, Lord Jesus.

“The people walking in darkness have seen a great light;
on those living in the land of deep darkness
    a light has dawned.
You have enlarged the nation
    and increased their joy;
they rejoice before you
    as people rejoice at the harvest,
as warriors rejoice
    when dividing the plunder.
For as in the day of Midian’s defeat,
    you have shattered
the yoke that burdens them,
    the bar across their shoulders,
    the rod of their oppressor.
Every warrior’s boot used in battle
    and every garment rolled in blood
will be destined for burning,
    will be fuel for the fire.
For to us a child is born,
    to us a son is given,
    and the government will be on his shoulders.
And he will be called
    Wonderful Counselor, Mighty God,
    Everlasting Father, Prince of Peace.
Of the greatness of his government and peace
    there will be no end.
He will reign on David’s throne
    and over his kingdom,
establishing and upholding it
    with justice and righteousness
    from that time on and forever.
The zeal of the Lord Almighty
    will accomplish this.”  -Isaiah 9:2-7

 

Babies and Stuff

If you know me, you know that I love babies. But you also probably know that I’ve wanted babies of my own since I was five years old. Before you suggest “Adopt as a single mom!”, please note the three following things: 1. Adoption and parenting in general require that I be financially stable, which will quite possibly never happen, due to my having made the idiotic decision to attend college with no plans beyond graduation; 2. Your health impacts your ability to adopt. You can be rejected as a single adoptive parent if you have serious, ongoing medical issues, for valid and obvious reasons; and 3. I just had a two day episode where I literally couldn’t get out of bed because I was in such debilitating pain, which pretty obviously makes single parenting of an infant not really feasible.

I think that personally this is one of the hardest things about being single: no matter how many good friends you have, no matter how many loving family members, when it comes down to it, you have no back-up. You’re no one’s priority. And I’m not trying to insinuate that the people in my life are letting me down here. Outside of marriage, there really isn’t a relationship where you have that kind of mutual investment and support, where your lives are built together and you’re putting each other first, where you’ve made vows before God to stay committed to each other. Obviously I don’t think my married friends and family should prioritize me over their spouses, or that my single friends should prioritize me before taking care of their own life stuff. It just is what it is.

But so it’s really hard. Because I get blinding migraines and there’s no one I can call to pick me up from work (Although my roommate did point out to me that I could have called my church’s office, which I only thought of when I was halfway home after my vision returned. I blame that on migraine brain, which is a totally legit thing where you’re in so much pain that you actually have to use large amounts of your brain power to breathe in and out and therefore you can’t think of basic solutions to problems). Because I have to drive myself to the ER. Because when I have to make decisions about the future it’s just me. Because when I’m falling apart there’s no one to lean on.

So yeah, I get it what Paul is saying about staying single. As it is I talk to Jesus a lot, and it’s a massive blessing, both in the moments themselves and in the long term growth of my relationship with Him. Like Friday: I laid in the back seat of my car and cried out to the Lord because this is my life and I’m living it alone. I have this tendency to be more invested in my relationships than the other party. But that will never be true with Jesus. He gave his life so that I could be at His wedding feast, which, talk about investment. So there’s this massive well of comfort and support that I know I probably wouldn’t turn to as readily if I had someone physically present to comfort me. But I don’t, and so I do. And His love never fails.

When I’m trying to pick a health insurance plan, I know that the Holy Spirit will guide me. When I’m lying in the back of my car in quite literally blinding pain, I know that Jesus is there with me. When I’m falling apart, I’m still certain that He’s not disappointed or caught off guard. I know that He loves me.

But it’s still hard to come to terms with the idea that I might never have a baby. And if people want to shout “girl power!” at me and guilt me for “needing a man,” they had better have raised several babies alone in the midst of at least two severe chronic health problems, or I will probably smack them upside the head.

The other day someone called to surprise me with the news that she’s pregnant. I tried my best to be happy for her, but I could tell that she was disappointed by my reaction. As the body of Christ, we’re called to rejoice with those who rejoice. But we’re also called to weep with those who weep, and I don’t think those are mutually exclusive. And sometimes you have to be prepared to meet in the middle.

Yes, I am happy that she’s having a baby, but also I’m reminded that I am not having a baby and I probably will not be having a baby. And I’ve prayed and sought the Holy Spirit on this one, and it’s not envy. I don’t want the babies that my friends are having. I don’t think I should be having babies instead of them. It’s just honest grief, because that’s a hole that I don’t see being filled in this lifetime.

So I would just ask that if you want me to be able to rejoice with you without having to weep with me, please don’t surprise me with your engagements and your pregnancies. Write me a letter or text me or let me find out from someone else. Because I really need a moment to gather up that grief and lay it back down at the feet of Jesus where it belongs. And if you surprise me I won’t have that moment, and you’ll have to watch me do it.
I’m so broken, friends. I wish that my first impulse was joy for the people I care about. I really do. I pray that one day it will be. But right now it’s not. So please continue to have patience with me. And thank you for letting me hold your babies, even if I cry a little bit. Because I really love those babies.

I believe in the faithfulness of our God. I believe that all of this will be redeemed someday, all this cancer and sorrow and loneliness. And I know more and more every day that Jesus is sufficient to meet all of my needs, even when it takes me a little while to call on Him. His steadfast love is the source of my constant wonder. And He has blessed me far beyond my deserving. Great is His faithfulness.

I love the Lord, for He heard my voice;
He heard my cry for mercy.
Because He turned His ear to me,
I will call on Him as long as I live.
The cords of death entangled me,
the anguish of the grave came over me;
I was overcome by distress and sorrow.
Then I called on the name of the Lord:
“Lord, save me!”
The Lord is gracious and righteous;
our God is full of compassion.
The Lord protects the unwary;
when I was brought low, He saved me.
Return to your rest, my soul,
for the Lord has been good to you.
For you, Lord, have delivered me from death,
my eyes from tears,
my feet from stumbling,
that I may walk before the Lord
in the land of the living.
-Psalm 116:1-9

A Small and Passing Thing

I’ve had a really difficult week. Between packing for a move and working 9 consecutive days for new student orientation events and dealing with the usual uncertainty and general painfulness of cancer, I’ve been trying to keep my head above water.

I haven’t handled this week’s nonsense with particular grace. I’ve been really angry about some deeply negative interactions I’ve had with customers and coworkers. I’ve been frustrated with the limitations of my health. It’s been a constant struggle to find the balance that I need to survive.

But I’ve also been so aware of the Holy Spirit’s presence in my soul this week. The conviction and the comfort have been so swift and so clear, and I can only thank God.

Because He knows exactly what I need, even when I’m bound in pain and anger and exhaustion. And today He gave me a Psalm 23-style overflowing cup of His love and provision. He gave me this song–by Andrew Peterson, who can write songs like none other–and it was life to me.

 

The Holy Spirit got me out of bed this morning, and church was a feast of good things. It was one of those days when you start to get a bit paranoid wondering if the readings and proclamation are directed right at you, until you remember that the lectionary was set a long time ago and God’s just incredible like that.

He showers me with undeserved grace and love. He gives me rest and comfort in the community of believers, even though I continue to do the things I ought not to do and do not do the things I ought to do. He has promised the hope of eternity, and the redemption of all this brokenness.

The best is yet to come.

 

I had a dream that I was waking
At the burning edge of dawn,
And all that rain had washed me clean.
All the sorrow was gone.

I had a dream that I was waking
At the burning edge of dawn,
And I could finally believe
The king had loved me all along.

I had a dream that I was waking
At the burning edge of dawn.
I saw the sower in the silver mist
And He was calling me home.

-Andrew Peterson

Kind of My Baseline

So my third cancerversary has passed. Three years since my diagnosis. I’ve had a couple of those, “not much I can do,” conversations with my doctors lately. If you’ve never had one of these, they all basically go like this.

Doctor: “So how have you been?”
Me: “Really bad, actually. I’m in a ton of pain on a daily basis.”
Doctor: “Right…but that’s just you. That’s kind of your baseline.”

I even got an edgy, “I wish I had a magic wand, but I don’t, so.” which I attributed (after the Holy Spirit poked me in the ribs a few times to get over myself) to the fact of doctors being broken people who also have bad days.

I can sympathize. I’m sure it’s not easy to continuously see a patient in my situation. I understand that at some point they really are out of options.

Here’s one thing to expect if you find out you have cancer: People will drown you in recommendations for cancer related media. Books, movies, cancer tv shows–which are apparently a thing someone thought the world needed–podcasts, etc. The point I’m trying to make is that there are fictional hospital stories everywhere.

Like any other stories categorized by a similar setting, hospital stories seem to have a few other things in common. The doctors are always determined and rough around the edges and really caring deep down and brilliant and funny and hip. They never give up and medical science is super cohesive and straightforward and everyone is on the same page except sometimes the one stupid guy who gets his just deserts in the end and sees the light. And the patients always get better except when they don’t and then they die.

Spoiler warning: this is not how real life is.

Sometimes one doctor will tell you that you should never have kids because of your cancer, while another doctor will tell you that you should have a billion kids and that health concerns aren’t a good reason to forgo pregnancy. Sometimes the same doctor will tell you both things and confuse you for life.

Sometimes everyone involved–techs, specialists, chemists, pharmacists, pathologists, etc.–will shrug their shoulders and say, “this is our best guess. But it might permanently damage your lungs.”

Sometimes everyone is the stupid guy and no one has a brilliant, last minute breakthrough.

Sometimes the patient doesn’t get better or die. Here I am, chronic and incurable but not imminently terminal.

I’m in between, in an indefinite holding pattern of daily pain that current medical science has been unable to assuage. My doctors are honest in their lack of options and optimism. And many, many godly people have prayed for me, that my body would be cured of the cancer and the migraines and all the other problems. But I’m still sick.

I’ve prayed for myself. And I heard the Holy Spirit say, “No,” or maybe it was, “Not now,” but it definitely wasn’t a yes. This is a story where I wake up every day, probably for the rest of my life, in a fair amount of pain. Where I can never pursue the career I would like to because of my illness. Where every decision and situation is complicated by a hundred tiny factors that all add up to cancer.

Sometimes people ask me what I do to cope, and I usually say reading helps, or I watch a lot of sci-fi, or I divide my day down into five minute tasks that feel achievable, or I have a good cry and I eat a hazelnut chocolate bar. And those are all true. But really the only reason I survive is Jesus.

I still have cancer and migraines and depression and anxiety and my body hasn’t been cured. But I know that Jesus is hearing my prayers and the prayers of my brothers and sisters in Christ, because He is healing me. I know that He is, because if He were not I could not open my eyes in the mornings. I feel a bit like a broken record, but it’s the only thing I have worth saying.

On days when I would not be surprised to learn that the final spike of the First Transcontinental Railroad was being driven through my left eye; on days when I have to focus on inhaling and exhaling instead of the aching in my bones; on days when the thought of living a whole life like this, with no relief, makes me feel insane–on all these days and the days in between, Jesus carries me and comforts me. Everything I have comes from Him.

Even when the doctors run out of ideas and I run out of stamina, He is rich in love and grace. Second by second, He renews my strength.

Great is His faithfulness.

“Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.”
-Isaiah 40:28-31

Here’s the thing

Here’s the thing:

I’m not doing so well.

I haven’t wanted to write in a while because of that, because I am not about to lie about this whole cancer thing. But I also have this weird, self-imposed compulsion to be super positive and inspirational, because you know, I’m Cancer Girl. Marvel is releasing a movie about me next May. I don’t like talking about the bad stuff so much. It feels like I’m putting a burden on everyone who reads this. I’m not even completely sure why I’m writing this now, except that I felt like I should testify that even when everything is falling apart and I have no hope that my life is going to get better, God sustains me.

My life is very fluid right now, which if you know me you know that is not ideal for me. Everything is uncertain in a lot of ways that I mostly cannot control. I try to take steps forward and accomplish tasks, but much of the time I can’t actually make positive changes in the situations in my life.

I don’t really need to go into details because aside from the cancer it’s mostly normal stuff that 100% of adults have to deal with; I’m just 99% less competent at handling life than other people. Things are up in the air and I’m reacting not so well. It hasn’t helped that my meds were off until a week ago and are still balancing back out.

So yes. I’m not doing so great. My anxiety and depression have been difficult lately, I’ve been in a great deal of pain, and I’m not coping very well. I’m really discouraged. My adult life feels endless and exhausting and frankly, fairly bleak. But even if it’s later rather than sooner, I am comforted and sustained by the certain hope of eternity. It will not be this way forever. One day I will be running straight into the arms of Jesus without pain, without cancer, without sin.

All shall be well.

 

“And the night can be so long, so long

That you think you’ll never get up again. 

But listen now, there’s a mighty cloud

Of witnesses around you, saying

Hold on, hold on, hold on ’til the end.

For all shall be well.'”  

Andrew Peterson 

Cancer Update

I generally try not to write posts this close together (2 in a week! My new record), but I’ll soothe my conscience with the reflection that this is short and you have been in no way compelled to read this. I had my 3 month test/follow-up with my oncologist.

All I really have to share is that my platelets went down slightly, under 2,000,000 for the first time in over a year. So no chemo yet! Also, due to advances in testing since I was diagnosed, they were recently able to detect and identify the mutation that is responsible for my ET, which is cool. It’s called the MPL W515 mutation, and it is apparently the second most common mutation linked to ET.

On the downside, it turns out that I’m pretty anemic, so that’s a bummer. It also explains part of the reason I’ve been feeling so entirely exhausted lately.

If you could pray that my body would respond well to the iron supplements, as well as for strength to make it through the next few crazy weeks of work, I would greatly appreciate it. Thank you again for all your prayers and encouragements!