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!

A little testimony

I can’t think of a good way to start this post out, other than to say that I feel compelled to share an experience I had recently because of how good God is. So I’m just going to dive right in with the storytelling.

A couple weeks ago I was having a mildly difficult day at work. Nothing too crazy, just a lot going on, plus chronic migraine, plus slight stress. But I want to emphasize that this was not the worst day of my life or anything even remotely close to it. But as I was walking across the kitchen I was struck out of nowhere by the thought that I should cut myself.

Now, it’s not the first time that I’ve had thoughts like that, but since I am currently healthy and stable, my first thought was that my medication was out of whack and I needed to see my doctor. Then the Holy Spirit chimed in and said, “Nope, it’s the enemy pretending to be your depression.”

Side note: I never really know how to refer to…you know. I mean, calling him Satan seems too intimate to me. Like, we are not on a first-name basis, thank you very much. I can’t go with the standard “the devil,” because it invariably makes me think of Nick Mulligan saying, “It’s…the devil! Mwahahaha.” You Adventures in Odyssey fans know what I’m talking about. And “the enemy”? Who does he think he is, Morgoth Bauglir? I mean, I guess that’s pretty close, actually. It’s just one of those things my brain makes awkward. Anyway…

So my immediate response to the Holy Spirit’s revelation was to pray, “None of that, in the name of Jesus!” All the pretense dropped away and I suddenly understood exactly what Tolkien was trying to convey with the phrase “sleepless malice.” I felt really cold out of nowhere, and I heard the enemy say, “Do you think Jesus cares whether you cut yourself or not?”

I suppose at this point I should mention that I went to a school and also a summer camp that were theologically shaky on the topic of the enemy. My camp counselors told me that if I wasn’t praying in a secret prayer language, Satan could stop my prayers from getting to God, which even at the age of ten I knew was utter nonsense because it meant that Satan had more power than God. And every school day from the ages of seven to eleven I saw a poster in the hallway that said “The devil prowls around like a roaring lion, looking for who he can devour!” with a little clip art picture of a lion under it. Which is definitely true and biblical, but also troubling when taken in isolation, not to mention a weird choice of verse to put up in an elementary school hallway. Because the Bible also says, “Greater is He that is in us than he that is in the world,” (I realize that would be hard to illustrate with clip art, but someone should have given it a shot, if you ask me), and lots of other things about how God is more powerful than Satan and has already defeated him. Anyway, I grew up with the enemy more in the foreground than he deserves to be. Yes, the enemy is real and we should be cautious. But also, God is more real and we don’t have to be afraid.

In my experience, people always seem to say, “the enemy attacks you where you’re weakest!” and generally talk about Satan as if he really can somehow thwart God’s will. And Satan definitely has attacked me in areas where I am weak, areas where I am depending on my own strength. But this was not one of those times.

Because if there is anything I am sure of, it’s the goodness of God, His love and faithfulness and unfailing mercy. Even at the nadir of my depression, I was sure that Jesus cared whether I cut myself or not. Even when I believed the lie that cutting myself might ease the really overwhelming pain I was in or atone in some pitiful way for my utter worthlessness, I knew that Jesus cared, that He was 100% adamant that I not do it. And by His grace I didn’t.

But I still listened to the lie (let me tell you, it is a lot harder for me to identify and banish the lies of the enemy when my depression is uncontrolled, so an additional thank you, Jesus! for the miracle of antidepressants), and I dwelt on it, and I let it live in my head for a long time. Because the truth is that I am so broken and sinful and weak all over that apart from Christ I am literally nothing. That realization knocked me off my feet early on my freshman year in college, and I nearly drowned in it. I didn’t tell anyone or ask for help because I figured (uncontrolled depression logic again!) that Jesus knew how messed up and broken I was, but I could still keep it a secret from other people.

So after three years of despair and self-imposed isolation and crying out to the Lord to give me one good reason for why He bothered with me at all, I went to a choral evensong service at King’s College Chapel in Cambridge. And I knelt down for the confession and read the unfamiliar words from a green laminated sheet of paper.

“We have offended against thy holy laws. We have left undone those things which we ought to have done; And we have done those things which we ought not to have done; And there is no health in us. For the sake of your Son Jesus Christ, have mercy on us.”

And the Holy Spirit said, “There’s your reason; it doesn’t have anything to do with you,” and by the grace of God, I finally had ears to hear it.

And so I stood in the kitchen at work, and I felt a heavy weight of malicious intent, and I heard it: “Do you think Jesus cares whether you cut yourself or not?”

I was surprised for a second. Then I laughed out loud, and by the power of the name of Jesus, the coldness and the malice and the lie departed.

Because I do think that Jesus cares. I know it. No matter how broken or sinful or weak or empty I am. Jesus loves me and covered me with His blood, even though I never can and never will do a single thing that even approaches the possibility of deserving it.

God is so faithful, and He loves us so much, past comprehension. His grace is deep and wonderful and I am perpetually awed by all that He has done for us. And I can’t wait for the day when we all know as we are known, when we’re knocked off our feet by the understanding of how much He has done, when we finally fathom the extent of His love.

He cares for us.

But God, being rich in mercy, because of the great love with which he loved us, even when we were dead in our trespasses, made us alive together with Christ—by grace you have been saved— and raised us up with him and seated us with him in the heavenly places in Christ Jesus, so that in the coming ages he might show the immeasurable riches of his grace in kindness toward us in Christ Jesus. -Ephesians 2:4-7

Neurology, my nemesis

Things that have happened since my last post:

  1. I got a full time job.
  2. I moved into an apartment like an adult.
  3. I developed a miraculous gag reflex that activates whenever I see a John Green book.

These are all wins.

The big loss that is that I met with a new neurologist and he was THE WORST.

Side note: I’ve had a pretty wide range of encounters across specialties, with no real trends, except that I realized that I’ve had only positive experiences with cardiologists, and only negative experiences with neurologists. What’s up with that, neurology? You need to start attracting some better doctors, stat. That’s a thing doctors say, right?

Anyway, this neurologist asked me zero questions about my medical history, my past treatment for migraines, my triggers, my cancer, how long I’ve been having migraines, any specifics about how the migraines manifest…basically anything useful. He did, however, take the time to NOT read my chart and then ask me if I “work outside the home.” Of course not, because I, the 24 year old single woman sitting before you in a chef jacket and kitchen pants, have so many opportunities to be gainfully employed inside the home.

Then when I said that of course I was, he nodded in a VERY patronizing manner and said, “so you’re under a lot of stress, then?” To which I replied, “No,” because compared to any other point over the past six years of chronic migraines, this is probably the lowest stress level I’ve had. I have a full-time job that I enjoy, I have a stable housing situation, I have a good oncologist, I’m not in college anymore, and I’m not commuting.

But he clearly didn’t believe me, because his advice to me was to take some medication (that he did not explain to me at all—usually doctors tell you side effects and and dosage and the whole, “don’t take and operate heavy machinery thing”, but not this doctor—he’s a rebel), and to “get those stress levels down,” cue patronizing head nod. Also, his clever plan of not asking what medications I had taken resulted in me shooting down his first three treatment suggestions because previous neurologists have already tried them on me and they didn’t work. “What do you mean, they didn’t work?” replied the doctor.

At this point I would like to give a piece of advice from a frequent patient to any aspiring doctors or nurses who may be reading this: “What do you mean, it didn’t work?” is just about one of the most irritating questions a doctor can ask.

Obviously I mean that it didn’t accomplish what it was prescribed to, namely, prevent headaches. If I had an allergic reaction to it, I would have written that on my chart, under “allergies to medications.” How many ways can you take “it didn’t work”? I’m still having headaches daily and the medication is supposed to stop the headaches, soooooo…it didn’t work. I’m not sure how much clearer I can be about that one.

He ordered me an MRI and an EEG (after I asked the nurse to remind him, because apparently in the legendary trek from the exam room to the front desk, he forgot that he wanted me to have an EEG), but I’ve decided to seek treatment elsewhere. Life is just too short. Also, my temper is just too short. I mean, if I have to get yet another MRI and EEG, then I want the results to go to a doctor who is at a bare minimum engaged enough to read my chart.

But I think that on the whole, I’ll still consider this a plus. Two years ago I would have assumed the whole thing was my fault, that I was being too picky and not providing the information in the right way, and I would have stuck it out and tried to make it work. And here I am, looking for a new doctor right away. I’ve learned a lot through having a terrible oncologist for so long, and I know that there’s really no point in seeking treatment with a doctor in whom you have no confidence. It may take a little longer than I’d prefer to find someone I trust, but it’s definitely worth it.

So yes, I’m going to call this win #4: I’m not wasting any more time with doctors who don’t care.

 

 

Tiny cancer note: I’m waayyyyy over 2,000,000 ppm (platelets per microliter), but as my new oncologist has a different treatment philosophy, he hasn’t immediately jumped the gun and started me on chemo again. As long as I refrain from throwing clots or other such worrying symptoms, he’s going to keep me off the chemo. Which I greatly appreciate.