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. 

Single

I’m going to write about being single. Bear with me.

“If you’re a woman and you’ve chosen to be married, then you’ve chosen to be the woman God created you to be.”

In my experience, Christians say a lot of wacky and untrue things about romantic relationships. Let’s take the above example, which I heard today, as Exhibit A. I could probably give you exhibits through ZZ, possibly even ZZZ. We make marriage into an idol and we make judgments based on relationship status. I went to a Christian college, so I’ve had a mega-dose of the pressure and worry and striving that can often be a part of Christian communities in regard to marriage.

I can only think of 2 positive messages about singleness from my time in college. Both were from professors, one who married (relatively) later in life and one who has never been married. The latter spoke in chapel once, and her charge to the single students was to buy themselves nice dishes. She explained that she used her college dorm dishes until she was 40 because subconsciously she didn’t think she should have nice dishes until she was married.

If you think that seems extreme or crazy, I can tell you that it’s not. Obviously I don’t know what it’s like for men in the Church, but as a Christian woman who grew up in the faith, there is strong and prevalent messaging that your life, your ministry, and the “real” work of your relationship with God begin only when you get married. So why would you buy nice dishes when your real life hasn’t even begun?

Let us be very clear: I have been asked out on a date once in my life, and I didn’t realize it was happening until the guy had completely finished talking. I couldn’t even answer; I just made an awkward “ehhhh…” noise and ran to the office break room. I asked a good friend out for a coffee about a year ago and he literally hasn’t spoken to me since. So if life is a marathon and marriage is the starting line for women, then I am a fish and therefore have no legs and can’t run in marathons.

But I spent years begging God to make it happen because I longed to be a legitimate member of the church. I wanted to have a ministry. I’ve wanted to be a foster parent and adopt for as long as I can remember. I felt called to serve God in ways that I thought only possible if I were married. And I worried about never having a place in church on my own.

I can’t even count the number of times I’ve heard my sisters in Christ tell me that their romantic relationships began when they “got [their] heart right with God.” And so I spent hours trying to figure out what was wrong with me, what I was doing wrong in my relationship with God that was preventing Him from blessing me with a romantic relationship that would lead to marriage and a purpose and a way to serve Him.

And I can’t tell you how often I’ve heard singleness described as the consolation prize you get if you’re not married. “Oh, you’re not married? Well, you get more freedom and you don’t have to worry about in-laws and Paul said that good thing about singleness once. And you’re young and you’re probably aren’t called to singleness, you just haven’t met the right person yet.” (As a side note, I do wonder at what age you stop being “just young” and become firmly and irrevocably “called to singleness.”)

I used to think that if I just knew for certain whether I was waiting for a husband or if I was called to singleness I could have a little funeral for my desire to be a mom and move on with life. But slowly, so slowly, I finally heard the Holy Spirit telling me to stop obsessing and move on. God has called me to be like Jesus. Married, single, dating…He has called me to be like Jesus.

Marriage and singleness are what they are. They’re different and they’re complex and they’re both tangled up with sin for the time being.
You may deal with loneliness and isolation, like I do–marriage is not a cure for that.
You may struggle with loving people and being vulnerable, like I do–singleness is not an escape from that.

My relationship status cannot alter the deep, desperate need of my soul for a Savior.
My relationship status cannot bring me worth or holiness in the eyes of Jesus.

He loved me when I was yet a sinner. And He called me to holiness and ministry no matter what. No matter if I am single or married or healthy or employed or depressed or rich or or or or…

As the Body of Christ, we are called to be like Jesus, to lay ourselves down at the feet of God and submit wholly to Him, starting from the instant the Holy Spirit quickens our hearts. Not starting on our wedding day. Not at any other arbitrary starting line.

I found that this amazing thing happened when I released my fear about my relationship status and put my trust back in Jesus: I was able to admit that I enjoy being single without feeling any shame, without feeling like I was trying to shirk some responsibility. Because however I am supposed to minister, which kids I am supposed to adopt, whatever job I am supposed to do, however God is going to conform me to the likeness of His Son: these all have happened and are happening and will continue to happen because of God. They are not dependent on my relationship status.

Whether you’re single or married.
Whatever your relationship status may be.
Run to Jesus.

Back on track

I finally have a new cancer doctor! Oodelally!

On my patented and totally not just made up this second rating scale (comparing real doctors to fictional doctors from my favorite sci-fi shows, obviously; for example, my last cancer doctor was probably a Dr. McCoy–funny on tv, but I’d never actually want him to be the medical professional in charge of my healthcare), my new doctor is a straight up Carson Beckett. And we all know you can’t say better than that.

He’s nice, he’s smart, he asked me what I wanted my care to look like, and he literally said, “You have had this condition for two years, you’ve done research and you know what’s going on. I’m not going to explain the details to you again.” So I think it’s pretty safe to say that he’s not going to be treating me to lectures on the function of the stomach any time soon. Also, he is the first doctor I’ve had since this whole nonsense started who has expressed sympathy and understanding for the debilitating effects of living with chronic migraines, which was a welcome change from the usual, “oh, headaches. Okay.”

We went over my chart/history together, then he outlined his usual approach for treating ET (side note: he never once said how weird it was that I had ET or how uncomfortable he was treating someone my age, which did wonders for my confidence in his doctoring skills), and then he answered the roughly 1,000 questions I had to ask based on the nonsense my old doctor told me.

I actually got really good vibes from the cancer center as a whole, because all the receptionists and nurses were incredibly nice, which was not my previous experience, and all the patients who came in while I was in the waiting room had long personal chats with them and knew everybody, which I think is a good sign. In addition, they have a social worker whose whole job is just connecting with all the cancer patients to talk about financial concerns, mental health issues, family stuff, whatever. And when my meeting with the doctor was over, he introduced me to the cancer center’s New Patient Navigator, who was super sweet. Apparently her whole job is taking calls from new patients and answering their questions, instead of having them sit in the doctor’s inbox while he sees patients. She gave me her card and said, “I’m in the office right next to your doctor; just call me because I’m right there by the phone and can get you answers ASAP.”

So basically I wish that I could travel back in time to Freshman Year Kelley and tell her to go to this cancer center right from the get-go. Also to stop worrying about whether or not people thought she was a nerd. But lacking a freakish but awesome time travel accident, I’m just going to proceed full of gratitude that God has led me here now, and that I’m finally feeling a little optimistic about my future healthcare.

This has been especially good because I recently received a particularly brutal job rejection, which has honestly kind of wrecked me in the area of job-hunting. I don’t really know what to do at this point, because obviously the method by which I have applied for around 300 jobs since September is not working. So I’m praying very hard that God will give me some kind of direction in this situation. If you have any guaranteed advice for getting all the jobs, feel free to pass it along posthaste.

Anyway, I want to thank everyone who has been praying that I would find a good doctor. Your prayers have been answered! Once my blood tests come back I’ll have some idea of what direction things will be going in the near future. So yes, thank you for being constant and faithful in prayer and encouragement! Our God is good.