MPN Awareness Day

It’s MPN Awareness Day!

The myeloproliferative neoplasms are blood cancers: polycythemia vera (PV), myelofibrosis (MF), and essential thrombocytosis (ET). You all know I’m ET Girl, but in honor of the day I’m going to do a broad “be aware!” post.

The MPNs are rare and kind of unknown, even for doctors. I’ve definitely had experiences where I’m trying to educate healthcare providers about my condition in order to get the care I need. There have been pretty incredible scientific advances regarding MPNs even just since I was diagnosed, which is cool. When I was first diagnosed they couldn’t determine the mutation that caused my cancer, and about two years ago they successfully tested for and identified it.

Nerdy DNA facts aside, ET and the other MPNs are incurable. It’s likely that I’ll have cancer for the rest of my life, which means I’ll be on chemo the rest of my life. It’s a chronic and invisible illness, and I definitely haven’t made a secret of the fact that I don’t love having it.

Chronic illnesses are lonely beasts. They can separate you from even the people who love you the most. They’re intense, and invisible illnesses in particular demand a huge amount of trust from people on the outside.

If they passed me on the street on a good day, a stranger probably couldn’t tell I have cancer. For now it’s all internal. Migraines, auras, bone pain, insomnia, depression, nausea, vertigo, syncope…there aren’t many visual aids for those symptoms.

whatsherface

I feel like What’s-Her-Face from Teen Girl Squad most days. Possum included.

When I was being diagnosed, I was hoping for a treatable disease I could overcome and move on from, something people could rally around for a brief time and help me defeat. And that’s not what ET is. ET is long and slow and subtle. It’s exhausting to never recover; I imagine it’s exhausting to read about someone never recovering. Thanks for reading and know that I appreciate your continued support and prayers.

The more people know about ET and the other MPNs, the less alone I (and other MPN patients) feel. And I can’t really express how much that means to me.

So thanks for all you do to keep me in community, and thank you for being aware of one more hard thing, even if it doesn’t directly impact you.

And, as always, great is His faithfulness. So far beyond anything I could ask or imagine.

Happy MPN Awareness!

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A blog post

These are difficult days.

I feel weak and empty and exhausted.

My niece asked me recently if I was ever going to have children of my own. I explained that I can’t, that the medicine I take to keep me from being sick would be very bad for babies, and that I have to take it for the rest of my life. This is what they told me since I was diagnosed: if you want to have biological children, you need to do it before you start chemo.

This cancer is a long walk of ongoing loss. There was a moment when I looked at the paperwork from the hospital and realized that the pills I started three days earlier meant I would never be a biological mother–

I am overwhelmed by this grief.

And I’m still trying to figure out how to move on. How to live in hope. I want to get over it and stop playing it over in my head: maybe if I had made different choices I could have gotten married and had a child before this happened, maybe if I had given up meat sooner I could have bought myself a few more chemo-free years. Futile and empty and impossible to know.

I think that one of the worst parts of this grief may be how useless it makes me. It takes so much effort to exist day to day right now that I have nothing left to offer anyone else. And I hate that. That feels like failure on top of loss.

I want to be a person who can step in and serve, be the hands of Christ to other people instead of being a burden. And right now that seems impossible for me, with this stupid cancer and stupid depression. I know that’s a lie. I know that God is not limited by my weakness. Right now it’s hard for me to imagine anything for myself except more loss and more loneliness. But the Holy Spirit is stronger than what I feel. And what I know to be true is stronger than what I feel.

If my niece asks me again about my childlessness, I can remind her that God has promised children to the barren women. That Jesus promised those who mourn will be comforted. That the night will end, once and for all. I have to remind myself of these things–the night seems very long. But I know it will be worth it, this very grief overwhelmed by the glory of the Lord.

Who is like the Lord our God?

Praise the Lord!
Praise, O servants of the Lord,
    praise the name of the Lord!

Blessed be the name of the Lord
    from this time forth and forevermore!
From the rising of the sun to its setting,
    the name of the Lord is to be praised!

The Lord is high above all nations,
    and his glory above the heavens!
Who is like the Lord our God,
    who is seated on high,
who looks far down
    on the heavens and the earth?
He raises the poor from the dust
    and lifts the needy from the ash heap,
to make them sit with princes,
    with the princes of his people.
He gives the barren woman a home,
    making her the joyous mother of children.
Praise the Lord!
Psalm 113 ESV

Chemo Update

Here is what has happened cancer-wise since my hospitalization:

So I was taking two doses of chemo every day. I felt really sick and lost some weight because the only thing I could eat before 3 pm was oatmeal. After several weeks it became apparent that the dosage was not working, as my platelet count had doubled up again. The oncologist bumped me up to chemo three times a day. I felt even worse. I had nosebleeds every day and my mouth would bleed profusely every time I brushed my teeth. I developed petechiae all over my legs, which are these little red specks under your skin where your capillaries have broken.

I went in for labs and it turns out that the chemo worked too well, because my white and red blood cell counts, as well as my platelet count, were all well below the number a person should have. The chemo targets blood cells, and it’s very imprecise about which type of blood cell it destroys.

So I was on hold with the chemo for about a month while my counts recovered. The oncologist recently started me back up at only 2 doses per day, since my white and red cell counts had just barely returned to the bottom of the normal range and my platelets were back to double the amount a normal person should have.

I have labs scheduled at the end of March to see how my blood is doing. I’ve been throwing up a lot and I had a little nosebleed on Friday, but I’m trying not to freak out prematurely. I’m taking 2,000 mg of chemo every day so there are bound to be some side effects.

I’m having a really difficult time. I keep trying to write about it but I still don’t really know how to communicate the emotional and spiritual aspects of this whole cancer thing, especially since my hospitalization. All I can say is that God is faithful even when I am not, and that He has richly blessed me with my family and my friends, who endlessly put up with me and care for me and pray for me. Some of them even make me amazing original ET art.

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The best custom cancer card in the history of art. Obviously.

Thank you for your continued prayers and encouragement!

 

Quick update

Hi friends! I’ll be writing in more detail when I’m reunited with my computer, but I’m forever grateful for prayers, so here goes.

On Tuesday I went to the ER with some chest pain and shortness of breath, combined with a brutal migraine. I was admitted to the hospital because my platelet count is back up over 2 million.

I’ve started chemo and I also had my first round of platelet apheresis, which is were they run all your blood through a machine that splits off the extra platelets into an IV bag. It takes about 3 hours, and I’ve had a temporary catheter placed in my neck. Currently the plan is for me to do apheresis again on Thursday and Friday, then be discharged.

 

Hopefully that continues to be the plan, because I’m already tired of being in the hospital and the catheter is very uncomfortable.

I’m anxious about stuff at work and I just don’t know what is going to happen for me chemo-wise, but my friends and family are as always the best. Visiting, praying, bringing me a squishmallow owl, and taking care of my birds while I’m hospitalized.

The squishiest owl that has ever existed.

If you are willing, please pray that the doctors will actually let me go on Friday, because I really don’t want to be here for Christmas. And please pray that I will respond well to the medication.

Have a merry Christmas and thanks for your prayers!

Trust

How many of my posts start out by me saying, “I’m having a hard time”? At least one more.

I’m having a hard time. The antidepressant I’ve been taking for the past few years is not really working anymore, which happens sometimes. There have been some significant, intense changes in my life recently, including insurance changes, which means that I’ve been waiting about 40 days to see a doctor so that my medication can be adjusted to hopefully address the more severe symptoms of my depression and anxiety. But 40 days is a long time, so I’m trying to cope and it’s not going so well,

-Because my depression hasn’t been this bad since before I was diagnosed and began treatment.

-Because I’m scared about the process of starting new meds.

-Because there are moments when I literally have to coach myself through breathing, through raising my hands to do simple tasks.

-Because I vacillate between thinking I should prioritize my oncological care, since I haven’t been to a cancer center in a year, to thinking I should prioritize my mental care, since I’m falling apart at the seams.

-Because I wish at the end of every day that it didn’t take every ounce of my strength to survive.

-Because the world seems overwhelmingly full of hate, and I feel particularly incapable of contributing to any positive and meaningful solutions.

-Because whenever I see the kingdom coming I feel like I’m knocked off my feet by how far we still have to go and how long the journey is.

Last Sunday I got to hear Bishop Mbanda preach while he was visiting my church, and he repeatedly stressed Proverbs 3:5-6:

Trust in the Lord with all your heart
and lean not on your own understanding;
in all your ways submit to him,
and he will make your paths straight.

I’ve been meditating on this for the past week, all the more so because existing at this level of depression is like being Leslie Knope with the flu (minus the awesome public speaking skills): everything is written in Egyptian hieroglyphs and the floor and the wall just switched. Walk very carefully.

I’m groaning for redemption and praying, “Come, Lord Jesus!” a hundred times a day. And my own understanding says that it’s taking too long. My own understanding panics and screams that this is all too much to bear, even with the strength of the Holy Spirit.
And so I am even more acutely aware than usual that I cannot lean on my own understanding. And it’s scary and it feels like flying blind when something as fundamental as your brain is so untrustworthy that it takes a massive amount of effort to get out of bed in the morning, to answer a phone, to brew a cup of tea. So in the midst of this pain that feels total and unending and suffocating I find myself crawling and collapsing at the feet of my Savior.

And it hasn’t cured the physical brokenness or made the pain go away. But the love here at the feet of Jesus is more real than the temporary failing of my body. And he gives us so many good gifts to sustain us: his church and his Word and his Body and Blood.

This way is really hard for me. As we all know, I don’t carry pain well. Cancer and depression and anxiety feel a lot like hindrances that I cannot lay aside, no matter how much I want to. Especially the depression. My own understanding keeps saying that if I weren’t such a colossal mess of a person, I could be effective in the kingdom of God. But since my own understanding has been vetoed, all I have left to lean on is the truth.

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.” -2 Corinthians 12:9

Great is His faithfulness.

Since you asked…

Early on in my sick person career I realized that sometimes healthy people have this fantasy that there are benefits to being chronically ill, and that some percentage of chronically ill people are faking it to gain said benefits. Just leaving aside the fact that faking an illness/disease/disorder is actually one of several mental illnesses and therefore the sick people are still sick, I can tell you that there aren’t benefits. Being chronically ill is really expensive and time consuming and painful and limiting and it makes relationships harder and more awkward and it complicates basically every aspect of your life. Even simple things like grocery shopping.

I think the issue is complicated by my particular diagnosis, which in addition to being chronic is what is known as an invisible illness. If you look at me on a random day, you can’t see the effect the cancer is having on my body, and on the days when it is evident I’m bedridden and therefore no one sees me. The reason I’m writing this is because I am blessed to know people who often ask me what they can do to help, and I haven’t really known what to say. I’m not at a point where I need meals or help cleaning or someone to sit with me during chemo injections. I usually end up saying “Prayer is good!” which is true. But nearly four years after the initial diagnosis, I have a part two for that answer. Prayer is still good. If you’re going to do one thing, pray for me. But if you want to do one more thing after that, please believe me.

Just believe me. When I say I’m in a lot of pain, believe it, even if you can’t see it. When I say I’m having a hard day and I’m scared about chemo, believe it. When I say that I’m not physically capable of pursuing the career that I love, believe it. Believe that I know my own body, that I know my disease, that I know my limitations. Believe that I’m trying my hardest and that I’m being honest with you.

I know that it’s hard, especially with cancer. Everyone has their own idea of what cancer means and what it looks like and how it breaks down a life. But diseases progress differently, people’s bodies react differently, and doctors pursue treatment differently. My essential thrombocythemia looks very different than another person’s leukemia, and that’s comparing two blood cancers. I might not look like the coworker or relative or friend you know who had cancer. I might not not even look like another ET patient.

I know that it’s hard. People who I know well enough to know they had good intentions have said really hurtful things because I “don’t look sick” to them. So please believe me. And if you don’t, keep it to yourself. Because honestly, it’s hard enough having cancer without being challenged to prove it by well-meaning people who don’t believe me.

I am not here to make general statements on behalf of chronically ill people, because it’s like when people say, “you’re a girl, what do girls like?” and I say, “It depends on the girl.” So this is just me. I’m not establishing some cancer patient position here, but I personally don’t mind when people ask questions about my condition. I’ve had people ask me about fertility, life expectancy, chemo, you name it. And I genuinely don’t mind when people are asking because they’re curious or interested or concerned about me. It’s pretty natural to have questions; cancer is weird and medically fascinating, and I have a somewhat unique perspective on it, as does any cancer patient.

But I can definitely tell when people are asking questions because they don’t believe there is anything wrong with me. Variations on “I don’t think you’re as sick as you think you are” have been launched in my direction on occasion, which is really just unhelpful. Also, to be completely frank, outside opinions of how sick I am are exactly 0% relevant to my daily life.

I can also tell when people are too embarrassed to ask about my cancer up front but they want to know, because they all have the same phrasing and intonation. It’s super weird, but the delivery is always identical, regardless of normal speaking patterns: “So, how are you [shifty eyes]doing?” I usually just say that I’m fine, or sometimes to shake it up I make everything really awkward by overusing the word cancer. Like: “Oh, well, I still have cancer, because it’s incurable cancer, but the cancer hasn’t been too bad lately, as cancers go. Cancer.” Then I sing a verse of “I have C, I have C-A, I have C-A-N-C-E-R, yes I do,” to the tune of the classic Christian camp song “I am a C.”

I mean, I know I have cancer; it’s not like I forgot and if someone asks how my health is I’ll suddenly remember and go into shock. So if you’re curious or interested or concerned about me, just ask. And then believe me when I tell you how it’s going. It’s way less uncomfortable for me and probably you if you just say it.

And if you happen to know other chronically ill people who DON’T overshare about their lives and opinions on a blog, I would suggest you ask them what would help them. Ask if they’re comfortable with questions about their illness.

And to generalize just a little, think twice or possibly thrice before commenting on whether or not people “look sick” to you. If you could see it, it wouldn’t be an invisible illness.

He’s always been faithful

A small note: this post was really hard for me to write. I’ve struggled and prayed about sharing it and I’m trying to be obedient to the Lord. Please bear with me!

I was 17 when I went to college. I still had a childish outlook that teachers were right and people with titles were looking out for your best interest. And I thought that because it was a Christian school it was a safe place, that people would all be trying their hardest to be like Jesus.

So I ended up in a really toxic situation with a psychologically abusive faculty member. And I spent three years internalizing the lies that faculty member and the people around us told me. That I was worthless. That I deserved the treatment I was receiving. That I invited verbal and emotional abuse by speaking in class. That my objections to it were the result of hysteria and over-tiredness. That it was just the way things were. That I was over-sensitive. That I deserved it.

And I believed it. I felt stupid for being in so much pain when my classmates were having similar experiences and handling it like champs. I felt like I was crazy when I told authority figures what was happening and they said, “that’s how it is” and didn’t really seem to care. By my junior year I was severely depressed and I was suicidal. I believed in God, but I was pretty sure that He wanted nothing to do with hysterical, pathetic, worthless me.

And I remember really clearly that one day near the end of my junior year something typically awful and abusive happened in class, and I told my best friend about it, and she said, “That one I can report.” And she did. She found someone she could report it to who listened and who was grieved and who had the power to make other people listen. And she made me go to counseling, because she is strong in the Lord like that.

So my senior year I fought back. I asked for justice. I didn’t get it, but I think that asking for it was important for my own spirit. To be honest, things actually got worse, externally. I spent a lot of time in official waiting rooms. I spent a lot of time defending my character. I spent a lot of time repeating myself to people who really didn’t care about me once they found out that my parents (some authority figures wouldn’t even see me until my parents got involved) weren’t going to pursue legal action against the school.

And there was no reconciliation. Things never got better. I just got the Christian college equivalent of a restraining order to keep that faculty member out of my life and I graduated and I left. I got more counseling.

I’m pretty stubborn, right? And yes, it drives me crazy that I’m here nearly four years later still trying to put the pieces back together. I’m still trying to dig out those lies. I hate that those people still are influencing me in some way. I hate that this experience has warped my ability to trust.

But I think it’s much harder to dismiss the lies of Satan when you’re worried that they might be true. In the midst of the whole mess, things were said about me and my character that didn’t impact me at all. Things to which I didn’t give a second thought, because it was really easy to call them out as lies.

But the idea that I’m worthless? I have a lot of fear that that might be true. I’ve been afraid that’s true since before I went to college. And every time Jesus tells me that He loves me I think, “yeah, but are you sure? Like, have you met me?” So it’s really hard for me to dismiss that lie. And then I spent three years internalizing it from a lot of different authority figures, in a place where I was really vulnerable because I assumed that I was safe.

So I think I have to live with it for a little. I think that destroying that abusive influence is going to take a lot longer than I want it to. I want to say, ‘Yep, it’s a lie, they were all wrong, and I don’t believe it anymore,” and be better. I wish I could make a New Year’s resolution that it’s not going to impact me anymore. But it doesn’t work like that.

It happened. It happened and it was messy and painful and horrible. It was a really terrible experience and I would give a lot to erase it. But I can’t. I can’t go back in time to 17-year-old Kelley and tell her to choose a different major or a different school. I can’t put the sass and the confidence of 25-year-old Kelley into 17-year-old Kelley; I can’t throw my arm around her the first time that faculty member stepped out of line and steer her right to the HR office.

There’s just me, now, with a messy backstory and some unpleasant baggage. And the fact that I’m even able to say that it was an abusive situation that really messed me up is due to counseling. But that’s a victory. And the year after I graduated my university distributed pamphlets to all the students explaining what you should do if your professor is harassing or abusing you. And that’s another victory, because they didn’t have anything like that when I was a student.

When I hear those voices telling me those lies, I also hear the Holy Spirit, telling me the truth. And I’m really grateful to God that I’m in a place now where I am actively rejecting the lies, even if it’s taken me a ridiculously long time and I’m really impatient with myself.

I remember that the first time my faith began to revive was the first time I prayed the prayer of confession in an Anglican service, in the summer between my junior and senior years. I stared at this little laminated card that said, “There is no health in me.” And everything in me said, “Yes, yes! That’s me! What comes next?” What came next was, “Have mercy on me for the sake of your son, Jesus Christ,” and the Holy Spirit blanketed me in peace. I remember thinking, “it doesn’t even matter if I’m worthless or over-sensitive or crazy. God has mercy on me for the sake of Jesus.” And I began to trust His love again, to listen to His word instead of the lies.

I’m sad that it happened, that it’s a part of my story now. But I know that God is faithful, that His truth will endure long after all the lies have perished forever. And I believe that it’s going to be redeemed in some way that I can’t imagine or comprehend. I trust in His goodness. He brought me life in a place of death.

Great is His faithfulness.