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!

 

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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.

Job search and whatnot

The job search continues with little success.

I did actually get a job offer this week, but I had to turn it down. It was a position providing administrative support to four salespeople, and when I met the salespeople it turned out that one of them was basically a tv sitcom bad guy. Basically he walked into the room and tried to intimidate me by asking what job I thought I was interviewing for  and saying that if I asked for help more than twice I was “a f–ing dummy.” I didn’t really know how to respond to that, so I said, “O…kay?” and my voice cracked. So of course he immediately said, “Oh, are you nervous now? You need some water? A cup of tea?” He also called me “good girl,” which I would just bet that no 25-year-old man of my acquaintance has ever been called “good boy” in an interview.

So when the manager called to offer me the job, I said, “No, thank you!” which kick-started a ten minute session of him saying, “But I think I can explain, you just misunderstood because I know that’s the old-school frat boy way of talking but that’s really not our atmosphere.” And he wouldn’t accept it when I explained that I didn’t fancy spending 25% of my work life fighting for basic human respect and educating this colleague about gender equality in the workplace.

I mean, I don’t really understand how I keep meeting these bizarre people who clearly stumbled out of the television. Maybe I should become a television writer and base all my scripts on my real-life experiences?

So the upshot of it all is that I’m practicing trust a lot these days. I’m really desperate and discouraged right now, and even as terrible as the interview and phone conversation were, it was still a little hard to say no to a secure paycheck. But it was a total God thing that the jerk guy was even at the interview, and when I left the office the Holy Spirit was like, “Not the place for you!”

But I’m still scared, even though I believe that was the right decision. My depression is really bad right now, to be blunt. Unemployment and I have never been good friends. I have to spend way too much time alone with my least favorite person and I’m constantly being rejected, which I definitely don’t love. It’s hard for me to trust that the work of Lord will continue in my heart even if I don’t have a paycheck or a roof over my head or a career that makes me feel fulfilled or useful. And it’s extra hard for me to remember that God can be glorified even when I am not. Because I’m selfish: I want to be safe and happy and not worrying about bills or food and I want to find a job that’s more than just bearable. And it’s easy for me to lose sight of what’s really important when I’m focused on my own problems.

But I keep asking the Lord to show me how to be faithful in the midst of failing at basic life stuff. And for me the answers have been unglamorous and unfun and honestly don’t really seem to be doing anything: go to church. Keep applying for all the jobs (80 so far). Participate in X or Y event.

I’m trying to be obedient, even though I feel like I want to tell God, “this is what I need and this is what I’m capable of doing and this is why my plan would be better.” But I’m His child, right? And I think about how my nieces will get frustrated with obedience and try to explain things to their parents, and my sister and my brother-in-law will say, “what is the work that the Lord has given you to do?”

What is the work that the Lord has given me to do, even if it doesn’t make sense to me and I want different work? I’m called to trust Him and step forward in faith and obedience. And to quote the catechism, the chief end of man is to glorify God and enjoy Him forever, and He obviously knows better than I do what glorifies Him.

But it’s still hard for me. So if you could pray that the Lord would strengthen me in perseverance through my depression and general physical inability, I would appreciate it. Sometimes it’s really hard to gather up the spoons to be obedient, even when my spirit is willing. And thank you so much for your faithfulness in prayers and encouragement. It’s a privilege and joy to be part of the community of believers with you.

Great is His faithfulness.

For all these things

As you may know, I’ve been struggling lately, mental and physical health-wise. But I’m here, and I made it to church this morning, which is its own tiny miracle. And the Gospel reading today was about Jesus’ conversation with the Samaritan woman at the well. So due to the nature of my migraine I bounced in and out of the service a little, but I was there enough to be encouraged and challenged.

I know I can write a lot about bad or broken things, but I’m not going to do that now. Especially since everything the Spirit is placing on my heart today is gratitude.

I’m so grateful for the community of believers who lead me closer to the Lord, and particularly for my roommate who has been the hands of Christ to me (as long as I’ve known her but especially this weekend).

I’m so grateful for all the people who are praying for me, and for the encouragement those prayers have been to me.

I’m grateful that my disease is not contagious and doesn’t regularly prevent me from attending church.

I’m grateful that the mystery and the blessing of the Eucharist is triumphant over my body’s inability to keep down food.

I’m grateful for our God who invites us ever deeper into relationship with Him, way beyond any ability of our own to reciprocate or earn His love.

Whenever I hear the story about the Samaritan woman, I always think of Madeleine L’Engle’s poem, “The Samaritan Woman at the Well.” I know, I know, I’m so good at making obscure literary connections!

The waters are wild, are wild.
Billows batter with unchannelled might.
A turmoil of waves foams on the ocean’s face
wind-whipped the waters hurl

the rivers rush

fountains burst from the rocks
the rapids break huge boulders into dust
the skies split with torrential rains

waters meet waters

the wind and waves are too tumultuous
no one can meet them and survive

In this wilderness of water
we shall all be drowned
the ocean cannot be compassed

I weep, I die
Put my tears in your bottle

drowning

I thirst

Look!

the water is in a cup

(O Lord open thou our lips)


I thirst


Is it any less water

because you have contained it for us
in a vessel we can touch?

I’ve been wondering a lot lately what it means to have joy in your life when everything feels empty and hopeless. So I’ve been praying that the Holy Spirit would show me and make joy grow in my heart because it is one of the fruits of the Spirit. Also, the joy of the Lord is our strength, and I need all the strength. Just, all of it.

And I know I’m still wondering and praying a lot, and if you asked me to define the joy of the Lord I don’t know if I could do it right now. But I think that in my heart the seeds of joy might be gratitude. And even if it is the most Sunday-Schooly of all places to start, I’m so grateful for Jesus. For the Word became flesh, the Living Water that means we will never thirst again.

Thanks be to God.

“He is the image of the invisible God, the firstborn of all creation. For by him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities—all things were created through him and for him. And he is before all things, and in him all things hold together. And he is the head of the body, the church. He is the beginning, the firstborn from the dead, that in everything he might be preeminent. For in him all the fullness of God was pleased to dwell, and through him to reconcile to himself all things, whether on earth or in heaven, making peace by the blood of his cross. And you, who once were alienated and hostile in mind, doing evil deeds, he has now reconciled in his body of flesh by his death, in order to present you holy and blameless and above reproach before him, if indeed you continue in the faith, stable and steadfast, not shifting from the hope of the gospel that you heard, which has been proclaimed in all creation under heaven…” -Colossians 1:15-23