Life & Health

Contemplating Chemotherapy: Round 5 – Chemo Christmas & the Sacred Ordinary

January 2, 2017

I’m glad that 2016 is over. I don’t typically say that, but it is true. Bring on 2017, I’m ready. As long as it’s nothing like 2016, it will be fine with me. Or will it?

Chemo Christmas

Let me tell you about what I am calling “Chemo Christmas.” In many ways, Round 5 of chemo was a lot easier than the infamous Round 4 where my entire digestive tract decided to rebel against me and ulcerate, but that doesn’t mean Round 5 was a walk in the park. Probably the biggest problem was the timing: I started my chemo infusion on Monday, December 19th. Luckily for my digestive tract, they changed the way I got my infusion – instead of a 72-hour infusion over three days with my own personal chemo pump (RIP Winston) they gave it all to me in about 2-3 hours in a “push.” They also gave me a $10,000 pre-medication to protect my heart, since getting all that chemo at once can create a spike in my heart that is dangerous, and then the next day gave me a $10,000 shot to bring my white blood cell count back up since they drop pretty fast when you get it all done in a day (again, luckily, insurance is paying for all of this – at least this year since I’ve long since hit my max out of pocket). Unfortunately, getting everything in a day means that the nausea hits faster and is more intense, and the tiredness comes on earlier too. That meant that it all the effects practically started hitting me by December 22nd when we drove down to spend Christmas in Houston with my family (yay for 8-hour drives with nausea!).

Like I mentioned before, this was the first time that all my family has gotten together since my sister Christina’s funeral – so I really wanted to enjoy the time together as well as grieve and remember Christina together as a family. But that takes a lot of energy, and that is something I don’t really have a large surplus of while on chemo, especially after just starting a round a week earlier. Chemo exhaustion feels like my battery can only charge up to 20% every time – it never gets above that level. So this meant that Christmas was me constantly having to take short naps everywhere just to maintain my energy. I basically would interact with family for 1-2, maybe 3 hours, then need to go take a 1-2 hour nap to recharge. In fact, at a Christmas party one night I actually fell asleep on the couch while talking to someone, while still sitting up. I think one of the reasons I ended up becoming neutropenic (i.e. having no immune system) was because I exhausted myself trying to be as much a part of Christmas as I was able to, so on December 27th, my body just sort of crashed and I got an infection. That sent me to my second ER visit of the year, which I also luckily got in before the year-end so that insurance would cover it too.

I’ve also noticed I’m starting to loose my eyebrows. Lame.

Now I get to wear a face mask if I go out in public, which I hate, with a passion. Before, with just my bald head, I could pass as “normal” in public. But when you add a face mask to a bald head, there’s no hiding that you’re sick – and chances are pretty good that you’re chemo-boy. A face mask is synonymous with “sick” (I actually found out by accident that there is a face mask emoji when I started texting “sick” to someone and my phone suggested this: 😷). So I can’t blend in and pretend I’m “normal” anymore. Like I said before, I don’t mind this with friends and people I know (as I found out at church on Sunday, I’m both more intriguing and a much better liar with a face mask on) – but I hate wearing it in public places where I don’t know people, even church. People peg me as sick right away, and I hate the looks that people give me. Almost like I’m a leper and my little bastard tumor is contagious if I get too close. [As an interesting side note, while I was in Tokyo I was surprised to learn that in Japan people wear face masks much more often if they are sick and in public – but they do it for an entirely different reason than we do. We wear face masks so other people don’t get us sick, they wear face masks so that they don’t get other people sick. They’ll even wear a mask if they have a slight cough or runny nose. That’s fascinating. We care about the individual, they care about the community. Ok, end random side note.]

Christmas in June

Back to Christmas. Ironically, as much as I hate the idea of Christmas in June (see this post: Advent, Waiting, & Watching with Chemo), this Christmas was very reminiscent of June for me. That was the last time I was with all of my family in Houston and my brother-in-law’s house. At the same time, I had just been released from my first ER visit of this year, and was still healing from major abdominal surgery. So I was in the same position – having to take lots of little naps during the day. I was also pretty much unable to help around the house at all because of my surgery (and the massive scar on my stomach that was still healing). So I stayed in the same guest room at the end of the hall, and I ended up feeling pretty useless most of the time while the rest of my family would cook and wash dishes and take care of my niece and nephew. This Christmas was fairly similar, although I could do a little more – my family, being very gracious and understanding of my situation, wouldn’t let me do too much to overexert myself.

On top of that, both times were difficult – as we were all watching my sister slowly die in June, and then trying to work through how to do Christmas without her in December, and simply missing her. For both visits, it felt to me like we were often just sitting around sort of hoping to make something special happen – but not really sure how to go about it, and not wanting to force anything. In June, that was maybe a meaningful conversation with Christina, and in December it was a meaningful conversation about Christina, or maybe some sort of grieving her being absent together as a family. So it felt almost like each moment was on edge for me – wanting to make something memorable happen, but also knowing anything forced would not be truly memorable or special. For me, there was also the added fear of missing out on a special moment when I was napping. So every time I’d go to take a nap I’d say, “Please wake me up if y’all are going to do anything fun or important” – sort of trying to make sure I wouldn’t miss anything.

I actually wonder if this irresistible fear that kept creeping up and haunting me was because of what happened in June. There is this moment that I cannot forget, that is seared in my mind and probably always will be. The morning my sister died, I was sleeping in the room with her, and ended up not being able to sleep in the early morning. So I stayed up and just sat next to her for a couple hours in the early morning (around 1-4am), and we ended up having a really great conversation that was very meaningful to me. Later, as the sun was coming up, I started to get very tired and asked the hospice nurse if he thought Christina would be stable for some time so I could go take a nap and not miss her passing. He assured me her vital signs showed it would not be for some time, and he would wake me up if anything changed. So I hesitantly went into the guest room to nap, still worried I might miss some meaningful moment (and again told my family, “if anything happens, wake me up!”). I know many people hate the idea of being there when someone actually dies, but for me, that is a way of being present and showing my love for that person. I was there in the room when my dad breathed his last breath, and I wanted to do the same for my sister. So when my brother woke me up a little later that morning I was saddened to find out that Christina had already passed away, very quickly, and sooner than we had expected. In fact, my whole family was there when it happened, except me. I remember distinctly going into her room and violently weeping and crying, “I hate my body!” I remember thinking I was like the disciples when Jesus went to Gethsemane to pray, and I couldn’t stay awake. I hated that. I hated that I had missed a special and memorable moment with my sister, perhaps the last chance I’d get this side of eternity. This Christmas I was laying in that same bed, trying to nap, and it hit me why I was so afraid of missing out on any special moments that may be happening downstairs.


Chronos Time vs. Kairos Time

Pastors and preachers love to point out the original meaning of words in the Bible, hopefully to help further explain a passage but perhaps often just to show off their fancy knowledge of Greek and Hebrew. Two of the words you often get explained around Christmas are “chronos” (χρόνος) and “kairos” (καιρός). Listen to a Christmas sermon or do a quick Google search and you’ll find that chronos is often defined as “sequential time” or “ordinary time,” whereas kairos is defined as “special time” or “an appointed time” or “the right time.” So Jesus came at “the right time” (kairos) and not just any “normal time” (chronos). In fact, you’ll find lots of sermons and articles saying that chronos is the world’s time, whereas kairos is God’s time. Kairos is special – kairos is Christian time, while chronos is pagan time, you know, like the pagan Greek god Chronos.

We like kairos time – it is special time. It’s the moments we all want to remember, that stand out from the ordinary and mundane. We like to remember birthdays and anniversaries, and celebrate holidays and special days. We don’t typically celebrate chronos time, it’s not special – it’s ordinary. Nobody remembers chronos time, and nobody even wants to remember it. We document kairos time on Facebook and Instagram with photos of the amazing and special things we are doing. We’re all afraid of missing out on kairos time. We’re afraid we’re going to miss out on something special – some special, meaningful moment. I know I certainly was this Christmas. I wanted to sleep during chronos time and be awake and present for any chance of a kairos moment. I had missed a kairos moment in June when my sister died, and I wasn’t planning on missing any in December with my family. I think if we could have a choice, we’d all choose a life full of kairos time, kairos moments, rather than boring chronos time.

The Sacred Ordinary

But what if we’ve got it all wrong? What if chronos time and kairos time are both special? What if we’ve made a false dichotomy between the two terms? What if the ordinary is just as sacred as the extraordinary? What if God uses both kairos and chronos just the same?

You see, unfortunately, we like to pigeonhole words – and preachers are sometimes the most notorious at doing this. We look up a Greek root for a word in a lexicon and think we know what the word means, and it often works conveniently with what we’re preaching – so we go with it. “This word means this, trust me, I know Greek and Hebrew” (I know I’ve done it). But for those of you who know other languages, words don’t really woodenly just mean one thing – it’s more complicated than that. Context is important, and one word can be used one way in one spot and an entirely different way later. That’s even how things work in English, now imagine translating to a different language. But because it’s easier, often some words get connotations that aren’t originally there, whether good or bad. So pretty much everywhere you look chronos gets a bad rap, while kairos is praised. Be a kairos Christian, not a chronos one. Chronos is just ordinary.

In fact, “ordinary” gets a bad rap too. No one wants to be ordinary. We want to be special. Who wants to be the “Ordinary Spiderman”? No, we want the “Amazing Spiderman”, or “Spectacular Spiderman,” or “Superior Spiderman” or whatever it is these days (my nephew loves Spiderman… and Batman, and has the costumes and branded paraphernalia to prove it from Christmas – Batman and Spiderman everything). Who want’s to live an ordinary life? We want to be extraordinary. Ordinary means mundane and boring. I remember finding out about the church calendar and being very excited about celebrating special days and seasons – then I found out that half of the year is just “ordinary time.” How lame. We’re actually about to enter about 7 weeks of “ordinary time” after Epiphany this upcoming Sunday. How uneventful. Just when I thought the church calendar was cool, we have to deal with “ordinary” Sundays and “ordinary” weeks.

But “ordinary” actually just means, sequential. You know, the ordinal numbers – first, second, third, etc. So every day is “ordinary,” in one sense. Everything is chronological. Kairos time is also chronos time. And whether we like it or not, we all live in chronos time – in ordinary time. Our lives are all ordinary, and that’s not a bad thing. God is a God of the ordinary too, just as much as the special. I think there is a real danger in only emphasizing the special in life and forgetting about the ordinary. It creates FOMO – or a “Fear Of Missing Out.” We’re constantly worried if we missed our kairos moment. What if we slept through it?! What if we were in the wrong place at the wrong time? What if our life is doomed to be ordinary?!? What if people are having fun without me?!? (the horror!) So we constantly go around trying to force the special moments – trying to make them happen so we don’t miss them. Or we have constant anxiety that we’re missing out – that people are having more meaningful moments and more extraordinary lives than us. Isn’t that what goes through our mind when we scroll through Facebook and Instagram?

But what if the ordinary is sacred? We see the highlight reel of people’s lives on Facebook, but we rarely see the ordinary, day-in-day-out of life. We like talking about the “Beautiful Gate” or the “Lion’s Gate,” but forget about the “Dung Gate” (or maybe even better translated, the “Shit Gate”). We even do this with the Bible, which, let’s be honest, is often a highlight reel too. Noah was 500 years old before we even meet him – 500 ordinary, boring years. Then he worked 100 more years before anything spectacular happened in his life. We don’t even know what happened for 30 years of Jesus’ life other than that he probably lived the life of an ordinary Jewish man in the first century. During Christmas we celebrate the kairos time of Jesus appearing, but we forget about the next 30 years where he lived in relative obscurity. Heck, he didn’t even have that big of a party when he was born, just a bunch of smelly shepherds (the magi came later). Nothing out of the ordinary for Jesus, God become man. So why are we so worried about missing out on something while we go about our ordinary days and ordinary lives?

Perhaps we need to recover a sense of the sacred ordinary. (I don’t know exactly where I got this phrase from, I highly doubt it’s original to me – perhaps I got it from here: SacredOrdinaryDays.com, and I really like what they’re doing there.) The idea that God is very much at work in the ordinary, perhaps just as much as in the extraordinary. He doesn’t ramp up his involvement in our lives on Sunday only, or especially during Christmas or Easter – as if he isn’t as much present on January 2nd as he is on December 25th. Like Elijah, we don’t have to wait for a great wind or an earthquake or a fire to see God, we can often find him in a quiet, ordinary whisper.

Drinking My Own Cup

Like I said earlier, I am glad that 2016 is over – I was ready for 2017. But towards the end of the year I found in myself a strange dissatisfaction with my attitude towards 2016. I hated that I felt the need to get away from my current circumstances and was eager for new and (hopefully) better circumstances in 2017. I found myself thinking that, maybe in 2017 I’ll finally be healthy and done with chemo and things will be better. Or maybe in 2017 I’ll finally meet a quality girl and get married and things will be better. Or maybe in 2017 I’ll finally become a pastor and feel fulfilled as a person living my calling and things will be better. I wanted to be anywhere but where I was. 2016 was worse than ordinary, it honestly sucked. In terms of gates, it was the Shit Gate for sure. I’d take ordinary over 2016 any day. I’d take anything over 2016, actually.

But I’ve been reading a lot of Henri Nouwen recently, and really like him and what he has to say (partly because he has a way of saying things simply and succinctly that I can grasp while on chemo). Through him, God has been slowly teaching me about being present in the moment – even hard or uncomfortable moments. As I shared in an earlier post, Nouwen says, “Impatient people are always expecting the real thing to happen somewhere else and therefore want to go elsewhere. The moment is empty. But patient people dare to stay where they are. Patient living means to live actively in the present and wait there.” I was impatient with 2016 – I wanted to be in 2017 (or anywhere else, for that matter). It wasn’t just a fear of missing out on something, it was that I was ready to be done with everything that sucked in 2016. But Nouwen has made me stop and wonder if maybe somehow God was present in 2016 still, even in the midst of all the pain and sorrow and suffering.

My mentor/father-figure/friend Vince gave me Henri Nouwen’s book, Can You Drink the Cup? for Christmas – and I devoured it in one sitting. It is a meditation on Matthew 20:20-23, where James and John come to Jesus and want to be special, they want to sit beside Jesus on his throne. Jesus says, “Can you drink my cup?” and they arrogantly respond, “We can.” So Jesus basically says, “You will drink my cup, but you won’t get to be special and sit beside me. You don’t really know what you’re asking.” Nouwen looks at this story, and says we need to take our cup, lift it up, and drink it. Taking our cup is really looking at our life and what we have been given, and recognizing our unique strengths and weaknesses. Lifting it up is celebrating our lot within community, both the good and the bad, like raising a glass of wine at a party. Drinking the cup is fully accepting and living out “our unique existence, with all its sorrows and joys.”

This was a very timely message for me, as I had decided that I did not like the cup I had to drink in 2016. I wanted any other cup, and often looked at other people’s cups and wondered why they got sweet wine and I got bitter. How cruel of God to give me and my family such bitter wine while others apparently got sweet wine. I wanted other peoples’ cups, not mine. Then I thought, maybe my cup will be sweeter in 2017, so I’ll just grit and bear this bitter wine until 2017, when things will get better. I think that was my stance until perhaps the last day or two of 2016. But finally, I began to wonder if the cup God gave to me in 2016 was exactly what he had intended for me, with the bitter and sweet mixed together (poorly mixed, in my opinion – way too much bitter for my tastes).

If God is present in the sacred ordinary, could he not also be present in the bitter cup?

I am not the only one in life who has had to drink from a bitter cup. Did not Jesus also wish to have a different cup? What would have happened if he had refused his cup, even against the Father’s will?

“Sin makes us want to create our own lives according to our desires and wishes, ignoring the cup that is given to us,” Nouwen writes. I am very thankful that Jesus didn’t ignore his cup or change it for someone else’s cup, but drank it – though it must have been the most bitter cup of all. He drank it so that I might share his life. “Refusing a drink is avoiding intimacy.” His cup may have been bitter for him, but it was sweet for us. Perhaps our cups are similar. Bitter often comes mixed with sweet, just as sorrow is mixed with joy – the two can often not be separated. I imagine it was a terrifying prediction when Jesus said to James and John, “Very well; you shall drink my cup…” – something both difficult and joyful at the same time. They really had no idea what they were asking for. To be so identified with Jesus as to be tortured and martyred, bitter and sweet mixed together. But who would ask for that cup if they knew what it held?

So how can I say I want to be close to Jesus, but then hate the cup he gives me?

“Drinking the cup is not a heroic act with a nice reward… Drinking the cup is an act of selfless love, an act of immense trust, an act of surrender to a God who will give what we need when we need it.

Jesus’ inviting us to drink the cup without offering the reward we expect is the great challenge of the spiritual life. It breaks through all human calculations and expectations. It defies all our wishes to be sure in advance. It turns our hope for a predictable future upside down and pulls down our self-invented safety devices. It asks for the most radical trust in God, the same trust that made Jesus drink the cup to the bottom.”

In 2017, I want to take my cup, lift it up in the midst of my community, and drink it to the bottom – the bitter and the sweet together. I can’t do that alone – I need my community to take their cups with me, to raise their cups with me, to drink with me. We don’t have to drink alone. We never should.

Will you drink with me?


More posts from the Contemplating Chemotherapy series:

Round 1:

Round 2:

Round 3:

Round 4:

Round 5:

Round 6:

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6 Comments

  • Reply Steven Weatherl January 2, 2017 at 12:16 pm

    Wow. Your insights and wisdom go beyond your years (chronos). I think honestly that many people go their whole lives without accepting the cup they were given.

    Thank you for teaching me as you are being taught. I can only learn because you are willing and vulnerable.

    We are standing with you in prayer – may the Lord be close to you and may you feel the peace and comfort of His presence.
    Our love in Christ,
    The Weatherl Family

    • Reply Jason Custer January 3, 2017 at 3:49 pm

      Thanks, Mr. Weatherl. Although it’s always easier to write about accepting my cup than actually living with it and drinking it. I imagine I still have lots of work to do on the latter. Thanks for following along and praying!

  • Reply Mary Kathryn January 2, 2017 at 10:04 pm

    So good Jason! Thank you.

    • Reply Jason Custer January 3, 2017 at 3:50 pm

      You’re welcome, Mary Kathryn. Thanks for reading!

  • Reply Dianne January 11, 2017 at 6:42 am

    Wow Jace, glad I tuned in. Thanks for the grounding. Thanks for your blog. I have lived most of my Christian life in the future tense. I lift my cup to you and to our Lord this day!

    • Reply Jason Custer January 26, 2017 at 2:33 pm

      Thanks, Dianne! Good to hear from you, as always. (Sorry this reply is so late too – I blame the chemo…)

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