Life & Health

Contemplating Chemotherapy: Day 3-7 – The Drop-Off

September 6, 2016

First of all, let me quickly apologize to those of y’all who have emailed me or texted/called and not yet received a response from me. This post should help make sense of why I haven’t been too timely in my response. (How’s that for a hook to make you keep reading?? What happened to Jason?!? What the heck is a drop-off? Is it a good thing or a bad thing?!? Oh, the intrigue! Take note, young writers…)

Drop-Off #1

Days 3-4 were pretty uneventful in the grand scheme of chemo and the new normal for me. Still no nausea (which I am sooo thankful for), and no major changes except perhaps a little bit of fatigue and low-level chemo brain which made me lose a Carcassonne game to Eric where I would usually crush him. The most eventful thing was “drop-off #1” – returning Winston to the cancer center. But even that was kind of anti-climatic. Again, I’m not sure if I was expecting a line of nurses and doctor’s high-fiving me for making it through three days of continuous infusion or some sort of solemn ceremony whereby I entrust my faithful companion (Winston) back to his caretakers for the next few weeks. But in reality, I just went into the doctor’s office and they took the needles out of my chest and made sure I hadn’t broken Winston at all and that was the entire transaction.

I won’t lie and say that I’m not happy about being free from carrying Winston around all the time, since now I can be an incognito cancer/chemo patient until I lose my hair. I went to work that night and looked like a pretty normal employee. My one disappointment was that I had looked forward to utilizing Winston to diffuse any anger at the ticket counter about missing bags or delayed flights, and I never had the chance. Since I’m on light duty and can’t throw bags around in the planes (er… I mean, lightly place bags in their appropriate places), I tend to work the ticket counter for people who end up missing their bags after a flight. Typically people are pretty understanding, but every once and a while you get people who think it is the end of the world that they didn’t get their bag. So I was looking forward to using Winston to diffuse any anger in that situation. I imagined that the person would be berating me because I personally lost their bag when they connected through four other cities and this happens every time they fly – and I needed to find their bag right now or their life would be ruined from this day forth. I would calmly say, “I am sorry that your bag did not arrive with you..” and then look down at Winston and say, “Oh, sorry, sometimes my chemo bag makes these beeping noises and I just need to make sure that it is still infusing chemo into my body so that it can stop my life-threatening tumor from growing and killing my intestines. It’s not that big of a deal, and certainly nothing in comparison to your missing bag. There we go, let’s just hope I can deal with the nausea and fatigue for the rest of this shift… I’m sorry, you were saying what about your bag and how your life is ruined?” Then I’d smile and help them put their missing bag into perspective.

Unfortunately, nobody ever got angry with me at all while I had Winston.

Drop-Off #2

Then came drop-off #2, what I am calling the “emotional drop-off.” I am typically not a very emotional person, but for some reason on Sunday morning my emotions flared up three times in the morning when I nearly least expected it.

First, while I was driving to church in the morning I decided to listen to Andy Gullahorn’s song “Grand Canyon,” which I’ve been listening to a lot recently (you can listen above) and it has sort of become my theme song right now. The tag-line in the song is “but the story isn’t over yet,” and that’s been an encouragement to me in this hard year of life. I could identify with him as he sings, “there’s despair in the morning that retires to the bed” and “there’s a white flag raised, saying we can’t bear anymore”, ” and our dreams retell the sadness, so we cannot forget” – those have all crossed my mind dozens of times this year. I feel like I’ve had my white flag up for some time now and yet I keep getting kicked while I’m down. So this song reminds me that even so – even if things get worse – “the story isn’t over yet.” So I cried as I pulled into the church parking lot finishing the song, then sat there in my car long enough to let the tears dry so I could go inside and meet my new normal without signs of being the emotional cancer patient.

I managed to keep things under wraps through Sunday school, until I started feeling really tired before the service and contemplated going home to rest – but it was communion Sunday. Communion means so much to me these days, and it’s hard to fully explain why – but I knew I couldn’t miss it just to rest. So I went into the service and proceeded to cry for the second time when we sang “Give Me Jesus.” Again, I’m not totally sure why it made me so emotional – I think the line about “when I am alone” hit at my own fears about walking through chemo alone and made me realize that it really would feel lonely at times. I heard Vince telling me that whenever I felt alone I could look to Jesus, and see him there with me. I think that’s why I utterly broke down shortly afterward.

When I finally lost it and became a sobbing mess, was when it was time for communion. As I lined up to receive the elements, I could feel my emotions welling up, and it was all I could do to keep from tearing up while waiting in line – still wanting to look “normal” at church. But as soon as I heard the words “the body and blood of Christ, broken for you, Jason” – I absolutely lost it. I’m even getting emotional writing about it now. So I made a B-line for my seat and just sat there sobbing for the rest of communion. It was so awkward and beautiful at the same time, because I was at the end of the aisle and people were trying to get back to their seats while I just wanted to sit and cry. So I kept having to stand up or move out of the way, and at the same time I was trying (badly) to hide that I was sobbing over communion (because for non-denominational Bible churches nothing special happens at communion – it’s just a rememberance), all the while enjoying this intimate moment I had looking to Jesus.

Communion

I can’t fully explain it, but in the past few years the physical elements of communion have become so precious to me. Some will claim I’ve gone all sacramental (and I most likely have, and am happy about it) and crazy in my beliefs, but there is something about the elements in my hands that reminds me of Jesus more than anything I can think of. When Vince tells me to look to Jesus like he’s right next to me, I have a hard time – it’s difficult to see that he’s here with me in this trial. But when I hold the broken body and shed blood of Jesus, I can’t help but see Jesus here with me. I can’t help but be reminded that I am not “alone” right now, and that Jesus understands my pain and loneliness and confusion about all of this. My whole body rejoices in his presence – actually, really here – and I don’t know how, but I’m okay leaving it a mystery. It was a sweet, beautiful mystery that morning, all wrapped up in the awkwardness of me trying to look normal as people shuffled by me, but still none of the brushing elbows or knees were able to interrupt the presence of Christ.

Drop-Off #3

The final drop-off was the heaviest one for me. Right after church, I typically go to lunch with my family, but today I felt so tired that I almost was unsure if I could make it driving home without falling asleep. So I told my brother that I was going to go rest for a bit, and made it home to my bed where I literally slept for the next 24-hours. I woke up only to eat and use the bathroom. I’ve never felt so tired in my life, and it came upon me without warning. I could just barely get out of bed even to have enough energy to eat something, and for someone without a colon who has frequent urges to use the bathroom, it was quite a feat for me to even ignore the need to go to the bathroom more often and just sleep instead.

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This is my bed, where I spent 24 hours. Notice Winston’s pack and my chemo spill kit on the top right. It’s usually not made – but I wanted to look put together.

I went to bed around noon on Sunday and finally was “up” around noon or 1pm on Monday. Even still, I could feel how tired my body had become from the chemo. I tried watching part of Zootopia with my mom and fell asleep nearly 30 minutes into it. Last night while I was trying to play a light board game (Bohnanza!) with my family, I started falling asleep towards the middle of the game and had to cut it short. That’s sort of been the new normal these past few days – I keep finding myself just sitting somewhere for 15-30 minutes literally “doing nothing” because starting anything takes too much energy at the moment. I feel like I’m in a constant daze for most of the time. It’s getting better, I think, but I still feel the heavy weight of fatigue on my body and mind most of the time. Maybe this is what being a baby is like – constantly needing to take naps all the time and pretty much just eating and going to the bathroom in the meantime.

Anyways, I’m getting sleepy right now – so I’m going to go take a nap like a toddler. I’ll try my best to keep updating consistently, but I’ve realized that I need to rest more often now so that will be my priority.


More posts from the Contemplating Chemotherapy series:

Round 1:

Round 2:

Round 3:

Round 4:

Round 5:

Round 6:

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8 Comments

  • Reply Steve Weatherl September 6, 2016 at 10:45 am

    Jason – thank you for sharing your heart and your journey. Countless people are being impacted by your walk of faith. We are standing with you in prayer as the Lord constantly pierces our hearts for you.
    Steve Weatherl

    • Reply Jason Custer September 14, 2016 at 8:08 am

      Thank you, Mr. Weatherl. I appreciate your prayers and encouragement.

  • Reply Amy September 6, 2016 at 2:22 pm

    I can so relate to what you articulated about communion. I feel like a veil has been lifted in my own life over the past year and my NEED for Christ as my very sustinence, combined with the sacrifice of His LIFE is absolutely impossibly and heartbreakingly beautiful and intimate.
    Praying for rest for you body, soul and spirit and for freedom from any shame that tells you you have to act “normal” and anything less than as you are.

    • Reply Jason Custer September 14, 2016 at 8:10 am

      I’m glad someone commented about communion – I was hoping that would happen since it has become very important for me. It is such a beautiful thing. I’m glad you can relate and see the beauty in the elements.

  • Reply Tom Murphy September 7, 2016 at 1:00 pm

    I love you Jason. It’s ok, I cry at communion too. You are in good company my friend. Thank you for sharing your pain with us. It is a holy thing…

    • Reply Jason Custer September 14, 2016 at 8:10 am

      Thanks, Tom.

  • Reply Mary Kathryn September 7, 2016 at 10:06 pm

    I have learned this year that it’s totally fine and even good to cry at church. I pretty much have tears streaming down my face on a weekly basis. Most people don’t notice, and if they do, they just hug you. So just let it out. No need to hide. We can cry together.

    I’m enjoying your posts and going back through older ones. Thank you for sharing. I think of you and your family often, and I’m praying.

    • Reply Jason Custer September 14, 2016 at 8:12 am

      Thanks, Mary Kathryn. I imagine that won’t be my last time crying at church. I’ll try not to hide so much anymore.

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