Contemplating Chemotherapy: Round 4 – “To live is [Chemo] to die is gain”

By Jason Custer – Posted on

So (as if you didn’t already know or hear): chemo sucks.

I would have said that before starting chemo because I’d heard all of the horror stories (and, you know, it was basically mustard gas at its inception). But after my first two rounds of chemotherapy, I was kind of surprised by how easy it was. I mean, yeah, there were side effects that were not ideal (fatigue and some chemo brain), but I remember thinking: “this really isn’t as bad as everyone said it would be. Is this all there is to chemo?” I even remember going into get my infusion and, because I had to switch to 4 week rounds in light of my low ANC counts, my nurse said, “You must have been feeling really bad this past week.” But I wasn’t. Chemo was sort of an inconvenience for me physically – but I still felt pretty normal (well, as “normal” as can be expected for a 30-year-old guy going through chemo to fight a life-threatening tumor).

Now, after round 4, I’m willing to admit everyone was right. Chemo is hard. Round 4 is royally kicking my butt (both figuratively and, [sort of] literally – which I will explain later).

So I’m going to do something I haven’t yet done on my blog: ask for specific prayer. The list of ways you can pray for me will be at the bottom of this post (ha! So now if you want to be a good Christian and pray for me you have to read the whole post!… or you could just scroll down to the bottom, I guess…). Before that I’ll give you some background information that will hopefully help make sense of my prayer requests. First, I’m going to explain why the first part two rounds of chemo was actually hard emotionally although it wasn’t hard physically. Then I’ll explain why round 4 has been so hard physically for me. Then I’ll try to be super-spiritual (AKA share one insight I’ve had during this difficult time recently), and finally list my prayer requests. And I’ll try to make the whole thing funny and interesting so you’ll not feel cheated by having to read the whole post in order to fulfill your Christian duty. [By the way, for those people who do not know me personally, or have not caught on from my previous posts: I tend to use a lot of sarcasm, so please take note of that. I will be using a decent amount in this post, so make a game of it and try to spot how many times I do. Maybe there will be a prize for the winner.]

Rounds 1-2: Emotionally Taxing

As I’ve reflected on my first two rounds of chemo, I think the hardest part of the whole experience was how emotionally taxing they were on me – even though physically nothing really changed that much. This came in several different waves and had several different layers to it:

Confirming my diagnosis: The first thing that starting chemo did to me is that it made me really have to admit and confirm that I was, indeed, fighting a life-threatening tumor. It took a while for that to sink in for me. I think I was initially in shock after the oncologist at MD Anderson said I needed to start their most intense 6 rounds of chemo as soon as possible. It just didn’t seem to register fully. But once I started, I couldn’t deny anymore that I was now fighting cancer and a deadly tumor at age 30. You always think it’s going to happen to someone else instead of you, so it’s hard to accept when it does happen to you. I don’t think I initially realized how emotionally taxing this was on me.

Reminded me of my sister: On top of that, me starting chemo came on the heels of my older sister, Christina, dying from colon cancer a few months earlier. So I had to face the realization that the same disease that took my sister was coming for me too. This was also further complicated by the fact that she pursued naturopathic healing methods while I have chosen to do a more traditional chemo (I wrote about this difficulty in this previous post: Contemplating Chemotherapy: Round 2 – What If It Works?). So now chemo was both stunting my grief because it had already began taxing me emotionally and stealing my time/energy, but at the same time it reminded me of my grief and my sister. When I first went into the infusion room at the oncologist I remember being reminded about visiting my sister when she was fighting her cancer and getting vitamin infusions in Houston – the two infusion rooms were very similar.

Not knowing if it was working: Perhaps the hardest thing of all was that for two weeks I didn’t know if chemo was even working. Until I got my first CT scan after the first two rounds, I pretty much had to trust that this was going to save my life. For over a month there was a very real chance that my tumor would cut off the blood supply to my intestines, they would die – and I could die on the operating table or wherever. I don’t think this fully sank in at the time. I think sometimes shock is a healthy way that God gives our bodies and minds time to accept difficult realities that we don’t expect (like my little sister said in her awesome guest post you can read here: Guest Post: Facing the Reality of Death).

Losing my hair: As I wrote about in a previous post (Contemplating Chemotherapy: Day 15-28 – “[Bald] and Unashamed” – gosh, I’m linking to a lot of previous posts), losing my hair was actually a lot harder than I had anticipated. Since strutting (and owning) my new bald head, many people have (quite sincerely) told me that they actually think it looks good on me (and, let’s be honest people, how could it not look amazing when combined with my already astonishingly good looks? Right, ladies?). But losing attractiveness was never really a concern of mine when I lost my hair (obviously, I remain unequivocally attractive) – I didn’t feel unattractive after losing my hair (Ok, maybe a little bit after losing my manly beard), instead I felt naked. I felt like people now knew something intimate about me and I didn’t have any way to hide it and be normal. You see, as a natural introvert, I value the ability to share intimate things with only the people I choose. I don’t mind people knowing me well, but since it takes energy for me to do so, I want to share deep and intimate things primarily with people I know well and have built deep relationships with. Losing my hair meant I suddenly had no choice but to tell everyone that I was fighting cancer and undergoing chemo. It felt like my life was now exposed for all to see, regardless of what I wanted, almost like I was now public domain. When I go out in public I want to blend in and be “normal” – now I feel like I stick out and can’t hide it.

Being known without knowing: This may be the most difficult to explain, and I have to be careful in what I say here because it could come off very different than the way I intend – but I think it needs to be said. During the first two rounds of chemo, especially when I announced that I was going to blog through this experience, many more people responded with great interest to follow along than I had anticipated. I think a lot of this may have been because people were following my sister’s story, and then consequently wanted to follow my story afterward – but essentially I was quickly adding at least a hundred new facebook friends, most of which I had either never met or only met once or twice briefly, and at the same time I started growing a large group of people following my blog posts. Essentially, in some small way, I became what I call “quasi-famous” to a smaller group of people. Now, part of this has been great, and I really am glad that so many people have found comfort and humor and joy and lots of other things out of reading my blog posts and following my journey. I really enjoy writing, and it is one of the primary things that gives me some semblance of joy and purpose during this difficult time. And I’m not going to lie: getting more likes and comments is nice at times. But like everything, it comes at a cost.

Because I have been so open about my experience in my writing, and because I have so many more people following along, there now is this odd situation where there are all these people that feel like they really know me because of my writing and sharing, while at the same time I barely know them. As an introvert, that is a very scary and draining thing, as I am finding out. You see, I have gotten dozens of emails and messages from people who are appreciative of what I’ve written, or who identify with one thing or the other. While this is encouraging and helpful in one way – in another way it is very emotionally exhausting to keep up with. While for an extrovert this sort of increased social interaction may be welcomed and energizing, for me it is actually very draining. I don’t mean bad, but just that it zaps my energy. Being introverted for me largely means that I gain/recharge energy when I am either alone or with people that I know well and am comfortable around – whereas I have to use energy in larger social situations or to enter relationships with people I don’t know at all. This means I value a few very deep relationships and am fiercely loyal to those people because it took me a lot of energy to get there. It also means that I am OK with having a small group of friends.

All of this comes together to create an interesting situation where I can write and be open about what I am experiencing and enjoy that people are following along and interacting by commenting or messaging/emailing me – but at the same time it can absolutely drain and exhaust me. It’s very much like preaching for me. I love preaching, and enjoy talking to people afterward, but when church is over I go home and absolutely crash because it takes so much out of me. Then, in later weeks/months/years, I have to deal with the fallout of everyone in church knowing my name and who I am because I did a three week series there, but me barely remembering their face because I shook dozens of hands that week and just don’t have the energy to remember everyone. So I run across someone in HEB and they say, “Jason! How are you? Loved your sermon series.” And I engage in small talk (which introverts hate) and then walk away thinking, “Who was that again? I sort of recognize them, but really have no idea who that is.” Then I feel guilty for not remembering everyone’s name like I’m a failure of preacher or Christian because of it.

Well, the same thing has happened with my blogging during chemo, but this time it’s not just people I may recognize at church – it’s people all over the country, some whom I’ve never even met before. And because they feel like they know me, it’s easy to interact with me like a friend. The problem is, I don’t actually know them very well, and that means interacting with them is very emotionally draining for me (again, not bad, just exhausting). So I’ve found myself both encouraged and daunted by the amount of responses I get – because I feel like I have to respond to everyone like I would a close friend. And the truth of it is, because of this, I’ve often failed to respond to very dear friends because I just didn’t have the energy left after responding to everything else: Facebook comments, blog comments, messages, and emails (or even texts/calls). That’s often why it takes me so long to respond to many of y’all, and why I’ve probably forgotten to reply to calls or messages from friends of mine (I really am sorry!). This is compounded by my energy already being low because of chemo right now.

All of this to say: I really appreciate everyone who is following along, and I do love the interaction and messages and emails and everything – so please continue and (seriously) don’t feel bad at all about doing any those things (in the past or in the future) – but please be aware that I may not have the energy to respond (either quickly or at all, honestly). And please realize that I can’t (and don’t want to be) friends with everyone who follows my blog, and I really don’t have the energy to make new friends this way – so please don’t expect me to do so. [Unless, of course, you are an attractive, single lady, between the ages of 25-33, who loves Jesus (and the rest of the Trinity too – I don’t discriminate), enjoys reading, wants to travel, likes mountains, plays board games, appreciates music, architecture, liturgy,  and preferably sings (well) and plays any number of instruments – if so, then please message away! I very well may want to be your friend. Ok, just kidding… but seriously, feel free to try.]

Ok, that last one was way longer than I anticipated initially – and parts of it may make me look like a jerk (trust me, single ladies, I’m not), but I’ve learned my limits and realized that during this time I need to save my energy to heal. I’ll try to interact and respond as much as I can, but can’t/won’t guarantee it. I do read them all and appreciate them, but just can’t respond every time, or in the depth I’d like to. Sorry, I’m an introverted human with limits.

Round 4 – Physically Taxing

Now about round 4, and I’ll try to be brief and will forewarn you that while I will try to use clinical language and not overshare, I will be talking frankly about unpleasant chemo side effects. It started like every other round, where typically during the first week I crash for a couple of days and sleep 20+ hours. Unfortunately, this was during Thanksgiving, so I literally slept nearly the entire day and then pretty much just dragged myself out of bed long enough to eat some turkey and went straight back to bed even before eating any pie. I felt like a grubby little raccoon coming out of hibernation just to steal some food (do raccoons even hibernate? I’m going to assume they do because I like that image in my head. Sort of like the GIF you see to the right). After day 7 or so, my body generally switches from hibernation mode (all the sleep!) to watchman mode (no sleep!), and then I slowly go back to normal and maybe have some lingering nausea and chemo brain for a couple of days.

But this time, the chemo was through playing and decided the gloves were coming off. So I had increased nausea that made it hard to eat anything for a couple of days. Then, on Friday, chemo really upped its game. Basically, chemo attacks rapidly reproducing cells in the body (like the little bastard I have in my abdomen trying to kill me). Since it can’t distinguish between different types of cells, it just goes hail Mary and kills them all. That’s why you often lose your hair on your head and face where it grows faster, but not the hair on your arms or eyebrows, etc. where it doesn’t grow as fast. Another rapidly reproducing cell in your body is the mucosal tissue, which lines your entire digestive tract. So a common side effect of chemo is sores or ulcers in your mouth that can be painful. I had experienced this slightly but largely been able to prevent them with a special mouthwash and increased brushing.

What I wasn’t prepared for, was the mucosal tissue in my lower gastrointestinal tract getting ulcers/sores in the lining. This is the part that may make you uncomfortable: basically, what this meant is that any time I had a bowel movement, the stool would irritate the ulcers and place me in nearly unbearable pain that caused all of my lower muscles to spasm and contract, and then left me doubled over nearly unable to walk for 5 minutes or so. Seriously one of the top 5 most painful things I’ve experienced in my life (and I’ve been through some really painful shit in my life – heh, see what I did there?). Now, this would be bad for a normal person who has one, or maybe two, bowel movements a day, but since I don’t have a colon and lost about a third of my small intestines, it is not uncommon for me to have 10+ bowel movements in a day, and often more when something like chemo is upsetting my system. So you can imagine how fun this can become, and how it feels like chemo is literally/figuratively kicking my butt right now. Luckily, this only lasted for two incredibly miserable days from Friday until Sunday.

Ok, you can come back and start reading again, I think. But after that, it was out of the fire and into the frying pan. As my posterior starting getting better, the sores in my mouth got away from me and became nearly unbearable, to the point that I couldn’t chew anything at all and even drinking fluids hurt my mouth and tongue. At the same time, on Sunday night I got a high fever, and nearly had to go to the ER because infections can be life-threatening when my immune system is so compromised by chemo (luckily it went away). Then, as my mouth got better, the middle section of my gastrointestinal tract decided to get in on the fun. So my esophagus got ulcers and anytime I ate or burped or laid down, it felt like my chest was on fire like heartburn. Now, I’ve never had heartburn before, but the first time it happened I thought I was having a heart attack it hurt so much. As my friend Eric pointed out, it feels like you’re going to die – and you start to think: “Well, I guess this is how it ends.” So here I was, just pretty miserable as my GI tract had decided to rebel against me from inside and take me out as much as possible in response to chemo, with a sore mouth, sores in my esophagus, and a sore butt all at the same time – for days. Needless to say, it has been a pretty shitty week (and, no, “crappy” or “bad” just aren’t unpleasant enough to describe this week, so I’m not just going for shock value, I’m trying to be accurate and honest).

“To Die is Gain” – “Come, Lord Jesus!”

As of right now, everything is finally to the point that it is bearable (still painful and uncomfortable, although getting better slowly), but there were definitely some times that I wanted to cry “uncle!” and just be done with it. In my life, I’ve never really felt like I could fully say that “to die is gain” with Paul, but I’ve started to see some glimpses of when it might feel more like it. If “to live is [Chemo]” – then maybe “to die” actually is “gain.” That thought definitely crossed my mind a time or two this week when I was in constant unbearable pain. It’s also crossed my mind a time or two as I’ve started to anticipate rounds 5 and 6, which will most likely be worse. I can’t even imagine how painful that will be (and don’t want to).

In light of Advent, it’s also made me a little more honest when I say “Come, Lord Jesus!” I mean it more now. Growing up I would say “come Jesus!” because I was supposed to, but I never really meant it. There was so much I wanted to do before he came: I wanted to go to college, to get married, to have kids, to travel the world – to experience life and what this world offered while I had the chance. But that was before I had experienced the pain that this life can bring, the real and deep brokenness in this world. Before I felt the void after my dad died. Before I was deeply wounded by a fellow Christian that I loved and thought loved me. Before I spent 17 days in the hospital with complications after having my colon removed. Before I watched my sister battle and die from the same cancer that took my dad. Before I went to the ER and found two tumors in my own body. Before I started my own battle with the little bastard and chemo…

I’ve been told that 30 is supposed to be the prime of your life – but this year has quite possibly been the worst yet. Physically and mentally, I should be at the peak of my existence (especially with my chiseled features and well-toned body, *ahem* ladies). But instead, I look in the mirror and see a body that’s been beaten down and broken over the years. I have two overlapping scars that run down the middle of my abdomen where they opened me up twice. To the right of that I have a circular “hole” that has closed in where my ostomy bag once hung in between surgeries. On both sides of my waist I have two small scars where drains were placed to get rid of an abscess. On the right side of my chest is a double port bulging out and pressing against my chest, where I infuse my chemo each round. My hair and beard are both gone, and in its place my hair only grows in unsightly patches almost like the pre-pubescent beard of a teenager. My eyes look more tired and worn, and I’m slowly losing more and more weight that leaves me looking even more skinny than before. And that’s only what you can see, not to mention the internal damage of a missing colon, feet of missing small intestines, and the little bastard reeking havoc in there, with chemo partly aiding in the job.

This is my prime? My peak?

Hopefully not. There’s got to be something better than this. There’s a deep-seated sense in me now that hasn’t been there before, that Jesus has to show up. That he really needs to come, and he really needs to come soon!

That doesn’t mean I’ve given up and think there’s no joy in this world. There is so much I still want to do, so much beauty and life I want to experience, so many places I want to see, so many people I want to spend time with. But there is also a realization that something is wrong. Deeply and tragically wrong. Something is broken. And I know I can’t fix it. We need resurrection. To die with Christ really is better than to live without him. I’m starting to see that, and sometimes the pain actually helps. It makes me long for him – makes me anticipate his coming – makes me actually want it to happen soon. Which is fitting for Advent.


Prayer Requests:

Ok, after making you read that long post just to get to the prayer requests, here they finally are:

  1. Please pray for me physically – to both keep getting better from this miserable week and also to figure out a way to prevent all this pain from happening again in rounds 5 and 6. I’m really nervous about them now, and don’t know how I’ll be able to go through all that again to a higher level if it gets worse. Maybe they can just put me under for 8 weeks. I’d be OK with that.
  2. My brother and I go to MD Anderson next week, and I’ll be getting my second checkup CT scan on Wednesday evening at 6pm, and then getting the results Thursday morning at 8:30am. Last time the tumor was stable, so we can hope for more of the same and hopefully some shrinkage. I’m a lot less nervous this time, but it still is never easy waiting for scan results in this situation – so I’d appreciate your prayers that I won’t be anxious. Also, my brother (who also has FAP – our disease that turns into cancer) has a consultation with a specialist there, and is considering what to do – so pray that goes well, and for the decisions Jonny and his wife are going to have to make in the future.
  3. My next round of chemo, unfortunately, starts on December 19th. Which means that I’ll be getting most of the side effects pretty hard while I am in Houston with all of my family for Christmas. That really sucks because this is the first time since my sister’s funeral that we will all be together as a family, and I was really looking forward to spending time with them and grieving/remembering Christina as a family. At best, hopefully the chemo will just make me tired and sleep a lot, but at worst it could mean constant pain and being uncomfortable which would just ruin the time for me. Christmas is already a hard time for those who have lost someone, this is the first without Christina – so I’d like to be fully present. So pray that I can still do that as much as possible in spite of chemo. That I have energy and time to grieve on my own and with my family.
  4. Finally, please pray for encouragement. I think I was doing fine up until now, but this last round was just really discouraging, being stuck at home for nearly three weeks straight.

I think that’s it – but I’ll update this if I think of anything else. I’ve said it before, but I really do appreciate your prayers and can’t thank you enough. I have felt so supported in all of this, and am extremely grateful for that.

– Jason

More posts from the Contemplating Chemotherapy series:

Round 1:

Round 2:

Round 3:

Round 4:

Round 5:

Round 6:

2 Replies to “Contemplating Chemotherapy: Round 4 – “To live is [Chemo] to die is gain””

  1. Jason,

    I am so sorry for the loss of your sister and father. Cancer Sucks!!! I will be praying for the above requests for you.

    From,
    A current 3rd time cancer battler!!

    No need to respond just wanted you to know I am praying!!!

    Reply

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