Life & Health

Contemplating Chemotherapy: Day 8-14 – Chemo Jason vs. Normal Jason

September 14, 2016

Pros and Cons of Chemo

So I’ve made my way through the hardest part of Round 1 of chemo (the rest of this week is just resting and recouping before I start Round 2 next Tuesday) and have had a little time to reflect on how my life has changed in light of it. So I figured I’d share some of the pros and cons of what life with chemo has been like so far. Obviously, these may change with time as the rounds become cumulative and my body gets more tired, but here are my initial impressions.

Pro: No nausea. I cannot describe how absolutely thankful I am that I have yet to experience any form of nausea during chemo. When I first was told about having to start chemo the thing I was most dreading was the nausea. Someone told me that she was nauseated for 8 hours a day when on my particular chemo cocktail, but she never vomited. To me, that’s the worst. Honestly, I think I’d rather be punched in the mouth repeatedly every day rather than feel nauseated for even an hour straight. And I’d probably rather vomit once an hour rather than feel nauseated for an hour. I’ve felt nauseated for long periods of time, and I have absolutely no desire to ever do that again. So I am beyond ecstatic that I have yet to feel nauseated this whole time – and I will keep popping the anti-nausea pills when they tell me to if that’s what I need to do to keep from feeling nauseated. So big, big pro: no nausea yet.

[As an aside, did you know that technically, it is improper to say I feel “nauseous”? You actually feel “nauseated,” but things like chemo can be “nauseous.” I’ve been using that word wrong my whole life. You’re welcome for this quick chemo grammar tip.]

Con: Fatigue. Lots of fatigue. That’s probably been the most prevalent symptom I’ve felt from the chemo. Not just the fatigue that caused my 24-hour sleep-a-thon, but a sort of constant fatigue that leaves me feeling lethargic and weak most of the time. It’s not very pronounced, as in I need to sleep all day long, but it rather just sort of dulls everything and makes it feel like I’m living in a constant fog. Perhaps the best way to describe it is to say that it’s sort of like right before or after you get really sick, but you’re super busy at work and so you go to work even though you feel really crummy. You can function, but everything is sort of miserable and takes lots more concentration than before. That’s what it’s like, which is really annoying. Part of me would almost rather chemo just made me feel horrible for a few days and then went away. But instead the chemo brain daze just sort of hangs over everything and has yet to fully go away, although it varies in intensity by day.

cancer-card

I made this cancer card because it reminded me of Ron Swanson when he said he had a permit, but it was really just a piece of paper saying “I can do what I want. – Ron”

Pro: The cancer card, or chemo-sympathy. I hesitate to put this down because talking about it may make it go away, but people are suddenly a lot nicer and more willing to do things for me. People come up and talk to me more, or send me messages of encouragement and prayers, or ask me all the time “can I get you anything at all?” It’s kind of nice. You can’t be mean to me: I have cancer. I even had a fun conversation with my quasi-famous musical friend David Dunn about this (see the photo to the l14212686_10154353456805520_801155659523833753_neft), which he posted to Instagram/Facebook without my permission (and without tagging my Instagram or Facebook profile so I could leech off of his semi-fame for more likes or followers – thanks a lot, Dave…)

Sometimes it makes me think this whole cancer and chemo thing isn’t that bad after all. I mean, I’ve had people say they want to buy me a board game and send it to me so I can have something to play. People have offered to bring me milkshakes or smoothies whenever (and have done it too!). I’ve gotten sweet care packages and cards from loving people. People in my church have been bringing really great meals. I’ve got new Facebook friends and Instagram followers now. I could get used to this. I’m sort of hoping this just keeps happening.

[Now, I recognize that people aren’t just being nicer to me all of a sudden just because of chemo, as if they just sort of pity me. I really am thankful that people recognize that this is a hard time and want to show their love and concern in physical and tangible ways – and it has been such a blessing for me. I feel so very loved and cared for from people both close and afar. So thank you so much to all who have been so gracious and generous to me during this time! I truly mean that.

Also, everyone keeps asking if they can do anything or get me anything, so if you want a tangible way to encourage me, here is a list of board games that would be great ways for me to spend my time during chemo brain and the fog and let me spend time with other people: Jason Chemo Charity.

Ok, I’m just kidding – you don’t really have to buy me a board game to show that you care. I should be ashamed for trying to utilize chemo-sympathy for personal gain.

But the link is already there, so you know. *wink* *wink*

Just kidding.

But seriously…]

Con: I actually sometimes don’t really like chemo-sympathy. The cancer card cuts both ways. Although it really has it perks (*ahem* board games – see above), most of the time I just want to feel normal and have people talk to me because they enjoy interacting with me rather than they feel like they need to because I have cancer and am going through chemo. It’s easy to feel sometimes like chemo can overshadow who I am as a person. I’m not Jason, I’m the 30-year-old in the church going through chemo. The two can get conflated easily. Now, again, I know that my friends aren’t being nice just because I’m chemo-boy (heh, that’d make an interesting superhero), but because they really care and want to show that during a difficult time. And sometimes I don’t really mind people being nice because honestly chemo and cancer suck (see more cons below), and it’s nice to know people care. But at times it’s hard to tell whether people see you as a person or a charity case – and if people aren’t thinking that, it can still get in my head that people are just being nice because I have cancer and am going through chemo. Perhaps part of it is just letting go of my pride and realizing that I do need help during this time, which isn’t always easy since I want to be able to do things on my own and be self-sufficient – but that’s getting way to reflective and convicting…

Con: Although I haven’t yet felt nauseated (note the proper grammatical use), chemo has affected my eating and taste of food. Typically, I enjoy the first half of a meal, and then all of a sudden my appetite just goes away and eating becomes a chore. I’ve lost 7lbs already in two weeks, and I’m already a skinny guy. I really enjoy food too, so I hate that I often have to just eat because I know I need the weight. I’ve also found that I can be sort of moody with food, almost like pregnancy cravings (I’ve also had an epidural, so I’m starting to understand and identify with women more and more). The other day I had an intense desire for breakfast burritos, so I made some and enjoyed my first burrito – but then after a bite or two of a second burrito, I had no more desire to eat and could barely stomach another bite. That, unfortunately, happens way before I’m full. So I’ve learned to eat much smaller portions and just eat more “mini-meals” – you know, breakfast then second-breakfast then elevensies and luncheons and afternoon tea…

Con: The fatigue affects my sleeping. You’d think that fatigue would make me sleep really well at night (and it did that first day it hit me), but most of the time I’ve been frustrated to find that my sleep is more fitful and restless than before now that I’m doing chemo. And I’ve been having weird and stressful dreams. It’s like the Mitch Hedberg joke – you get really excited about sleeping and then you start dreaming and you have to build a go-kart with your ex-landlord. Except I have dreams where people’s luggage has somehow gotten incinerated and I have to deal with the angry passengers all night long – and I don’t have Winston there to help. So when I fall asleep I don’t get much more rest, and much of the time I just lie there in bed exhausted but unable to actually fall asleep.

Chemo Jason vs. Normal Jason

That’s all the pros and cons I can think of right now, but I have also found one more pro in all of this, and that is what I’m calling “Chemo Jason.” There are three ways that I’ve seen Chemo Jason show up recently, and conveniently they all start with the letter “C”, alliterated like all good sermon points. They are: Caring, Cussing, and Comics.

Caring:

One of the things that I’ve discovered is that when I’m in the chemo fog, Chemo Jason really just doesn’t care anymore what people think of him. I sort of like that about Chemo Jason. I’ve always struggled with people-pleasing and wanting people to think the best of me, so it is a relief to just be really honest about who I am and what is going on in my life. That is one of the things I’ve largely been trying to do with this blog – just be honest about where I am, even if it is ugly. Not be Super-Christian Jason or Always-Happy-Through-Trials Jason, but just the real Jason. I started seeing a little bit of Chemo Jason coming out when I went on a walk with my brother after my 24-hour hibernation. I practically looked like I had just rolled out of bed (because I had) – my hair was sticking up, my beard was all matted, and I was wearing an old t-shirt and basketball shorts. So we walked to the Museum of the Southwest and I got some interesting looks, but I just didn’t care. I know that’s small, but for me that was a picture of something bigger going on in my heart. Chemo Jason doesn’t give a sh*t what people think of him. [Sketchy people like Chemo Jason will recognize that I’m quoting this hilarious video about Honey Badger which uses a lot of bad language so Normal Jason wouldn’t want anyone to know that he thinks it’s funny – but it’s a good segway into the next thing about Chemo Jason: Cussing.]

Cussing:

I used to think that anyone who ever used a curse word was pretty much a horrible person, and very possibly not a Christian – or at least a backsliding Christian at best (I also thought this about anyone who smokes cigarettes or drinks alcohol). But Chemo Jason actually doesn’t mind cussing that much anymore – and he actually thinks that there are times when using a bad word is pretty fitting. In fact, Chemo Jason has named his tumor “the little bastard” – because he’s got his grimy little mitts in other people’s business and he’s an accident that nobody wants around. Now, I could name him something PG like “Desmond” or “Charles,” but I really don’t like the guy and I like both of those names. I’ve learned that there’s some things that you kind of need to use harsh language for.

Cancer has taken my dad and my sister, and it’s trying to take me and threatening my brother. I hate cancer. So it’s not enough to say “stupid cancer.” That word just doesn’t fit – it’s too nice. I have a friend who when I told them that I had to start chemo their response was “Is it bad that all I can think of in my head are expletives?” – maybe that’s not such a bad response (and I consider this person a pretty solid Christian). I’m actually still not really comfortable with the “F-word” because of it’s connotations [even as Chemo Jason] – but I get the sentiment when people say “F* cancer.” I prefer the hashtag I saw the other day: #damncancer. It almost has Christian connotations, because I do think that in a sense one day God will “damn cancer” and do away with it. Jesus gets angry at death (see John 11:33, 38), and I think he’s angry at cancer too since it leeches off life and has taken lots of good people – and maybe he’d use some choice words to describe it as well. Paul talked about counting everything as sh*t (see Phil 3:8 – the Greek word is skubala which edgy pastors like to point out is equivalent to sh*t in today’s vernacular), so maybe Jesus wasn’t above cussing when the time was right. But Normal Jason is nervous that some people won’t read his blog now that he’s cussed on it and linked to a video with lots of cussing.

Comics:

Finally, Chemo Jason really enjoys reading comics right now – and he doesn’t care if everyone knows. Part of this is that I’m just not able to concentrate enough to read any more substantial books like I typically read – so I haven’t even read more than a page of any of my normal books since I started chemo. But part of it is that I also just really enjoy comics, and have always been sort of embarrassed to admit it because I thought people would think less of me. The truth is, I enjoy reading all kinds of different comics, from Calvin & Hobbes to Get Fuzzy and other comic strips all the way to Marvel Comics and even graphic novels, and that is basically all I have read since I started chemo.

Now Normal Jason would feel like I haven’t read anything of value or read anything productive during this time. He would think four months of chemo would mean I could get through several critically acclaimed novels and memoirs so that he could be proud of what he read, but Chemo Jason actually is okay with the fact that he is just reading for fun. My dad grew up reading Marvel Comics, so we have a bunch of original issues out in storage that we used to read, and I grew up watching the X-men and Spiderman TV shows in the 90’s, but then somewhere along the lines I decided that that stuff was childish and I put it away. But when I went to the ER and had two months off where I had a hard time concentrating, I found out that there is essentially a Netflix for Marvel Comics where you can read lots of digital comics – so I’ve been catching up on the 10-15 years I missed in comics and finding out why the characters in the Marvel movies are a little different than I remember them from the 90’s. It’s been fun, and I’m no longer ashamed to say that. Not all the comics are good, and sometimes I miss the old glory days of comics, but there are some good stories and even lots of literary allusions.

I also have been enjoying reading Get Fuzzy and a cartoon history of the world, as well as some graphic novels that actually are really good (like Maus and Jerusalem and Persepolis). I think it has been good for me to read exclusively for fun rather than to be productive or make my way through the Pulitzer prize-winning books, that way I can remind myself that life isn’t all about being productive or being more well-read than other people – which helps knock down my pride. I think I have an idol of feeling the need to always get something done during the day or be productive or read literary books – maybe Calvin & Hobbes can help me stop that.

calvin-hobbes-on-doing-nothing-02

calvin-and-hobbes-nothing

So if you know of any good humorous comic strips or graphic novels or Marvel storylines that are good, let me know so Chemo Jason can start reading them.

So what do y’all think? Any other pros or cons? Do you like Chemo Jason? Or should I go back to just Normal Jason?


More posts from the Contemplating Chemotherapy series:

Round 1:

Round 2:

Round 3:

Round 4:

Round 5:

Round 6:

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10 Comments

  • Reply Carlee Mejis September 14, 2016 at 12:58 pm

    Hi Jason ( Normal and Chemo)! I am following your blog, and I really appreciate getting to know you a little bit through your words. I only knew Boy Jason, so it is nice to meet you other two. As someone who has spent way too much of her life being careful, I applaud your bravery in being yourself in the moment.
    Your family has impacted my life more than I know how to express right now. I respect and admire your mom and dad so much. I will be forever grateful for my time with all of you in Mexico. Both Cathy and Jay taught me things that I will carry with me forever.
    Thank you for being open, Jason. Love to you and your mom and Michaela and Jonny. I’m praying for you guys. Carlee

    • Reply Jason Custer September 15, 2016 at 8:53 am

      Thanks, Carlee! It’s good to hear from you. I still have very fond memories from Mexico and all the team leaders that I looked up to as Boy Jason (you are included in them). Thanks so much for your prayers.

  • Reply Robert Campbell September 14, 2016 at 1:15 pm

    Hey Jason, Devin and I are thinking of you often brother and praying! I like Chemo Jason, I like the realness and honesty about life, the good and bad! And I am with you on the cuss words, sometimes they are just fitting and what needs to be said! Keep it up man, I look forward to reading what you write!! #damncancer

    • Reply Jason Custer September 15, 2016 at 8:54 am

      Thanks, Robert. I appreciate the encouragement. Make sure you keep Chris in line for us.

  • Reply Sandra Glahn September 14, 2016 at 10:13 pm

    Loved every word of this. I was praying for you on my way to work this morning, so it was fun for me to stumble on this post and see how you are doing. I was specifically asking that you not have bad nausea and that you aren’t nauseous to anyone (ha!). Praying for your mom, too. Thanks for bringing a smile. And BTW, if you love comics and graphic novels, check out American Born Chinese as well as the Graphic Cannon, if you haven’t already.

    • Reply Jason Custer September 15, 2016 at 8:59 am

      Thanks, Dr. Glahn. Hopefully I haven’t been nauseous to anyone yet – although they may just be too nice to admit it yet. Thanks for the graphic novel suggestions – I haven’t heard of or read either, but I will definitely check them out soon!

  • Reply Carol Frugé September 16, 2016 at 9:02 am

    A friend’s mother, this classy dresser (also a Christian) whom I have met in formal situations says, “Sometimes there’s just not a better word than s**t.” Sometimes an expletive relieves people of the need to pretend everything is okay. Your transparency is something both needed and missing in many Christian circles. Prayers for you every step along this uncharted journey.

    • Reply Jason Custer September 19, 2016 at 12:23 pm

      Thanks, Carol. I agree, I think we can often dismiss words without realizing that they have good and proper functions in the right context.

  • Reply Cheryl Barker September 18, 2016 at 9:38 pm

    I have absolutely loved reading your chemo posts Jason. I think this one is my favorite so far. You made me laugh and cry several times over. I consider it an honor that you are letting us all see the real Jason. I have always admired normal Jason but love chemo Jason. I think it has given me a reason to know you better- I hope that’s okay. Gordon and I are reading the posts aloud together and he wants you to know that he liked the honey badger video! Thank you for enriching our lives. We look forward to more.

    • Reply Jason Custer September 19, 2016 at 12:25 pm

      Thanks, Cheryl. That is absolutely okay – it’s been tough at times to reveal myself fully, but my hope is to keep doing that as much as I can during this time (and hopefully in the future as well). I’m glad Gordon enjoyed honey badger – I think the narration is hilarious.

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