Life & Health

Contemplating Chemotherapy: Day 1 – Intro to Chemo

September 1, 2016

I have decided to blog my way through my next four-month experience with chemotherapy (which I am undergoing to treat my invasive and possibly life-threatening desmoid tumor in my abdomen). I imagine it will come out something like the short series I did when I had my colon removed a number of years back (see posts titled: Meditations on Surgery). I will try to make consistent posts, but can’t guarantee anything because I’m not entirely sure how my body will respond to the chemo, so I may suffer from “chemo brain” which will make writing coherently difficult. Some of the posts may just be sharing my experience and observations on chemo or about chemo, while others may be more theological reflections. As a disclaimer: if there is anything disagreeable or semi-heretical, assume it is the “chemo brain” speaking instead of me.

There are a couple of reasons I want to write about this experience, in no particular order:

  1. I am a naturally introspective (or perhaps, “contemplative”) person, but writing or talking to people helps me solidify the thoughts that are constantly buzzing about my head. I am an internal processor, but getting things into the external helps clear my mind and allows me to interact with ideas in a different way, and not overcloud my brain. I also appreciate feedback from others, which writing on a blog allows me to solicit feedback from those who want to interact, and not bother those who don’t really want to talk about my chemo experience at the moment.
  2. Another tendency of mine as an introvert is to retreat into my shell and assume people don’t want to interact with me unless they initiate conversation. One of my biggest fears about starting chemo was the idea of going through it alone. Now, I know intellectually that this is a lie – I am certainly not alone and have a huge and gracious network of friends and family that already have overwhelmed me with support and been the hands and feet of God, especially this year – but that still doesn’t fully take away the emotional weight that makes me feel like I have to bear this alone. So I am trying to actively invite people into my experience instead of just keeping it to myself, and writing publicly is one way I can do that.
  3. I want to be particularly honest with myself and others about this experience. Unfortunately, Facebook and Instagram can make our lives seem much more exciting and fun-filled than it really is in the dreary mundane days of our lives. When I go through a difficult experience I feel a pull to “be strong” and “be positive” through it all, and consequently only share that side. I think that can be helpful, but it is definitely not the full picture. So I intend to be brutally honest with myself and everyone about this experience – the ups and downs, the joys and the despair, when I feel super spiritual and when I’m angry at God or wonder if he’s still there. I don’t want to sugar coat this experience because it does a disservice to others who are going through the same thing and feel like they have to put on a happy face. That doesn’t mean I won’t be smiling or making sarcastic jokes (you know how much I love good sarcasm!), but that this can be a venue where I can be vulnerable without having to spill my guts (perhaps literally, ha! [sarcasm here, in case you were wondering] to everyone that asks “how are you doing?” and just wants me to respond with “good, and you?”.
  4. Finally, one of my favorite quotes from C.S. Lewis used to be at the top of my blog, and he says, “Whenever you are fed up with life, start writing: ink is the great cure for all human ills, as I have found out long ago.” As many of you already know this year has been very difficult for myself and my family and it continues to go downhill fast, and to be bluntly honest: this is about as “fed up with life” as I’ve ever been. So I’m going to start writing as Lewis suggests.

 

I’ll probably eventually develop some consistent format in the future, but for now I think I’ll perhaps start with a brief summary of notable things from my experience with and on chemotherapy, and then move to some things I have been contemplating in light of the chemo – hence the name “Contemplative Chemotherapy.” Although this time I think all my contemplation went into the reasons I’m going to start writing above, so I’ll just give you a quick update and play-by-play so far.

Chemotherapy – Day 0-1:

Day C-13 (Thursday) [meaning 13 days before chemotherapy – I’m trying to sound epic]:

Went to MD Anderson in Houston, expecting to be put on a low-level drug and told we’ll be “watching and waiting” with periodical check-ups to make sure everything is fine – or at least given a wide array of options to choose from. Instead, I was told that scans showed the tumor was growing fast and could quickly become life-threatening if we don’t act aggressively. They told me it was inoperable because of the location, and radiation was an extremely risky and dangerous choice, so they highly recommended that I start their most intense combo of chemo and that I start as soon as I can. Honestly, it felt like they kicked me and knocked the air out of my lungs. The rest of that consultation did not go so well because I didn’t want to hear them say “most aggressive chemo” or “start next week” again, which would make it more real – and they kept using the big “C” word. I had a “benign desmoid tumor,” I did not have “Cancer” (even though I was at MD Anderson Cancer Center and talking to my second oncologist). So I felt like I was trying to ask the right questions or push the hidden button so they would say, “Just kidding, you can actually just take this pill that will make you itchy or dizzy every once and a while.”

Then I had to call everyone and tell them while trying to fly back to work the next day…

Days C-13 to C-2:

The next two weeks were a blur of making necessary appointments (and then rescheduling and canceling and rescheduling again), finding out about insurance and leave of absence or disability options, trying to tell everyone about what is going on (I am really sorry if I forgot to tell you, I really tried my best but things were crazy and they don’t give you a protocol for how to tell everyone bad news), and trying to just keep my head above water.  I am glad those weeks are over. Luckily, I don’t think I had enough free time to start worrying or get anxious.

Day C-2 (Tuesday):

I think this is when it finally hit me that I was about to start chemo at age 30 for something that could any day become life-threatening. I had thought of that before, but it had not sunk in fully. That night I was playing some board games with some other nerds (I mean that term in the best way possible), and after playing one quick game (and losing!) that ended about 8pm, I started feeling hazy and feverish – to the point that I said that I needed to go home and sleep since I didn’t feel so good. That night I woke up around midnight drenched in sweat and wrapped in my blankets – and then felt fine the rest of the morning.

Day C-1:

Unfortunately, this was supposed to be my first day of chemo – but the port I needed wasn’t in stock at the surgeon’s so they called me and pushed my start date to the next day (Wednesday) so they could overnight my cyborg implant. Initially, I thought that maybe another day to rest would be nice because of my feverish night before – but this day turned out to be one of the more emotional and anxious days I’ve had in a while (for more reasons than I can share). I practically broke down while driving to drop off some blood work, and it was in response to a sweet text from a friend that was entirely encouraging, but somehow got to me and made all of this start to sink in. About 6pm, the fever started to set in again (I got up to 101.5) and I got worried that now they wouldn’t let me start because of a fever. Then that meant I’d have to wait until the next Tuesday to start my chemo since Monday was a holiday. So I started worrying about having nearly another week to wait and be anxious about starting – and I really just wanted to go ahead and get these 18 weeks over with. So again, a little after midnight I woke up drenched in sweat, and then felt fine afterward.

Chemo Day 1C-Day:

The first day of chemo actually went pretty well. I woke up feeling great, the surgeon called me in early because of a cancellation and the port placement went amazingly smooth with no pain at all, and then they got me in early to start chemo after a good lunch with my mentor. I was still a bit nervous about the fevers pushing back chemo, but my temperature held strong and they decided to go ahead and start and just told me to watch my temperature and call immediately if it got high. In fact, getting Winston (the name I have given my satchel carrying my chemo and pump) was perhaps the most anti-climatic thing of the whole experience. I’m not sure what I was expecting, but I always thought that it would be more dramatic for some reason (maybe even ceremonial?). He just hooked me up, explained how things worked, watched me for a bit to make sure I didn’t have a bad reaction, then sent me home with his number if anything went wrong.

I felt so normal that I even went into work that night and felt fine the whole night. Later on, I did start to feel a little hazy or foggy, but nothing too bad – just sort of like I was a bit more fatigued and my attention span was shortened. The fever never came back even a little bit. So I’m guessing it was just stress and nerves those two days that made me physically feverish.

So far, that’s it. Still doing pretty good, honestly. Nothing more notable to mention.

Sorry for the length of this, perhaps I can try to be more concise in future posts, but thanks for reading, and I’d love to hear responses or am more than willing to answer any questions about anything – I’m an open book.

Xaire,

– Jason (& Wintson)


More posts from the Contemplating Chemotherapy series:

Round 1:

Round 2:

Round 3:

Round 4:

Round 5:

Round 6:

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30 Comments

  • Reply Angie Galindo September 1, 2016 at 11:58 am

    Loved reading your chemo blog. I’m here for you, let me know what I can do to help.

    • Reply Jason Custer September 2, 2016 at 8:19 pm

      Thanks, Angie!

  • Reply Angie September 1, 2016 at 12:38 pm

    Jason! Happy to see you’re in WordPress land. Both Chris and I look forward to following and praying for you. You’re in our constant prayers.

    • Reply Jason Custer September 2, 2016 at 8:21 pm

      Thank you, Angie. I appreciate the prayers.

  • Reply Shawnna Hoffman September 1, 2016 at 12:40 pm

    Jason, thank you for penning your story and sharing it. You and your entire family are in my thoughts and much more importantly, constantly in my prayers. Your openness and honesty in your blog will give us all the direction to pray for you. I know you don’t know me (Cari’s mom) but I loved Christina dearly. And I’ve always admired your family just from Christina’s stories.

    • Reply Jason Custer September 2, 2016 at 8:23 pm

      You are most welcome, Shawnna. Thanks so much for your prayers. I’m glad to have you following.

  • Reply Kathi Waligora September 1, 2016 at 12:43 pm

    Will be following your posts, Jason. Just said to Ron last night, “Little does Jason know how our hearts are with him and how we are praying for him.” Now you know! And when you think you are alone, remember Ron and Kathi are with you in thought and prayer. And the Father loves you and wants you well.

    • Reply Jason Custer September 2, 2016 at 8:24 pm

      Thank you so much for your prayers, Kathi (and Ron!). It does mean so much to me to know y’all are praying and thinking about me during this time.

  • Reply Deonna September 1, 2016 at 1:15 pm

    Keep sharing, Jason. I am praying for you.

    • Reply Jason Custer September 2, 2016 at 8:24 pm

      Thanks, Deonna.

  • Reply Amy September 1, 2016 at 1:23 pm

    Jason- you are really gifted at articulating your experiences. I am praying for you as the Lord brings you to my heart which is so often. One of my favorite memories of you (which admittedly I don’t have many) was when you lived at Shelley and Erics in Dallas and Eric and I were visiting and talking with friends over dinner about the super power we would choose if we could have any. You walked in and asked if we always discuss this type of thing upon hanging out. So, the question of the moment. If you could choose any super power what would it be?
    Thank you for including us in your journey and offering it up to the Lord to be used for His purposes. He is so glorified through you and your transparency and dependence on Him.

    • Reply Jason Custer September 2, 2016 at 8:28 pm

      Thank you, Amy. I do appreciate the prayers and encouragement. Hmm.. I know it’s a pretty common one, but I am always drawn to the ability to fly – which I think would provide some spectacular viewpoints and perspectives, as well as the convenience of it all, and the thrill.

  • Reply Hannah September 1, 2016 at 1:53 pm

    Thank you so much for sharing your experience Jason. Praying for you

    • Reply Jason Custer September 2, 2016 at 8:28 pm

      You’re welcome, Hannah. Thanks fo your prayers.

  • Reply Jean Hunt September 1, 2016 at 4:36 pm

    We are praying for you!!!

    • Reply Jason Custer September 2, 2016 at 8:28 pm

      Thanks so much, Mrs. Hunt!

  • Reply Leslie September 1, 2016 at 6:00 pm

    Jason, thank you for writing. We are praying for you. (and also, I vote for wearing Winston in the fanny pack position because it reminds me of your dad in Hermosillo, which makes me smile. He would unzip that thing and hand out money to people. And then he would write on his little notebook the record of the money he just handed out and put it back in the fanny pack and zip it back up. So many good memories of such a wonderful man.) I’m really glad you’re writing. Much love to you as you embark on this journey. We Linebargers are praying.

    • Reply Jason Custer September 2, 2016 at 8:31 pm

      You’re welcome, Leslie. Ha! Yes, I can very clearly see him proudly sporting his fanny pack – such good memories. I remember the notebook too! Thank you so much for your prayers. It really means so much to me. I’m sad that y’all are so far away in California, but from what I can tell God is truly blessing your time there with Chris’ parish – and all the beauty around y’all.

  • Reply Jack September 1, 2016 at 6:04 pm

    Thoughts and prayers for you and yours…

    • Reply Jason Custer September 2, 2016 at 8:32 pm

      Thanks, Jack!

  • Reply Jackie Custer Luckey September 1, 2016 at 8:21 pm

    I’m so happy to read this and keep you in prayers. Thank you for sharing. Muscular love to you.

    • Reply Jason Custer September 2, 2016 at 8:32 pm

      Thanks, Jackie! Miss y’all, and appreciate the prayers so much.

  • Reply Megan September 2, 2016 at 11:10 am

    Hi Jason,

    You don’t know me… But I grew up with Chris and my brother was in a band with him and all that. I followed Christina’s journey and now to here about you, my heart breaks. Hasn’t your family been through enough? I use to be very spiritual and Christian-like and excited about God but honestly it has grown tiring hoping and praying for things that don’t happen. It’s His “plan” anyways, so I guess there is no changing it, no matter what I pray. I probably seem like a pessimistic Patty but really I feel like I am a realistic Rebecca. (See what I did there). I have a tendency to be a little to blunt and open with no filter. (can’t say I didn’t warn you) …anyways, I love that you named your chemo pump Winston! Finding humor in crappy situations is the best. I Read your blog and I will continue to follow you… Thank you for your honesty, good and bad. Your writing is great and easy to read, very talented you are. Anyways, you said we can ask you questions and I have a couple … If you don’t want to answer them that’s totally fine or if you find my replies offensive let me know.

    Question #1… When they told you it was life threatening…. Did you immediately want to make a bucket list? Or think of things you have wanted to do but hadn’t gotten around to them yet?

    Question #2… whats your favorite nerd game?

    • Reply Jason Custer September 2, 2016 at 8:45 pm

      Nice to meet you informally, Megan. Thanks for following – hopefully it will be worth it. Don’t even worry about trying to offend me, you haven’t even come close at all. As to the questions:

      1) Honestly, when they told me it was life threatening, my first thought was “not now.” Like I said, one of my biggest fears was doing this alone. Part of that is not wanting to do this a single person. So my first honest thought as a response was, “why couldn’t this happen three years down the line when I’m (hopefully) married or seriously dating and have someone close to confide with and support me through this.” Now, this goes to some of my own personal longings for a close companion and my own personal fears that now I am even more of damaged goods than I was before (perhaps another post or conversation…).

      As for the bucket list – I mostly just have a traveling bucket list. At the top of that travel list are Iceland and Istanbul. In fact, the week I initially went to the ER and found out about this tumor was the week my brother and I were all set to go to Istanbul to meet up with a friend of his. So I was pretty devastated that I couldn’t go (and still can’t). Other than a travel bucket list, I don’t really have an actual “bucket list” – but I’ve thought of making one now. Maybe another post…

      #2) I’ll try to be brief or I’ll show too much of my nerd cards: I really enjoy Euro-style board games. My favorite right now is one called “Agricola,” which is a farming game (I know, it sounds boring, but the strategy and variety of play are amazing!) I also enjoy the tile-laying game Carcassonne. I could mention more, but I’ve started down a slippery path on something I can talk about for a while, so I’ll spare you all the details.

      Thanks for asking questions!

  • Reply Christan Smith September 2, 2016 at 12:55 pm

    Thank you for sharing your heart and experiences. I had been wondering about you since I last saw you at Christina’s celebration. (I am married to a cousin of Chris’). I am very grateful to know your family and will continue to go to the throne of our gracious God in request for complete healing of mind and body!

    • Reply Jason Custer September 2, 2016 at 8:46 pm

      You are most welcome, Christan. Thank you so much for your prayers.

  • Reply Mike Tiland September 2, 2016 at 9:54 pm

    Jason,

    I will be praying for through this time. Thanks for taking time to share as you walk through this season. We have not stayed in contact much, but I will be praying. I will pray for healing and that God gives you peace that surpasses all understanding. Thanks for sharing.

    • Reply Jason Custer September 3, 2016 at 10:04 am

      Good to hear from you, Mike. You are most welcome, and I do appreciate your prayers and interaction.

  • Reply Hannah Carr September 2, 2016 at 11:18 pm

    Jason,
    Thanks for being willing to share all of it-not just the good, but the hard parts as well. Our family will be praying for you and hoping to check in frequently with your blog, though I’m so much worse at keeping up with reading than I used to be. Is there an email subscription?? Also, perhaps at some point we can also comment back and forth about board games, because we have a truly embarrassing collection (meaning size. The content is wonderful haha) Agricola and Carcassonne are definitely in the mix. Also, if it’s not too much trouble, could I have your best mailing address? you can give using FB or my email.

    • Reply Jason Custer September 3, 2016 at 10:10 am

      You’re most welcome, Hannah. Thank you for your prayers. I think I just figured out how to add email subscription: you can find it on the sidebar on the home page or on the “contact” page, or there is an option to subscribe to new posts when you comment anywhere as well. I just set it up (I think), so let me know if it works or if there are any issues. I’m still learning about WordPress and what works and what doesn’t, so any feedback would be helpful. I’m trying to finish up and publish a new post soon, so perhaps you can see if it works on that new one.

      I’m always more than happy to chat about board games – are you looking for some new ones? What sort of games have you enjoyed most?

      Also, I will email you my mailing address right now.

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