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:
- 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.
- 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.
- 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?”.
- 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.
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.
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.
– Jason (& Wintson)
More posts from the Contemplating Chemotherapy series:
- Intro to Chemo (Day 1)
- The New “Normal” (Day 2)
- The Drop-Off (Day 3-7)
- Chemo Jason vs. Normal Jason (Day 8-14)
- “[Bald] and Unashamed” (Day 15-28)
- Thanks(giving) for Chemo?
- Advent, Watching, and Waiting with Chemo
- “To Live is [Chemo], to Die is Gain”