The Dirty Deets (Staging, Treatment, Side Effects)
Staging
While they don’t know 100% what stage it is until surgery, they’ve got a pretty good guess at where mine stands. Colorectal cancer is staged using three elements:
Thickness - 1-4 - How much of the wall of your colon has been affected?
N - Lymph node involvement - 0-2
Metastasis - 0/1 - Has it spread to other organs?
Based on this, my cancer stands at IIIC.
T4 - My tumor is quite large, and has spread through all the layers of my colon wall, extending into my abdomen.
N1 - I have some lymph nodes which appear “activated,” which is treated as “cancer until proven otherwise.” All of the affected lymph nodes are local to the area of the tumor.
M0 - Thankfully, I have no metastases.
Treatment
Radiation
I started by having five consecutive radiation treatments at MD Anderson. Before I could have these, I had to come in a week earlier to do a radiation simulation. During this, I had to lay on my belly on a CT scan table, while the radiation techs lined me up and got my measurements.
They gave me three tattoos, which are just tiny little dots or else I’d show you a picture, and Dr. Minksy and his resident teamed up to shoot some kind of contrast dye into my butt, and carefully taped a wire to my butt crack. I won’t pretend to know what that was for, but I’m reasonably sure it was sheerly to make me feel like the most awkward human alive. And it worked!
It was incredibly weird. Almost an out of body experience. I really had to laugh at the absurdity of it all.
It’s called fashion sweatie, look it up.
Oh yes, please stick more wires to my butt. DON’T LAUGH AT MY DIRTY SOCKS.
Ahh the ol’ in-n-out. And in. And out. And in. And Out.
I think they sent me through the CT scanner like 40 times. It was laughable how many times I repeated the same back and forth. It felt like a deranged amusement park ride.
The next week. I returned for the actual treatment. It takes the radiation team and physicists exactly seven days to create the plan.
Every day, I’d roll up to the radiation treatment, and have my car valet parked. MD Anderson is swaggy like that, and it was a nice little perk during the repetitive drudgery that is radiation. There are dozens of waiting areas for this part of the hospital. It’s staggering to consider the scale at which they treat patients with every conceivable cancer.
After scanning in with my ever-important patient card (which has such vital information as your patient number, which essentially replaces your very identity at MDA), I’d wait a little bit, then get escorted to the treatment room. They play satellite radio, and asked if I had a preference each time. I kept saying no, but I learned to stop being so damn agreeable when they played “Celebrate” by Kool and the Gang on day three. A very unkool song for such an occasion. It was all Beyonce past that.
The radiation room setup
All I had to do was walk in and lay on my stomach on the table. The techs would adjust my placement using my tattoo dots, then take some x-rays to ensure I was in the right place. When the x-rays were done, the treatment would begin, but I could never determine when the transition to treatment began as it’s all done on the same machine. The machine would move around me, turning 90º on each side, make noises, and do its thing. I heard fewer rocket ship sounds than I anticipated, but there were plenty of very stereotypical laser beam noises. It felt like absolutely nothing, and during that week, I had no real side effects.
Here is the most awkward video of all time of me ringing the “done-with-radiation” bell.
Next came chemo!
Chemo
When I first heard I’d be getting chemo, I imagined hair loss, weight loss, quality of life loss and a whole lot of bad stuff. But to my surprise, it hasn’t been quite that extreme. I feel very lucky to be getting a chemo regimen that’s relatively well tolerated, and doesn’t involve total hair loss. While it doesn’t suck as much as I thought it could and would, it’s still kinda the worst thing ever (that I’m really grateful exists).
My chemo treatments are here in Austin, thankfully. Every other Tuesday since September 25th, (with a little snafu of a week tucked in there that threw everything off!) I head into the oncology office for a day of fun.
Needle freshly inserted. Don’t worry, I don’t have a face rash, just the satisfying after-effects of the dermatologist extracting some milia for me. 🙏🏼
First, I have to have blood work. Part of this is having my port accessed. An hour or so before this, I put lidocaine cream on my port area, and cover it with plastic wrap to protect my clothes. When I get in, they disinfect the area (very dramatically) using about ten different products, then stick a 1-inch needle with a tube on it into the port. If I’ve numbed it properly, it feels like absolutely nothing. If I haven’t it hurts a little, but it’s nice to know it’s a guaranteed successful prick, whereas when they use my arms, they have to redo it quite often.
Before every treatment, they check my blood counts. If everything is kosher, I get to pass to the next step; the doctor! I have a doctor visit to make sure all is well and I’m handling side effects ok.
If all goes well, I get to pass go and collect my prescription for the miracle drug Akynzeo, which pretty much kills any nausea. Yay!
I head into the infusion center, which has room for ~100 patients. Every patient has a comfortable, heated recliner, and they bring out HOT blankets which is almost reason enough to just get chemo for fun. (Almost but would not advise.)
Each treatment lasts about 3.5 hours including the pre-medications they give you which are steroids, more anti-nausea meds, and honestly who knows what else. They could be putting literally anything in those bags and I’d be none the wiser. Weird.
Anyway. I get pre-treatment drugs, then the (amazing) nurses don full-on haz-mat suits when it’s time to handle the chemo. At my first treatment, they sent me home with my own haz-mat suit in case of a spill. It’s a bit jarring to see them treat something about to be injected into my heart so cautiously. Apparently chemo can burn skin if it touches it. Coooooool.
Very dangerous stuff you’d never want to ingest under any circumstances.
This is a very genuine and not-at-all-forced half smile.
Oxliplatin, the hard stuff.
Leucovorin, the helpful stuff.
After my long Oxaiplatin infusion, I get a big dose of 5FU as what’s called a bolus. It looks like a turkey baster and they push it through my pump. It doesn’t feel like much of anything.
The bolus of 5FU that gets pushed through at the end. And Rowan concentrating.
Then, I get my take-home chemo. I’ve unaffectionately dubbed it my Lemonade. Ya know, that old thing about lemons? Well:
This stays on my person for 46 hours. I have a little fanny pack that doesn’t leave my side. It’s pretty weird to have to carry something around with me like this, but it’s easy enough as long as I remember it’s there.
Two days later, I head back to the clinic where they remove the pump and give me IV fluids and a Neulasta shot to help my body make enough white blood cells to keep me healthy.
Side Effects
Overall, my most persistent side effects are fatigue and cold sensitivity. Fatigue is very common and pretty much to be expected during cancer treatment. I can say confidently though, this fatigue is not like regular fatigue. It’s super-powered and persistent and surreal. It pulses through every vein and extremity and sucks the fun out of a lot. However, it does make sleeping just THAT much more delightful.
Radiation Side Effects
With my short course radiation, my side effects were only supposed to come the week after treatment. Typically with 28-day radiation, you experience side effects during week three. But given my shorter course, I was told to look out for them during the week after treatment. That week came and went with no side effects other than fatigue.
During the third week after treatment, I got all the side effects and then some. Diarrhea from hell, (if you think this is TMI, I would stop reading. You’re reading a blog called Butt Club, after all) general feeling awful and severe pain all found me at once and gave me a serious taste of the realities of cancer.
It was an incredibly tough week, and I ultimately landed in the hospital due to a loosely related small intestine infection for five days. I recovered from that and restarted my chemo regimen, but it was easily the hardest week yet.
Chemo Side Effects
As I mentioned above, fatigue and cold sensitivity are the most prominent side effects for me so far. The cold sensitivity is a really strange one caused by the Oxaliplatin. It effects both things you touch and things you eat or drink, or even breathe, like cold air. (Thanks for the surprise winter weather on my chemo weeks, Austin.)
So, if I touch, eat or drink anything even remotely cold, including tap water, my body interprets it as much colder than it actually is. For drinks, this equates to feeling essentially like whatever I’m drinking is extremely carbonated, overpowering my mouth. If I eat something REALLY cold, it will just make my entire tongue numb and I lose the ability to talk normally for half an hour or so, which I actually find quite funny. Not sure why no one else enjoys my babbling like a baby during that but WHATEVER.
Also, if I touch anything, mostly a cold can or something from the fridge, my hands react as if they’re holding dry ice. I can only hold cold things for about two seconds before they feel like they’re going to turn my hands to crispy ice. This one is pretty easily preventable – I’m careful to have gloves with me at all times, and it’s a convenient excuse to avoid any and everything even remotely cold, which was already my life’s mission anyway.
Beyond these, I have little symptoms like crazy intense calf cramps the day after infusions, random hairs falling out everywhere, stomach pains here and there, and did I mention fatigue? And I’d be remiss to not acknowledge the infamous Chemo Brain. I find myself feeling so out of touch, forgetting words, and just feeling like I’m generally in a heavy haze at all times. I totally get why old people treat their doctor visits as their only social outing for the week cause DAMN.
I’ll update this post more as my treatment goes on. Side effects are cumulative, so I’m expecting all these symptoms to get more severe as we go on.
As I mentioned above, after my first chemo treatment, I had a severe reaction caused by a infection in my small intestine, which would normally probably have gone un-noticed, but got progressively worse throughout the week as my white blood cell count was extremely low. I ended up in the hospital for five days, which delayed my next chemo treatment by a week. Because of this, my treatment plan has been altered to give me six chemo treatments up front, a month off, then surgery January 14th. This leaves me with two chemo treatments after surgery.
Of course, with cancer, everything is up in the air at all times! I’ll be sure to provide updates if this changes.
