Five weeks and three days ago, I was lying on an operating table in Houston, knocked out cold, as my doctor used a Da Vinci robot to laparoscopically remove ~10 cm of my sigmoid colon and rectum, sewed it back together, and temporarily rerouted my small intestine outside my body while my colon heals.

Since you’re wondering, no, they don’t go in “through the back,” ya nasty. Just sliced seven holes in my abdomen, five of them small, half-inch incisions where the instruments went in. One was a larger, ~3-inch incision that could pass for a C-section scar, where the guts got extracted, and the seventh, my stoma.

I felt fortunate to be having my surgery at such a trusted facility, and by an incredibly experienced and well regarded surgeon. But that didn’t stop an ounce of the crippling anxiety that I suffered leading up to it. I spent the months, weeks, days and moments leading up to that day in a state of constant panic, imagining how the surgery would affect me, as well as the other effects: mostly “the bag” (my ileostomy.)The thought of having it – let alone the horrifying stories I’d read and seen photos of – brought me to my knees in fear and dread.

I won’t lie: life since those dark days has been quite challenging. But I must say, I do feel like I’m past the “dark days” phase.

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It all started when we headed to Houston on January 9th. It was such a strange time, because one on hand, it felt like a fun little getaway for Rowan and me. We stayed in the cutest little Airbnb, ate delicious food, went to NASA, and enjoyed some Houston sights. But on the other hand, I had the two longest days of my life involving 12 different pre-op appointments.

One was a CT scan to check my progress. Then an MRI to...check my progress? Then another delightful waking sigmoidoscopy. Then a visit with the AYA (adolescent/young adult) center at MD Anderson where I met with two pediatric oncologists (a little weird as an adult), a nutritionist, an employment specialist, and a social worker. Finally, I also an appointment to get marked for my stoma. Then, I had pre-op consultations with anesthesia, my surgeon, and a blood draw for labs.

The stoma marking was something I had been fearing all along. Not the actual appointment...it’s literally just them writing on your belly with sharpie – but the impending doom I felt regarding the procedure was almost enough to send me over the edge. During the marking, they just had me wear my favorite pants (leggings, duh) and decided where my waistline was, then made an estimation about where the stoma would be comfortable from there. I came away with this:

I wore this patch until I went into surgery.

In the meantime, I was so delighted to receive so many messages of love and support! They made it all feel a little less terrifying.

That morning, I had to arrive at 5am. It was an efficient, yet terrifying process. I waited in a hospital room with my mom, Rowan, and my wonderful sister Lexa who came down for all the fun that is surgery! I was in good spirits but freaking out enough to cover everyone in the room. I distinctly remember a nurse telling me she was giving me something to relax, and that I probably wouldn’t even remember going into the room. Man, I wish that’d been true. I remember every grueling detail of the long, freezing ride to the insanely cold OR. It wasn’t like a movie OR...clean, slick, stainless steel, etc. It was complicated, filled with what looked like clutter, but was probably more like an array of carefully arranged life-saving tools. I will never ever forget the sight or the cold.

And just like that, I woke up again. I was awake for what felt like hours before finally opening my eyes, which were covered in lubricating goo. Immediately, I knew pain would be a problem. They gave me one dose of dilauded (a narcotic pain med), and I immediately asked for another, and another. I learned later that they were giving me the weakest possible dose of the stuff, which of course didn’t even touch the pain of such an intrusive surgery.

Over the next few days, this problem would persist as they tried giving me anti-inflammatory drugs like Celebrex and Lyrica in place of actual painkillers. I’m certain there’s a reason they do this, (presumably to keep you away from the hard stuff in the first place), but it seemed and still seems unthinkable that they would treat such obvious, intense pain with these kinds of drugs. Finally, on Day 3, after begging, sobbing and pleading with different medical people, the pain management team stepped up and simply gave me a reasonable dosing of the original medication. Thank god for them...I truly would have gone crazy in there if not for those angels.

The “Incident”

If we’re close, I’m sure you heard about this, but if not, it was...quite a story.

On Day 1, the night of surgery, I walked for the first time. It was scary, exhausting and painful. When I got back to the room, my nurse went to get me a pill for something. When she came back, she asked if I wanted to wash it down with water or cranberry juice. Since I’d only been allowed ice chips until that point, I was thrilled at the idea of cranberry juice and opted for that, figuring she’d grabbed me a cup of it while she was getting the pill.

She handed me the cup, I took a sip and immediately spit it back into the cup. It was not cranberry juice. It had a vaguely metallic flavor, but really didn’t taste distinctly of anything. As I set it down and started to tell her “this isn’t cranberry juice,” her face dropped.

I realized I’d been fed the contents of my own surgical drain as cranberry juice.

WHAAAAAAAA?!?

The drain was stitched to my side, and went all the way into where the incision in my colon was. The drain pulls fluid from around the incision site to the outside of my body. It contains blood, saline and ????. She’d emptied the drain into a drinking cup and left it on my eating table while we talked, and apparently completely forgot about this during the two minutes I was walking.

The nurse apologized to me, then apologized to my mom about 40 times, so I can only imagine what ol’ Shay Shay’s face looked like in that moment, but she was standing behind me so I never saw.

To add insult to injury, she was incredibly casual about the entire ordeal. She left the room and didn’t bother to check in, let alone reassure me that I wasn’t in any danger from drinking the fluid. My mom told her boss, the charge nurse, and she was even more cavalier about it all. She simply shrugged and said “yeah, that shouldn’t have happened.” I asked for a different nurse and she begrudgingly obliged.

I was shocked that at MD Anderson – one of the top cancer hospitals in the world – their reaction was flat out…chill? Honestly, I just wanted someone who knew what they were talking about to acknowledge how disgusting it was, but they were careful to play it cool at first.

Finally, several days later, I had a chance to tell my surgeon’s PA about what happened, and she was the first seemingly rational response I’d seen. Her eyes got huge and welled up with tears and her jaw dropped. It was satisfying in the pettiest way to see a medical professional openly share my shock. She took the story up the chain and a bunch of important people came to visit me, reassure me it was perfectly safe (I assumed this the whole time, but wasn’t certain), and I suppose see if I was going to try to sue them or something. I had no intentions of anything like this, but did get a kick out of how much damage control they ultimately employed.

It was all gross as hell, but funny in hindsight. Double check your juice, kids.

Healing

I was in the hospital from Monday through Saturday. On Saturday, they told me they’d be taking my drain out so that I could go home. “It only hurts a little,” the doc told me before pulling the tube out of the depths of my torso with nothing for pain. No surprise here, but uh….IT HURT A LOT. Like a LOT. I shouted and wailed and hated that doctor with a fiery passion for a few quick moments. Woof.

My mom, Rowan and I then moved to an Airbnb until the following Tuesday. The days in that Airbnb were absolutely awful. Immense pain, indescribable exhaustion, overwhelming nausea, all while figuring out how to live with a bag attached to my body at all times.

Finally Tuesday came, and I was so weak that I had to be wheelchaired around MD Anderson for my follow up appointments. My heart rate was 138, which has been a consistent problem since then. After a scare about that issue keeping me in the hospital, I was finally released and came home.

Being home was such a relief, and pup cuddle therapy has been massively helpful. My mom stayed with me for two weeks following surgery, and was truly my lifesaver on so many occasions.

My biggest struggle has been staying hydrated, which the ileostomy makes difficult, as well as intense fatigue after any activity whatsoever. While it’s gotten much better in the last two weeks or so, I was panting and out of breath after getting up to do anything at the beginning. Even standing up long enough for a quick shower was intensely exhausting and scary. My ileostomy was fine at first, albeit annoying, but has taken a turn for the complicated a few times since. I’ll talk more about that in a different post. Balancing these new challenges with attempting to stay active, eat actual food, and attempts to do normal human things was my full-time job most days.

Pathology Results

I received the results regarding my tumor one week after surgery. Surgery was successful in that they were able to take out the entire affected piece of my colon, along with 32 lymph nodes and surrounding tissue, all with clear margins. My pathology results showed that two of my lymph nodes had cancer in them, plus the nerves in the tissue surrounding my colon. This meant I had two “risk features” that we didn’t know about before surgery.

Because of these, my treatment planned changed a bit. While I was scheduled to have just two more chemo sessions before the final reversal surgery in April, now I’ll have six chemo treatments before reversal surgery in June. I’m extremely sad that the plan has changed by those two months, but know it also could have been a much scarier result.

Chemo starts back up next week.