Goodbye cancer, hello LARS

“Where are you in your treatment? Are you feeling better?” I’m on the phone with my insurance company just before lunchtime.

“The cancer is gone as far as we know,” I hedged. I don’t feel comfortable saying I’m cured. I don’t trust it. Am I feeling better?

I came upstairs after lunch to organize my room, clean out some of the clutter in preparation for returning to work remotely on Wednesday. I’ve been out on disability for about a year now since cancer treatment took over my life. When I got to my room, my eyes felt heavy, tired. It was just after one o’clock. Surely, I had time to close my eyes for a few, then attack the dust and accumulated piles of paperwork, cards, gifts, and cylinders of Queasy Drops. My pup Moxie was already laying on the bed looking sleepy, inviting me to join her.

I lay down next to her, pulled on the camel-colored throw blanket, and closed my eyes. Minutes later my body started feeling burningly warm from the inside out. Sweat formed on my forehead. Possibly a hot flash? I tossed off the blanket prompting Moxie to sit up and regard me with disgust for disturbing her. “Sorry,” I muttered as I reached down to pull my sweatshirt off over my head. I lied back down as did Mox.

Seconds later, I felt a subtle, tiny twinge in my bowels. Over the past few months, I’ve learned that this twinge is the equivalent of that flashing light and loud “ENHHH” sound you hear at an airport baggage carousel. Similarly, it means things are about to be dumped out in an ungraceful manner you have no control over. I sat up, and began to hurry to the bathroom, a mere 15-20 feet away. As the first “bag” was about to arrive, I froze in place, roughly the middle of my room, trying to regain control as my pelvic floor therapist instructed by focusing on my breathing. That. Did not. Work.

Over the course of the next 45 minutes, I went to the bathroom 7 times. 5 of the times I made it. Luckily, I’d opted for Depends, basically an adult diaper, this morning instead of underwear as I’ve been doing since Christmas Eve when I broke down and asked my mother to buy me some. My parents have a poop bucket outside. It’s where we put the dogs’ poop bags at the end of their walks. I can say from experience that sharing the poop bucket with your dog is the very definition of humility.

I never napped. I tried to read between sprints to the bathroom but kept getting distracted by thoughts of how I was going to possibly function at work Wednesday. I felt nauseous. My bowels stressed and tired.

The cancer is gone as far as we know. In its place, I have LARS, low anterior resection syndrome. I first learned about LARS from my pelvic floor therapist when I met with her 3 weeks after my surgery to takedown the ileostomy. She gave me a lovely 3-page printout that perfectly describes the shitastic hell my life has become.

My treatment plan for stage 3 rectal cancer had been 8 IV chemo treatments, 6 weeks of radiation, then 2 surgeries. The first surgery was to remove the formally diseased tissue and create a temporary ileostomy so my colon could rest and heal. The second surgery was to take down the ileostomy so that I could have normal bowel movements again and no longer need to wear a bag. Before the surgeries, my surgeon told me that afterward I may have an increased sense of urgency and some incontinence as some of the rectal tissue would be removed. She did not properly prepare me for LARS.

LARS can include fecal incontinence, clustering of bowel movements, extreme urgency, emptying difficulties, constipation, and rectal pain.

What’s clustering of bowel movements? Needing to go to the bathroom repeatedly. 10-15 times in a short period of time is not uncommon. For the first two month after surgery, I’d be running back and forth to the throne over the course of about an hour and a half. Now, I’m down to 30-45 minutes.

It totally fucks with your quality of life. I only leave the house in the morning before I’ve eaten. Simply eating anything is a possible trigger, even bland, boiled white rice. For some people, these symptoms lessen or resolve over time. For others, they persist indefinitely. Indefinitely. The joy of eating, of sharing a meal is gone for me right now. I’m a ticking time bomb. I miss wearing normal undies. I glance at them longingly in my dresser drawer.

The morning of my first surgery as I lay on the gurney in my johnny, all emptied out from the prep the day before, my surgeon popped in to say hello. She told me and my mother that the cancer was gone. We did not have to go through with surgery. We could adopt a wait-and-see approach. However, she still recommended moving forward. I was at one of the best hospitals in the nation for cancer treatment and with one of the world's best surgeons. My mother and I put our trust in her and said do it.

I wish she’d warned me about LARS. At least then I would’ve been prepared or could’ve made an educated decision. I recently joined a Facebook group for people living with LARS. I know I’m not alone in my experience.

My oncologist says the world of medicine isn’t in agreement over if surgery or wait-and-see is the best approach yet. He says give it time; I’m only about 3 months out from surgery. It’s early.

“Are you feeling any better?”

“No. I’m not.”