Lessons Learned While Coping With Stage 4 Colon Cancer at 40

I wake up to rocking. I catch my breath, rise and look around. I am on a boat, surrounded by water on all sides. I can see the dock of the port we just left behind me. “Hey! Hey! I didn’t mean to get on! Can we please go back? I need to get off!” But the boat keeps moving. I realize that I am trapped.

Just three months ago, I was sitting at home with what I thought was a nasty stomach bug. At the time, the word “cancer” was about as far from my brain as humanly possible. Instead, I sat on the couch (feeling guilty about missing work) and watched Outlander through severe abdominal pain. Pain which eventually turned into frequent, severe vomiting.

I’m not going to provide you all of the details (and you also don’t want to hear them), but I found my way to an ER and got admitted. I felt terrible, but figured they would solve it and I would be able to get back to life as usual. They did a CT scan the next day. My husband brought the kids to visit, and the nurses said the on-call doctor wanted to speak with me on the phone. The news floored me. They had found a mass in my colon that was too big to be benign, and it would require surgery to remove it.

As shocking as this was, I didn’t fall apart. This was all still very surreal. The surgeon who visited me the next day was like a “folksy” version of an older Dick Van Dyke. His tone was optimistic and confident. He told me that there would most likely be chemo afterward to prevent recurrence. OK. This is scary, but I’ve got this. I’m young! And the doctor smiles a lot. This is going to suck, but I’ve got this. Two weeks ago I was canoeing with my family and friends. Tomorrow I am getting surgery. A couple of weeks from now I will be back at work. A couple of months from now, I will be done with cancer.

A wave hits the boat and knocks me over.

Lesson #1 about cancer. You can’t count on doctors to explain everything to you. Especially when the news is bad. There had been a spot on my liver, but it was probably a hemangioma. The surgeon told me that he had a good look around when he had me open. He bragged about how he had cleared all of the margins, and how he had found a tiny nodule in the peritoneum (abdominal cavity) but had removed it. He was sure that the spot on my liver was a hemangioma. What I heard was, “Everything is clear! On to some mop-up chemo then I should be fine!”

When my biopsy report was handed to me, the surgeon ran his finger over some of the paragraphs. “It’s a long report, but you want to pay attention to the sections on this page,” he said. There was no alarm in his voice, no indication that this report was dire. I nodded. Honestly, at the time I was more frustrated by being in the hospital and entirely focused on getting out of there.

I find my bearings and start to rise, but another wave hits. I lurch over the rails and the wind is knocked out of my body.

Alone in my house, and surrounded by quiet, I started googling my biopsy report. I focused on the technical details associated with the colon tumor. Eleven of 18 lymph nodes positive means Stage IIIC, which has a 53% 5-year survival rate. Wait. That can’t be true. There was nothing said or indicated to me when this report was handed to me that indicated that I had a 50/50 shot of living. I must be misunderstanding this.

For the first time, something cracked and now the panic was seeping in. Even if I was wrong and my staging was slightly better, I was still looking at maybe a 70% shot at best. Hey, those are good odds…right? Great, here are dice. I’ll let you roll them on your life and then you can tell me how positive you feel.

I can’t breathe. My head is spinning. How the fuck did I get here again?

Lesson #2 about cancer. You don’t find out about everything right away. You wait for an appointment. You wait for a scan. It’s possible to be three months into a diagnosis and still not know the full extent of your initial diagnosis.

I didn’t see an oncologist until two weeks after leaving the hospital, and a full month after my diagnosis. Yes, you read that right. My oncologist came into the room in a rush. He assumed that someone had explained my biopsy report. “We can possibly cure some stage three and four cancers,” he said. Wait, what? Well, I guess that confirms stage three, but why is he talking about stage four? “Well, of course there was that spot on your liver that needs to be taken a look at,” he said. You mean the hemangioma? “Well, I know that’s what he put in his report, but we’ll need to do a PET Scan to be sure,” he said.

I puke down the sides of the rails.

Going into the PET I had a sense of foreboding. There was something about the oncologist’s demeanor. He didn’t believe that the liver spot was a hemangioma. I found out later after getting the hospital CT reports that it had indicated that there were more masses found which were noted to be “suspicious for carcinoma.”

My husband and I spent the weekend after the scan exchanging looks of fear. We parked the car in the parking lot, listening to a feed of the band Chvrches playing a music festival…“I know that there is a lot of bad shit going on in the world right now. So everybody — at the count of three — scream the word “fuck” at the top of your lungs! 1, 2, 3…” We both screamed, but it wasn’t nearly as cathartic as we wanted it to be.

The boat is still rocking. When is this going to end? Can this really be happening? I want off now. Nobody is listening.

“The PET did show activity in the liver.” Six masses, including my hemangioma, lit up like a Christmas tree. I couldn’t even get to the car. I sat on a bench outside the office, stared into the distance and repeated flatly over and over. What do I do now? How do I just go home? Go to the store? How do I even breathe? Of course, I had read the statistics on stage four colon cancer. They were really bad. Really, really bad.

The boat continues it’s steady, plodding thrust forward. I look behind me. We’ve traveled too far now to see signs of the land that I left. I run to the front. Is that land? Or are my eyes just tricking me. My head says “no,” but my heart still clings to hope.

Lesson #3 about cancer.

You pass many islands on this journey. Hope and despair are only as far as the next scan, the next doctor’s visit. Uncertainty is your new normal. You have to find ways to cope or you will go “insane.”

I processed it by writing about it, and then posting what I had read to Facebook. I know that sounds strange, but writing about it was the only way I could process…to continue breathing…to make your arms and limbs go through the motions of coming home to kids and the minutia of daily routine.

My thoughts are racing, formless and so are my feelings. Writing them out forced structure. Other than family, it was the one thing I found to grasp onto as a means of dealing with this.

I also searched for hope online. And got suckered in. Hope started to buoy me despite myself.

There were so many stories of people making it many years with stage four. Perhaps I can beat this after all! Don’t get me wrong, I was still very scared but that thread of hope still crept in anyway. I had seen a surgeon locally who thought that I was resectable, but first he wanted an MRI.

And then there was the matter of that nodule in the peritoneum. Remember that? “Well, we aren’t certain that’s all there was. The first surgery was an urgent situation and he might not have gotten to see it all,” I was told.

I’m holding on tight, waiting for the ocean to settle down; for signs of hope on the horizon. Nothing settles. The waves keep hitting like sucker punches. The cumulative effect grinds away at me until I fall back down again.

The next month brought several more setbacks:

Genomic testing confirmed that I was resistant to certain medications that could help down the line.

Second opinion oncologist tells me that I should see someone to help me deal with my own mortality.

Second opinion surgeon is the first to explain MRI. Six spots are now 10-11.

One stop surgical solution is no longer an option. We return to the initial surgeon who ordered it and he confirms and backtracks on all of his previous confidence about a one-stop surgical solution. Words heard from both surgeons were that “chances of long term survival are very small,” and “I was able to get similar cases an extra two years. I did have one last eight, but that was an exception.”

Third opinion oncologist said, “Considering the peritoneal involvement and your number of positive lymph nodes, data doesn’t support a cure.”

God damn it. Stop! You win, OK? I get it now. It’s finally gotten through to me. I’m never going back again, and the shore ahead? It’s not one that I want to reach. I am not getting out of this alive. So now what?

I do chemo. I get an MRI on my abdomen. I meet with some surgeons at the Cleveland Clinic. I consider heading out to MSK. I do whatever the hell I can to stay here as long as I can.

And I write about it. I write, to keep me sane. To cement the sadness and fear into structure. To spin despair into hope. To find meaning in all of this. To figure out how to live when doctors tell you that you are dying.