“Good morning! You have Stage Four colon cancer. Have a nice day!”
Well, that wasn’t exactly how I was told, but it’s what I heard from the surgical team gathered at the foot of my bed. They woke me up at 7am, and stood at my feet like a hungry gang of ghouls, looking for all the world like everyone’s nightmare.
“It was not what we were expecting,” she said.
Boy, she took the words right outta my mouth. This was not what I was expecting at all. It’s like everyone’s worst possible diagnosis, Stage Four Cancer. It’s not like I can console myself with, whew, I’m glad it’s not Stage Five! Stage four means spread and this doctor used the word, “aggressive,” to describe my cancer. Ai carumba, my cancer is fighting for agency in my belly, reaching and attaching itself all over the place like a demon octopus.
Peritoneal disease is what she called it. It develops in the peritoneum that lines the inside wall of my abdomen. Apart from the mass that was choking my colon and not letting food through, there was also spread to my lymph nodes as well as these little tumors sticking to the insides of my belly. At times I think I feel these peritoneum tumors clinging so close to the surface of my skin. It’s not painful, but feels like a twinge, as if saying, we’re here, we’re fear, get used to it.
Good thing it did not spread to my liver! Big whew there. When it gets to your liver, you’re sunk. Even I know that.
Finally I asked her, am I going to die? And like any good doctor, she demurred. They never want to give you a straight answer on issues they cannot control or predict. If I were a doctor I would have said, “Someday you will die, but it doesn’t have to be from the cancer.”
Instead, she said. “I don’t want you to have no hope,” before elaborating on the great chemo drugs they have these days and how they can fine-tune the drug cocktails to meet your specific needs. Oh, great, I’m so relieved – not.
Apparently the tumour on my colon and its offspring has be a going concern for a long time, she said. I mentioned how the abdominal paid I’d experienced about eight years before – which led to all kinds of tests like ultrasound, MRI, CT, X-ray, but not a colonoscopy – led them to find a cyst on my pancreas. I’ve had a gastroenterologist perform an endoscopy me every other year to check its expansion, which is not happening fast. How did he miss this?
Finally, her most burning question. “Have you passed any gas yet?”
Farting, I learned, is their obsession, being the biggest indicator that my system is working again.
“When you fart….”
“I’ll call the newpapers…
“That’s when we know the operation was successful…”
“So, no fart, no good.”
She asked if I’ve been walking, which she advised is was the best way to get my system flowing. I asked her about massage, like the kind you do on constipated babies. She nodded, saying, “It couldn’t hurt,” being hardly an endorsement. Couldn’t hurt? Damn me if it didn’t help later, a lot more than walking these hallways. My daughter sent links to posts on baby massage which hubby used to rub my tummy the right way, and it did help. I could feel movement. I also self massaged. It was like being pregnant, or that scene in Aliens (you know it). I told the team days later that they should be advising massage to patients like me. That would give visitors something to actually do instead of just sitting and offering comforting words.
Anyway, after the ghoul squad, er, surgical team left, I had myself a cry. Not something I do much anymore so I tried to keep it to myself. A hard call when you are sharing a room with three other surgical patients. I tried to weep softly but I couldn’t help knowing that they could hear me and might be reminded of their own diagnosis, how they responded to their bad news. The day I was admitted, the one lady, Rose, was getting her bad news from the surgeon himself – in the civilized middle of the day – and it sounded very serious, especially in Chinese. Her family was there to discuss it all, but I didn’t hear her crying.
Then, I had to call my husband, Bill, and when he arrived at 10am we called our daughter, Tara, in Washington, DC. She was upset but has kept positive from that moment on, bless her. Bill admitted that he’d had more of an idea of the seriousness of my condition. While he waited for me outside post-op, he spoke with a doctor who’d been on the surgical team who reviewed my case. He sat with Bill and relayed the details, but didn’t use the words, Stage Four. Yet the meaning was there. So when I was literally the last body out of post-surgery – which was so full when I arrived late to the party, in my haze it sounded like the floor of the stock exchange – he escorted me up to my room, lips zipped big time. I was so out of it so I sent him home, but the poor guy had to deal with this knowledge at home, all alone. Must have been hell.
Another person to call was my mother. She’s 99 and suffering from some dementia, but living in a nursing care home has been good for her. My sister lives nearby and with a smart phone, is the conduit to face time sessions with Mom. This time we just called her land line, cuz seeing me might have been too scary. We talked about the surgery, how well it went and all. The question among us was, what to tell her about the cancer. She’s very old, has cognitive problems, and tends to worry. So if we informed her of the cancer, she would take it hard and descend into a rabbit hole of worry and despair. After all, she already lost one daughter to cancer. This would be the most horrible deja fu for her. Dealing with another cancerous daughter might kill her. On the other hand, if we told her and she forgot, as she often does for recent news, it would make for awkward conversation later when I mention it and she says, “you have cancer? I didn’t know that.” Ultimately, we decided not to tell her at all about the cancer. But the way she keeps living onward and upward, my biggest fear is her outliving me.
The other thing I had to deal with in my own stage of grief was anger towards my doctors. I mean, back when she was sending me for all of those tests to find the source of my abdominal pain, was why didn’t my GP send me for a colonoscopy? Damn, even if they just found polyps I’d have been happy. And then, I go to a gastroenterologist, who does the damned tests, and even he does not suggest a colonoscopy. And I was about 50 at the time! What, what, what, doctors? Why didn’t you see the writing on the wall?
Like I said, Bill had been advocating a colonoscopy for years, but I wasn’t interested in pursuing it. I could have asked for one, but I didn’t. So, as they say, that’s on me.
I also remembered the rug I bought in 2008 of which the backing dissolved into a fine dust. I didn’t know what was going on and I used to lift the rug and vaccum that stuff up. The Coit guy said it was latex, and he shrugged as if that was ok. Now, I wondered what was contained in that backing material. I spoke to several labs to see if they could test samples of the dust, and the information they gave me sounded grave. That dust could have been rising up through the carpet with every step and stomp, exposing us to these chemicals. Years later, Bill is operated on for, first prostate, then breast cancer. Results being, whew! All good, no spread. We caught it early. Then I come along with this motherfucker of a cancer that made me loose a portion of my intestines and has spread itself like evil fairy dust to float around my belly. But not to the liver! Sometimes I joke to Bill that my colon cancer beats his prostrate and breast cancer, like a full house beats two of a kind.
A little over a year ago I wondered if I would lose him to cancer. Now I wonder if he will lose me.
Given all that, I have to wonder if I was the architect of my own demise.
So, there was all that to kick myself over as I lay in bed, day in day out, recovering from colon surgery.