June 28, 2020.
Northside Hospital Emergency Room
(written June 29)
The doctor comes in and sits by my bed. He can’t touch me because of the rules put in place for the Covid-19 pandemic, but I can tell he wants to. The doctor who was joking with me thirty minutes earlier looks at me and says, “I’m really sorry to have to tell you this, especially since you’re alone – stupid Covid – but we found a large mass on your colon when we did the CT scan. There were a few lesions on your liver, and well, you need to have your colonoscopy as soon as possible and contact your primary doctor tomorrow to start the ball rolling. This doesn’t look good.”
Alone. I was alone. Thinking ahead, I’ll probably do a lot of this alone because of Covid-19.
Brian came and picked me up and one of the top five hardest things I’ve ever said out loud came out of my mouth. “They found a big mass and I probably have cancer and now I’m going to throw up.”
Let’s rewind a few weeks to the beginning of June. Sorry for the TMI details, but you know… colons.
I also need to say that I am 44 years old. I do have a family history of colon cancer. My grandfather had it twice, dying at 78 years old from it. My doctor, Dr. P, has had me on target to have my first colonoscopy at 45 (so this coming December). This is important.
The first few days of June, I had some really red bowel movements. It was weird, but to be fair, we had eaten some really cheap pasta sauce and I thought it might have had a lot of red dye in it and that’s what was causing it. But then a day or two later, my bowel movements turned really dark black and tarry. That’s not normal, either.
Then they were back to normal doodoo brown. But I had incredible lower back pain. It didn’t feel like a pulled muscle, but I thought I’d probably just tweaked something or maybe even had kidney stones. But then came the stabbing pain to my gut. It didn’t let up.
On June 9, I called my primary care physician, Dr. P, and saw her. She immediately thought I had a bleeding ulcer and sent home with orders to make GI appointment for an upper endoscopy within the week. I got an appointment for 48 hours later. Between the 9th and 16th, the pain came and went. I had the endoscopy on the 16th and initial results were that things looked fine. So I waited.
The pain was more of a discomfort for me than anything at that point. My stomach was very distended and bloated and I just felt off. Wrong.
By Friday the 27th, though, the back pain and abdominal pain was back with a vengeance. It was unbearable. The next morning, my stool was maroon, really skinny, and concerning. I was nervous. But I carried on through the day. Went to the pool. Made dinner. Or tried to.
While I was making dinner, Brian looked at me and said, “finish what you’re doing and get your stuff. I’m taking you to the ER. Right now.”
So we went. I was poked and prodded. I was power-injected with contrast dye (In my hand IV. 0 stars. Do not recommend) and scanned. I was wrapped in a warm blanket and offered pain meds that I now wish I’d taken. I was told it was bad. And now here we are.
I’m going to stop here and give you a spoiler. There ends up being NO CANCER in my liver, only in my colon. The story has a happier ending than beginning. Keep reading.
The next few days were a blur.
The first thing I did on Monday (29th) morning was message my primary doctor, Dr. P, to tell her about the ER visit and cut/pasted the CT results for her. My phone rang about 10 minutes later. It was her, in shock, ready to talk through it all with me. She explained that it was a very large mass — 5cm x 8cm (2” x 3”) and the lesions on my liver were likely where it had spread. She threw out words like metastatic colon cancer, surgeon, oncologist, team of doctors, chemotherapy while giving me time to breathe and get my wits about me between topics.
She already had a list of names for me to contact for all of the specialists I would need. She told me this was going to move quickly and to clear my calendar.
My first call was to Dr. W, the surgeon, who had already spoken with Dr. P in the five minutes since I’d talked to her. He already had my information, a copy of the CT report, and had scheduled my appointment for that Wednesday. I cannot even tell you how grateful I was. I left a message for Dr. R, the oncologist, and got on the schedule for my colonoscopy with the GI doc the following Tuesday. Things were moving.
The next morning, I wrote in my journal:
I feel like there is something inside me and I can literally feel it trying to kill me. It feels like an alien. My body feels disconnected from my mind. I don’t feel well in general. I can’t put together thoughts. All I can think about is how I’m going to tell my son and stepdaughters and OMG my parents and sister. Sleep is in small chunks. And even then, it’s not good. My dreams are about ports and catheters and losing my hair. I’m petrified. I’m the most terrified I’ve ever been in my life. It’s not that I’m scared of dying. It’s that I’m not READY to die. I have a lot of things to do in this life and I’m not ready to give those dreams up.
On Wednesday, July 1, Brian and I met with Dr. W, a general surgeon. He had the most lovely bedside manner. He spoke firmly and simply and never for a second made us feel like he wasn’t the best choice to do my surgery — whatever it may end up being for. His biggest concern, obviously, was obstruction of my colon, but knew that if the spots on the liver were in fact cancerous, they may need to be treated before surgery. He laid out the options and advised that he and the oncologist needed more information before determining which would come first — chemo or surgery.
By the time we got home, I had a call from the oncologist scheduling my appointment with her, and scheduling an MRI on my liver and a PET scan. The next week was going to be incredibly busy. I was petrified.
We had to tell the kids. They had so many questions as to why I kept going to the doctor. When we returned from the surgeon’s appointment, we just asked them what they thought was going on. We assumed they would think I was pregnant because that’s just what they would do. Henry shrugged and Brianna blurted out “you have colon cancer.”
I said, “Yes. I have colon cancer.” They both just looked at us in disbelief. They had a few questions. I told them what all had been going on. Who I’d seen. What the loose plan was.
And then they started making poop jokes and named my mass, “Dumplin” which is fine and hilarious because we needed a code word for talking around Jamie.
Then I had to FaceTime my parents. They had been in Florida at appointments of their own, and there was no way I could tell them in person because I don’t know if they’ve been exposed to Covid. That was so hard. They answered the phone thinking it was Jamie and were all happy, but then saw my serious face. I told them enough and let them go to process it. Later, I talked to Mama and walked her through it a little more.
I called my sister. She was shocked, because of course she thought I was pregnant.
During all of this, the pain came and went. It was more frequent than before, but not constant. It seemed to be worse later in the day, so I knew to get things done in the mornings so I could rest in the afternoon. I realized, though, that I had probably not felt well for a while. Probably in three months. And knowing that I was, in fact, sick, allowed me to feel it all without feeling like I was imagining it all.
The next week (week of July 6), was so very busy and stressful.
First of all, I was incredibly traumatized by the colonoscopy prep I had to do on Monday/Tuesday. I’ve never tasted anything so terrible in my life. And the pain of pooping all night and morning is just more than my body needed. I had already lost about 13 pounds and felt myself shrinking by the hour.
But the colonoscopy was fine. Initial findings were that the tumor is large, almost obstructing the colon. She biopsied it and removed/biopsied another small polyp. I rested the next day but the pain was almost unbearable. It was constant and just bad.
Thursday afternoon, Brian dropped me off at Northside for my scans. The MRI was to focus in on my liver. The PET scan focused on everything from my eyes to my thighs. The scans didn’t suck. I was in and out without incident.
The next day, Friday, was my oncologist appointment. I was physically shaking when we walked from the car to her office. All week, I’d had nightmares of her sitting across from me, giving me 3 months to live or telling me it’s all over or just telling me to call hospice immediately. I had worried about telling the kids and my parents and figuring out how it all ends. Like I said, I was petrified and without answers and a plan, I hadn’t hit the “girl, fight” part of this journey.
Dr. R was lovely. She had the best news I could hope for. The cancer was contained to the colon and was the only place that lit up with activity. The liver showed that the lesions were just spots. Not cancer. I wasn’t going to die immediately!
She had already spoken with Dr. W and he had penciled me in for surgery on the 29th of July. That would be step 1: get the affected section out and Dumplin out and then evaluate to see what other treatments are needed.
This was REALLY good news. Everybody has thought that the cancer had spread, based on the CT, so that news was much-needed.
We went home with a plan. With an end date for the pain. So we nested, meaning we had the kids clean the house! They vacuumed and mopped and cleaned their rooms and I sat on the couch and enjoyed the view! Honestly, it gave them a way to burn up the energy and anxiety they’d probably been building up without knowing exactly what it was.
So here we were.
It had been five weeks since my first symptoms began. I had lost 13 pounds, was weak, was tired, was in so much pain, and was ready for something – anything – to change.