Amy was told her symptoms were all in her head. As a mom of two, she began to feel “off” and tired and got some bloodwork to assess her health. After her bloodwork returned clean, her doctor attributed her symptoms to anxiety.

She started seeing a counselor and prioritized her mental health but her symptoms only got worse. After finding blood in her stool, she demanded a colonoscopy.

After the procedure, her doctor admitted he was wrong and Amy was diagnosed with 3B colorectal cancer.

She voices how advocating for health saved her life, the importance of knowing your genetics, and how she’s working to break the stigma of colorectal cancer.

She shares her experience undergoing stomach surgery, learning to live with an ostomy bag, and finding her “new normal” after cancer.

Pre-diagnosis

Initial symptoms

About a year before my diagnosis, I really was not feeling myself — rundown, irritable, [and] not feeling good. I chalked it up to being a mom.

I saw my primary care physician and had some blood work done. Everything came back standard. My symptoms weren’t really directly [associated] with colon cancer at that time.

I sought mental health treatment, [talked] to a counselor to figure out if this was something going on in my head. I know that’s a common theme among women who’ve been diagnosed with cancer. We tend to be given this list of other reasons that it could be and then we run down that list.

My more acute symptoms came closer to my diagnosis and that entailed really intense abdominal cramping. I had a total change in my bathroom habits.

I was [losing] weight and I was not intending to. I’m a smaller person. I was looking very thin, even for me.

I went from being slow-moving in the bathroom [to] things running through me. I could tell something was up that way.

She referred me to the GI who saw me, again as it goes, two and a half weeks later so now we’re in October. [I] had to kind of fight him for that colonoscopy and basically tell him, “I don’t care if I have to write the check. I don’t care what it takes. I need this colonoscopy to know what’s going on inside of me.”

It was a little intense because I feel like I could feel him saying it’s so unlikely that this is colon cancer, especially colon cancer that’s causing you to bleed. But the alarms in my body and my mind were going off.

I remember there was a point where it was like, “Either put me on the schedule or just call your security and they can escort me out because I need this colonoscopy.” He was like, “Whoa, whoa, whoa, Miss. It’s okay. I will give you the colonoscopy.”

He was happy to do it for me. It scares me sometimes to think that had I just accepted the answer, had I not been the hard head that I am, this might have not happened in the time frame that this all happened.

I needed that colonoscopy so I could get into treatment so that I was ready for surgery because the world shifted after all of this happened.

I found myself having to really pull that backbone out and say, “Nope, I need the colonoscopy. I don’t care how unglamorous, I don’t care that I have to do prep. I need it.”

Diagnosis of Stage 3B Rectal Cancer

Once they did the colonoscopy, to that doctor’s credit, he did come and face me to say, “No, I was wrong. You have cancer.” He didn’t use the word advanced cancer. He just said it’s not new. It’s been there.

Come to find out that it probably wasn’t. It was likely about two years. Because of the Lynch component, I think it propagates faster. It’s one of those things [of] him not knowing as much about Lynch as probably a doctor who is in GI now coming through. I’m sure now he handles it much differently and is educated, but it is hard to be that kind of person who shifts over the understanding.

It was an intense conversation, but I felt like, “I don’t even care what you think of me, Doctor. I’m going to say I need this. If I’m wrong, great. That’s the beauty of this test. We can know that.”

I was very drowsy from my colonoscopy, but he had to come out, grab my hand, and say, “Amy, it is cancer. You were right.” I know that was probably a watershed moment for him in his career, too, because he did tell me I was one of the only patients he’s ever diagnosed that was under 50 or 60.

I’ve talked to other people in the colorectal world about this since then. Sometimes, it’s a wonder if you’re not getting people diagnosed because you’re not providing the screening to them that they really should be getting. How many people slip through the cracks?

I know every person who shares their story says, “Be your own advocate,” and then when they push back, go further. Push more.

The GI doctor referred me to their person; I went a whole different way. But the oncologist I found, he’s amazing.

[He] and his team right away said, “This is Lynch syndrome. We want you to have the blood test, but you likely have Lynch syndrome. That’s why you have it so young and that’s why it’s so advanced.

“Here’s what we’re going to do if this test comes back positive. Here’s the plan.”

They never told me what the other plan would have been. It was like, “We’ll talk about it if it doesn’t come back positive,” but it did come back positive.

My tumor itself is a Lynch-related tumor, but it’s not MSI high (high microsatellite instability). 

Every person’s treatment plan is so individualized. But knowing that ahead of time, we went with a treatment plan that made sense for Lynch syndrome, which included a pretty drastic surgery.

That all happened within a week. Two weeks after getting diagnosed, I went in to get tattooed on my hips and started daily radiation.

We’re well into it and need to act quickly. They moved really fast to get me into treatments right away.

I had just turned 34 in May and this was the end of 2019. I felt really young.  I meet people who were in their 20s when they were diagnosed. Sometimes it feels like people didn’t even get a chance to really start their life before they were dealing with this alternative life.

But well beyond Lynch syndrome or colon cancer, understanding your genetic makeup is so pivotal to your health care. We’ve heard about it all over with BRCA and Lynch syndrome is just another one of them.

We just need to get people in tune with their family history. Ask questions. I’m sad a lot of my family members are gone, so I can’t ask them about people in the past.

Treatment of Stage 3B rectal cancer

I tend to think, Gosh, my alarm bells went off just in time to get me in for that colonoscopy so that I could start my process.

My oncologist referred to it as a marathon so we did it in three legs. The first leg was [the] initial radiation and chemo. Six weeks [and] took some time off.

Surgery was the second leg, which is a bear. I had a 9.5-hour surgery. I had what’s called total proctocolectomy with APR reconstruction. They took everything below my small intestine and rebuilt my bottom with muscle and tissue from my abdomen. I was cut open on my abdomen. I had an ileostomy placed [and] live with an ostomy bag now.

At the same time, because of this genetic component [of] Lynch syndrome, I chose to have an elective hysterectomy. Had two kids, really fortunate to get to be a mom. Love my kids and I love children.

The idea of my life going farther, who knows what would have happened? I could not have that risk. I wanted every risk out of me. That was just the way I felt [at] that time. I said, “Take it all, doc, literally everything.”

They removed [part] of my tailbone because of where it was. They were worried about it. I said, “Don’t need it. Don’t need it.” That was tough.

After surgery, I did have a nine-week break then I went in for IV chemo, which was just another part of the marathon. I did six treatments and slowly started to ease back into trying to be a normal person or the person that I used to be.

Living life with an ostomy bag

[An] ostomy bag is worn on your abdomen. Mine is connected to my small intestine so my small intestine comes out of my abdomen. There’s a tiny little piece of it called a stoma; it’s just another word for opening.

You can have a stoma for your bladder, you can have a stoma for your colon, or you can have a stoma for your small intestine. Mine is [for the] small intestine so it’s referred to as ileostomy.

Different ostomies have different schedules, but I tend to change my bag every third morning. In between that, my bag just stays on. I empty it when it’s full.

My life as far as using the bathroom is altered but the only part that’s really impacted by that is the part that happens when I close the door and no one’s in there with me.

[As] life does, it takes a really long time for it to re-settle down, but it does settle back down.

There [are] other parts of me that feel like I was damaged during this. My mind is still trying to grasp: how does somebody go through this and keep going?

Part of my success in it is truly just seeing other people do it. Other people have lived this. I’m not the first person. I’m not the first person with an ostomy. We just got to keep changing how we talk about this stuff, making it less taboo.

On the other side of it, after cancer is over or after treatment is over, is the fact that this is [a] different kind of fight. Keep going and use that shifted perspective for positive things.

Shifted perspective brings me down sometimes because I see so many people walking around not taking advantage of their health or taking advantage of [the] knowledge that’s available to them.

I also feel a lot more self-assured. I feel like I can do things that I didn’t think I could do before. I’m more independent as a person. I’m more confident. I’m more willing to look at myself and say, “All right. This is the body you have now.”

One of [the] first things I wrote that really started to change the tide of how I was sharing my story was, “Are you just going to lay here and cry about this all the time or are you going to get up and live?” Got to get up and live.

When I heard, ostomy felt to me worse than cancer. I just was like, “You’ve got to be kidding me. My life is going to be over. I’m going to be a monster. I don’t even want this.” I just melted down.

Then I could see people living positively with an ostomy and see women my age having one, too. It feels like you hear that, you start looking at it, all the brochures are old people. It doesn’t feel like a 34-year-old woman should have this.

I slowly got my mind wrapped around it. I tell people now, “At the time, the ostomy to me seemed like it would be the worst part of this whole thing. Now, the easiest part of everything I’ve been through is to live with an ostomy.” That impacts me so much less in my day-to-day life than the mental hardship of going through cancer, cancer treatment, [and] scans post-cancer.

When people come to me and say, “I’m going to have an ostomy bag,” I’m like, “Well, take a deep breath because this is a lot to digest.” It did take me time.

Any strong, brave, out-there person handling their ostomy well had those same feelings, too. They had a moment of, “I don’t know if I can even do this.”

Why I’m out here being a loudmouth is that I live my life with an ostomy. I am a mom with [an] ostomy. I chase my kids the same. I go to concerts. I hang out with my friends. I travel. I go on airplanes. I just did the Disney cruise with my two girls. I do it all with the ostomy. It’s not the way I saw my life when I was a little girl, but it’s not the worst thing.