Most people under the age of 50 don’t have colorectal cancer on their short list of things to worry about. The median age at diagnosis for colon cancer is 68 for men and 72 for women; for rectal cancer, it is 63 for both sexes.
So how did Annie Schreiber, a 36-year-old manufacturing engineer living in Lafayette, Indiana, come to be diagnosed with stage 3 rectal cancer?
The short answer is that she and her doctor don’t know. (Extensive genetic testing offered no clues.) But she is part of a troubling trend, with the proportion of colorectal-cancer cases diagnosed in people under 50 increasing from 6 percent in 1990 to 11 percent in 2013.
Young adults coping with colorectal cancer face a unique set of challenges. Schreiber, for instance, wasn’t just focused on getting through treatment; her goal was to stay alive for the next 50 years.
This commitment brought her to the Cleveland Clinic in Ohio for a second opinion. There, surgeon Scott Steele told her she might be a candidate for an innovative, minimally invasive technique called transanal total mesorectal excision (TaTME). TaTME can speed recovery time and help eliminate the need for a permanent colostomy bag.
For Schreiber, considering the impact of cancer treatment on her kids — who were just 7, 5, and 2 — was part of every decision. Trying to preserve some normalcy for them without hiding the truth of the situation was a huge priority for her and her husband, Sven, even as they struggled to make tough decisions about her medical care.
Here, Schreiber talks to HealthCentral about having “the talk” with her children, enlisting friends and family to keep the kids busy, happy, and fed while she was undergoing surgery and chemotherapy, and bringing home Ollie the Ostomy Bear.
HealthCentral (HC): What was the most important decision you made as a parent in figuring out what was going to happen with your kids while you were dealing with surgery and chemo?
Annie: The bottom line was that we had to rely on an extensive
community of family and friends to do the things we couldn’t. Sven became my caregiver, which made it hard for him to care for the kids as well.
When I was going through chemo, there were weekends where we would have the treatment on Thursday, and I would be really sick all weekend. We ended up developing a system where the kids would go to a different aunt, uncle, or grandparent’s house for those weekends because it was a fun trip for them. What was hard was that I would rather have had them with me, but there’s a point where you realize that if your kids sit around your house and watch you look really ill, that’s scarier for them than saying, “Yup, you’re going to take a lot of trips this fall.”
We had to work that out. There was a period of time where my daughter Sylvia, who was almost three at that time, lived with my sister in Cincinnati for about six weeks. It made sense because she obviously required a lot of care. I couldn’t provide it. So she lived with my sister. She had a blast.
HC: How soon did you tell the kids that you were sick?
Annie: When I was first diagnosed, we realized within a couple of days that we needed to tell the kids what was going on. When you’re 36 and you’re in a community and you’re diagnosed with cancer, people show up in droves with food and cards and flowers. They say things out loud like, “We’re praying for you.” It’s very obvious to kids in your home that something is different.
So within the first two days, we had to sit down with the kids and tell them. The youngest one obviously had no idea what we were saying. My middle daughter, who had just started kindergarten, was very aware that something was really different. My son was less aware. He just is a different personality type and was like, “Hey, as long as I can play baseball, I don’t really care.”
HC: What did you tell them?
Annie: We just said, “Mommy has something called cancer. We are going to go to the doctors to work on getting better. Your grandma’s coming to take care of you more than she usually does. You might take some trips to Cincinnati that you weren’t expecting.” We really tried to keep it age-appropriate. The one thing I was thankful for was that when you’re in kindergarten and third grade, you haven’t had a lot of exposure to cancer. They hadn’t observed family members who had died from it. They didn’t have a preconceived notion of what it was.
HC: Did their teachers know what was going on?
Annie: We tried to communicate with their teachers really early in the process. Within days of the diagnosis, we sat down with the people that care for them at their daycare and at their school. It was like, “Here’s what’s happening.”
My concern was I’m not with them all day, so if they have a mental moment at school, or if some other kid comes in and inadvertently says something about someone dying from cancer, I don’t want the teacher not to know what’s going on.
HC: Did your kids have any questions for you about the surgery?
Annie: We spent a lot of time talking about the surgery before I had it. One of the biggest concerns I had was that after the surgery, I was going to have a temporary ileostomy. A stoma could look really scary to a kid. So on the internet I found this teddy bear called Ollie the Ostomy Bear that is actually for kids who are going to have an ostomy. I bought one, and we played with it a lot. I said, “Hey, this is sort of what it’s going to be like. Mommy’s going to have this stoma, and there will be a bag.”
Honestly, my son thought that was absolutely hilarious because third graders think poop is hilarious in general. They all thought this whole thing was a riot, in some sense. They were pretty intrigued by the idea of going in a bag.
HC: It’s amazing that you had so much help from family and friends, but having people in and out of your house constantly can take a lot of energy out of you too. How did you handle that?
Annie: We were very fortunate; we had people bring meals three nights a week for about six weeks. But you’re right, it does disrupt your daily rhythm. It changes your interactions and the kids’ interactions. It reduces stress because you’re not trying to figure out what to feed people for dinner, but it adds stress because you feel reliant on other people. For me, I felt like, how do I ever say thank you enough? How do you plan around normal, crazy kid activities? Plus, kids don’t necessarily want to eat the lasagna that somebody else brought. We would have boxes of macaroni and cheese that my husband would make them if the dinner that arrived did not work for them.
HC: A lot of people going through what you did would welcome help, but they just don’t know how to ask.
Annie: I talked directly to my mom and my sisters; my husband would talk to his siblings and parents. We have a church community so our priests were pretty instrumental in letting other people know what might be helpful. And then we used the CaringBridge website to keep everyone up to date, and that was another effective way of sharing what was going on and thanking people for their help.
A very dear co-worker set up the meal train. She used a website called TakeThemAMeal.com. You set a schedule, you look at it on your phone. That was pretty fantastic.