Q&A: Brooks Bell talks about going public with cancer, lessons, hoping to help others

RALEIGH — Brooks Bell, the 38-year-old founder and CEO of the brand consulting firm that bears her name, last week made the stunning announcement that she is stepping away from her role after being diagnosed with colon cancer.

Soon after she invited WRAL TechWire’s Chantal Allam into her Raleigh home for a candid chat about what this means for her, both personally and professionally. In a candid, two-part interview, Bell, talks about her decision to go public, why it’s important to raise colonoscopy awareness amongst millennials, and how difficult it is to relinquish control of the business that she founded at 23, among other things.

Her husband, Jesse Lipson, founder of ShareFile and Real Magic, also joined the conversation later to share his perspective on the journey that they are sharing together.

Thanks so much for meeting with us. First off, how are you feeling?

I’m feeling great. My energy is pretty much back. I had my surgery three weeks ago on February 13. It went smoothly. I had appropriate pain from a major surgery for the next few days afterwards. But after maybe three or four days, I’ve just been resting and doing a lot of research on colon cancer and colonoscopies and just really understanding this disease. And it’s been nice to have down time. Having worked so hard for 15 years, it’s nice to go from 90 mph to a full stop.

You didn’t have to go public. Why did you?

It wasn’t even a question. Going public was a great way to have something good come out of this, because I could prevent others from having this happen to them. I think a lot of people feel this way. When something really bad happens to them, you want something good to come out of it. You don’t want it to be just this horrible thing and accept a bunch of pity.

For me, if I had gotten a colonoscopy a few years earlier, I would have prevented this. Since then, I’ve learned about all these other young people who didn’t catch it as early as I did, and have Stage 4. People with Stage 4 are truly fighting for their lives. It’s just eye-opening how big of a deal this is. I really want to take all the energy and good vibes that are coming my way and try to leverage those and create an energy and awareness for people. I’m shocked that I got this. Other people are shocked that I got this. How do we use this emotion towards something productive that can save other people’s lives?

Brooks Bell speaking at the Gear Your Rear in Gear – Raleigh 5K Walk/Run fundraiser at Wake Med Soccer Park this weekend.

As part of raising awareness, you walked and appeared as a guest speaker at the Gear Your Rear in Gear – Raleigh 5K Walk/Run fundraiser at Wake Med Soccer Park this weekend. Why was it so important for you to take part so soon after your surgery?

I had a stroke when I was 24, and I remember going back to work two weeks afterwards. While I was far from productive at first, challenging myself mentally made a big difference in the speed of my recovery. This time, I believed challenging myself physically would have the same benefit. It’s important to strive for something.

When they asked me to speak as well, I was delighted and honored to not just be able to participate, but to also have a platform. I tried to get a few people to join my team, and the response was overwhelming. I had over 100 people walk with me. I had already thought about building this campaign about driving awareness for colonoscopies, and this race was a great opportunity to create more awareness. We wore tee shirts, saying “50 Colonoscopies under 50”.

Yes, tell us more about your campaign. How did you come up with the idea?

I was inspired by all of the awards that the Triangle Business Journal is always hosting – “40 under 40”, or “50 Fastest Growing Companies.” And the best way to shine light on something is to celebrate people who are doing it. I thought it would be a great opportunity to celebrate people who are getting colonoscopies and invite them to share their story and their experience so that it normalizes it as a procedure and helps other younger people consider whether it’s right for them. We already have 25 people on the list. My goal with this campaign is just to spark a conversation amongst younger people that a colonoscopy is a good idea.

Talk us through what it’s like to get a colonoscopy. How bad was it?

Oh, it was super easy. It was quite pleasant. I think what people are afraid of is the fast, and then there’s the prep, and then there’s the hassle. The fast – I was afraid that I would be just famished and energy plummeting and jittery. Actually, I got to drink all these sugary drinks — Sprite and Gatorade. Stuff that I usually stay away from. I ended up with a major sugar high by the time I got home from work. I was not hungry and just bouncing off the walls from all the sugar. It was not what I had expected. Then I switched to some warm, savory broths. Before I knew it, the fast was done. Then you begin the prep, and you’ve got to clean out your entire system fast.

That sounds scary. You imagine something really explosive and horrible, but it was so far from that. It was a two-hour process, and it was gentle and calm and smooth. Then it was done, and then I had a good night of sleep and had another two-hour thing in the morning. It was easy. Then I hopped on the scale and I’d loss a few pounds and it was cool to know what my baseline was on a totally empty stomach. I did a little bit of work from home and then went into the procedure and it was fine. I went to sleep. I was telling a joke when they put me under and finished the joke when they woke me up. I had no idea that I had even been asleep. Everything was great until, of course, the diagnosis. The procedure itself was easy.

You weren’t completely new to it all. Your husband, Jesse Lipson, founder of ShareFile and Real Magic, had already been having regular colonoscopies, right?

Yes, he has family history and when you have family history, your risk is a lot higher. He has been getting colonoscopies every year or so for the last decade. They often find a polyp or two and remove it. I’m used to being a chaperone, and I think that was really helpful in my own advocacy for myself because I knew that a colonoscopy was an option, once I had symptoms. I don’t think it would have occurred to me if I hadn’t been in this role of chaperone for so many years. Jess had told me many times that colon cancer is deadly. But it never really occurred to me that I was at risk too.

Are women less likely to get it?

There’s no difference between men and women. Women and men are at the same risk. The incidence of colon cancer has gone up by 50 percent under the age of 50 since 1994.

And why is that?

They don’t know. I have my own thoughts. When you think about it, the internet was founded in 1994 – when colon cancer started rising – and it has led to a lot more high pressured, fast-paced lives as millennials. There is also high alcohol consumption and higher sedentary lifestyles, which are two of the correlated causes of cancer. There’s just a lot more pressure. I wonder if stress is up across the board for this generation, and of course there is toxicity in our environment everywhere, and especially red meat and processed foods. But they haven’t had the funding to do a large-scale study to understand what’s going on with younger generations specifically.

Brooks Bell.

Talk us through your diagnosis. When did you first start to get symptoms?

I was on a business trip in November, and one morning I discovered that I had a blood in my stool and immediately Googled it, because it’s terrifying. And the first link I clicked on said, do not ignore blood in your stool. That is a serious symptom. I called a physician later that day, and she said, No, it’s nothing. It’s probably internal hemorrhoids. These are very common. Just wait it out. So it did go away, but then it came back a few days afterwards.

At that point, I was really paying attention. It just didn’t feel quite right. I was at home for the holidays and it was the first time I was going to be home for four straight weeks. It was a great time to take care of all those low-priority tasks, including routine health checkups. So I decided to go see another doctor and get a second opinion. I went and she said the same thing: it’s internal hemmorhoids. Wait it out. I did, and it still didn’t go away. So I thought, this still doesn’t feel right, and I couldn’t get the Google search out of my mind. So I cold called a gastroentrologist to schedule an appointment. When I showed up, they said the appointment might not be covered by insurance because I wasn’t referred. I said, that’s okay; I still need to do this.

Fortunately, when I got in front of the doctor, she was the first one to take me seriously. She said, your symptoms have been going on for way too long. We scheduled a colonoscopy four days later. That was New Year’s Eve. I was supposed to go to a party, and but there is nothing like fear of cancer to kill the party mood. Four days later, I had my colonoscopy and I woke up, and they found a tumor that was almost certainly cancerous.

What was your reaction?

The next few days were the hardest because what really matters is whether or not it’s Stage 4. Anything less than Stage 4 has a very different outcome. We needed to wait and get a CT scan to see if it was Stage 4. Waiting those days was the hardest part. I finally got the CT scan, and it was almost euphoric relief when they didn’t find anything on the CT scan. It was clean.

What does Stage 4 mean?

It means that it’s spread, mostly likely to your liver or to your lungs. If it’s in your liver or your lungs, you have a 12-14 percent chance of surviving it. It’s a very different outcome.

What happened next?

We scheduled surgery at Duke Cancer Center to have the tumor removed, and we needed to wait until they had a chance to look closely at the tumor itself in order to determine exactly how far advanced it was, and what the best course of treatment would be.

Around this time, you and Jesse were getting ready to celebrate your 20th anniversary. Tell us about that.

Before my surgery, Jes and I celebrated our anniversary in New Zealand. New Zealand has been on our bucket list, and at the time, things were still somewhat uncertain about my future. It was important that we make time for this experience before we began treatment. It was a really wonderful trip, and we are so grateful we did it. And then, after the surgery we got the good news: it’s Stage 3 A, which means it is not a big tumor but it is in the lymph nodes. For whatever reason, this particular category has a positive prognosis, and has basically a 90 percent survival rate. I’ll be doing chemotherapy. It’s in the lymph system. We need to make sure that I snuff that out, and at that point it will be a wait and see if it returns. Fortunately, it usually doesn’t.

When do you start chemotherapy? And how are you handling that?

I start in April. It’s weird. As I had learned more and more what it means to have colon cancer, and cancer in general, just getting an understanding of the science, stats and treatments makes a big difference in how stressed out you are. So much of the panic is caused fear, and that is caused by not understanding. What you understand what you are up against, it’s a lot easier to move forward. Honestly, I feel pretty grateful. Some of the nice things about having some risk to your life is that it really helps you get centered and be present in every day and start savoring things around you. I now have a great incentive to live a healthier life and do things that make me happy. And take a step back and enjoy things. I’m really enjoying it. And having a great time.