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SurvivorshipColorectal Cancer

No Evidence of Disease, or NED: How Is It Going for You?

Joe Bullock finally heard the 3 little letters he’d been waiting to hear since his colorectal cancer diagnosis: NED. But he wasn’t expecting the uncertainty that shortly followed, feeling stuck in the in-between phase “after cancer.”
August 2022 Vol 8 No 4
Joe Bullock
Durham, North Carolina
Colon cancer survivor

The winters here in North Carolina can be trivial at best, which can be a mixed bag of winter weather, depending on what part of the state you live in. My buddy J.J. Singleton, who is a stage IV colorectal cancer–slaying champion, lives in the western region of the state in the small town of Canton. He can see much more of a wintery and snowy mix than I do in the eastern part of the state.

I grew up in the city of Durham, which is known for its Tobacco Road sports rivalry, Durham Bulls baseball, and is referred to as “The City of Medicine.” The funny thing is that in this part of the state, snow and ice can shut down the region for days. This happened in the last week of January 2019, right before my first scheduled blood work and CT scans follow-up to see if the 6 months of chemotherapy I had just endured successfully stopped the cancer from spreading to other parts of my body.

No Evidence of Disease

Since being diagnosed with stage IIIB colorectal cancer, I knew there was a chance that the cancer could metastasize. Although I was told that there was very little chance for this to happen, we know that cancer can be a bit of a tricky foe. I wanted to see the CT scan results that showed that my body was “unremarkable,” and there was “no evidence of disease” or “NED” in my body.

The snow and ice that week had shut down Duke Cancer Center, my cancer center, for a couple of days. I had been receiving cancer treatment there for the past 10 months, and I was ready to get this chapter of my life behind me.

When I arrived for my scheduled follow-up appointments that day, I could tell that the center was extra busy. My patient navigator had already told me that they were playing catch-up after being closed for a couple of days. My oncologist was double booked that day, and I was warned to expect delays, but promised that I would get all my scheduled tests done.

After hearing this from the navigator, I overheard the person next to me complaining of the 2-hour delay to get a CT scan, and that the person wanted to reschedule the appointment. I was determined not to leave without hearing the 3 letters—NED.

After about a 3-hour delay, sitting on pins and needles and having 2 cups of venti-size Starbucks coffee, my oncologist walked into the room, with a smile on his face. He said, “Remember what I told you 8 months ago that we were going to kill it? The cancer is gone, and there is No Evidence of Disease.” I finally heard those 3 little letters—NED—that every patient with cancer wants to hear.

After-Cancer Let Down?

He seemed surprised that I was not happier to hear the news. I asked him what do I do next. He said, “Go live your life, be happy, and I will see you in 3 months.” I thanked him but felt a bit shell-shocked as I walked out of his office. Is that really all the information he was giving me? No further direction from my medical team? At least when I was in treatment, the plan was “to be after cancer.” But the fact is that no one tells you how to live your life after cancer.

Now what? Do I just sit around and wait for the cancer to return? Because I had stage IIIB colorectal cancer, the probability for that was high. My eyes started to well up with tears as I walked out to the hallway, and I sat on a bench near the exit of the cancer center. Now that I had heard those 3 letters, I began to realize what was happening to me, and I became overwhelmed.

My wife had been trying to call me for a couple of hours to find out the news. When I finally called her back, I could barely get the words out. I just said: “It’s gone.” She asked: “Do you feel better now?” I said yes, and then told her to get the kids together so we would go to celebrate.

Frankly, I was terrified, but this wasn’t about me. It was more about celebrating the people who helped get me to this point, and getting our family life back together. So much focus had been on my cancer in the past few months, that it was time to let the ones I love know that I was okay. In many ways, my cancer journey was just beginning, and major changes were about to happen in my life as a result.

I spent the next 3 months mourning the death of my cancer, till the next follow-up appointment. It was as if something had died inside me, and I was left with a hole that needed to be filled. My wife looked at me one day and said, “I think cancer has taken your passion for life away from you, and it has completely stolen your joy.”

Accepting Survivorship

At that moment I didn’t like that she said that, but she was right. I decided to return to therapy for a couple of months to find a new path in my survivorship. My therapist started to help me find ways to accept my survivorship.

Accepting your survivorship can be as difficult as learning you have cancer. You are given a plan to defeat cancer, or at least you hope to, but no one gives you a plan for survivorship. All you are left with are months and years of surveillance. I think doctors believe that if patients with cancer hear that they are “NED,” or cancer-free, it should be enough to sustain them. But it wasn’t enough for me. I made a decision that even if cancer was done with me, I wasn’t done with cancer. I wanted to help other people in the fight against cancer.

Supporting Others

I began to reconnect with a few cancer survivors in my local cancer support group. My therapist suggested that I continue to go to the support group, even though I believed at the time that I was cancer-free. She thought that having me in the group would bring support to others who were fighting the same battle.

I looked for continued ways to support others in the fight with cancer, and to be an advocate for those who were just diagnosed with cancer. I remembered that a couple of my friends that I had met through my support group were going to their treatment alone. I quickly learned that it did not matter what type of cancer a person had, because the emotional turmoil was the same for every patient. So, I offered to go with them and give them company and much-needed support.

I wasn’t sure if I could emotionally handle it after having finished treatment myself just a few months earlier. I remember walking into the cancer center to visit them, and the PTSD of the cancer treatments I had been through came rushing back over me. I sat on the same bench I had cried on months ago after hearing that I had NED. I had to compose myself, because I didn’t want to break down in front of the people in the treatment room.

A New Passion

Before I was diagnosed with cancer, I had been a caregiver for my Dad, who had prostate cancer. He had been in hospice care at the end of his life, so I had learned how to mask my emotions now. I just wanted to make sure that I could be the support my friends needed at that moment. I left that day feeling that I had found a new passion on the other side of cancer.

One of the first things I did to help spread awareness was join the Get Your Rear in Gear race in Raleigh, North Carolina, that year. That race is sponsored yearly by the Colon Cancer Coalition. I thought, “It’s time to get my rear in gear and to start living again.” I remember opening my race packet to receive my “survivor shirt” and race bib the night before. I began to well up in tears looking at it, knowing that no matter what the future holds for me, I was a survivor.

I went to the race alone, because I didn’t know many colorectal cancer survivors at that point in my personal journey. I wasn’t the fastest walker that day, and I was probably one of the last to finish the race. The treatments I had in the last few months had taken a toll on my body. I remember wanting to quit halfway through, but I was determined to finish. A few people saw that I was a survivor and cheered me on to the end. Another group of racers were walking in honor of a fellow survivor, which inspired me to finish. I told myself that I would walk for those who couldn’t, and for those who are just trying to survive this disease.

Another great way I had learned to support another cancer survivor was sending handwritten cards in the mail. I do this through the Chemo Angels (www.chemoangels.com) organization, and I signed up to send a card once a week to a patient going through chemo treatments. It was an easy way to give back and support someone going through the fight. It is a great way to offer support, but without getting too emotionally involved with the patient.

My wife noticed how much happier I was as a result of the work I had been involved in as an advocate. Being an advocate in the cancer community had given me a new purpose, and had truly become my passion. At this point in my journey, I had already lost a few friends to cancer. I wanted to continue to spread awareness in their memory.

The Other Side of Cancer

Becoming NED is like receiving a gift you just don’t know how to unwrap, or maybe it’s like a gift from a friend you didn’t expect to receive. I think we go through a number of phases in the “NED process.” As I said, the first thing I did was mourn the death of my cancer. One day I was a patient with cancer, then the next day I wasn’t. I know it sounds crazy, but I actually missed the days I was in treatment, and I mourned its loss. I would spend a couple of months grieving the cancer so much, that I fell back into depression and had to return to therapy. In therapy, I started to accept that I actually survived cancer.

There are different ways to approach being told you have NED after a cancer diagnosis. You have to do what is best for you to be able to heal mentally from cancer. This may mean just walking away for a while to figure out who or what you want to be in the cancer space.

Many cancer survivors struggle with survivor guilt, which can be very overwhelming. Ultimately, you have to decide how you are going to live your best life on the other side of cancer.

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Last modified: September 27, 2022

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