In today’s Cancer Interview podcast, Joe Bullock shares his story with host Bruce
Morton, about how he survived Stage 3b colorectal cancer, a form of colon cancer, after
first undergoing a colonoscopy due to irritable bowel syndrome which led to his
diagnosis, followed by chemotherapy treatments including Oxyplatin and Xeloda. Joe
now works with the Man Up to Cancer support group for men facing a cancer diagnosis.
Joe Bullock had experienced symptoms of irritable bowel syndrome in the past. As
unpleasant as it was, he was familiar with having blood in his stool and addressed it with
over-the-counter remedies. However, while dealing with the death of his parents and his
reliance on over-the-counter medications, he was slow to seek medical attention. When
he did, his doctor thought the problem was due to hemorrhoids. Because he was not yet
50 years, he never thought he might have colon cancer; but when he turned 50, Joe’s
doctor said it was time for a colonoscopy, as did his wife, who is a registered nurse.
A colonoscopy revealed an 8cm tumor in his colon. Joe was relieved to learn the location
of his tumor was such that the tumor could be removed without his needing a ostomy
bag. Joe needed a procedure in which the tumor would be removed and the colon
reattached. However, when that surgery took place, 40 lymph nodes were removed, and
three of them were cancerous. That’s when Joe Bullock was diagnosed with Stage 3B
colorectal cancer, and he was told he require a chemotherapy regimen. The regimen
would include two medications, oxyplatin and xeloda.
Joe Bullock’s wife, thanks to her expertise, was an outstanding source of support on the
clinical side; but she had a tough time supporting the emotional side of Joe’s battle, Her
challenges and his challenges dealing with chemotherapy made Joe depressed, but he
soldiered on, following instructions and doing what he needed to do regarding the
regimen. Nonetheless, at the recommendation of his oncologist, Joe started seeing a
therapist.
Joe says the toughest part of his oxyplatin regimen took place in the first ten days after
his oxyplatin dosage. He felt was like pins and needles in throat, which limited what he
could eat. In terms of beverages, he could not drink anything cold or anything that was
room temperature. It had to be warm coffee or warm tea. Joe said oxyplatin “ruined my
tastebuds.”
As for the xeloda, it was ingested in pill form. Joe said it resulted in severe fatigue and
cognitive issues, both commonly associated with chemotherapy.
Eventually, Joe was thrilled to learn he had been declared “NED,” or No Evidence of
Disease. With this news, Joe said he and his wife to removed doctor visits and chemo
from their day-to-day lives and that for the first time in years, they could plan a vacation.
However, did have to make periodic follow up visits, and he was surprised to find he
missed the treatment regimen. He says when undergoing treatment, he felt like he was
being proactive about his cancer; but without treatment, he worried about a reoccurance
of cancer and was doing nothing about it.
Joe is still NED, but there are aspects of his health he has learned to live with. He still
has frozen foot syndrome and feels tingling in his fingers. Joe used to run, but cannot do
that anymore.
Joe Bullock is from Durham, North Carolina. He enjoys grilling and owning three pit
bulls. In terms of work, he is the Chief Operating Officer of Man Up To Cancer, a
support group that stays away from the clinical side, but prioritizes helping men with the
often-overlooked mental health of a cancer journey. ‘Man Up’ has support groups that
meet in-person and virtually, it has men’s retreats and offers numerous other services via
its website, https://www.manuptocancer.org . Joe Bullock says a man diagnosed with
cancer needs to be mentally tough, and Man Up To Cancer can help a man do that.
Additional Resources:
Support Groups:
Man Up To Cancer; https://www.manuptocancer.org
Colon Town: https://www.colontown.org
Transcription:
Bruce Morton: This is the Cancer Interviews podcast, and I’m your host, Bruce Morton. At age 50, for our guest, a routine colonoscopy led to a diagnosis of Stage 3B colorectal cancer. A tumor was removed, his colon reattached, and after an aggressive chemotherapy regimen, Joe Bullock of Durham, North Carolina, achieved survivorship. He now devotes a great deal of time and energy to helping others diagnosed with cancer. Now it’s time to hear his story, and Joe, welcome to Cancer Interviews.
Joe Bullock: Thank you, Bruce, it’s great to be with you this evening.
BM: Let’s start out by getting to know more about you and your life away from cancer. Joe, tell us about where you are from, what you do for work and what you like to do for fun.
JB: I am from Durham, North Carolina. For work, I am the COO of Man Up To Cancer. I serve in that position, running the organization, and I work for Colon Town, and I work for it as an onboarding specialist. I talk and speak with cancer patients every day on a regular basis and help them with their journeys. For fun, I have three rambunctious pit bulls that keep me pretty active. I sometimes feel like I am running a doggie daycare, and I love gardening and grilling on my deck.
BM: For just about everyone on a cancer journey, there was just fine or pretty close to just fine, and then something took a turn for the worse, which got their attention, and that led to a diagnosis of cancer. For you, when did that chain of events begin, and how?
JB: I started having what I thought was irritable bowel syndrome but didn’t think I needed to go to the emergency room. I would typically work it out with some over-the-counter remedy. I started having slight blood in my stool. Even when I told my doctor prior to when I was diagnosed, we thought it was hemorrhoids. I was under 50 at the time I was diagnosed in 2018. The screening age at the time was 50, and I was not yet 50 years old when I started having these symptoms. I didn’t know anything about colorectal cancer at that point because anyone that I knew that I had colorectal cancer, the average age was 68. So, that wasn’t even a thought in my mind. It wasn’t until I explained to my general practitioner these symptoms again that when I turned 50, he said it was time for me to get a colonoscopy. When I went for that screening, they found 8cm tumor in my colon.
BM: Hindsight is always 20/20, but looking back now, do you feel you got this checked out as quickly as you should have?
JB: No. The screening age today is 45, so if I had been given that opportunity, I may not have been Stage Three, I might have been Stage One, and not had to have gone through the treatments I went through.
BM: Now it is time for you to go in for the colonoscopy, and the colonoscopy revealed what?
JB: I had an 8cm tumor, and its location was what my oncologist called the “sweet spot,” because it was right in that corner of my colon, where it was fairly easy to access. They basically had to go in, remove the tumor, reconnect the colon, but during that process, in the surgery, they removed 40 lymph nodes along that path. Three of those lymph nodes turned out to be cancerous, so that put me at Stage 3. Because it had already metastasized to the lymph nodes, I would have to undergo chemotherapy. It was an aggressive regimen with oxyplatin for three hours, then I would go through two weeks of xeloda pills. I would get a week off, then I would start that routine all over again. I did that for eight rounds over six months.
BM: We’re confident you’ll be able to learn some tips and tools to help you through your cancer journey, but first we would like to invite you to please give us a ‘like,’ leave a comment or review below and share this story with your friends. Kindly click on the Subscribe button below and click on the bell icon. That way you will be notified the next time we release an interview. And if you or a loved one are facing a cancer diagnosis, please click on the link in the Description and Show Notes below to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”
Let’s talk about when you were first diagnosed. There are a bunch of variables tied to a cancer diagnosis. Given your variables, once you got this horrific news, how did you handle it?
JB: I knew something was wrong for a very long time. I actually put off my colonoscopy for about eight months for some personal reasons. I knew in my gut something was wrong. It wasn’t until my wife, who is an RN at the hospital where I was treated, looked at me after I told her my symptoms and told me I needed to get a colonoscopy. That’s when I went and got it. I felt terrible because I knew what we were walking into in dealing with a cancer diagnosis. It really shut down our family for almost a year, as I went through treatment. My wife and I were in our fifties. We had already been talking about plans for the next couple years, renovations on the house, going on some vacations we hadn’t gone on, and realizing I was going on a cancer diagnosis really shut everything down. We didn’t know the financial burden it was going to put on us, so we had to set a lot aside. When I was diagnosed, being that my wife was an RN and a medical professional, I guess I would say I was a very good patient. I did what I was told. I showed up for treatments, I followed all the regimens. I listened to my wife. She handled all the clinical side of my treatment for me. I jokingly say that being a patient was like showing up for my wedding. I just did what I was told that day. It probably wasn’t until my second round of chemo that it really hit me. I have never been a depressed person. I have always been a happy-go-lucky guy, and my oncologist noted one day as I was getting ready to go in for treatment, and he said something had changed with me. He said I looked like a sad, broken guy and that he was worried about me, and how my disposition would impact treatment. He knew that I wasn’t eating well. I was struggling going through the treatment. That’s when he asked me if he could bring in a therapist to sit with me, and just talk. I really started to understand as we started talking through things that this is what was causing my depression was the mental health side of cancer. That’s what I really had to work on. I could handle the treatment side. I could what they telling me to do, but I didn’t know how to deal with the emotional trauma that I had never faced before. So, that was probably the hardest thing for me.
BM: You bring up something I want to ask you about. I don’t know if this is the right word, but you had the ‘luxury’ of a spouse who was also a health care professional. who had a level of expertise, so it sounds like your wife was there for you where the clinical piece was concerned. How was your wife in terms of the emotional side?
JB: When the therapist came in and sat with me, my wife was with me, and I told therapist we were okay. Then my wife looked at me and said she needed me to listen to the therapist because my wife couldn’t do both, the clinical and the emotional. She couldn’t be my only sounding board. I got with the therapist as a way of supporting my wife as a caregiver. It underscored to me that it was ‘us’ going through this. I have seen many marriages in the cancer space get torn apart by a diagnosis because the couples just can’t handle it. So, I am very fortunate that she pushed in that direction, toward the therapist.
BM: So, would you say as a couple, the two of you going together as a team, evolved from Day One of your journey, to a bit farther down the line, in terms of how you two dealt with the journey?
JB: Yes, I would definitely say that. It took time to find the balance, even now in my efficacy work. It is like I have a separate life, but I have to include her in it. It is all about finding that balance.
BM: Let’s talk about your chemo regimen. You mentioned the medications you were on, it sounded like a two-pronged approach. There is nothing pleasant about chemo. To varying degrees, it adversely affects every patient, but in terms of your experience and with those medications, what was the toughest part of your chemo experience?
JB: In the beginning, the hardest part with the oxyplatin was the days afterward. So, one of the side effects for oxyplatin, is like naprapathy, this pins and needles sensation in my throat. For ten days after getting oxyplatin, I could not drink anything cold or in some cases, even room temperature. It had to be warm coffee, warm tea. It ruined my taste buds. I was a Diet Coke fan before cancer, but the oxyplatin ruined my taste buds, so for even through my chemo regimen and for a few months after, Diet Coke just tasted like swamp water. It didn’t taste like it used to, and that happened with a lot of things I ate. That happened with the oxyplatin and the xeloda, and this was happening in August, in the North Carolina heat and all I wanted was a cold Diet Coke and I couldn’t have that. The test we had was that we would go to Wendy’s, my son and I, and we would get a frosty, and he would let me have a bit of it to see if I could withstand the cold temperature. For the first ten days after oxyplatin, I couldn’t have that frosty, but the eleventh day, I could; but day one through ten, I couldn’t go near it. It definitely affected the central nervous system, in your taste buds and how you reacted to certain things. On the xeloda side of it, it was in pill form. I would take 2000mg in the morning, which is four pills and 2000mg at night. I would take eight altogether each day for two weeks straight and that caused a lot of fatigue. That was one of the side effects. I would pick my kids up at school and I would fall asleep in the car. Fortunately, a teacher knew what was going on and would knock on my window to wake me up. It just caused a lot of exhaustion.
BM: How about cognitive issues, because we hear a lot of chemo patients are affected in that way?
JB: I definitely had the chemo fog. I would just forget things. And another side effect I had was my hands. I wouldn’t be able to hold something. I remember looking at my hands and thinking I was looking at my grandmother’s hands and how thin they were as she got older. I couldn’t pick things up very well. I remember dropping a coffee cup one day because I just lost control of it in the ten days after the oxyplatin.
BM: Joe, I am guessing there was a point in which you sensed you were turning the corner, that you were moving toward survivorship. What do you recall about that stretch?
JB: So, I had to do eight rounds of chemotherapy and my oncologist treated it like a football game and we would take it into quarters. I remember finishing the fourth round, and my oncologist said, “We’re at halftime.” Or he would talk about heading into the third quarter or the fourth quarter. A took on that mindset, taking it one bite at a time, and I tried not to look ahead, which was really helpful.
BM: You were eventually declared ‘NED,’ No Evidence of Disease.’ It was like you crossed the goal line. How exciting was that?
JB: It was tough, because I remember hearing that from my oncologist. It had snowed in Durham, and the Duke Cancer Center had been closed for a couple of days because of the snow. So, I went in an they told me I had would have to wait a while because they were backed up. I told them I wasn’t leaving until they told me I‘m dead. I think I was there, like seven hours that day. Then when I found out, I was bewildered. That’s because even after you find out you’re NED, you know your journey isn’t over. With colorectal cancer, you still have five years of follow-up appointments, five years of CT scans. In some cases, for someone who is NED, the journey is just beginning. I had stopped seeing my therapist near the end because I was feeling really good about things, but I was going to a support group at the Cancer Center, I remember after going to one of those support groups and after I was becoming NED, the therapist pulled me aside. She said she was excited about my being NED, but that I would need to call her in a couple months. because I was going to hit a wall and a lot of stuff will come back and hit me, and that’s exactly what happened. I mean, I started worrying about reoccurances, I started wondering what was going to happen, there is all this risk of this happening, which almost sent me back into a depression again. Believe it or not, I missed the treatment because I felt when I was in treatment mode, I was doing something about it; but now I felt like I was waiting around for the cancer to return. So, I had to face those kinds of mental demons because of my cancer. That was a harsh reality to accept.
BM: okay, but you got past that and let’s fast-forward to the here and now. If you could classify your health, pre-diagnosis, at 100 percent, how close to 100 percent are you today. If there is anything today you cannot do that you could do, pre-diagnosis, what would those things be?
JB: I am pretty much 100 percent. Actually, about 95 percent. I still have naprapathy. I am not able to run anymore. I still have some nerve damage. Luckily, it’s not painful. I deal with frozen foot syndrome. I still have slight tingling in my fingers, but that’s the reality of going through chemo, and there are things I can do to go get around that. It’s funny because I was released from my oncologist in January 2023 because I had made it to five years. That was I excited about. I was grateful to have it done as far as the patient side of it. I remember getting in the car that day and rolling the window down and turning the music up and letting everything just blow through me because it was like I was just breathing air again. I got home and my wife said she couldn’t believe we didn’t have to schedule anything relating to my cancer anymore. We can plan a vacation, and we don’t have to think about my next CT scan, we don’t have to do any of that. So, that is a great feeling, and it brings a great deal of excitement to our lives.
BM: Joe, you are part of a group called Man Up To Cancer. If you would, tell us about its inception, what it does and what it can do for a man diagnosed with cancer.
JB: Trevor Maxwell started Man Up To Cancer in the fall of 2019. We had met through another group I had mentioned earlier, https://www.colontown.org, and he messaged me in December of that year and he said he wanted to start this Facebook group. He was in the middle of writing a book about the mental health side of cancer and what men go through, in a sense of ‘manning up’ in a different way, in the sense of having an open heart and having a warrior spirit. You are going to need your mental toughness to get through this; but you are also going to need mental support and that’s what we aim to change for men, and that is to offer them that space. We give them that safe, men’s only space to have those conversations. Trevor invited me to come on board as leader of the Facebook group, so that was my original position. Then last year, we formed a non-profit to do grassroots fundraising to support all of our programs. We have 50 chapter groups across the world. Everything we do is about the mental health aspect of a cancer journey. We don’t talk about treatment. Our web address is https://www.manuptocancer.org.
BM: Joe, we are going to wrap up now, but we want to thank you for a story that is informative and inspirational. Thanks for being with us on Cancer Interviews.
JB: Thank you, Bruce, for having me.
BM: And we will conclude, we want to remind you that if you or a loved one are on a cancer journey, you are not alone. There are individuals like Joe Bullock, organizations like Man Up To Cancer, that are there to help. So, until next time, we’ll see you on down the road.
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