Introduction

I’m an igniter. I have started several businesses in my career.

I went to North Carolina State University and majored in civil engineering and pre-med. I wanted to be a doctor at some point.

I’m an avid cyclist. I love to work out.

I’m a go-getter. I can’t sit still. I like to initiate things and see things come to fruition.

I’ve always been that person that didn’t need someone else to motivate me. I’ve been highly self-motivated [throughout] my 51 years on this planet. I just love learning new things.

I play the organ, the bass guitar, [and] the saxophone. I love music. I sing [and] write music.

Anything that I put my mind to, I try to do the best that I can do.

Pre-diagnosis

Initial symptoms

I’m an avid cyclist. We ride a lot of miles. At that point, I was doing about 350 miles a week. Being in an endurance sport, you learn [about] your body.

I have this reputation on the team of being pretty fast and pretty fit. I wasn’t giving the guys the business like I normally would be doing. It was just a lot of effort. Something wasn’t right.

They couldn’t really tell any difference because I just won’t stop. I give everything I have, but my body was not responding the same. If I wanted to go an extra five miles an hour, it was a struggle. Coming out the curb or the corner trying to chase somebody down was a struggle.

Then I started noticing that my leg was swelling. I lift weights a lot. I do spin class a lot. I said, “Maybe I hurt my back.” My chiropractor worked on it and she said, “This isn’t getting better. Your leg is swelling.” We thought it was sciatica nerve, but it wasn’t. She said, “Maybe you need to go see your internal specialist.”

I went to the internal specialist. We were thinking maybe I had kidney stones or something bacterial was causing me to experience this. When she checked me out, she said, “You look healthy. There’s nothing wrong. Your blood looks fine. But how about we just do a CAT scan?”

That’s when we had that “Oh my!” moment.

I was 49 going into 50 years old that year. I thought I was going to have this great 50th celebration. I was sitting in a chemo chair on my birthday.

Diagnosis

My blood wasn’t giving them anything. They would run my blood and it would come back good. No signs of lymphoma.

I look at it as if it was the perfect storm. If your body was going to operate in its most perfect form, my lymph nodes did exactly what they were supposed to do.

My cancer was so prevalent that my doctor thought I might have had it for years and didn’t even know it. It had completely taken over my stomach, my lung, everywhere.

I could see the fright in my doctor’s eyes when he saw [the scan], but he could see the tenacity in my eyes. When he told me what it was, [he went] over options.

I had to make a conscious decision. What are you going to do about it? There [wasn’t] any time for tears. I didn’t cry at all. I sat there and made a decision. I looked him in the face and said, “Okay, game on. Let’s go.”

I cried later but [at] that moment, I made a decision. I had to let the cancer in my body know: I’m not giving you victory in my mind this quickly.

I created this alternate reality. I created this warrior mentality. “You coming for me? I’m going to come for you.” No matter what my doctor said, I already told myself that [I’m] going to beat this. I’m going to do whatever I have to do to overcome this.

Drawing boundaries

I said that I will not let family and friends imprint on me. We’re going through enough as is. We know our odds. We know the percentages. We know what we’re facing. Sometimes, [because of] their mere concern for you and all the emotions they bring to the situation, loved ones will compound your situation.

You have to put them at arm’s length. You can’t take on what they’re saying because sometimes, out of love, they will give you bad information or will remind you, “Only 1% of people live from this?” They don’t mean any harm but their words will hurt you.

This is what I did. Love your loved ones, but guard yourself. At the end of the day, it’s a one-on-one thing. You’re battling that cancer. You’re battling everything that comes with it. They’re not doing that with you. They will stand with you, but they’re not here. That’s where your battle is.

The crying was symbolic of accepting what was happening. It’s real. We can create all the alter egos we want, but accept that it’s real. The crying just released that in me.

I felt free. A freeness came over me. It was a calm and peace that came over me. I felt like it was necessary.

Keeping physically active during treatment

[During] certain rounds of my chemo, I was walking five miles a day every day and doing my spin trainer 30 minutes a day.

Finally, Dr. Boles said, “Tony, you got to pick one. You can’t keep doing both.” I already made a determination that I wasn’t going to let those chemicals run roughshod in my body and not do something about it.

I’m out there walking when I was feeling sick, made my other body systems kick in, and it made me feel better than just sitting there. Doing pushups gave me something to look forward to. It made me feel defiant. The more I became defiant, the more I start seeing victories.

Instead of losing weight, I was gaining weight. I was gaining muscle when I shouldn’t have been gaining muscle.

When I look sick, it affected everybody around me. They didn’t know how to handle me. They were very cautious because it was just so unnerving. Not only did I have cancer, which was evoking something in them, I now physically looked the part.

When I first got diagnosed, I got down to 167 pounds. I went to my doctor after chemo and one of my PAs said, “Tony, you’re losing too much weight.”

Side effects of R-CHOP chemotherapy

R-CHOP was funny. I’m just an enigma. Because I was doing those things, I’m just breaking all the rules.

I was going every 21 days. After my first R-CHOP session, Dr. Boles and the team would say “How are you feeling? You feel any chills?” No. “Sweats?” No. “Your hair? Well, obviously, your hair is not falling out.” Mm-mm. “You feel nauseous?” Nope.

I had no symptoms that first week. I really believe they didn’t believe me because he dragged me back in there right after the next R-CHOP session to test me. I didn’t feel anything. I was saying, “Oh, this is going to be easy.”

[The] second week, [I] got really sick. I was going into this pattern. [The] first week, I was good. [The] second week, didn’t feel so good. [The] third week, the light came on and I felt like I was back. That was my process all the way throughout like clockwork.

My body is responding pretty well. I had the Red Devil. I’m doing fine.

Hair loss from chemotherapy

Hair loss kicked in on my third session. I went to the bathroom, cut my hair, and it just start coming out in globs. It went just like that.

Your hair’s like your badge of honor. You take honor in that until you have that recessive gene and you lose it and can do nothing about it. But that hadn’t hit me so I still had mine.

You’re not going to get through this with no [side effects] at all and hair was one of them. To lose that, I felt like this is real. Cancer is still fighting. The chemo is doing what it’s supposed to do. It just was a reality check for me.

I would cover my head a lot. I didn’t like the bald look so I don’t have a lot of pictures from that. I don’t want to be reminded of that. I started wearing beanies and look more stylish, but there was no hair.

Post-chemotherapy PET/CT scan

At the end of R-CHOP, Dr. Boles gave me a couple of months off. When I started feeling well, I jumped right back on the bike again. I was feeling good about myself. I thought, “Maybe we won.”

When I had that PET scan, he brought me back in and said, “Well…” I knew. He said, “We’ve got a couple of concerning areas.” I said, “Maybe they’re dead cells, just not giving up.” He said, “No, I don’t think so.”

At that point, I said, “Okay. I got to re-engage.” Dealing with cancer is a battle of engaging and re-engaging. For that brief month or two, I disengaged. But when he told me I had some trouble spots, I had to re-engage all over.

CAR T-cell therapy

Early on, I had mentioned to Dr. Boles, “What about CAR T?” I had done a lot of research. He said, “That’s not available at the time,” cause it wasn’t available to my specific type so it wasn’t an option.

In December 2021, CAR T came online for my specific type. When I got to Dr. Grover, she said, “Tony, I have great news. You qualify for it,” so that’s what pushed us into CAR T.

» MORE: What is CAR T-cell Therapy?

The appeal of CAR T-cell therapy

I knew my body needs a break from chemo. That was not going to be an option.

I was very interested in CAR T from a scientific standpoint — taking your cells and modifying them to specifically attack cancer. That’s pretty ingenious.

Cancer is a very smart cell itself. It can change and evolve. Initially, your T cells will jump on it and eradicate it, but cancer will evolve and say, “We’re going to trick you. We’re going to change our makeup so you don’t recognize us,” so the T cells just come cruising right on by it and cancer can still proliferate. I thought it was interesting how they would reprogram ourselves to recognize the tip [of] the cancer.

I said, “This is if insurance would pay for it.” That’s the main thing. They said yes and that’s how we did CAR T. No other options. I wanted to do that one.

Holistic care in conjunction with cancer treatment

I found a holistic doctor so I was doing holistic medicine in conjunction with chemo. I was researching holistic doctors in other countries that may not have the scientific approach as developed countries. Some of them rely on Mother Nature who provides us with everything that we need, too. I started looking at plants and herbs that can help me detox.

As quickly as you can detox chemo and chemicals out [of] your body, the more readily your body will be if you have to do it again. I was looking at different options to detox myself outside of traditional medicine.

You don’t want to just keep adding chemicals to your body. They give us chemo then they give us these other pills to help with this and that. But sometimes, Mother Nature gives you that and your body is readily absorbing that versus the tablet.

I would tell them what I’m taking because some of that may affect chemo. Chemo is strong and designed to do what it does. Sometimes you can alter how it works by taking some of these things.

Don’t be a renegade. Do these things in conjunction. Make sure you let them know what you’re taking and then they can tell you. Some things he would say, “I don’t recommend that,” then he will tell me why and it would make sense. Seek other opinions but also validate that versus what you’re already doing. You got to have that balance.

When I would throw all these things at him and he didn’t dismiss me, that’s when I knew he was the doctor for me. Your physician and your team matter. You have to feel good about them. If you don’t feel good about them, find someone that you do. They affect everything about your situation.

If you don’t feel loved or feel like they care, then with the treatment that they’re giving you, you’re not going to have confidence in that. Make sure you feel good about them.

They took me through the back entrances of the hospital to get to the CAR T center because you had to be away from people. You had no immune system at that point.

I always would pass the chapel going up. [On] the second day, I went in and broke down crying. I said, “Lord, I can’t do this.” It drained me so bad I felt like I couldn’t do anymore.

I sat in that chapel [for] about 5-10 minutes. Then I got up, dried my tears, sat in that chair, and had my second day. I did the same thing [on] the third day.

I stayed at the SECU House and started my rehab and recovery. The people there were great. They cook for you, you meet other cancer patients in [the] same situation, and you realize that there [are] a lot of people in worse situations than you.

Nurses call me Zeus at the hospital. At the SECU House, I saw people fighting for their life and I’m walking around like I’m going to a training camp somewhere.

Typically, you have to be there [for] 30 days depending on how you respond and you have to go to the hospital every day for labs. [In] my first seven days, I had no symptoms. I was feeling great.

Post-treatment scan

I finished the CAR T in December 2022 and had another PET scan [in] January 2023.

We found some cells, but I told Dr. Grover the same thing. I said, “Maybe they’re dead.” She was the same way, “I don’t think so.”

I was very discouraged because I put a lot of faith in the process. But all hope wasn’t lost because we were unsure.

The spot that I still had resonating was in the original area. It was very difficult to get to so she wanted to do a biopsy. They went through my hip to get to it. They took 16 to 18 samples and they were decent samples that we could tell what’s what.

I’m telling myself, “When we have this next PET scan, it’s going to reinforce what we already thought. Those cells are going to be dead.” That’s what I’m saying to myself.

Now, what if it’s still there, right? But it’s the same what-if that we had before. We never did targeted radiation, stem cell transplant is still on the table… A whole lot of stuff is on the table because of how my body responded. My organs are super healthy so they feel confident that I could withstand something if we had to.

I ask my body to respond every time I get knocked down. I think that’s just my faith. That’s the promise that I believe, that I hold on to.

A lot of times, it [doesn’t] have to make sense to a lot of people. It just has to make sense to you because that’s what’s keeping you going. If you’re putting your faith in that, that’s what’s keeping you going. I don’t care what nobody else thinks. Eliminate the background noise.

Make the most of your hospital stay

I made a lot of friends in the hospital. Try to make the most out of it. The nurses and I would have fun. I used to tease them all the time.

You would think, I’m here for my care. They’re giving me chemo. They’re taking care of me. Then they ask you if you’re hungry and they give you some cookies. Like, “What? Cookies? Where [are] the oranges and apples?” They give you all this stuff that you shouldn’t be eating.

I had a good time. I bonded with my team doing R-CHOP. I am thankful for every nurse because they are doing God’s work. It goes unappreciated [and] devalued sometimes, but they work long hours and they legitimately care for you.

That is your frontline. You’re not going to see your oncologist in there with you. You’re going to see the nurse and you’re going to see them all the way through the end. Don’t be nasty and bad to your nurses. Love them. Encourage them.

I would do little things for them just to give them a ray of cheer because they’re taking care of me and they’re breathing life into my situation. They’re making sure I’m taken care of and I appreciate that. You got to appreciate that.

Have faith

Sometimes, you just take [the] faith that you have. Faith is something that you really can’t see, so you’ve got to put it in something. Either you’re going to believe in a doctor or you’re going to rely on your faith in God. I chose to rely on that and held on to that

As a result, every time I get low [and] feel like I can’t make it, I just recall that. I’m hoping and believing in the outcome that I want to see happen.

I encourage everybody [to] grab faith and believe because that’s where the battle starts. It starts right [in the mind]. Physically, you can do all you can, but if you lose the battle [in the mind from] the very beginning, you’re fighting an uphill battle. Now you’re battling your belief that you can even be healed from this or that you can be cured from this.

When you can look beyond your situation and into somebody else’s life and try to help them, it will help your situation. It’s that faith — believing in something strong enough that you know the outcome of this end will be for you.

My wing is being fixed so I can fix somebody else’s wing and say, “You know what? At one point in time, I had a broken wing, too.”

We have our tribe. When we move and make an assault on this, together is so much better than going lone wolf. You got an army behind you so it’s not over.

Stay steadfast, everybody. It may seem difficult. It may seem bleak at times, but stay steadfast. Don’t let outside sources influence you. Stay steadfast even in your darkest moments.