Man Up to Cancer: Chuck Aiken on Living Life Beyond Your Diagnosis

Cancer. Chemo. COVID. He calls it the "3 Cs," and for a period between 2019 and 2020, all three arrived at once. In November 2019, Chuck Aiken was diagnosed with acute myeloid leukemia (AML). What followed was not a single battle but a series of them: intensive chemotherapy, a stem cell transplant delayed by a global pandemic, and now, years later, a return to treatment and a possible new diagnosis with his liver.

There is a version of his story that focuses on everything he has been through since. But this version is about how Chuck, while navigating all of that, found something worth holding onto in a community of men who understood and became the person responsible for making sure thousands of others could find the same. As Director of Membership and Onboarding at Man Up to Cancer (MUTC), he oversees The Full Moon Commons, a community built on the belief that men do not have to white-knuckle their way through cancer alone.

To shed light on men's lived experiences of cancer, Our Cancer Stories is partnering with MUTC. In this interview, Chuck speaks about mindset, masculinity, and what it really looks like to put his guiding belief into daily practice: that you have cancer, but cancer does not have you.

Acute myeloid leukemia (AML) is a cancer of the blood and bone marrow that develops rapidly, often leaving little time between diagnosis and the start of intensive treatment. It occurs when abnormal cells crowd out healthy blood cells, impairing the body's ability to fight infection, carry oxygen, and control bleeding.

Treatment typically involves aggressive chemotherapy and, in many cases, a stem cell transplant, in which a donor's healthy cells replace the patient's damaged bone marrow. Even after a successful transplant, AML can return, and patients may live with ongoing monitoring, treatment, and uncertainty for years.

To set the scene for us, can you walk us through what those early months looked like, from the first signs something was wrong to the diagnosis itself?

“Three to four months before my diagnosis, I was dealing with fatigue and low energy. I was at a professional football game, and I couldn't get up the ramp. That was the moment I knew something was really wrong.

I went to urgent care. They did a bone marrow biopsy the next day, and a few hours after that, my oncologist came in and said, ‘You have a simple kind of cancer. We can treat it outpatient with a pill.’ A few hours later I was being sent by ambulance to a bigger hospital. It was not so simple. The leukemia was very advanced. I was told that without a stem cell transplant, I had six to eight months.

I spent about four months in the hospital on incredibly heavy chemotherapy. A donor was found, and I travelled to Memorial Sloan Kettering in New York City for my transplant. On the train back from a consultation, my phone rang. New York City had just shut down because of COVID. The transplant was pushed back three to four months. I call it the 3 Cs: Cancer, Chemo, and COVID. I eventually had the transplant. Three months in New York. As anticlimactic as a stem cell transplant sounds, the preparation and the process were terrible.

Last year, I was back on chemotherapy with weekly transfusions. And now there are some liver issues we are watching closely.”

How do you live with that level of ongoing uncertainty, and has that gotten easier over time, or just different?

“People always ask me how come I'm not depressed. How come I'm not upset. And honestly, it does play with your head. You're always wondering when the next shoe is going to drop.

But the way I see it, I get to wake up. That is a new day I have to conquer. I focus on what I have to do the next day, not on everything that might go wrong. And it helps to have guys to talk to. That is really why MUTC exists. Men tend to withdraw when things get hard. We exist to make sure they have a safe space to talk instead.”

Has there been a moment in this illness where you surprised yourself, where you responded in a way you didn't expect?

“In the beginning of this journey, I withdrew from everything. It affected my relationship with the person I was dating. I kept things bottled up inside and started to spiral. That surprised me, because I didn't expect how much staying silent would cost me. I needed to really learn how to talk. It taught me that talking things out, actually speaking about your emotions, is not optional. When you keep it all inside, it builds.”

What did asking for help actually feel like? Was it a decision you made, or something that happened gradually?

“My best friend from elementary school, we have been friends for over 40 years, is my healthcare proxy and my caretaker when I need it. Having that person in your life, someone who is your ledge to step on and lean on, makes an enormous difference.

But the other part of it was MUTC. I was lying in a bed in a New York City apartment waiting for my stem cell treatment, and I signed up for a weekly Zoom. That was how I found the community. And I met this guy from Texas called Danny Riggs. He was one of the original members. He said: ‘It is okay to be scared, it is okay to be you, but it is not okay to stop fighting.’ He was the first guy I got a real hug from in MUTC. A big inspiration.”

Has anyone in the community ever said or done something that genuinely shifted the way you think about your own illness?

“Danny Riggs. I was complacent. I was staying under the blanket, withdrawing. Danny challenged me to get out. He would check in on me by call or text and push me out of my comfort zone. He had been fighting his own battle for a long time, and seeing him do it made me think: if he can do it, I can do it too. He became the model for how I try to show up for the men who come into our community now.”

What does a man have to unlearn to actually get something out of a community like this?

“For men in general, and I am speaking for myself here, we are not great communicators. We are not great at being open with our feelings. But if you ever come to one of our events, you will never see guys say ‘I love you’ and hug each other as much as you will there. That is what unlearning looks like in practice. You share your emotions. You talk about fear. And you stop letting the things around you define who you are. We have cancer. Cancer does not have us.”

You support thousands of men through cancer while navigating your own. What part of this role is harder than anyone on the outside would guess?

“We lose a lot of guys. When I say they have won their battle, I mean that sincerely: no more doctors, no more pain, no more uncertainty. But losing someone you have been fighting alongside is hard. The survivor's guilt is real. You think about the guys with families, with small kids. And here I am. That is probably the hardest thing about this role. You can't control what you can't control. You just push forward.”

When a man in the community is really struggling mentally, genuinely in a dark place, what have you learned actually helps?

“We have something called the Full Moon Commons, an always-on chat space. If a man is going through a hard time, he types in the chat, and I can guarantee that within minutes, three, four, five guys will respond and say, ‘Let's talk’. Just knowing that option is there is a comfort on its own.

We also do bi-weekly virtual meetups where men can talk face-to-face. And we always encourage men to reach out to the social workers and counsellors at their cancer centers for professional support as well.”

What do you wish the people closest to cancer patients understood better about what that mental weight actually feels like?

“Giving someone the pity party isn't great. To be blunt, it sucks. Don't just say 'I'm so sorry you have cancer.' What we need is a cheerleader. Someone who says: how are we going to fight this? What can I do to fight this with you? Instead of planning my funeral already.

People being sorry is a normal human response. A cancer diagnosis is not a positive event. But on the other hand, we need someone who can stand by us and ask how we can fight this together. We are not fragile. Treat us normally. Show up.”

What does living well mean to you now?

“You must find your joy in things. Going for a car ride. Going to a lake and throwing bread at ducks. You cannot let your entire life be defined by cancer alone. Make the decision to fill your life with things that bring you joy. We have cancer. Cancer does not have us.

My focus is on how I am going to conquer the next challenge, not on endlessly worrying about what might come next. I also started a programme at the YMCA called LiveStrong, for the second time now. Finding those anchors matters.”

What has cancer shifted in the way you think about masculinity, about what it means to be strong or to need people?

“I have never heard more guys tell each other they love each other than I have inside MUTC. When you get diagnosed with something that can potentially end your life, masculinity goes out the window. It becomes about survival. You are still a man at the end of the day, even if you are scared and uncertain. Those are human emotions, and they are natural. It is okay to be scared. It is okay to ask questions.

It is like driving and realizing you do not know where you are going. It is okay to say you are lost and ask the person beside you for help finding your way. That is not weakness. That is how you get where you need to go.”

What are you still figuring out?

“Right now, there are some new liver issues, a possible hepatocellular carcinoma. Some days you feel great, and then you don't feel great again. It could put you in a dark place very quickly if you let it.

So I make sure I do things to get out from under the blanket. I am an active person, so I will make the decision to go for a walk, to make plans to see people, to not block myself inside my house. It is that mindset. What am I going to do to conquer this?”

If you could go back and say one thing to yourself in those first weeks after diagnosis, not advice, just something true, what would it be?

“You've got this. When you are given a cancer diagnosis, the uncertainty is instant and overwhelming. Someone sent me a poster. I am a huge Star Wars fan. It was Yoda: ‘Do or do not, there is no try.’ We either choose to do something or we don't. I chose to fight and see it through.”

What is one question you wish someone would ask you about this experience that nobody ever does?

“How do you best respond to somebody who has just been told they have cancer?

Because the answer is not: tell them how sorry you are, or mask the discomfort with sweet words. Don't treat us like we are made of glass. Don't disappear because you don't know what to say. You find out very quickly who is truly there for you. Be the person who shows up and asks how you are going to fight this together.

This is something we all go through in difficult times. People come, and people go. You don't have to be going through a life-altering disease. Life in general gets pretty hard sometimes, but it is how you decide you are going to face it, and not let adversity decide what you can or cannot do.”