In Her Words: Casey Kang Head

At age 31, Casey Kang Head was diagnosed with a rare form of acute lymphoblastic leukemia. After a long road of treatment involving immunotherapy, chemotherapy and participation in a clinical trial, Casey's cancer thankfully went into remission. Seven years later, she's now using her experience to help others as a cancer survivorship coach. Through her practice, she empowers women to be physically, mentally and emotionally stronger and enables them to holistically thrive after cancer. She says, "Dealing with the mental and emotional fallout is so much harder than just going through the physical treatment." To read more about how Casey arrived at her course of treatment, what she wished she knew prior to her diagnosis as well as how cancer completely changed her life, see our latest In Her Words story below. 

Name: Casey Kang Head

Age: 38

Location: Chicago, IL

Current Health Status: Remission

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Tell us about yourself.

I grew up outside of Chicago my whole life. I have an older brother who was my stem cell transplant donor that saved my life. I love sports and have always been very active. I have a puppy named Lily that I just got a year ago and I am completely in love with her.

When were you diagnosed with cancer?

I was diagnosed on Friday, February 14th at the age of 31 with acute lymphoblastic leukemia. I was in the ER at the time because it was the fastest way to get blood test results. I have no family history of cancer and was completely caught off guard. I thought at the time, worse case, I was anemic.

What were your first thoughts when you were diagnosed?

I think I literally blacked out for a second. And then, I remember I asked my husband, "What does the paper say? Did he say cancer?"

How did your friends and family take the news?

I couldn’t even say the words, "I had cancer" for about a year. My husband had to tell my entire family, including my dad, when he met us at the ER that night. My dad held it together in front of me but I think he was scared just like everyone else. It was really hard for my family to understand.

Describe your treatment and how you arrived at that course of action.

I was in treatment for a long time with a protocol that lasted 18 months (with over 10 different chemotherapies). Four months into treatment, I had a stroke and seizures that left me temporarily paralyzed on my left side. So, while I was going through chemo I still had to learn how to talk, eat and walk again. It was a dark time for me, especially since they didn’t know if I would regain function. Once I finished the protocol, I relapsed 7 weeks later. I tried an immunotherapy that failed and was set to go on a CAR-T Cell clinical trial that ended up getting shut down. I had no options left at that point because they said my body was not responding to chemotherapy. So we waited and one of the doctors suggested an immunotherapy called inzotumap that was for refractory AML patients.

There wasn’t a lot of information for us at the time with only two pages of research to go off of, but I had no other options at the time. There was another clinical trial, but it was full, so I was basically just being kept alive. My medical team wrote a letter of compassion to the FDA and drug manufacturer, and I was approved a couple months later. I had four rounds of it and was put into remission. That is when I immediately was told to go into the hospital yet again for a stem cell transplant. More chemo and 10 rounds of full body radiation. I had my transplant. Six months later, as I was recovering, I relapsed again. So instead of doing more stem cells, we tried the immunotherapy. After four more rounds, I have been in remission ever since.

Were you able to work through treatment?

I worked through some of my treatment, but had to take a lot of time off from it.

Where and how have you found the best care?

I only went to Northwestern Hospital in Chicago  because that is where I was always going for appointments.

Have you received any additional support or alternative therapies? If so, what kind, and have they been they beneficial?

I did a lot of acupuncture, reiki, exercise and meditation.

Who have been your biggest supporters? Who makes up your cancer tribe?

My dad, mother in law and husband were my biggest support system all through my treatment. They really were the majority of how I got through everything.

What has been one of the most challenging aspects of the experience for you?

It is definitely the social isolation, especially for me, because none of my friends had cancer so I couldn’t relate to anyone around me.

What is one thing you wish you knew before you were diagnosed?

That coming out of cancer is harder than the actual treatment. Dealing with the mental and emotional fallout is so much harder than just going through the physical treatment. Which is why I do what I do now, a cancer survivorship coach helping empower women to be physically, mentally and emotionally stronger so they can take back control of their life so they thrive in their new normal.

Is there a particular mantra or inspiration that helps you?

I use the mantra – I am doing everything in my control to be physically emotionally and mentally healthy, every single day.

If you could offer a woman, who has been newly diagnosed, some words of wisdom for her journey, what would you tell her?

That it may suck but you will get through it, you are stronger than you realize.

What are you most proud of in your cancer journey?

That I never once gave up and even when it was hard I proved to myself over and over again that I can do hard things.

How has cancer affected your outlook on life? On illness?

I am a huge advocate for living your life for you instead of doing what others or society want you to do. This is my life and I want to live it in a way that makes me happy.

How have you changed?

Everything had changed for me. I am a much more authentic version of myself than ever before. I am so much more open about what I feel and am willing to share that with others as long as it will help others.