Keturah’s Story

Keturah’s Story

After being diagnosed with cutaneous T cell lymphoma, Keturah found her calling in guiding and supporting others going through similar experiences. She is a consultant, advocate, author, speaker, counselor, and an inspiration to many. CRISPR Therapeutics sat down with her to talk about her experiences living with cutaneous T cell lymphoma.

The interview has been edited for length and clarity.

Hi Keturah, thanks so much for talking with us today. Can you introduce yourself and tell us about yourself?

It’s funny, prior to my diagnosis, I would have just yanked out my business card and said, “Here’s my role, my company, and whatnot.” But ten years ago, that changed for me, so I like to start with our [Canada’s] Indigenous People’s “I am” statements.

I am a daughter. I am a sister. I am an auntie. I am a friend. I'm also a patient who lives with cutaneous T cell lymphoma. I have a background in business management, consulting, and coaching, as well as psychotherapy and spiritual care. I am also an author, a speaker, and a blogger. I currently am a caregiver to my mother, and I am a patient advocate.

I really enjoy music, performing arts, reading, travel, walking, being outdoors and being in nature. I'm also an aspiring vegan foodie.

How would your family and friends describe you?

I think they may describe me as brave, courageous, and deeply spiritual. It takes a village to get through a cancer diagnosis – I’m a village person. I'm kind of a go-to and a helper, so if the village were to name me something, maybe ‘wise counselor’, and a woman of strong faith. It’s my natural tendency to fix things and help. And, of course, I am a caregiver in many senses for the people in my life. I’ve also been nick-named the “Queen of Bounce-back” by my loved ones.

You fill a wonderful role for your loved ones. You mentioned it takes a village to get through a diagnosis. Can you walk us through your diagnosis experience?

My sister and I were in Vegas, and she noticed three small, dark spots on my back, which was the start of it all. I like to joke that what happens in Vegas doesn’t necessarily stay there. Then came my “seven-year itch” – seven years of misdiagnoses and deep, painful itching, of growing skin patches, of topical steroids that would work, and then not work, and of not being heard by doctors. It increasingly had an impact on my sleep and quality of life. I just kept saying to them, “I'm not sleeping. This is not a mosquito bite itch. This is in my nerves, and I cannot override it.” It really impacted every aspect of my life.

I finally got my correct diagnosis in 2013, on the day after my birthday. It’s a gift you never want to receive. And yet it was a name, a diagnosis, and the beginning of some kind of sanity.

It wasn't until I didn't look okay that they finally went to that next level of biopsy. I was visibly ailing from something greater than what had been put into the medical notes. I pulled off my wig, pulled off my clothes, and I didn't have any cream on my body to shine it up. I had to step out of my usual, “I'm going to put myself together because that's what I do.” I had to abandon that and be really vulnerable and say, “Please take another look.” That was self-advocacy in action. The dermatologist immediately ordered another type of biopsy and prescribed me sleeping pills. He heard me.

I was diagnosed with stage 1B mycosis fungoides, a type of cutaneous T cell lymphoma.

Would you mind talking a little bit more about the overall impact that cutaneous T cell lymphoma has had on your life?

I usually map it into domains because it touches each life domain. I was emotionally drained because I hadn’t slept. I had this chronic itch, rashes, and open wounds that became tumors. Physically, it’s a visible, disfiguring disease. My confidence was shot, and it was challenging to show up for anything. My personal, professional, and public lives fell apart during that time. Now I look back and realize I wasn’t even myself. My ability to think about the possibility for a future – a good future – just wasn’t there.

You’ve spoken about how part of getting through all this is building a support system for yourself and relying on that village. How did you go about that? You’re someone that shows up for others – how did your village show up for you?

I have a friend who has helped me with wound care with natural remedies throughout my journey. Others would make food so I could conserve energy and helped me with other practical chores like grocery shopping, driving me to appointments, and attending treatment sessions with me. I also have a godmother who would just stay on the phone with me when I needed. She would make food, she would pray with me, she would hug me, she would hold me.

What I learned is that it’s not a journey that every friend or family member can accompany you on, and that’s okay. It’s a learning process of acceptance and surrender; recognizing that there will be some things you need to let go, and some people that won’t make the journey with you. And it’s also about gratitude, right? Because you’re grateful for the ones who do come on board.

That’s well said. You’ve also shared with us previously that you frequently do speaking engagements to share your story. How did you get into that?

I didn’t want to live in shame and wanted to get past the “why me?” feeling. Very early on in the journey, I kept hearing about how rare the condition is, and I’m blessed to have found a doctor and gotten the diagnosis. I had heard a sermon and this line that rang out to me was, “From your deepest pain, you will have your greatest ministry.” I realized I can help others. I can encourage people in this unique space. It was a calling to do that. It fills me up when I have the opportunity to meet with someone going through this and tell them, “Don’t give up.”

I was seeing a therapist before my diagnosis, so I was already on that journey, and then I doubled down on it and pursued graduate studies in psychotherapy. I’ve always been drawn to counseling and have certainly been a beneficiary of it, so I’m a big believer. I thought that it would be a helpful skill set to better listen and encourage others.

Speaking of encouraging others, can you tell us about your hopes for the future? What messages do you have for others who might be going through a similar experience with cancer?

My message and recommendation would be to create a village that will support your well-being by surrounding yourself with the best people, best health team, and best environment for your situation.

My hope is that no one has to go through this alone; for everyone to know there is community out there. I think we’re still in the early stages of embracing the idea that people can live with cancer. The “C-word” [cancer] has all this stigma attached to it. There’s a misconception that you can’t live a meaningful life with cancer. I am more than my condition. We are more than a diagnosis. And studies show that those with resilience and a positive outlook tend to cope better. There’s a soul element to it – I think cancer care is one aspect, and soul care is the other.

I’m so fortunate that I’m still here, but I believe there is a desperate need for new and more accessible treatment options for this condition. I am excited that research is underway that will potentially address that gap. Together, we can keep hope alive.

Keturah has not participated in any CRISPR Therapeutics studies. Keturah was compensated by CRISPR Therapeutics for her time.