KDE

Cancer Thriver/ Writer / Public Speaker

Kelli Devan Edwards

Underscore_SF, February 2023, “A Cancerous Mass; A San Francisco Farewell to an Old Bastard”

Underscore_SF, November 2022, “My Frisco Addiction; The Ace to My ‘Cancercard‘”

LACNETS Website, October 2022, “Cancer Thriver: The Next Chapter”

Journal of Expressive Writing, October 2022, “Queen of Death“

Orange Coast Magazine, August 2022, “Crystal Clarity in Restoration“

O.C. Writers Website, April 2022, “Creating Like a Kindergartener“

LACNETS Website, October 2021, “Cancer Thriver“

California Writers Club Literary Review, 2021, “The Wordsmith”

Living During Cancer.

This is my journey of living with metastatic neuroendocrine tumor for 19 years.

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So you’ve got cancer—now what?

If you are reading this, I’m sorry. If you’ve made it to my site, it probably means you or someone you love has been diagnosed with cancer. I also want to say good for you because you are attempting to cope.

I was diagnosed with two types of cancer in my colon in 2003: colon cancer and neuroendocrine tumor (NET). The stage 1 colon cancer was removed with surgery and hasn’t returned. The NET (formerly known as Carcinoid) had already spread to my liver and was considered metastatic. I have undergone just about every treatment under the sun available to patients with NET. 

I’ve consulted with specialists nationwide, but my home base is Cedars Sinai in Los Angeles where I serve as a patient mentor for the Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS). As of 2022, I am still alive and well, despite a grim prognosis. That’s the gist of my journey. You can read the details in My Zebra Tale. When I was first diagnosed, stories of hope were manna from Heaven. I devoured them ravenously. This is my way of paying it forward—thank you, Susan Anderson.

On this website, I will share what I’ve learned living with cancer for 19 years by posting stories sprinkled with tidbits of wisdom I’ve picked up along the way. I don’t have any leanings for or against fad diets, miracle cures, faith healing, coffee enemas, or vegemite sandwiches. Do what works for you! I feed off the love of family and friends. 

The most important lesson I’ve learned is to love and cherish myself.  I’ve been a special education teacher for 30 years and have been transformed by my students’ resiliency.  I’m deeply spiritual, Christianity being my path to God. And, I am obsessed with guinea pigs. Bubblegum, my favorite, is a fat little white ball of fluff with pink ears. Let’s hear it for the guinea pigs—all of us who have participated in clinical trials.    

I’m not cured of my cancer; it’s monitored and managed. Most of the time I don’t have to think about it, but sometimes it’s a back seat driver, loud and annoying. And sometimes it makes me cry—a lot.  And sometimes, for long stretches, I forget I even have it.

Okay, enough of me, back to you. Hello. Glad to meet you. If I could call out your name from this site, I would. Know all I share comes from a place of love. Even though we haven’t met, I believe we are all connected. You can reach out to me through this website, and I will be happy to chat with you.

I’m deeply sorry if you are dealing with a cancer diagnosis. Please know you are still you. You are loved. You did not do anything to deserve cancer. Our brains like to connect the dots and search for logic where there’s none to be found. Nobody deserves cancer. You will torture yourself trying to figure out the hows and whys. At the end of the day, shame and guilt are toxic and only make trauma worse.

Here’s my pledge to you:

  • I won’t claim my way is the best way.
  • I will share my stories with honesty and vulnerability.
  • My stories illustrate a woman who did her best to climb out of a deep pit of despair and got pretty scratched and bruised along the way. 
  • You will find no statistics on this site. If you want those, I highly recommend you go to a reputable source and take them with a grain of salt. Preferably, do so with a loved one or medical professional.
  • Cancer is only part of my identity. I will also share stories about my family, my career in teaching, and, most recently, the transformative two years I cared for my father with dementia.  

If you’re wanting to know if there is life during cancer, or if you need a hope-lift, this was the right click for you!

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8 thoughts on “KDE”

  1. I’m looking forward to learning more and hearing the support from your experience and your heart. I’m getting my sandostatin injection now, so will need to follow up again later. There is a big void in my like because my only sister died from NETs last December and my mom passed from colon cancer and lymphoma in April of 2020, so I don’t have family who understands what I’m going through and all of the little nuances of having a rare form of cancer.

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    1. Hello Laura,

      Thank you for your kind words. Did I hear you correctly… you have NETS and your only sister died from NETS? That’s heartbreaking… and then to lose your mom to cancer as well is devastating. I’d be happy to talk with you or just listen. It is true that other NET patients can offer a level of understanding that feels authentic. My darling little 5 year old cousin was just diagnosed with neuroblastoma. I’m floored by the news. Isn’t there a limit as to how much one family can take? This cute bouncy little girl just went through her first (of many) rounds of chemo. Despite my heartbreak, I’m looking God’s grace in this seemingly impossible situation.

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      1. Hi Kelli,

        I’m very sorry to hear that your young cousin also has cancer. Hopefully her doctors can treat that neuroblastoma and she has a long, healthy life! It’s awful that children have to suffer through so much pain and the fear that goes along with it, for themselves and their families.

        Thank you for your offer of support. I joined LACNETs to find people like me who understand this disease, especially since my sister had died and she truly was the only other person who knew what NETs are like, even though the disease is different for everybody, even siblings. We both were tested for the genetic marker MEN-1, but it didn’t show up in either of us. I’m convinced that our cancers, which were diagnosed at the same age (she’s three years older than I am), were environmentally caused because we grew up very close to a petroleum field that was on the McColl Superfund Site of toxic sites; but that’s a conversation for another time. My mom was also diagnosed in her mid-50’s, but not with NETs. She was diagnosed with colon cancer. I don’t think they knew what NETs were at that time, and over at Kaiser Hospital she had an oncologist assigned to her, so there was no specialization in NETs or other type of cancer. Her treatment at the time was all pretty generic.

        I’m sad she had the disease, but also thankful that when my symptoms showed up, I had an idea of what may have been the cause. The endocrinologist must have thought I was nuts when I asked him to check for chromogranin A when they did the bloodwork! But it came back positive and I was on the road to cancerville again. I was diagnosed with non-hodgkins lymphoma in 2012 and, after treatment, it went into remission in 2015.

        I am grateful to find people like you who are so generous with their experiences and understanding of what living with NETs is like. I have been reaching out to find other people like me who are willing to share the experience with me and communicate what it’s like for them to go through this, too.

        Thank you and have a wonderful day!
        Laura

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  2. Hi Kelli…
    I love your site it inspires me to keep fighting this grim NET DIAGNOSIS. I would love to keep reading your stories they make me feel a lot better. Thank you.

    Jun

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    1. Jun,
      Thank you for your kind words. I’m happy to hear I can provide a glimmer of hope. But also know I empathize with your pain. NET is a grim diagnosis with so many confusing aspects. I’m here if you ever want to talk.

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  3. Hi Kelli,

    I hope alI is well. I was diagnosed in January with stage 3 High grade Neuroendocrine carcinoma in the rectum. I have since then completed four rounds of chemo and radiation. The tumors have shrunk but not gone completely. I am at the point where I’m seeking a second opinion and want to connect with those that have experienced this. I just had an MRI today to see if it has spread to my liver. As you know some days are harder than others but I have so much to live for. I would love to talk to you when it’s possible and convenient for you.

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  4. Kelli, you’re a light of love, a blessing from God, and a wealth of knowledge. We share much in common, too. I was diagnosed in May of ’22 with NET (never had heard of it before)-primary in the pancreas (9 x 9 cm), mets to liver, lymph nodes, skull, neck, spine, hip, ribs, and pelvis. No one here will operate, although I’ve reached out now to specialists. I live in SW MO, close to Branson. I just joined LACNETS. Last Wednesday I participated in a ZOOM virtual support group where I “found” you. My twin sister and I have watched your videos. You ooze with the love of Christ. Like you, although I LOVE coffee, I lean on my faith, wisdom, and the love of family and friends. I don’t jump into fads. But as an educator, I’m a researcher. Through discernment from the Holy Spirit, common sense, and good judgment, I try my best to live hour by hour. I truly look forward to knowing you more. THANK YOU for being here! You’re a THRIVER! God bless you, Kelli, and your entire family.

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